Intro: I am new here, i am interested... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Intro

Sandy20D
Sandy20D

I am new here, i am interested in sharing information about scleroderma and ways to cope with it, i was diagnosed almost 3 years ago but have been trying to ignore this condition as best as i can, because it is so overwhelming at times, but i find that ignoring it is not the answer, i have been struggling lately and the future fills me with so much anxiety .

17 Replies
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What’s going on? I know how you feel. I am relatively new to this condition, as well.

Sandy20D
Sandy20D in reply to amc282

hello how are you?

Today i am feeling overwhelmed, a lot of pain in my joints, had to leave work earlier because of it am finding hard to cope

amc282
amc282 in reply to Sandy20D

I am hanging in there. Taking each day as it comes, the best I am able. Some days more difficult than others.

Have you spoken to your consultant about a referral for Cognitive Behavioral Therapy yet? It will help you develop coping skills.

Sometimes easier said than done, but worth the effort.

What meds are you taking?

Poppy221
Poppy221 in reply to amc282

A second vote here for cognitive behavioural therapy - and some therapist specialise in people with long term diseases. It does help - it is all about how the state of your body, your mind and your emotions interact - it helps you to stand back and see what is going on, rather than being overwhelmed by it all and going down a dark hole.

Sandy20D
Sandy20D in reply to Poppy221

at this point i am faced with needing to make a decision in terms of work, as i am still working full time, but knowing i cannot cope with that many hours.

Sandy20D
Sandy20D in reply to amc282

i am taking nifedipine to manage my Raynauds, Hydroxichloroquine and prednisolone,

amc282
amc282 in reply to Sandy20D

How are you feeling this morning? Any better? Sometimes, it is best to focus on living minute by minute. I know mindlefullness is a buzz word at the moment, but, stay in the moment whenever possible. What are you doing to be gentle with yourself? Are you resting when possible and eating well? Keep away from stress!I am on Hydroxychloriquine. I find, so far, it manages my pain. I do get some flares and some stiffness in my hands.

Sandy20D
Sandy20D in reply to amc282

i am still in pain but i managed to get a bit of sleep, will call my nurse to see if i can increase my hydroxichloroquine dosage . been reading about muscle relaxants as well even though i am not sure it would help my joints. but planning to ask the nurse.

amc282
amc282 in reply to Sandy20D

What dosage are you on? I was on 400mgs to start then tapered down to 300mgs after 6 months.

Try to do some gentle excercise like stretching. I will put a link to a few SSc website good for that.

Sandy20D
Sandy20D in reply to amc282

i am on 200mgs ever since i started it , on May last year.

amc282
amc282 in reply to Sandy20D

Yes, I would talk to them.

Sandy20D
Sandy20D in reply to amc282

it`s funny but i have felt the progression over the last year and a half. when i first was diagnosed, that first year went smoothly, and then last year i had a panniculitis on my right leg, horrible pain like a knife cutting into it, been on and off work , on and off the GP to try and find a solution, started seeing a dermotologist and did a biopsy, started to use compression socks. been on and off work and i find hard to keep going on a full time shift and need to cut my hours but it is not a easy decision. financially speaking and mentally as well as it keeps my mind busy

amc282
amc282 in reply to Sandy20D

I understand. Try to take one thing at a time. Call the nurse and consultant first and get the medication part sorted. Does your GP know anything about SSc?

I use compression socks as well. I find I can’t go without them now. Especially when standing for periods of time.

Sandy20D
Sandy20D in reply to amc282

my gp does not know much about it even though it was thanks to them i was diagnosed.

amc282
amc282 in reply to Sandy20D

spinsclero.com/

yogaforscleroderma.buzzspro...

Look on YouTube for yoga for scleroderma

It is a women in the US called Kathy Randolph.

Sandy20D
Sandy20D in reply to amc282

thank you.

Kilncadzow
Kilncadzow in reply to Sandy20D

I was diagnosed over 40 years ago and had several years suffering like you - could only walk short distances without pain, could barely climb stairs etc etc. Was treated with Penicillamine and a lot of the symptoms eventually vanished. Now 74 and fitter than many of my friends - only reminder is bent fingers on my right hand. Take heart!

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