# Joints



## aldra (Jul 2, 2009)

Well

I have have spent ten days in agony with calcium crystals in my foot 

Not my toes my foot and ankle

It’s settled now , not agonising but painful and stiff and I struggle to walk 

And I asked to be referred to the pain clinic as I’m not supposed to take anti inflammatory drugs nor the drugs to shorten the time of flare ups 

And I’ve attended for 8 weeks now , but as yet no suggestion of pain or anti inflammatory medication 



The physios tell me how important exercise is 

But I’m worried

My finger was the last to flare, it has taken weeks to subside from agony to just painful

And now I can now longer bend it 

The joint is damaged 

My foot is taking weeks, I struggle to walk on it, it’s flared up constant times before 

Will that also be damaged ?

And will anyone listen.?

I see the rheumatologist in a few weeks

Sandra


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## patp (Apr 30, 2007)

Sorry to hear this Sandra.

All you can do is try your best with the exercises. Would doing them in warm water help? Physios know their stuff and so it is best to listen. Physios are often trained in acupuncture. If you haven't tried it already it is really worth trying. Even if you have tried it sometimes a different practitioner will succeed. 
I imagine everyone is leaving the drug therapy to the Rheumatologist. Let's hope that he or she has a wonder drug up their sleeve for you.


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## aldra (Jul 2, 2009)

I doubt it pat
She prescribed a drug to cut short the immune systems reaction to the flare ups, and therefore shorten them 

Then went on to tell me I shouldn’t take them because of my kidney readings 

I’m not doubting the exercises , mostly walk more and more frequently 

But almost constant flare ups that last for up to 10 days of really painful joints and then about the same time of just painful and stiff joints, even the bathroom , which is on suite takes some effort to reach

And Im not ashamed to say some days I just have to wee in a bowl, take the forbidden anti inflammatory drug and wait 

At the moment the intense pain in my right foot has subsided to just painful, tonight the mere touch of the sheet will not feel like a raw open wound 

So I have it bound in kinetic tape which means I can now walk around the house and manage a bit of housework 

And when a joint is painful and inflamed with crystals ,trying to walk on it puts strain on other arthritic joints 

The good thing is pain in my hips and knees generated by coping with flare ups is nothing compared to the scale of pain in inflamed joints 

So the fact my joints are generally stiff and painful is bonus when on the rare occasions I don’t have a flare up

I expect to live with pain now

But I was hoping the pain clinic should direct me to a pain expert 

And who knows maybe they will 

But you know, I’m not holding my breath

It has come as a shock to me how quickly my mobility has deteriorated , how my confidence has dropped in leaving the confines of the house I know 

How my feet don’t clear obstacles , and during flare ups how accidentally standing on two levels, be it a raised pavement or rug means I’m no longer stable

So I’ll go occasionally to a supermarket , smooth floors , the van I can manage, always something to hold on to

My arms are good, well goodish 

And if I can crack that trike 

Who knows

Sandra


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## patp (Apr 30, 2007)

Sounds awful, Sandra. I have just a little arthritis in my thumb joint and find myself worrying about the future. I don't know how you cope. Let's hope the pain clinic can do something for you.


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## aldra (Jul 2, 2009)

My thumbs ,my fingers, my hips, knees and feet

My shoulders are now joining in 

My elbows are free as yet 

But it’s the painful flare ups of the calcium crystals

That’s devastating my life

I never know when I get up in the morning

Is it, isn’t it ?

It’s sudden , agonising painful

And all too frequent 

And takes so long to resolve 

And my finger joint I can see , it’s damaged, it know longer works as it should

And I can’t see into my foot or knee

Are those also damaged .?

Sandra


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## patp (Apr 30, 2007)

Ouch! 

Let's hope that the pain clinic has the answer.


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## randonneur (Jan 25, 2007)

The reason crystals form is not drinking enough water, should be a least 2 to 4 litres per day according to the Christie Hospital advice, anti-inflammatory medication damages the kidneys and know to my cost having been on them for years in France. Unfortunately gel only lasts for 2 hours.


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## aldra (Jul 2, 2009)

I drink loads of water 

My calcium crystals are a legacy of a tumour on my parathyroid

Unfortunately unlike gout crystals they can’t be controlled by medication to reduce them

I know that anti inflammatories are not good for kidneys 

But sometimes quality of life out-ways quantity 

I get weary of constant debilitating pain

Sandra


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## patp (Apr 30, 2007)

I am with you, Sandra, on quality beats quantity. I went back on to HRT after we were all scared off it because of the cancer risk. I discussed it with my doctor and came to the conclusion that my quality of life meant more to me than the quantity. By the time it matters I might be dead from something else anyway.
If you have some quality of life then you keep other ailments away by getting out and about.


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## patp (Apr 30, 2007)

Do be aware that, sometimes, they will not prescribe a drug unless you actively campaign for it. They have to cover their backs against being sued I suppose. It took me a couple of, long, consultations to talk my doctor round.


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## Christine600 (Jan 20, 2011)

I'm not sure it's helpful in your situation. But I have been eating low carb mainly for the last few years. In that period I have lapsed a few times and eaten normally. And then I usually get gout after a while. 



So a ordinary high carb diet will give me gout. And changing back to low carb will make it go away again.


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## aldra (Jul 2, 2009)

At the moment I only allow 50 gms of carbs a day, and 800 cal a day 

Albert has lost 1/2 stone in a week 

Well keep at it for 12 weeks or until we lose the weight we require whichever comes
first

I’m an expert on carbs and calories now 

I don’t know what I’ve lost , I refuse to use scales to record progress 

I’ll feel my way

Sandra


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## aldra (Jul 2, 2009)

I’ll prob go one more time to the pain clinic 

I get the exercise 

I don’t get that flare ups mean I can’t even walk

I can’t even get to the on suite toilet at times 

I wake stiff and sore 

And yes I know I need to keep going to work it off

And I know that when I keep going there will come a time after about two or three hours when everything stiffenns up again-and I need to rest 

So I need to decide what will l do?

Should I potter around cleaning the house ?

Take a trip to the supermarket , the floors are smooth , so when I’m tired I won’t trip on different levels 

When I’m tired my feet don’t pick up, I think they do, but they don’t, even at home a well known rug is a problem 

But how can I explain that ?

A step becomes a problem, when I’m tired 

And I’m tired far often than I feel I should be 

Joints ache non stop 

Often all night, disturbing sleep

Inflamed joints incapacitate me for days on end 

And if I need to accept that

Well I’m really struggling 

This is no longer the me I once knew 

And I’m not doing so well at getting to know my new me

Sandra


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## jiwawa (Jun 22, 2007)

Life sounds pretty tough at the moment Sandra. I hope the pain clinic finds a way to help.


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## Christine600 (Jan 20, 2011)

Getting to know the new less functioning take a long time. For me it took years after having to stop working. And I'm sure I still know everything. Only way to find out what will work and not is to try. And fail. And try something else. 



And when my body wasn't up to doing everything I wanted it to I learned to prioritice. No choice when I use weeks to do what I used to do in a day.


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## patp (Apr 30, 2007)

Why only one more time to the pain clinic Sandra? If they are getting to know your problems they will want to continue to try to help. Often treatments evolve, and they can not do that if you do not keep reporting back on how things are working, or not.

When vets treat animals it is often a case of trial and error because the dog cannot report back. They get very frustrated when the animal does not return for follow ups so that progress, or lack of it, can be factored into the next course of treatment.


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## aldra (Jul 2, 2009)

Why

Because the physio goes on about exercise, his circle begins at exercise

My circle begins at pain relief to enable me to complete the circle

I know to keep going to reduce stiffness and pain, I know to stop before the stiffness and pain reasserts itself

I know flare up means the onsuite toilet is a painful unsteady miles away , the stairs are nearly impossible , I won’t really sleep for several days, I’ll doze and the pain will wake me again and again throughout the night

going out I rarely consider that now

But the van means I can hold on to things in flare ups

I need some way to reduce the pain

And in desperation I’ve gone back to ibroprophin , I try to limit it ,but I have seen asking for help for nearly two years 

It doesn’t cure but it easies pain and stiffness

Sandra


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## patp (Apr 30, 2007)

I think you have to decide whether you want relief from pain or a longer life. I did this when my doctor was reluctant to prescribe HRT. He explained all the risks to me and I explained to him the miserable life I was leading. We decided, between us, that the risk of the drug was worth it for quality of life. I knew he would not prescribe it if it was really, really dangerous but at the end of the day what is life without some sort of quality in it. It took a couple of consultations for me to persuade him but he saw my point of view in the end.


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## aldra (Jul 2, 2009)

True pat,

Without pain relief or means of controlling the frequency of flare ups l have not a lot of life really in terms of getting out 

Fortunately friends and family visit so I’m never isolated and some days are better than others, it’s just never knowing which they will be 

It’s been cold and damp here recently so maybe that has some effect

Really for August the weather is awful and we’ve taken to lighting the log fire so somewhere is warm and cheerful 

Maybe sept will bring an Indian summer, let’s hope 

Sandra


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## aldra (Jul 2, 2009)

I’ve spent the last three weeks unable to walk, hobble rather, without a great deal of pain 

Both feet flared up simultaneously 

So not a crystal flare up as that seems to target one joint at a time 

Now one foot has settled , the other, the left ,taking its time 

Which is taking its toll on the knee and hip at that side 

And I’m not really complaining because I didn't contact the gp

And my appointment with the rheumatologist is a couple of weeks away 

I’m becoming resigned to spending most of my life in flareups and aftermath 

Getting around the house is a challenge now 

My clean house a thing of the past 

And know-one seems to have the answer 

I think fondly of the young physio , exercise , as I struggle to reach the on suite toilet 

Which seems so far away when joints flare 

And now I’ve forgotten in three weeks + the feeling of actually walking rather than hobbling unsteadily in pain 

Sandra


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## patp (Apr 30, 2007)

There was a huge article in the Telegraph yesterday about inflammation. Drawn form experts all over the world. The bottom line was that we should eat healthily (along the lines of a Mediterranean diet) and exercise more. Any exercise is good as it stimulates the production of various chemicals that fight inflammation. If we do not produce those chemicals by exercising all sorts of things go wrong in the body. One of them is extreme pain but many others too.

