Recently diagnosed with scleroderma

Hi im not sure how I feel right now !!! I was diagnosed with p.b.c in January , and diagnosed yesterday with scleroderma (strong positive blood result) I see a consultant in October. I was just getting used to being diagnosed with p.b.c and I am finding this quite a blow !!! I am struggling to move my joints /my feet and hands keep swelling /I find it hard to swallow/ breath , I feel years older than I should im seriously considering leaving my full time job as im so tired and I carnt concentrate and keep forgetting things. I have questions for anyone to can help me , the first question is can I claim disability for scleroderma? second question is their anyone else who has both auto immune deseases ? Thank you any help or advice would be appreciated.

9 Replies

  • Look forward to October and don't panic. Help is at hand in the form of advice and medication. Download all the relevant leaflets from this site. I cannot believe that a year ago I was feeling the same. I am out of the age group to work so cannot advise but remember you are not alone.

  • I wouldn't quit your job and start researching benefits just yet because there's lots of treatments that can have you feeling miles better and October isn't far away :) hold on tight and keep warm. The hand swelling is a nightmare I am in that stage too but apparently that only lasts a few years itself anyway :) nothing is permanent x

  • hi I have mctd limited scleroderma my hand an foot swells ur comment of it only lasting a few yrs has intetested me does this stop?? I hav noticed less flares im refusing drugs hydroxychloriquin an steriods as iv been feeln normal more but now im thinkn do theses symtoms stop an move to internal organs wher u cant tell the damage bein done.. I thgt the swellin was always gona be an become worse.. its all so confusing an no straight forward answers to any of it but to look at me thets nothin wrong an at min I feel normal hence reason iv refused meds

  • Yes there are lots of us with more than one Autoimmune disorder. I have Systemic Sclerosis, PBC and Sjogren's Syndrome, but don't be too downhearted, these things affect all of us differently and if you get onto treatment early there is a chance of helping to lessen the symptoms. I am 70 now and have lived a more or less usual life. Worked for a while, brought up 2 children and now enjoy our retirement with my husband. I didn't have the chance of modern treatments because I didn't have any skin involvement and nobody recognised the damage to my internal organs for what they were. If you need disability retirement in the future it is available, depending on the severity of your disease.

  • Wait till October, when I was first diagnosed I could hardly move, swollen joints, stiff joints, couldn't get out of the bath etc, 7 years on I work 6 days a week running my own business and go on walking holidays (very short walks!!!!) don't give in to it, it is a rollercoaster ride, lots of ups and downs, but sometimes you feel really quite well and function almost normally, most people still don't know there is anything wrong with me, if they don't notice my hands, and they can't see inside. Chin up, be strong, this time next year you could feel a millions times better, it really can be quite a transformation as long as you keep taking the pills!!!! lol.

  • Hello, Just a message of support - I have PBC and systemic sclerosis. I was only diagnosed 16 months ago - so still trying different combinations of drugs - some work and some don't - but the fatigue is better. I want to say the same as the others - the medications can make a really big difference and some days I feel almost completely normal. Most people don't know I am ill. Try not to make any big life decisions until you have tried some of the drugs . Keep warm and try to find time to try to just chill out and relax. Things will get better.

  • Hi Hettie, don't panic and don't worry. As long as your in the right hands on a Medical basis, your in the right hands. I have Scleroderma and when I was first diagnosed I thought the World had come to an end.

    I am here to tell you that it is manageable with the Health Professionals that you seem already to have in place.

    If for any reason you feel low, you can always pour your feelings out to the nice people on this Forum who are always there to help you. Take care.

  • hi there. i was diagnosed with diffuse scleroderma a year ago.ever since i have put myself through a lot of emotional stress worrying about how my disease will evolve in the future and how able i will be to bring up my child or work. now iam starting to accept it. I am on medication trying to figure out if it is any good and for the first time i feel hopeful. Please try to take good care of yourself and enjoy the most of life. It is important that you do things that please you and that you keep calm and don't panic. Remember you are not alone

  • Thank you all so much for all your comments it really has been a great help ,I will keep you all posted once I have seen my consultant in October .

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