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 .
Intro: I am new here, i am interested... - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
What’s going on? I know how you feel. I am relatively new to this condition, as well.
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
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?
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.
i am taking nifedipine to manage my Raynauds, Hydroxichloroquine and prednisolone,
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.
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.
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.
i am on 200mgs ever since i started it , on May last year.
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
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.
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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