There was also a programme on Radio 4 about pain and the prescribing of pain killers. Several callers reported an improvement in their pain management when they attended Pain Clinics. Some, though, were waiting for a year to get an appointment! If you are able to get appointments then it would seem madness not to go and take up everything that they offer. Some people were offered counselling alongside the other treatments and reported that it had the best effect of all on their well being as it opened them up to trying new treatments and ways of managing their lives.

We are so lucky that we have access to free treatment. The people that enter the field of pain management must have lots of knowledge but need to be listened to in order to gain benefit.


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## jiwawa (Jun 22, 2007)

I feel for you Sandra with this debilitating condition.

I caught part of the radio 4 programme Pat mentioned and while prescription drug addiction is a problem, I'd agree with something else Pat said earlier - if your only way to have some kind of a life now is to take something that might cause problems further down the line.... I think that's something I'd be prepared to live with (or not!) 

Obviously I'd think differently if I were younger but I'm at an age where other things could get in the way - stroke, heart attack, dementia.... - so if I could get on with my life now, pain-free, I'd go for it.


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## aldra (Jul 2, 2009)

Yep so would I Jean

Unfortunately it just takes the edge off it 

But that’s a bonus at times 

It’s madness in 2019 you need to weigh up can you manage a trip to the supermarket 

An outing where floors are smooth , and the car is just outside if things go wrong 

Sandra


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## jiwawa (Jun 22, 2007)

Is there alternative pain relief that might suit you better?


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## patp (Apr 30, 2007)

Just keep nagging at them until they give you something that works. Be quick because the Radio 4 program was all about how we are going to be restricted in future so that we don't become "addicted". Well, some people would love to become addicted to a life free of pain! I take sleeping tablets. I am told that they are addictive. So what?! I don't mind being addicted to a good night's sleep for the rest of my life.

One of the dogs which we fostered was diagnosed with severe spondylosis (bony growths on the spine). Poor thing was in agony when she came. The vet just kept upping the medication and adding in new ones until we got her comfortable. Did it matter that she might be addicted? Did it matter that her life might be a bit shorter? 

As for the physio starting the circle with exercise - that was the major point in the article that was of benefit to ridding the body of the inflammation. The physio is an expert and would not be there if their advice was not producing results.


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## aldra (Jul 2, 2009)

Well it’s not what I feel

I’m not talking pain

I’m talking excruciating pain

All those who have an attack of gout hands up

Can you describe it ?

Can you describe the touch of sheets or anything else on that joint

Do you sleep well?

Mine is pseudo gout , calcium crystals 

The crystals cutting into my joint like hot knives 

My immune system attacking the foreign body , red ,hot, swollen 

And I feel ill

So I must confess getting up and walking it off

Is totally unrealistic 

Am I afraid of the frequent attacks?

You bet I am 

It’s wrecker my life 

Sandra


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## jiwawa (Jun 22, 2007)

When my BIL was in a hospital bed totally unable to exercise himself, the physios would rotate/flex his ankles n wrists, extend his arms and legs. This was, I believe, to try to maintain some level of muscle tone in case he should be in the situation in future where he might attempt to walk.

Is that something you could manage? Every little helps!


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## aldra (Jul 2, 2009)

Yes I try Jean

I don’t just give up 

And I’m not that good between flareups 

Arthritis joints stiffen and ache , and I walk them off around the house , not outside much as they have a habit of suddenly reversing to stiff and painful if I overdo it 

But in flare ups I really struggle 

And struggling to walk on inflamed joints ?

Is that good 

And that the fact I don’t know ?

Is that good 

And why has no one answered me

Do they think I’m making up the degree of pain , the sheer impossibility of walking on them other than struggling to the toilet 

And if I was stronger ,better , more able to cope with pain 

Is it my fault ?

Sometimes I think it’s my weakness , my fault 

Because I’m even struggling to feel confident on the tricycle 

It never was me but maybe now it is 

My grandson says, grandma you are nothing like your age , you are young, you talk to me and understand what I’m saying to you about my life and problems 

I come for advice, and support 

From you and grandad

You will live forever 

And I try to tell him gently 

That we won’t 

We are the Alfa, mater of this family 

But they are well able to take over I think

I just don’t feel on a personal level that I can manage living with this 

Sandra


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## jiwawa (Jun 22, 2007)

Do you use a 'walker' or similar kind of aid? Would that help to take some of the pressure off your joints?


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## aldra (Jul 2, 2009)

**** Jean

My mind feels young

My body old

I think I’d really give up if I needed a Zimmer frame 

Sandra


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## jiwawa (Jun 22, 2007)

Not a zimmer frame Sandra, a rollator. They're much more manoeuverable (spelling?!)

And not to use all the time, just when movement without is virtually impossible. 

I don't know if it WOULD lessen the pain but surely, in your desperate circumstance, it's worth a try. If it did, then you get a bit more exercise which leads to being more fit to take a bit more exercise. It's a win-win. 

When I see someone out and about with a rollator or an electric buggy I never think 'What an old critter'. I always think 'Good on you!!' - and I hope I do the same when I get to the stage of being less mobile.


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## aldra (Jul 2, 2009)

Have been to see the consultant Professor today

My liver is fine, some signs of fatty liver but very mild 

And in keeping with the majority of the population 

Not due to iron overload

But to inflammation 

I asked him is it due to fatty liver overload ?

No, the liver scan does not identify that as the cause ,probably due to arthritic inflammation 

The inflammation needs to be addressed 

Gosh I wish he was the one to address it 

Because I’m beginning to feel it’s my fault

If I was stronger, braver etc 

If I could walk on broken glass shards , knees that throb and hips that threaten to give way

Bones in feet that seem to crumble 

And sleep though pain 

And yet not let it be my master

“You’d be a man my son”

Sandra


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## jiwawa (Jun 22, 2007)

Part of finding a solution is discounting the non-solutions Sandra, so don't be too disheartened. Did he suggest a next step? Or is there a next step in train?

And don't be blaming yourself, you'll only get depressed.


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## aldra (Jul 2, 2009)

No he’s passed it on 

The inflammation is arthritic he feels 

He’s seen a finger swollen to beyond it’s size, now deformed

Feet that I can hardly walk on 

Which is not his domain

The liver is and it’s fine

But he took the trouble to say 

The immflamuation needs to be dealt with

No way in 2019 should joints be deformed by arthritis 

Speak to the rheumatologist and demand investigation

Sandra


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## patp (Apr 30, 2007)

And he is being diplomatic about his colleagues! What he really wants to say is "why the hell haven't they sorted this poor woman's pain out". So you must read between the lines and DEMAND that the rheumatologist sorts it out. Just keep turning up and telling it how it is. Do not be brave. Just keep telling them exactly how it is again and again. 

They will go by how many visits you have made and how much complaining you do to decide how great your pain is.

I have had several conditions where only my persistence has paid off in getting the treatment needed. I have witnessed, too, the same in veterinary surgeries. The dog that keeps returning, with no improvement, gets an upgrade in attention from the vets. Being passive and compliant will get you no where.


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## aldra (Jul 2, 2009)

I must admit

I’m really beginning to accept 
I’m done for 

Just leave me in my house

Il potter around
Relieve the stiffness

And rest when it reasserts itself

Occasionally il go for it

And venture out to the supermarket 

Smooth floors

And then I’m out

I need curtains

But as yet I can’t make that trip

I’m rubish, my joints define me

I sometimes think I’ll beet them

But as yet I can’t

Sandra
P


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## patp (Apr 30, 2007)

Of course you CAN. It is whether you will or not??


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## aldra (Jul 2, 2009)

The drug I am about to start is methotrexate

Used in chemotherapy to suppress the immune system

Sounds a bit drastic to me

Causes hair loss and requires fortnightly blood tests to monitor it 

At the moment the steroid injection is still giving me relief from the pain and stiffness and I can walk , the only side effect is night cramp 

I think I need to talk about it before I start taking it so I’ll phone my GP tomorrow 

Sandra


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## jiwawa (Jun 22, 2007)

If you're worried about the new drug and you're already getting relief from the steroids.... might be better to stick where you are, but taking advice from your Dr.


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## patp (Apr 30, 2007)

Do keep an open mind, Sandra. Remember you are talking about the NHS here. They would not go around giving you drugs that they do not believe are right for you. 
Yes, by all means see how the steroid injections work. I may be wrong but I think that they are not used long term. Why would they offer you something else when they have the injections? There must be a reason. Perhaps they cannot be given long term? Perhaps they stop working in the long term?
It is all about balance. Quality of life is paramount in my book.


