# A complete mess



## aldra (Jul 2, 2009)

I am a complete mess

No joking

I really do feel am turning to stone 

I am so stiff, walk like a zombie,my joints no longer belong to me

But I try to keep going around the house

Not keen to go out

In between individual joints flare up

And I can't weight bear at all

A few days ago , my left foot, the pain has now disappeared leaving a stiff uncomfortable joint

I've been referred to the hospital

I really hope the specialist can help when I eventually see him

It's been a long fight with GPs telling me it's arthritis , blood tests say alls fine

And me saying I can't walk it's not fine
Finally one listened

Look I said I think I have psoriatic arthritis, my nails are changing

The rash you diagnosed as fungal and gave me so much pain when you prescribed an anti fungal cream

Is now settling with a cream for psoriasis

It's classic psoriatic arthritis and it's taken a year for you to consider it

And I may be wrong

But boy I'm not as wrong as you

He referred me
Not before time

As whatever it is 

It's definitely debilitating me
Although I would be a goodextra in a sci if film

The only good thing, and know I'm not excusing myself

Well maybe

A bottle of wine makes the pain so much easier 

Aldra


----------



## barryd (May 9, 2008)

Sorry to hear that its getting no better Sandra and its taken so long to get anyone to look at it for you. I hope they can start to put you right now.

I started a diet again this week hoping to take some pressure off my knees. Im fed up of it already. Dont mention wine or booze!


----------



## coppo (May 27, 2009)

Best wishes for a speedy diagnosis and recovery Sandra.


Paul.


----------



## dghr272 (Jun 14, 2012)

Feel for you Sandra as a fellow sufferer, but thankfully not to the same extent. 

Sometimes you lose faith in medical folk, my son inherited my psoriatic arthritis genes and ended up medically discharged from the navy, all because a Medical Officer exacerbated his condition by putting him on a really stressful fitness regime that damaged his ankle joints beyond repair.

I find red wine and the Spanish sun and heat really helps me. 

Terry


----------



## jiwawa (Jun 22, 2007)

dghr272 said:


> I find red wine and the Spanish sun and heat really helps me.
> 
> Terry


I guess that's a solution for any ill you could mention - and none come to think of it!

Sandra, I hope you get some relief soon.


----------



## patp (Apr 30, 2007)

Sorry to hear of your struggles with your health and with getting help.


Years ago if we went to the doctor it was because there was, or appeared to be, something wrong with us. Society now bombards doctors with all sorts of aches and pains and I think that doctors almost switch off. I came to the conclusion, a while ago, that, if I was worried, I would tell it like it is and not be so dismissive of my health concerns. I have also learned to go back and try again if not improving rather than accepting my fate.


Hope you get some relief soon.


----------



## Pudsey_Bear (Sep 25, 2008)

aldra said:


> I am a complete mess
> 
> No joking
> 
> ...


You sound like Liz, dead but too bloody minded to lay down, I'm sure if she'd just let others take the strain for a few days she'd feel much better, but will she, no chance so she hobbles round making it all worse.

Sit down and let other do stuff for you, just try it, you're not invincible, you're in pain, stop making it worse.


----------



## aldra (Jul 2, 2009)

Kev, like Liz I daren't stop 

If I did I'd seize up completely, some days I have to as I can't weight bear on a joint and my hopping days are over!!

Then the stiffness is much worse 

Hopefully the specialist will recommend a medication to help ease the stiffness

It isn't helped by the fact I seem to have a lot of calcium deposits in my muscles too

See I really am turning to stone!!!!

Sandra


----------



## nicholsong (May 26, 2009)

Sandra

Sorry to hear that things have worse for you, but goog on you for persisting with the Dr. and insisting on a referal. I hope the specialist can do something for you at last.

