Anyone struggling with the mental aspects of Scleroderma?

Hello guys, I was diagnosed last year with Systemic Sclerosis, Raynauds and and still undergoing tests for possibly RA and various other things. This all seems to have happened really quickly and I have to admit the future terrifies me. My life has changed beyond all recognition, i used to take my dogs out for 2 hour walks, and now im in so much pain i can hardly get out of the chair. Im only 43 but feel like an old, old woman. The constant pain and loss of mobility has really effected me, as has the constant hospital apps, drugs side effects and loss of my social life. A lot of my friends have drifted away as im no longer the fun, active bubbly person I once was. Im a very positive person, i keep busy and still work part time but lately have been really struggling mentally. Can I ask you guys if you have experienced similar, and any meds/self help things that have helped you? Thanks in advance guys

27 Replies

  • Don't be afraid. Things happen in cycles - they come and go and one gets used to it. I am 86. Laughter and distraction are a great help.

  • Thank you for your reply, I must admit im finding music and comedy to be my saving graces at the min !

  • Alot of the reading about scleroderma I did spoke of a need to keep fit and active, which have both physical and mental health benefits. So I stopped watching my daughter at her karate class and started joining in (non contact form) and the stretching alongside regular light exercise makes me feel tired but good, plus I just got my orange belt which was a real buzz.

  • I asked for psychological support from my doctor as stress is a huge factor with the disease - it really helped me in the stages of accepting and learning how to put myself first - sounds simple but in my experience women especially we're not so good at that. I did some cognitive behavioural therapy which was useful and psychological counselling which was very good help. 

  • Thank you I have been seriously considering weather councilling or cbt would help I will have a word with my gp and see whats available in my area

  • I find yoga helps me physically and mentally and I sleep like a log when I've been to a class hope this helps  good luck. Xx

  • Thanks there are some yoga classes local to me I will have a look :)

  • good! hope you find it helpful my yoga teacher has had health issues so she seems to understand and teaches a lot about mindfulness too which helps you put things into perspective :o)

  • Hi luv I have same as u we r same age I feel 4 u Iam in pain all the time Carnt go out on My own some days all I do is feel sorry 4 myself had to finish work 7 years ago don't get any help financial u can message me anytime to see if we can help each other lots luv Sarah x

  • Thats  so kind thank you so much for your support x sorry to hear youve had a bad time

  • Your welcome like I say I know what u going thought no one know until it happens to them I have got a gud husbard n daughter take care message me anytime lots love Sarah x

  • How r doing today luv me not bad had a bad nyt waiting to see heart specialist now with my Panic attacks take care x

  • hi im a not so good at the min thats why ive been a bit quiet. got shingles at the min and its hit me hard this time (had it before ) hope youre ok :)

  • Have you not applied for for Personal Independence Payment?

  • Hi just doing mine now waiting 4 form to come 

  • Make sure you get help to fill the form .go to citizens advice are very good at helping. 

  • Will do ty hope u r ok feel a bit down today some times I do 

  • Had bad day every day it's something different anyway hope get help 

  • Hello yes ive actually just requested the forms, looking forward to filling them in !!

  • Hi,

    More or less the same happened to me last year, to be honest at one point I was suicidal..... I can only say that you will get your head around it eventually. Hopefully once the drugs kick in you will feel better. Be positive, be organised and I'm sure you'll be OK, good luck..

  • I'm so sorry to hear what you are going through. "now i'm in so much pain i can hardly get out of the chair"

    What pain is this, where is it, may I ask?

  • Hi pain is in my hands, feet,knees and back. I know hands and feet are typical sclero but not sure about knees and back. I also get a lot of joint pain and crippling fatigue. Im in the process of switching consultants as my last consultant in her own words "didnt know what to do with me !" Am taking quinine and methotrexate but get horrible side effects and they dont seem to be doing anything much. I know its very common to have more than one autoimmune at once and am wondering 8f ive got some other condition thats causing the pain? Wont know for sure till I see new consultant next month. Thank you so much for your reply there are some lovely (and very knowledgeable)people on here who have been a big help and support over the last few months :) oh forgot to mention nifipedine for my raynauds and a cocktail of pain meds !

  • What dose of Methotrexate? I am on 15 mg per week, without significant side effects. 

    I am using Sildenafil for my Raynaud's and it works well.

    I have a friend with Scleroderma who has knee and back pain, so I think it is normal (if anything in this bewildering disease can be normal).

    Was there anything that you think might have triggered your condition?


  • im only on 10mgs and have had pretty much every side effect going! Nausea,stomach cramps, mouth and throat ulcers (that often get infected) inflamed bleeding gums etc. I was put on injection to help with the symptoms but it hasnt helped. As for a trigger, my whole family has autoimmune issues, my mum and brother have RA (really bad for mum, shes had both knees replaced) and my sister has Fibro and Alopecia. i must admit i dont know a lot about triggers, my Rhuemy did tell me ive had it for years and I had pre-eclampsia in both my pregnancies (eldest is 18) and looking back thats when i think my symptoms began

  • As though physical stress triggers a shift of the immune system into new pathological point of equilibrium?

    In my case, sudden death of my partner + depression + anti-depressant medication = Scleroderma activated, presumably latent as genetic potential for expression. Nothing's for sure, however. 

    I'm sorry to hear the Methotrexate is such a beast. for you. I was expecting it to tear me up but so far it just purrs in a corner.  

  • I'm so sorry to hear about your diagnosis.  I'm 44 and fully understand how you must be feeling after being diagnosed with systemic sclerosis and pulmonary hypertension myself just before Christmas.  At the moment I'm off work on long term sickness and unsure exactly what the future holds.  I've also been affected by mobility issues so am virtually housebound which have been very hard to accept and deal with after leading such a busy life and then being stopped in my tracks by such a sudden and life changing diagnosis.  If you would like to direct message me I'd be really very glad to hear from you. x

  • Hi im sorry to hear things have been so hard for you, thank you for your lovely message will keep in touch :)

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