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## aldra (Jul 2, 2009)

I agree pat
But look it up , high danger priority , no one else must touch the medication, hands to be washed immediately after contact with the tablets 

Side effects frightening , hair loss, nausea and mouth sores and ulcers the minor ones 

But I guess it’s to switch off my immune system which is attacking my joints 

I’ll speak to my GP tomorrow 

I guess I can always stop taking it if I’m worried 

Sandra


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## JanHank (Mar 29, 2015)

Are these side effects a can happen or will happen. Doctors here think the side effect warnings in these leaflets should be left out because most of them are just a very tiny risk and don't happen, they just scare the patient, but it is the law they must be included in the instructions even if it's one in a million that can be effected.


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## aldra (Jul 2, 2009)

Im pretty sure the hair loss and mouth sores are a given Jan 

Been prescribed B12 to help with that 

I’m only looking at the side effects in the “likely category “ which include nausea,headaches and vomiting

Couldn’t get a telephone consultation until Thursday with the doctor 

Have got a direct line to the rheumatology nurse though, I may phone on that number 

I suppose I’m just a bit anxious, obviously I want to relieve the joint pain and stiffness long term ,and to halt the destruction of joints so I guess I’ll need to at least give them a try 

Sandra


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## patp (Apr 30, 2007)

That's the right attitude! Just give them a try. It is very hard to see them giving you drugs, that probably cost a fortune, if you are going to be worse off than when you started. Try not to google or read too much information. Remember that the doctors are the experts and that drug manufacturers will cover their backs over the tiniest details.


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## JanHank (Mar 29, 2015)

Sometimes ignorance is bliss, the more you read the more worried you will become.


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## patp (Apr 30, 2007)

My HRT medication comes with the equivalent of a 3 x A4 size list of warnings! All this warning for what is, in effect, a replacement for missing hormones! I have never read it.


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## jiwawa (Jun 22, 2007)

Checked with my sister and her experience -

My sister's husband had methotrexate to reduce the inflammation of his rheumatism. No problems - he was able to handle the pills ok but anyone else needs to wear gloves (as their body doesn’t need the methotrexate to build up in their system.) They can kiss, have sexual relations with no consequences- all in all it’s an ok drug to take (she says). All the chemo tablets give you these warnings - methotrexate is a gentle drug (she says, n she's had a few.) Her husband was on 6 tablets once a week - don't know if they do different 'weights' of tablets.


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## aldra (Jul 2, 2009)

Thanks jean 
Mine is also to treat the inflammation of psoriatic arthritis 

I start on 4 tablets for a month then raise it to 6 

I suppose I should be grateful that someone has finally taken seriously that I really do have a problem with constant pain from swollen stiff joints

Just the difference this last week from the effect of the steroid injection has made me realise how difficult I was finding daily life, I can walk without hobbling and the pain is very much reduced 

I still will be at risk from calcium crystal attacks to the joints but at least now I have a direct helpline when flareups occur 

Sandra


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## jiwawa (Jun 22, 2007)

Excellent Sandra - that all sounds very hopeful!


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## aldra (Jul 2, 2009)

It is

But I have arranged to speak to my Gp , changed now to Friday as we have an appointment on Thursday with the bowel cancer surgeon 

I just need that extra reassurance , you see the consultant, she makes a diagnosis, prescribes, and you are gone clutching a batch of blood tests for the future 

To be fair there is a nurse contact

But I was a bit put off as my urine test showed protein, possible infection 

Queried with the nurse who vanished to see the consultant, and came back with an antibiotic prescription 

And to delay the drug 

And I already knew I shouldn’t start this drug with any possible infection 

As it lowers my immune system so infections are a problem 

Don’t come into contact with colds, flu, measles virus, chickenpox virus, shingles etc as your immunity is compromised , you have had the pneumonia vaccine ?

But I have 11 + 2 grandkids and archer is 13 months old 

If Albert gets a cold, he’s banned, banned I tell you :nerd:

We just need to build a shed to house him in the event :frown2:

Or I could just settle for divorce >

Sandra


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## patp (Apr 30, 2007)

Oh Sandra! Get in the van and go live in a field!! 

But did I detect a little humour in your latest post? My goodness girly you must be feeling better  So nice to see the old you coming out now that the pain is a little better.


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## aldra (Jul 2, 2009)

Not just the pain

But living with stiffness, moving like a zoombe

Weighing up the distance from the bed to the on-suite every morning 

Afraid to leave the house because I couldn’t be sure if my feet lifted enough to clear cracked paving stones 

And joints ached and flared up at will 

And afraid of falling

But now I remember what life was like before

Just sad it took so long for someone to believe me

And do something 

Even I was believing it was all my fault 

Sandra

Sandra


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## patp (Apr 30, 2007)

I am so thrilled that you seem to be finding a way through the pain. Keep it up


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## aldra (Jul 2, 2009)

Starting the medication on Sunday

Put it back whist everything was going on with Albert, didn’t want to suffer any side effects 

It all was so quick from diagnoses to operation 

Letter today to say they can repeat the steroid injection in 6 weeks if needed 

It’s made such a difference to the pain and most of all the stiffness

Sandra


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## patp (Apr 30, 2007)

Glad you are finding ways to manage the pain, Sandra.

Do you think you might make a go of getting on that bike of yours at some stage?


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## aldra (Jul 2, 2009)

I’m hoping so 

It was just that I couldn’t get it to go in a straight line

If I can find a big car park I guess I’ll at least be able to go round in circles , hopefully not ever decreasing ones >

May try the local cemetery when alberts feeling better as he will need to be taking a daily walk soon, and if he gets tired my bike will go into walking mode without the need to peddle , it’s time I also undertook a daily walk as well 

He of course is worrying about how long it will be until he can get back on his bike, as I’ve said he should wait until he wouldn’t be harmed if he fell off 

Sandra


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## JanHank (Mar 29, 2015)

After being here for 2 weeks, walking Motley twice a day up and down hilly bits, I discover I have muscles in my legs again 😄 calf muscles especially.


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## jiwawa (Jun 22, 2007)

Aye, and my hip is going I think it's called anno domini!


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## raynipper (Aug 4, 2008)

Wot like Jeans Jan?

Ray.


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## jiwawa (Jun 22, 2007)

raynipper said:


> Wot like Jeans Jan?
> 
> Ray.


???


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## raynipper (Aug 4, 2008)

Well formed. And able to climb all those steps.!

Ray.


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## jiwawa (Jun 22, 2007)

Well, they were! I've had to take paracetamol to stop being woken in the night....


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## JanHank (Mar 29, 2015)

jiwawa said:


> Well, they were! I've had to take paracetamol to stop being woken in the night....


Do they stop night cramp then Jean?


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## jiwawa (Jun 22, 2007)

No, it's not cramp, it's pain in the hip that wakes me up.


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## aldra (Jul 2, 2009)

A side effect of the steroid injection seemed to be cramp at night

A strange cramp of the muscle that runs down the outer side of the leg , from knee to ankle 

More of a steady deepening ache 

Which can only be relieved by walking 

Much as cramp can 

When Albert fell downstairs he was given a short course of diazepam to relax his muscle

Of course as you guess he didn’t take them 0

But a half tablet at night seemed to relieve my cramps , or at least lessen the times I needed to wake to walk it off 

No one really enjoys walking around moaning in the dead of night, especially in the winter when the house is cold:nerd:

I’ve only tried them a few times but they worked

So now I need to ask my GP if it’s possible to prescribe a low dose 

And explain how comes I know it works for me :frown2:

Sandra


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## patp (Apr 30, 2007)

Sandra, I get similar symptoms but I have put it down to sciatica. If I sit around a lot I get sciatica which is a pain that travels down the leg. Like you, getting up and walking around, eases it. As an insomniac I don't need another reason to wake up so I take Co Codamol when I wake up to make sure I get another couple of hours sleep. Codeine can make you sleepy so it helps in two ways.


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## JanHank (Mar 29, 2015)

patp said:


> Sandra, I get similar symptoms but I have put it down to sciatica. If I sit around a lot I get sciatica which is a pain that travels down the leg. Like you, getting up and walking around, eases it. As an insomniac I don't need another reason to wake up so I take Co Codamol when I wake up to make sure I get another couple of hours sleep. Codeine can make you sleepy so it helps in two ways.


I thought you took a sleeping tablet every night Pat, does it wake you regardless?


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## patp (Apr 30, 2007)

I don't need, so don't take, a sleeping tablet when I go to bed. One my head hits the pillow I am off. If I try it I still wake up after about four hours anyway  My routine now is to get up when I wake up in the early hours, anytime between 1 am and 4 am, go downstairs and take a sleeping pill and two Co Codamol. I then read for about half an hour, return to bed, and go off for another couple of hours. Even this routine is disrupted if I have any kind of social activities during the day! If I live like a hermit then I sleep better. When we full timed and lived in Spain and Portugal for the winter i slept like a log. No phone, no tv, not many English speaking people to talk to. Just reading and walking. I can see why people become hermits  

Of course sciatica does not help either but it is not the main cause. I have cured the sciatica by going to Clinical Pilates classes but they are quite expensive.


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## JanHank (Mar 29, 2015)

patp said:


> I don't need, so don't take, a sleeping tablet when I go to bed. One my head hits the pillow I am off. If I try it I still wake up after about four hours anyway  My routine now is to get up when I wake up in the early hours, anytime between 1 am and 4 am, go downstairs and take a sleeping pill and two Co Codamol.* I then read for about half an hour, return to bed, *and go off for another couple of hours. Even this routine is disrupted if I have any kind of social activities during the day! If I live like a hermit then I sleep better. When we full timed and lived in Spain and Portugal for the winter i slept like a log. No phone, no tv, not many English speaking people to talk to. Just reading and walking. I can see why people become hermits
> 
> Of course sciatica does not help either but it is not the main cause. I have cured the sciatica by going to Clinical Pilates classes but they are quite expensive.