Good Luck, Chin up, mouth open, wine down the hatch:wink2::laugh:

Geoff


----------



## suedew (May 10, 2005)

Sandra, are you on statins, most of what you describe was how i reacted to them, not initially, but after a few years, even GP says i am better without.
Hope you get it sorted soon, thought, could the wine be the cause LOL


----------



## nicholsong (May 26, 2009)

suedew said:


> Sandra, are you on statins, most of what you describe was how i reacted to them, not initially, but after a few years, even GP says i am better without.
> Hope you get it sorted soon, thought, *could the wine be the cause *LOL


Sue

How very dare you:surprise::laugh:


----------



## aldra (Jul 2, 2009)

No sue I'm not on Statins

Wine doesn't cause psoriasis, I had it long before I drank alcohol 

As far as I know wine doesn't lay down calcium deposits either, that usually occurs as a result of trauma, ie frozen shoulder is caused by the bodies attempt to repair the injury by laying down calcium

Some psoriasis suffers go on to develop psoriatic arthritis, a type of arthritis similiar to rheumatoid, joints become inflamed and painful, when the pain subsides they become very stiff

Before that stiffness is resolved another joint flares up and the pattern continues

Now if it was gout could be the alcohol, though usually something a bit richer than white wine!!!

Sandra


----------



## aldra (Jul 2, 2009)

Ps

Im slowly turning to stone

And I'm pissed off

Unlike lots wife I didn't look back ( biblical reference )

Well I didn't think I did

Ok I prob did

Imwonderinghow I'd look as a stone statue

No not that good

They would prob grind me down

Sandra


----------



## Easyriders (May 16, 2011)

Psoriasis is a horrible thing, Sandra, and the arthritis that can go with it is very painful, so I feel for you.

John has always suffered from Psoriasis, normally just on his scalp, knees, elbows and a couple of other patches. But many years ago, he had a flare up where his entire body was affected. He spent 6 weeks on daily UV light treatments, and was covered for the rest of the time in coal tar ointment. The usual treatment is steroids, which can raise their own problems and should be used with a doctor's supervision, but sunlight definitely helps. Try to expose your skin to the sun every day - thank goodness summer is almost here.

I fortunately do not have psoriasis, but I do have both tendonitis and arthritis. Normally these affect my shoulder, fingers and toes, and for some reason the top of my left foot, but sometimes I have a flare up that affects every joint in my body. It is always worst when atmospheric pressure is low, and I usually feel better when we have some warm, dry weather. Except recently, when I have had truly horrendous hay fever!

There's always something! try to get some rest and some sunshine, and try not to get stressed, as this makes psoriasis worse. If wine helps you to relax, go for it! Hope you get some effective treatment and feel better soon. Linda


----------



## patp (Apr 30, 2007)

Have you thought of trying Acupuncture. It is very good for pain relief.


----------



## aldra (Jul 2, 2009)

Linda , it is indeed a horrible thing

Myworst area is inside and around my ears, and the scalp around there, which means tangling cream in my hair

I find I'm getting it more and more frequently on my eyelids lately which is difficult to treat and causes discomfort in the corner of the eyes and within the eye itself which feels dry and sore

But as one locum doctor told me, as I sat their with my eyelids and inner eye encrusted, you can't get psoriasis inside your eye

So that's alright then I said, I must just be imagining that the insides of my eyes are affected and sore by what's going on on the outside

I feel so sorry for John going through that, I hate creams on my skin, any cream, I use only serum oil on my face ,expensive but instantly absorbed 

A little baby oil in the bath to replace moisture lotion and Epsom salt baths two or three times a week, really good, the skin softened 

Good it's said to remove excess radiation so Albert also uses it, twice he has been through a month of daily radiation, slight reddening of the skin but nothing more, the skin remained 
soft

He has lymphodema in his arm , well 9 ops, removing large amounts of flesh and lymph systems on an arm that's already had the major lymph nodes removed it's inevitable 

He refuses to acknowledge it, continues to use his arm as though nothing has happened and to the
Delight of his surgeon matches his handshake 

He soaks in an Epsom salt bath several times a week and creams the arm to maintain the skin
in good condition, lymphodemia can cause skin to become hardened 

I'm not saying others should use Epsom salt, at least not without researching it and coming to their own conclusions, there are some contraindications