Obviously not the sleeping tablet I have Pat, I must be in bed when I take it because it works so fast, I had one accident what I delayed going to bed after taking it and found myself on the floor and had to crawl to bed, like being in a dream when you can´t get anywhere. It´s called Zolpidem AL, but thats probably the German name. Active ingredient Zopidemtartrat.


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## patp (Apr 30, 2007)

Mine is Zopiclone but don't know the generic name of it. Might be the same one? I have managed to cut down to half a tablet as they don't like you taking them long term. I hope I get brownie points for cutting them in half as they taste absolutely disgusting! They worry about us getting addicted to these "Z" drugs. I find that hilarious  What the hell is wrong with being addicted to a good night's sleep?!
Yours must be strong to knock you out like that!


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## JanHank (Mar 29, 2015)

I used to have one called Zimovane which were non addictive aparently, but they also had to be periodically increased because they stopped working. I stopped them with no trouble except I couldn't sleep through the night as usual:grin2:

Just looked it up, they are also called Zopiclone :grin2: not as adictive as some it says.
https://www.nhs.uk/medicines/zopiclone/

Sorry Sandra, didn't intend taking over your thread, one thing just led to another, as it does :grin2:>


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## patp (Apr 30, 2007)

Thanks Jan, and sorry Sandra. I don't find them addictive. I have tried to stop them but just can't drop off to sleep once I have woken up  It is the sleep that is addictive


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## aldra (Jul 2, 2009)

As you are well aware I don’t own any thread , so I was wondering what you were sorry for ?

I’m happy just to hear your experience good and bad 

If it’s about sleep , cramp whatever, it is still on thread as far as I’m concerned

Jan didn’t you have a lot of trouble with night cramps, did that sort itself?

My biggest gripe with night cramps is that you think you are dreaming you are having cramp, only to wake with a jolt and find you are.

Sandra


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## JanHank (Mar 29, 2015)

I had 6 weeks of quinine tablets, first they worked, then they didn't then they did. I won´t say this too loud, but I haven´t had any for a few days and fingers crossed. 
I do have Pramipexol that ray with a little `r´ told me he takes and they work well for him.
Unfortunately the first one I took last Thursday I also took a sleeping tablet and was ill on Friday, so not really knowing why I was ill it put me off, but I will try it again without the sleeping tablet as I do not want to go through a faze of night cramp again, its buddy painful.:frown2:


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## JanHank (Mar 29, 2015)

Reporting, I took rays tablet last night, no cramp and no sickness this morning.😄
I also slept better, woke up a few times, but the brain box stayed quiet. Have I turned a corner? I was very busy in the kitchen yesterday, a parcel with relevant documents arrived as well, a letter from the British Embassy also came which included information confirming they won't be sending me back to England after Halloween 🎃 that was reassuring and took an unnecessary weight off my mind so if I do decide to come back it will be my choice and not someone else's.


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## patp (Apr 30, 2007)

That is good news on all fronts Jan  I think our primeval brain needs us to be engaged in normal things in order to be relaxed enough to sleep. I always sleep better if I have done things like cutting the grass. No brain engagement needed but plenty of activity. If I like (and could) running then might do the trick too. 

Glad your options are all open to you, too.


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## aldra (Jul 2, 2009)

Great news Jan

So where in England is home if you decide to return ?

Of course with the MH you could have a “ home “ in both Germany and England 

not quite as lucky as you last night, frequent walking to relieve “ cramp” in both legs but mostly the left side 

This morning the left knee painful and swollen , but the consultant has prescribed me ibroprophin for just such events, she says short courses will be fine in flareups, yea!!! and the rest of me is still reasonably flexible and pain free......fingers crossed 

Sandra


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## JanHank (Mar 29, 2015)

Try drinking tonic water, the quinine is not enough to stop cramp, but maybe it won't be as bad. Or ask your doctor if you can take it.

The Newmarket area is where I know a lot of people, both family and friends who I still keep in touch with on occasions.


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## aldra (Jul 2, 2009)

I’m not sure it’s genuine cramp Jan 

I’ve suffered from cramp for years and it’s eased of late , this is the outside muscle / ligament that runs from ankle to knee, a deep burning ache that eases on walking , could be an inflamed nerve , but strange it’s both sides 

I’m seeing the rheumatologist again in 10 days so I’ll check if she knows what it could be

Diazepam helps, it’s a muscle relaxant , but I’ve only got 3, I might take I/2 one tonight to get a goo dish night sleep

Sandra


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## JanHank (Mar 29, 2015)

I think I said before, sometime back, this is not in the muscle, its the ligaments and tendons they get so tight it feels as if they will snap and its so painful it makes me cry and I always shout "Go away" doesn´t do any good though.:frown2: When I get it in the back of my legs *and *the top of my feet its really painful.


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## patp (Apr 30, 2007)

A doctor writes in the Monday Telegraph and he takes queries from people with symptoms that have not been resolved by their own doctor. He then asks the readers for their comments. Pains such as the ones you are experiencing came up recently. I get them, too, and have always thought of them as linked to sciatica which is known to stretch down the leg. Mine eases when I get up just like the reader who sent in the query.
The readers' answers came down on the side of taking Magnesium supplements.
A physio commented that it could be a certain nerve and ligament but I don't think they gave a cure.
Of course you shouldn't take a magnesium supplement long term without checking that it is ok for you.


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## aldra (Jul 2, 2009)

Well I’d need to check if it’s to do with my form of arthritis 

I finally can differentiate between pain and stiffness 

The consultant told me you need a walking aid, you are so unsteady

I thought it was a good day and I was walking well 

I’ve been through hell and back with pain and stiffness 

Terrified that I was my losing mobility

And have been accused on here of only being interested in myself 

When I was desperately trying for help 

Well hopefully I’ve got it now

It wasn’t my imagination 

I was a zoombe stiff, struggling to walk , afraid of falling 

And in constant joint pain 

But now, still in some pain and stiffness

But hey if I could dance 

I would

I’ve always been a crap ( there’s that word again ) dancer

Can you believe that 75 years ago 

I met Albert at a school of dancing

And all these years later I’m sill crap 

Sandra


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## aldra (Jul 2, 2009)

Oops , For 75 years read 56 years 

Almost 57 

Sandra


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## aldra (Jul 2, 2009)

I guess it could be due to a mineral deficiency Pat 

Sciatica usually follows the track of the sciatic nerve so I don’t think it’s that

I wish I knew what it was as I’ve been up several times with it in the night again so haven’t had much sleep 

I didn’t take the diazepam in the end as I wasn’t sure it was ok with the new drug I’m on 

Although maybe I should have because I’m up and down in mood at the present 

One moment ok the next very anxious about everything and nothing 

Apparently depression is a common side effect of arthritic conditions 

And lack of sleep isn’t much helping 

On the good side my knee feels much better this morning and the swelling is going down so I may try going out for a walk later on if the weather holds 

Albert seems to be doing well and eating a more varied diet with no ill effects, he’s sleeping like a baby for 10 hrs at a time 0

Imagine Pat, 10 hrs of uninterrupted sleep 

Sandra


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## patp (Apr 30, 2007)

Oh I watch someone very close to me sleep for 10 hours every night, then have a lunchtime nap!!! On the very rare occasion i might be still asleep when he wakes up he crashes around getting dressed!

What is wrong with a walking frame? What about using it for just those urgent trips to the en suite at night? The last thing you both need is a fall.

You could ask the pharmacist about the diazepam?


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## aldra (Jul 2, 2009)

I’m fine now Pat

The stiffness is all but gone and I can have another steroid injection in a couple of weeks or so if I need it 

I’ve started the new tablets which should damp down my immune system so hopefully I won’t be attacking my own joints soon 

I doubt I’ll be running the marathon anytime soon though >

Just need to control the stress levels and perhaps sort out this night time pain so I can sleep better 

I’ll speak to the rheumatologist , maybe she will know what it is or what causes it 

But even with that I feel so much better mobility wise 

Sandra


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## aldra (Jul 2, 2009)

Spoke to soon 

My left foot, neck and shoulders are swollen and painful ,but I think that’s the calcium crystals

I don’t think that the new drug can help with that , and anyway I doubt that it’s working yet ,but I can now take ibuprofen when the joints flair up :grin2:

Last night was the first time in weeks I didn’t get those night “ pains “ in my legs

So maybe the ibuprofen helped or maybe it’s just the steroid injection wearing off

I’ll definitely have another one when I go to clinic in about 10 days 

Sandra


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## jiwawa (Jun 22, 2007)

Hopefully it's just a blip Sandra but you sound so much more positive - maybe just knowing that it CAN be better.


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## aldra (Jul 2, 2009)

definitely Jean,

Knowing that I can now take an effective pain relief when the calcium crystals move into joints

That hopefully the new medication will at least prevent the non calcium crystal flareups, such as that in my neck/ shoulders at the moment once it gets into my system 

And that I can at least have another steroid injection at the beginning of next month

Sandra


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## jiwawa (Jun 22, 2007)

What has made the ibobrufen acceptable now Sandra? Have the medics changed their minds?


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## aldra (Jul 2, 2009)

The consultant rheumatologist Jean

Checked my kidney function , said it was adequate and prescribed them for me herself 

To be taken to control flareups because of their anti inflammatory action

Still can’t take the pain drug that would shorten the length of flareups but it’s definitely a start 

Neck and shoulders still sore though , foot hasn’t progressed to hot red stage so may not be crystals in the joint hopefully 

Still hopeful that the new drug will eventually control the majority of the non crystal flare ups

Note in her letter the rheumatologist has referred me to the rheumatology MDT so there will be more than one “ expert” attempting to sort me out 

Still it’s all going in the right direction now and I no longer feel that I have already lost the fight in a steady and not so steady decline 

Sandra


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## aldra (Jul 2, 2009)

And now I have to go to the MDT group

They will check my feet , which externally are really good, I was never into squashing my feet into high heels

The physios will discuss exercise , which is meaningless when my joints are inflamed 

Let them try walking on a joint that is swollen painful and throbbing 

If they are not I walk, and lastly since the steroid injection I have been able too

I’ve even been shopping , ok only to aldi, but I’m out of the house 

Unless stiffness prevents it 

And unfortunately I’m getting a bit stiff again so maybe the injection is wearing off

I’m obviously not a good patient

I don’t suffer fools gladly 

And as you all know or should know by now 

With all life is throwing at me , multiple cancers etc 

I need to be resilient

And I tell myself constantly 

You can do this 

And myself isn’t that sure 

And tells me you don’t even post the way people like 

Sandra


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## patp (Apr 30, 2007)

Why do you care if people do not like the way that you post?

You have, at last, sought all the help that we, on here, have been nagging you to get. There is light at the end of the tunnel. All those specialists will find the key to your comfort. 

I would not dismiss the advice of the physios. They will not tell you to do things that are of no benefit. Why would they?They have seen the results from the patients that follow their advice. Yes, they seem mean but it is their job to push you into making your life easier. If you have no strength in your muscles and ligaments to support your joints then the joints will take all the strain. This will result in more pain. 

Strong muscles and ligaments will, in the long run, be the saving of your mobility.


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## jiwawa (Jun 22, 2007)

aldra said:


> The consultant rheumatologist Jean
> 
> Checked my kidney function , said it was adequate and prescribed them for me herself
> 
> ...


Excellent news Sandra - as they say, every little helps. Oh, that you could have had that a lot sooner. But - onwards and upwards!


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## aldra (Jul 2, 2009)

Yes it is interesting that the stiffness is slowly taking me into its grip again 

I imagine the steroid is beginning to wear off 

Nothing like as stiff as I was as yet 

The stiffness is worse than the pain in a way 

It undermines your ability to self determine , feet don’t pick up, unsteadiness takes over , fear of falling 

And it’s quite exhausting moving stiff dead limbs all day 

But I’ve taken the second dose of my medication today 

So fingers crossed that another dose of steroids will have the same effect as the last

And give the time needed for the medication to become effective

And if it doesn’t ,well at least now someone will look at an alternative 

And know my pain and stiffness was not a figment of my imagination

Sandra


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## patp (Apr 30, 2007)

Sorry to hear the stiffness is bad at the moment. Are you keeping a diary? There seems to be proof now that the weather does have an effect on our pain levels.


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## aldra (Jul 2, 2009)

Yes pat 

I am keeping a diary, particularly of the joint flareups

Which I have to say have been so many fewer since the steroid injection 

And I’m no where near as stiff and tired as I was 

I won’t dismiss the physio’s I advice, I may even get a walking stick for those “ off” days 

I might even start dancing , now that would be a miracle as I’ve got “two left feet” :grin2:

Sandra


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## patp (Apr 30, 2007)

Video evidence of your dance moves required


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## HermanHymer (Dec 5, 2008)

Just don't trip over Shadow, while you're doing the foxtrot around the house with Albert. 



Well it's a start. Don't let them off the hook now you're feeling a wee bit better. Keep their noses to the wheel. Exaggerate if you have to, to get their attention again. 



Fingers crossed for many more better days. Remember YOU DESERVE TO BE PAINFREE.


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## aldra (Jul 2, 2009)

I’m so grateful that at last

Someone has listened 

And actually done something , hey I’m not a zombie by nature 

My pain and stiffness is real

It’s official

That I am not imagine it 

That joints are frequently swollen, that I really suffer from horrendous pain when calcium crystals enter the joints 

As they do far too frequently

That I could no longer differentiate between calcium and non calcium flare ups, that my ferritin levels rose so high with the inflammation that they investigated liver disease or cancer 

And found neither 

But That my body was attacking my own joints 

So hopefully things will calm down

Never normal 

But I’ll get my life back I hope 

Sandra


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## jiwawa (Jun 22, 2007)

Is any of us 'normal' Sandra??!!??

Sounds so boring!!


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## aldra (Jul 2, 2009)

Al ‘t worlds queer

‘Cep thee and me 

And even thas a bit queer

Sandra:grin2:


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## aldra (Jul 2, 2009)

Beginning to get stiff again but nothing like like the constant inflammations 

Seen the nurse today 

A cortisoid injection ens a miracle 

I WISH THEY HAD listened sooner 

I had decided it was my fault 

I didn’t know why 

But no one it seemed did or cared 

And hey I can now walk 

Sea
Sandra


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## patp (Apr 30, 2007)

We cared, Sandra  And if you remember we nagged and nagged you to get a referral to the pain clinic. At last you did it and this is the result. What a result it is! A new woman


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## aldra (Jul 2, 2009)

I meant in the medical profession Pat

Physios telling me I need to exercise more when I was struggling to walk and maintain my balance 

In constant pain from flared up joints, no pain killers, and constant interrupted sleep 

In the end it was a sheer fluke, the nurse ticked ferritin levels on a routine blood test, (the GP said we don’t normally test for that)

Which were sky high

Liver was fine, I didn’t have cancer, nor high iron levels , the professor was great , noted my flared joints and said he’d cleared all possible causes in his field, the high levels were due to inflammation 

See a rheumatologist to get those levels down 

Which I did, and she listened , seem to be doing ok on the tablets, increasing them to six this week, blood test result showed a huge drop in inflammatory markers yesterday 

Another steroid injection which should see me over till the tablets have time to fully work 

Apart from the huge physical benefit, I was becoming very afraid and loosing confidence that I could ever feel better again

Now I do

Sandra


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## jiwawa (Jun 22, 2007)

Result!! So glad about that Sandra.


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## aldra (Jul 2, 2009)

She can’t sort out the calcium crystal disease 

Nothing can reduce the calcium crystals 

But I’d reached a stage when I could no longer differentiate between the two

Except one was excruciatingly painful

Which is why it’s known as pseudo gout 

The other just debilitating and painful stiffening my joints to immobile 

And together they were wreaking my life 

But now a steroid injection or two

And a cancer treating drug, low dose 

I’ve discovered I can live again

Now I’m looking for a fancy walking stick , saw someone today with one

Yep I was out 

Which will Take some pressure on my forearm , away from my wrist , carpel tunnel syndrome 
Sandra


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## patp (Apr 30, 2007)

So glad you are finding a way through. I am sure they will tweak the treatment as you go along until you are zooming around like you used to


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## jiwawa (Jun 22, 2007)

Probably, in our 70's,none of us is going to 'zoom' again! - but I like your thinking Pat!


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## aldra (Jul 2, 2009)

Well I’m not

Swollen knee again 

But I think I’ll take courage in both hands 

And apply for a disability badge 

And start driving again, maybe 

I stopped because I can’t get out of the car if the door isnt fully open 

And normal parking bays don’t allow that 

And even when I parked with space, another car parked in that space 
found me waiting until they returned 

But I wasn’t as bad then, but now I’m better than I was ,still need the door fully open 

Albert drops me off, parks 

And reverses the procedure to let me back in 

I should be driving 

If only because we don’t know what’s round the corner 

As the last shock reminded us 

Sandra


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## patp (Apr 30, 2007)

Good idea! Just make sure that your knee does not prevent you from operating the pedals efficiently. I get most concerned when I see some people get out of their cars and proceed to hobble. I wonder how on earth they could hit the brakes??


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## aldra (Jul 2, 2009)

Well mines automatic 

I think I could manage the brakes with my right knee 

Sandra


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## jiwawa (Jun 22, 2007)

aldra said:


> I think I'll take courage in both hands
> 
> And apply for a disability badge
> 
> ...


Of course you should apply for a disability badge and open up those possibilities again.

Some may think it's ghoulish to consider the driving because you don't know what's round the corner but it's only sensible - as well as being a very positive step for yourself.

Go for it!


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## aldra (Jul 2, 2009)

I may just encourage Albert to buy a new car

But this one is a workhorse 

A total tip in my eyes

He fills it with logs, building materials 

It needs a good clean 

I never should have got rid of mine 

Sandra


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## aldra (Jul 2, 2009)

I seem to have hit a blip

I can’t stay in bed for more than a couple of hours or so at a time 

After that my feet spasm and I get an intense pain from knee to ankle on the outside of both legs 

Then I have to get up and stay standing or walking until it subsides 

My kitchen drawers are all spotless !!! 

I imagine it’s something to do with the flexion of the foot in bed as it eases when standing 

Wether it’s the medication or the steroid injection I’m not sure 

But I didn’t have it before I started on those 

I’ve been up since 2am and it seems to have eased off and I’m sat down , now so I’ll try to sleep again 

Spice draw all cleaned organised 

But I don’t think sleep in two hour shifts is long term sustainable 

Sandra


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## patp (Apr 30, 2007)

I sympathise Sandra. I get something similar. 