And actually I'm not sure how I got here

But there you go, my mind works in strange ways

But Epsom salts is said to help the skin with psorisis and other skin disorders

But again research and come to your own decision if you think it could help you

Or if you have no problems but fancy soft skin

Buy online in bulk, very much cheaper 

Aldra


----------



## JanHank (Mar 29, 2015)

Here am I moaning about sleepless nights with painful hips and back due to osteoarthritis, then I read all your troubles. So sorry to hear this Sandra, you deserve good health.
In this country if you want to see a specialist you just ask and it's your choice who you see. We thought it strange, but reading your story we are better off.
I hope you will soon find someone who understands your problems and can help.
Jan


----------



## aldra (Jul 2, 2009)

Depends on the GPs

Some like to cover every test before they refer

And some get it wrong and continue to get it wrong

Sleepless nights with painful hips and back equate to problems equal to my problems Jan

Mostly I'm ok at night unless my joints are really bad or I have cramp

It's during the day when I stagger around like a drunken sailor

And no I'm not drunk, just so stiff I can't really recognise normal movement or balance

Or I just can't walk at all the joint is so painful, but that's not everyday

The wiered thing is I can go to bed and the next morning one of my joints won't weight bear, no warning, the pain will disappear just as suddenly a day or two or so later

Once it disappeared as if nothing had happened, now perhaps with repeated bouts it leaves the joint stiff and inflexible for days

The biggest problem is I'm anxious now about going out as I find it difficult to far or on uneven terrain

Sandra


----------



## Harrers (Dec 21, 2011)

Sandra, I am really sorry to hear about all of your troubles. You mentioned that you were suffering with amongst other things a dryness in the eye and that the doctor said you can't get psoriasis in the eye. Have you thought about looking at Sjogren's Syndrome as one of the symptoms is dry eye. It could also account for the stiffness in the joints that almost seem to be attacking you at random.

I think that for years sufferers from this syndrome were lucky if their GP even recognised it and there was little relief available. However, a lot of research is now being done and I understand that there is now a team working on this at Guys Hospital.


----------



## aldra (Jul 2, 2009)

I'll look at it Harrers

I believe itsbest to look at everything

Not all doctors are amazing

As I found out when my heart valve calcified

I was concerned it could due to my high calcium blood levels 

But the evidence I found was from America 

No chance iwastold, a small calcium deposit on the aortic valve, 10 yrs plus at least before we need to be concerned

Four months later a calcified heart valve needed urgently replacing, a para thyroid tumour needed rgently removing

And now

Well calcium blood levels need to be checked in case it calcifies the valve again 

What? It couldn't calcify the valve I was told, now it seems it can

We have a brilliant health service 
But you need to check andtakeresponsibility for your own health

Sandra


----------



## Easyriders (May 16, 2011)

Hello Aldra, thank you for your reply and your tip about epsom salts, I will get some for John.

You say you don't like getting cream in your hair. For his psoriasis, John uses Betnovate scalp application, which is a liquid. It doesn't show once dry, and is much less messy. He finds if he can control it on his scalp and ears, other areas of his skin also improve.

About your eyes. I also have very dry eyes, and crusting of the eyelids, for a different reason (Grave's eye disease). The best drops for the dryness are called Hylo-forte (prescription only). And to help clear the crusting, you can get a solution from your optician to clean the eye lids, or, as my optician pointed out, you can make your own:

Boil some water and let it cool to a comfortable temperature. Then add one or two drops of baby shampoo - Simple is the best make, Johnson's has perfume in it.

Then use this solution with a clean flannel or some other non-linting cloth to clean the inner and outer part of your eyelids. It doesn't sting, and I've found it really helps. Good luck


----------



## aldra (Jul 2, 2009)

I'm hoping when I see the rheumatologist he will refer me to a skin specialist

I used to see one many years ago and he was excellent

I improved and until the last year or so haven't really been that troubled with it 

Now it seems to have flared up with a vengeance,and in new places, I have so many creams I've forgotten which one goes where!!!!!!

Sandra


----------