There is a doctor who writes in the paper about troubling ailments and asks for feedback from readers. This pain in the legs and feet, at night, that eases when you get up, was discussed. The patient's own doctor had not found anything to help. The readers came back with suggestions that it might be a magnesium deficiency. I am trying a magnesium supplement at the moment.
There was one other suggestion from a physio about a certain nerve that runs down that region so you might like to describe it to your physio.
I just want to know why it only happens when I am in bed. As if I don't have enough trouble sleeping! I get up and take a couple of co codamol which does the trick for about four hours.


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## aldra (Jul 2, 2009)

I think it’s the peri ? muscle, ligament or tendon 

It’s not cramp as such, I get that occasionally 

It’s a deep painful burning ache running up the outer extremities of the lower legs from ankle to knee

I can trace the tender tract next day following attacks, and I think it’s a tendon or ligament 

Mine always starts with foot spasm, which is cramp like , so I wonder if it’s a bit like carpel tunnel syndrome 

Occasionally mine happens when I’m sat with my feet up in the evening

I’m wondering if a foot brace worn at night may keep the foot/ ankle aligned 

I might try binding them tonight with kinesiology tape 

As a matter of interest I get night cramp when my Vit D tablet is due and I’ve forgotten to take it 

I take one 20,000UI (500mcg) VitD3 tablet a fortnight , prescribed 

Seeing the MDT team at the hospital early next month, that’s podiatry, physio etc so maybe they will know what it is and how to treat it or better still prevent it 

Sandra


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## patp (Apr 30, 2007)

Mine is the sole of my feet. It wakes me up and I have to get out of bed. Once I am up (and wide awake) it goes. 
Just ask the team about mine while you are there Sandra


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## aldra (Jul 2, 2009)

My feet are just an early warning

If I’m awake fine, I get up and walk for a while

If I’m asleep it’s full blown and part of my dream 

I get up to walk it off and remain standing for long time 

Which is why I wonder if it’s to do with the foot flexion 

It takes a while once the pain subsides to risk it again 

But my kitchen drawers are looking good 

Sandra


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## aldra (Jul 2, 2009)

Well up again on drawer patrol, I’ll be running out of drawers soon !!

Actually I’ve been lucky , usually Ive already been up twice by now, so I’ve had almost 4 hrs sleep already 

I’m hoping it’s not a side effect the medication / steroid injection, because my stiffness and flareups are much reduced now during the day 

But it started as soon as I began taking the medication and had the first steroid injection 

If anything it’s getting steadily worse and I’m getting fed up of wandering around like Lady Macbeth half the night 

But if I potter around for an hour, take a couple of pain killers and a hot drink, I can go back to bed until the next attack 

Sandra


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## patp (Apr 30, 2007)

I'm in that routine now, Sandra. Get up take Co Codamol and Zopiclone read for 20 minutes then I can go back and go off. I never do anything other than reading because I always read before sleeping and I hope that my brain knows that. Twice last night 1.30 am and 4.15 am. I can't risk taking a Co Codamol again so it is a couple of Ibuprofen at 4.15.

Off the to docs about my Zinc deficiency today as tests say back to normal but symptoms still on going and have been for a year


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## aldra (Jul 2, 2009)

I can’t read , Pat , as I need to be on my feet pottering to ease it off

Hence my drawer clearing activities 

Otherwise i would do exactly as you do , take a painkiller and read

I usually do take a painkiller before I go back to bed in the hopes it will prevent another attack

Sadly it doesn’t 

I’m sure it’s to do with the ligaments in my feet, I suffered badly from constant flare ups in my feet / ankles, which have got to have caused some permanent damage 

Before I was finally diagnosed

I’m just worried that maybe it’s a side effect of the medication and I have to choose between pain and stiffness in the daytime

Or nightly pain 

There’s only so many times I can clean out kitchen drawers 

Although I’ve got 39 drawers in this kitchen !! >

Including the floor to ceiling cupboards which have pull out drawers 

I replaced all cupboards with deep drawers 

Because what was in the back cupboards stayed there :frown2:

I couldn’t get down to get anything out , and eventually 

Forgot what was in them :smile2:

I have two cupboards with pull out recycling bins 

And that’s it

Sandra:grin2:


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## patp (Apr 30, 2007)

Just got back from the GP. He has put me on Amitryptaline for my sore tongue and painful feet and legs. It is also useful for insomnia I am just worried that he said something about it taking three weeks to work! If I can't take a sleeping tablet while on it then that will be three weeks of sleepless nights. Not going to happen I don't think. It can also make the symptoms worse 
He is also treating the symptoms and not the cause. The cause was thought to be a Zinc deficiency but a blood test says that is now normal but the mouth pain persists. Bloody old age


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## aldra (Jul 2, 2009)

Just wait Pat 

It could well be that

It takes time to sort out

3 weeks of sleepless nights?

I’m approaching 6 weeks 

But I’m hoping it will be sorted , eventually 

Sandra


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## patp (Apr 30, 2007)

Slept really well until 4.30 ish. Bathroom break and then went back to sleep! The tablets seemed to work for the majority of the pain. I wonder if he meant the mouth dryness and pain might take 3 weeks. I can cope with that as it has been going on for a couple of years now.


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## aldra (Jul 2, 2009)

Up again with cramp in both legs, second time tonight 

I’m sure it’s got to be the medication 

Beginning to feel the after effect during the day time now of constantly sore muscles from the cramps the night before 

Might ask my GP to run a blood test for any mineral deficiencies, Pat 

I’m very disappointed that the painful flareups that made life so difficult seem to have been replaced by these reoccurring cramps all night long 

Sandra


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## patp (Apr 30, 2007)

My leg pain, I am sure, is caused by some sort of back problem like sciatica. It went away when I was attending regular Clinical Pilates under a physiotherapist. I do try to do some of the exercises but weekly classes used to spur me on.

The mineral deficiency caused a really sore tongue and mouth along with some skin and hair problems. 

I do think, however, that a blood test for mineral deficiencies is well worth it as we get older.


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## raynipper (Aug 4, 2008)

Anyone tried Cannabis Oil.??

Ray.


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## patp (Apr 30, 2007)

Yup, didn't work for me  As it does work on animals, so I am told, I am sure that it does have its benefits.


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## aldra (Jul 2, 2009)

I have some cannabis cakes Ray , but I haven’t tried them

When Albert was in hospital one of the Macmillan nurses gave him a contact to get the oil

She uses it for osteoarthritis and her husband for Penile Cancer 

She swears by it 

Sandra


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## patp (Apr 30, 2007)

Just seen this posted on a physio site.

Great post by @embrklifestyle 😊👍:
"[PAIN SENSITIVITY VS. TISSUE DAMAGE]

The nervous system is like Pepperidge Farm…it remembers.
Sometimes a better way of thinking about pain when it persists after an injury is to think of it as sensitivity. When our body gets hurt, we become sensitive to certain stimuli because the nervous system is trying to protect us.

This is great when we first get injured because it alerts us to prevent subsequent harm but not so great when our tissue is healed. It's normal to have some sensitivity when coming back from an injury. After all, our brain is just trying to protect us.

However, after a certain time frame, we know that our tissues/muscles have healed. In these scenarios, we should not relate hurt to harm but instead to sensitivity. You can work around sensitivity by gradually re-introducing activities in varied intensities that once provided discomfort.

You're not broken and as long as you are living…your body does a stellar job at adapting."

Do you want to learn more about pain and the sensitivity of the nervous system?
Then you can check out the online courses made by Mike Stewart and Niamh Moloney/Martin Rabey on www.trustme-ed.com/lectures 🤓👍
#keeplearning


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## aldra (Jul 2, 2009)

I’m not sure I’m saying that the repeating nightly cramps are causing damage per say

But they are now leaving me sore in the affected muscles during the day ,a bit like an over workout at the gym might 

And I’m still not that steady when all is well 

And I really don’t need tired painful muscles added to it 

Particularly as I haven’t run a marathon or climbed a mountain 

All of the pain but non of the gain 

Sandra


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## HermanHymer (Dec 5, 2008)

This may not be the best solution for you Sandra, but I keep a salt pot next to the bead. Cramp... sprinkle a little on my hand... lick.. rub affected part for 30-60 seconds. Cramp diminishes.


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## aldra (Jul 2, 2009)

I’m pretty certain it’s a reaction to either the cortisone injection or the methotrexate Viv 

It started when I began the medication and has got progressively more frequent

It follows the same pattern every night , or day if I try to catch up on missed sleep 

One or two hours of sleep, cramping spasms in both feet followed by a deep painful burning ache, that runs from ankle to knee on the outside of both legs 

Relieved only by getting up and walking about for about half an hour , then waiting for the residue pain to subside 

I spend almost as much time walking around at night as I do sleeping 

Yesterday I noticed that I’m getting cramping spasms in my hands too, if I hold a kindle or the iPad for too long 

I sometimes get “ normal” cramp in my calf or thigh but not in such a regular defined pattern as this, 

I’m going to contact the rheumatology clinic today, I have a direct number, to see if I should see the rheumatologist or my GP, hopefully they can give me something to calm things down 

I don’t know how long steroids stay in the body following an injection , Im told to carry a card for three months following the last injection to inform medics that I’ve had steroids injected 

I’ll soon be getting up before I’ve been to bed :crying::grin2:

Sandra


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## HermanHymer (Dec 5, 2008)

Sorry for your suffering Sandra! Hopefully you will get a solution. I can imagine it's more than tiresome, in both senses of the word.


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## aldra (Jul 2, 2009)

Well it’s more disappointing

Following the first steroid injection I came alive

Stiffness disappeared, pain disappeared 

I felt great

Flare ups vanished 

And to be fair flare ups are a thing of the past even now

But the nightly cramps and the feeling of weak muscles during the day

I’m struggling with 

So very disappointed 

I really thought it was a new me

Sandra


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## patp (Apr 30, 2007)

There was a stage where you didn't think they would be able to help your painful joints and they did. So don't despair, just yet, that they will not be able to help the cramps.
Make sure you have ticked all the usual boxes like hydration (2 glasses of water when you get up, 2 before breakfast, 2 before lunch and 2 before dinner) and mineral deficiencies etc. Try the cork in the bed and a bar of soap in the bed that many people swear by.


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## aldra (Jul 2, 2009)

I will pat

But my legs are weak and tired from constant spasms and painful cramp 

Repeated over and over every night 
Probabally the same on my feet 

My hands And wrists are beginning to spasm

And I’m really afraid that I begin to feel that same pain up my arms

But it is fascinating to see my joints turn inside out on my hands

Painful, but fascinating 

Probably the same on my feet 

But I can’t see that close up

Sandra


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## patp (Apr 30, 2007)

Are you eating the special diet devised to help Albert?


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## aldra (Jul 2, 2009)

I’m absolutely sure it’s either the new drug or the cortisone injection 

prob/ the latter 

As now use time goes on I need only to get up twice in the night to relieve the pain , it was every two hours 

Sad because it was a miracle during the day

To be fair those constant painful flare ups are no longer happening 

My inflammatory markers are coming down 

I’m getting a bit stiff again

But I’m certainly not a zombie yet

In the throw of feeling alive, I threw a pie party

50 + are coming, that’s a lot of pies 

But a lot of friends and family 

And I’ll cook them with love, as I usually do 

And go on I’ll enjoy cooking , meat and potato, steak and mushroom ,turkey and ham, fish pie 

And I’ll throw in salmon quiche, broccoli and cheese quiche 

And it will all be fine 

Because if they didn’t want to be here

They wouldn’t come would they ?

I’m not on trial, I’m the me they all know 

A less than perfect mum 

A perfect grandma , which annoys my kids brought up by a less than perfect mum

But what the heck

It looks like I’ll have reached more than perfection when my great grandkids arrive 

And I can’t wait for the day when our megs has a child

Favouritism ?

No, proximity, I walked the floor with this kid night after night 

Whilst here mum was at university , dropped her at nursery and picked her up

And she is perfect ?

No she is a self opinionated know it all

She will be an excellent lawyer 

I think

Sandra


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## aldra (Jul 2, 2009)

Seen the physiotherapist today

I now have a walking stick

It’s like an unknown appendage 

And I was crap with walking poles in my fell walking days 

I see the Occupation therapist at the end of the month 

I think I’ll need a support on my wrist and hand to manage the walking stick 

They cramp , spasm and joints fall out of place when I do any repetitive tasks like peeling veg or even using cutlery and I’m a bit worried about relying on a walking stick 

I’m very stiff again with painful joints 

But no longer with the constant agonising flareups from the calcium crystals on the immune suppressant medication , so that’s a bonus 

I see the rheumatologist next week 

Maybe there is a different drug 

They tricycle didn’t work out

They only hire the bikes, not give lessons ,but it was so cold I was grateful I could just go home 

Sandra


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## jiwawa (Jun 22, 2007)

aldra said:


> And I was crap with walking poles in my fell walking days
> 
> ....
> 
> ...


I could never manage 2 walking poles either Sandra but I find a single pole very much easier than a walking stick because I can 'hang' my wrist in the loop and hold the vertical hand grab very comfortably - worth another try?

Such a shame about the tricycle. Have you tried it in a big open space where it wouldn't matter if you favoured one side, just till you get the hang of it?


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## patp (Apr 30, 2007)

I have been told by, several different people, my mum being one of them how much confidence they gained from carrying a stick. They did not always use it but having the support there was enough to get them out and about more.
My mum had Macular Degeneration and was registered blind. She did, however, have peripheral vision so could walk quite well. She, on the advice of her health worker, got a walking cane that was white. It made a huge difference to her confidence. A neighbour has no severe disabilities but carries a walking stick on her daily walk as she says it gives her confidence. Both of them did not lean on the stick all the time but just every now and again at kerb or on uneven ground etc. Give it a try


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## aldra (Jul 2, 2009)

Interview today for a blue badge 

Why did you not apply sooner she said , you could have had a badge a couple of years ago ?

I’m not even going to do a physical appraisal, other than observing you today, on your complex diagnosis and letters from the rheumatologist alone you qualify 

Why didn’t I ? well because I felt so unsure of my mobility, seemed to suffer almost constant painful flareups, and rarely left the house anyway , and to be fair didn’t feel the medical profession were taking me seriously

The new medication has Definately reduced the flare ups ,brought my inflammatory markers to almost normal , I’m still very stiff and joints are all painful 

But that’s psoratic arthritis for you 

But no longer do I have the excruciating pain of almost constant pseudo gout... calcium crystal disease 

And I have now a prescription for weekly morphine patches, low dose I hope ,which I’m hoping will help me get my life back with reduced pain 

So walking stick in hand, morphine patches at the ready and a disability badge 

Life here I come.....slowly:grin2:

Hopefully>


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## patp (Apr 30, 2007)

So pleased for you Sandra


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## aldra (Jul 2, 2009)

Just that bloody tricycle to sort out

Private lessons would do if we could find them 

We bought the scooter but it shook up my hips so badly I couldn’t walk when I got off

Didn’t know it was the beginning of all this at the time 

I’m still hoping we will go away this spring 

But I need to be semi mobile , I get so bored stuck in the van , even a cycle ride would be such a bonus 

So fingers crossed

Otherwise we might as well sell it 

My house and garden is so much better than a plot on a campsite or aire if I can’t explore further 

And I’ve done that for Albert to ride with the hound from hell

Whilst I remain and cook 

But I can cook at home, in a rather lovely kitchen 

And shadow can walk in the park if alberts knees are up to it 

Not ideal for the hound from hell

But then again it hasn’t been ideal for me either 

And the hound from hell is stuck with us , and his family who surround him 

Like us , he doesn’t get to choose 

I think he’d still choose us

Who knows

Me , I’d choose him again

The hound from hell

Sandra


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## jiwawa (Jun 22, 2007)

aldra said:


> Life here I come.....slowly/images/MotorhomeFacts_2014/smilies/tango_face_grin.png
> 
> Hopefully/images/MotorhomeFacts_2014/smilies/tango_face_devil.png


I hope you're wearing purple!!

Excellent news!


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## patp (Apr 30, 2007)

Sandra, I wonder if your OT might be able to suggest a different kind of scooter? 
I was on a rally, once, where a chap had what I can only describe as a cross country scooter. It went across grass and uneven ground very easily and he looked very comfortable on it while doing so. It had big wheels with proper tyres and may have even had suspension. Worth asking?


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## aldra (Jul 2, 2009)

Part of the reason to get a tricycle was for exercise Pat 

The problem with weak painful joints is that muscles get very little exercise and they become weak

Albert has poor knees and finds walking painful, but he cycles pain free and says he feels the difference in his muscle strengh when he’s cycling regularly 

Both our bikes are electric as not all hills are equal , but I guess it’s still possible to raise the heartbeat on a bit of a pull and my heart knows only pottering about speed at present 

Will keep trying 

Sandra


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## patp (Apr 30, 2007)

Oh, an electric tricycle would be best but if you don't manage to find lessons then it would be a shame to cancel your trips if you could source a scooter that suited your needs?


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## aldra (Jul 2, 2009)

Nope

I have an electric tricycle

It cost me a fortune

I will learn to ride it

Joints will determinate but muscles I really need to work on

My heart it hasn’t even beaten beyond slow, pottering around the house for several years

My little bit of a cow valve is probably getting tired anyway 

But hey we’ve been together for too many years 

So let’s try to let him go out with a bang 

Sandra


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## aldra (Jul 2, 2009)

jiwawa said:


> I hope you're wearing purple!!
> 
> Excellent news!


Yep

I will wear purple

And if I can't get mobile

I'll remain a pain in the neck static

Sandra>


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## aldra (Jul 2, 2009)

Had a few bad weeks

My left knee, and calf was swollen and painful, my thigh felt weak and painful 

I called in to the rheumatologist clinic because I’d already struggled to get to a hospital appointment and was close

They refused to even look, I needed to phone up and wait for an appointment 

Fortunately I knew the symptoms of DVT and although my calf was painful and swollen, it wasn’t red or hot 

So I treated it myself with ibroprofin which apparently I shouldn’t take, but needs must , and it was a Friday 

And after several days the swelling and pain reduced 

I did phone and the person who got back to me was concerned no one had checked me 

Today I received an appointment to see the rheumatologist, which is just as well as now my knee has settled my left ankle has swollen up and painful and once again I’m struggling to walk 

The pain patches don’t seem to be doing much

And again I’m stiff and zombie like 

I don’t much want to take an immune suppressant drug if it doesn’t work 

Sandra


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## DJMotorhomer (Apr 15, 2010)

I started a few years ago with very painful finger joints and my GP put me on purines and this calmed it right down, I was also was told pulses like beans and peas can be a contributing factor to the crystals forming, but since I love and live on baked beans they cannot be the reason, but I have stopped the suckling pig and mead lol

Dave


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## aldra (Jul 2, 2009)

Yep I’ve stopped the wine, it shouldn’t be taken with the immune suppressant drug 

But once upon a time the pain stopped and I felt ok with a few glasses of wine after a day of pain 

Still it’s lent soon and I’ll fast, and who knows maybe all will be well

And my autoimmune disease will vanish 

Maybe

Sandra


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## patp (Apr 30, 2007)

Sorry to hear that you have not been so good, Sandra. I think that all you can do is just keep nagging at them until they find the right drug, or combination of drugs, to suit you and your condition. Have you mentioned that wine helps? Every little clue can help them choose the right drugs. It may be that something in wine can be found in a certain drug?? 
Do you still attend the pain clinic?


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## raynipper (Aug 4, 2008)

From what I can gather it seems more and more that GPs are guessing on remedies or prescriptions. Many of our family and friends who are ailing end up with a variety if pills that can and do conflict. At times when the ailment is aggravated to the extreme all meds have been stopped and the guesswork starts again.

A couple of times over many years I have been prescribed pills that definitely caused an adverse reaction. And retuning to the GP brought an admission that (in an Asian accent) "We know what the problems is but we just don't know the answer".

Ray.


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## patp (Apr 30, 2007)

I agree, Ray.

There is also the cost factor involved. I am sure that we get the cheapest option available first. It is also given at the lowest dose first. It seems such a waste of everyone's time to have to keep going back for appointments so that they can change to the next most expensive drug or up the dosage. 

I was seriously deficient in Zinc. My GP put me on one dis-solvable tablet a day. Had to give it a couple of months to work. It didn't so he upped it to two. That didn't work after a couple of months etc etc etc. It took four tablets per day, in the end, and over a year of discomfort that could have been prevented if he had done, what they used to do for deficiencies, which was hit it hard in the beginning and reduce as things got better  I think their hands are tied by NICE and money saving but it must be more cost effective to give me one appointment that sorts me out rather than me going back for repeat visit after repeat visit.

It reminds me of working in the vets where an uninsured pet would be offered the cheapest drug available and struggle to get completely better while an insured pet would get the most effective, but more costly, drug available and be on the mend much more quickly. It makes you wonder if a top up medical insurance would be a good idea?


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## raynipper (Aug 4, 2008)

Seems France is somewhat different at the moment in over prescribing meds in the extreme. Every time we have needed to visit the pharmacy, and it been quite often recently, many of the customers before us come away with large carrier bags of boxes of meds! I have been prescribed great boxes of pain killers just in case and rarely use them. So now I ask the pharmacist if any prescribed drug is really necessary?
But creams, potions and pills are still prescribed and sold by the bucket full here. Although I note the prices are often far cheaper than the cost of a prescription in UK.

Ray.


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## aldra (Jul 2, 2009)

Yes they start on the cheaper drugs and work up to the the biological 

Biological rheumatic treatments are quite advanced now.......but more expensive 

I’m guessing they will just increase the dose of the drug I’m on which I’m not very happy about 

I know it’s a lower dose than used in chemotherapy but nevertheless less it remains a dangerous drug with potentially dangerous side effects 

Sandra


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## patp (Apr 30, 2007)

It is all about quality of life, though, isn't it. If your quality of life is compromised then I believe stronger and more expensive drugs are justified. Of course the prescribing physician needs to be made aware of the effect various drugs have on the quality of life. If they are not effective then money is wasted by prescribing them.


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## aldra (Jul 2, 2009)

I think we all become depressed when faced with chronic pain 

Or when our lives are changed drastically from what was our norm 

I guess I am depressed but nothing like the chronic depression some people face , my daughter being one of them 

If I’m honest I sometimes feel glad I’m old now and my life with arthritis is limited 

And I’m conscious that my aortic tissue valve must be coming towards its end , my bit of a cow 

I’m bored with forced inactivity at times 

But I’m grateful that Albert seems to be overcoming multiple cancers , without him I’d be lost 

And fed up that his glaucoma seems to be getting worse and needs laser treatment to his left eye 

We probably won’t book the tunnel for May just in case

We could return our MH to 350, a paper exercise or we could just sell 

It’s not the way we envisioned our later years 

But then again it’s not the way many envisioned theirs 

And we are surrounded by family, kids and grandkids to affirm their mum and dad, grandma and grandad 

Who can no longer feed them on mass , to ensure they met together every week 

A legacy of our time in Israel 

So whatever happens 

We did once upon a time live a full life

Walked the fells, listening to Vagner, trod in footsteps in the snow on Jacs rake 

Trod the cathedral route to pillar

All with our german Shepard’s who are part of our memories 

We dragged our kids, willing and unwilling up with us 

We taught them how to survive on the fells

Maybe we taught them how to survive in life 

And maybe that’s why 

In spite of my life before Albert 

I’ll survive

Sandra


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## Webby1 (Mar 11, 2012)

Well I also remember our walks in the Lakes and our climbs and especially the one up Jacks Rake. So a connection there.

I also distinctly remember that my first post on this site was in response to something you had posted about family problems...............I replied something 

like, well you have done your best and nobody can be expected to do anymore than their best. 

Well that's still my belief...........good luck with all the continuing health issues.


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## aldra (Jul 2, 2009)

Yep we have family problems

A lot of family to have problems with 

Problems that grandkids share with us and our own kids problems 

Problems we can solve, problems we can’t 

6kids, almost 12 grandkids plus 2 

All who remain close to each other .....and to us 

If I feel I haven’t done as well as I should

It’s because I had nothing to judge family life against , no mother to test against 

And yes it seems we do that even subconsciously, for good and bad 

You climbed Jacks rake, well that’s a connection ...I think 

I could take you on just about every climb in the Lake District mountains

Every ridge route 

But I doubt it would make us friends 

But then again we were never destined to be friends were we 

Sandra


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## aldra (Jul 2, 2009)

I have an appointment with the rheumatologist on Monday

I feel a bit guilty that I’m stiff and in pain despite the medication 

It’s stupid I know 

But I feel it’s my fault

And the medical profession often do that

When she told me I needed a walking stick, I tried to tell her my hands were bad at times 

People worse than you use one

But she didn’t ask me why My hands were bad 

She didn’t bother to find out my hands went into spasms, joints seemed to collapse

Which is fine if you are peeling potatoes or chopping carrots

But holding a walking stick ?

So we will see

It’s probabally my fault anyway

Sandra


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## jiwawa (Jun 22, 2007)

No it's NOT your fault and stop thinking it is!

Advice is much easier to give than take, but just keep giving the information you feel they need to hear - until they do actually take notice. 

Good luck tomorrow Sandra.


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## JanHank (Mar 29, 2015)

I have been reading at times Sandra, but nothing I can say will help you, I´m sorry I wish I could.
I´m glad I don´t have your and Alberts problems, maybe it would do you and me good if you could unload some of them onto me to lighten your load and give me something else to think about :grin2:
How can any of this be your fault, maybe the medication is not suitable for you, ask her to try something different, maybe one of the older drugs would suit seeings as your also older >

Good luck tomorrow.


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## patp (Apr 30, 2007)

Medics are, often, very good at tuning out the other problems that we try to pass on to them. That is their problem. Our job is to make sure that they take on board all of the issues that affect our quality of life. If you have to keep repeating yourself or stamping your feet then do so! 

I find that asking the question, at the end of the consultation, like "so, how shall I manage the stick with my painful hands?" wakes them up to the fact that you are not a "condition" but a real person with multiple problems, all of which impact on my quality of life.


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## aldra (Jul 2, 2009)

JanHank said:


> I have been reading at times Sandra, but nothing I can say will help you, I´m sorry I wish I could.
> I´m glad I don´t have your and Alberts problems, maybe it would do you and me good if you could unload some of them onto me to lighten your load and give me something else to think about :grin2:
> How can any of this be your fault, maybe the medication is not suitable for you, ask her to try something different, maybe one of the older drugs would suit seeings as your also older >
> 
> Good luck tomorrow.


Jan

Same here except we share to some degree the same problem

Loss of the life we knew, and I guess we just have to accept it

I'm not sure any of us can unload problems on another at least not the problems we are suffering from

We can through empathy understand, I know well the feeling of loss of a loved one, you know pain, we are both old enough to have experienced many things good and bad

Of course it's not my fault that my body has decided to give up on so many levels

It's not alberts fault he has cancer, although three different cancers is bordering on it >>

But sometimes I feel I'm not fighting my way through it , God knows how many times I've fought through life, maybe I'm just too old now

You take care girl

Sandra


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## aldra (Jul 2, 2009)

Well I didn’t see the consultant but the nurse practitioner 

My joints were not what I consider inflamed, painful but good on a scale from 1 to 10

She checked them, they are all hot and inflamed she told me , blood results are showing increase in inflammatory markers

We really need to increase immunosuppressant drug you are on 

The stiffness require cortisone , I suggest tablets as you seemed to react to the injections and at least you can stop oral medication if symptoms return 

The pain patch was the lowest dose and the consultant already gave the Gp direction to increase it until it controlled the pain to acceptable levels , why did I not know that ?, I’ve struggled for 6 weeks but didn’t realise I could have informed the GP not waited for an appointment for the rheumatologist 

She had the time to listen, an now with the increase in the immunosuppressant drug I’m back to fortnightly blood tests 

I’ll see her again in six weeks 

I didn’t feel I was a nuisance 

It will be spring, and the rats are back on the pond , eating the bird food , trying to survive 

And if that what it takes for them and me to survive 

So be it 

Sandra


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## jiwawa (Jun 22, 2007)

What a difference a sympathetic ear makes! Glad things are looking brighter Sandra!


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