Living with Scleroderma and it's "friends"!

I have had scleroderma over 20 years, Raynaud's even longer, and since 2010 my health has declined with lots of other conditions diagnosed resulting in an emergency ileostomy procedure. Life can be up and down and it would sometimes be helpful to chat to like minded people! Prior to 2010 I had a fulfilling career but now it takes effort to get up out of bed. I get fed up of explaining to people what my conditions are, whilst at the same time get sick of hearing my own voice repeating the same words!

16 Replies

  • Hi kimmo you're not alone, in fact I only discovered this place about a week ago but already fit right in.

    I hear you when I say it takes huge efforts to just get it of bed some days. It's an awful feeling and to others not in the know we can look like lazy gits. Truth is far from it though, and to just do what others take for granted takes a massive amount of energy both physically and mentally.

    How are your pain levels I wonder? I ask as I've got Raynauds and Scleroderma (SSc) and I'm wrestling with my pain levels and the meds needed to combat them. I'm slowly becoming of the mind though that more opiates are the lesser of two evils as without them/reduced amounts my little bit of tolerable life is diminishing.

    Anyway, welcome to the forums!


  • Hi Charlie, nice to hear from you especially as you are empathic! Without writing too much, regarding the pain side of things it has been difficult over the years. I must have tried everything the consultant suggested in the early days but nothing worked, bearing in mind they knew very little about the condition back then. I stayed off meds for years putting up with my condition until 2010. Whilst in hospital I was given a complete MOT and new medication prescribed by the rheumatology consultant. To suppress my immune system I take 1440mg daily of mycophenolate sodium together with 50mg of losartan potassium to protect my kidneys. I take meds for sjogrens also plus lots of other things. My pain meds are prescribed by my GP who happens to be a palliative care doctor. I take 1 OxyContin 10mg prolonged release tablet every 12 hours and if I have further discomfort I have OxyNorm liquid which acts quite quickly. I feel extremely lucky to have my GP as he has experience of scleroderma and I can order more liquid, over and above my four 250ml monthly bottles should I require it. I am now on 3 monthly blood tests also. I am unable to manage without my pain meds although I do try to withstand some level of discomfort as opposed to being comatose! The only downside is I can no longer tolerate alcohol and have had to forego certain foods due to my ileostomy. Not sure if any of this helps but let me know how things progress.



  • Sorry for the awful time lapse before replying! Long story but health issues, needless to say, have played a significant part. I feel much better now and am in agreement with you, the less opiates the better! My mind is in enough turmoil without adding more to it. I have recently found out I have to have to go into hospital for the removal of two impacted, abscesses teeth so have to admit I have reached for them more than I have wanted to. I am classed as an 'emergency' 10 weeks and not even seen consultant! Anyway, enough of the rant. Hope you are well. Take care. Kim

  • Hello Kimmo and welcome. I was diagnosed with scleroderma and pulmonary hypertension just before Christmas and my life has been completely turned upside down. I know what you mean about trying to explain to people about my conditions as no one has ever heard of them before let alone what they mean to me and my daily life. I pretty much stopped working and went from being a professional working mum to a disabled stay home mum who is different to all the others overnight. It would be really great to chat with someone else who understands. I am fighting back against these illnesses as best I can and certainly have a lot of living to do despite my physical limitations. X

  • Thank you for the warm welcome! I have had to think long and hard to remember my diagnosis as my memory is awful now. I had three small children then, one a new baby, and just didn't have time to allow this condition to interfere with my life. I was a single parent and wanted to know why at that stage in my life it had happened. I was told it was most likely due to the shock of getting divorced and should be grateful it wasn't cancer or a heart attack! I understand you when you say your life changed overnight as mine did too in 2010. I had an emergency MRI scan but the scleroderma was masking my internal organs and when they operated my colon and large intestine were necrotised, hence the ileostomy. I recovered over a period of time but have not been the same person. I look in the mirror some days and wonder who is staring back at me. I have never had PH but I can't look at them as 'illnesses', I prefer to say conditions and in that way I seem to be able to cope better! Keep up the fight but don't ever make yourself feel bad if you have to let down family and friends. I felt guilty initially as I didn't look that unwell but eventually people came to understand. Good luck for your future endeavours and it's been nice to chat. Keep in touch.


    Kim x

  • You've certainly had a lot to cope with and good on you for getting on with your life. My family certainly give me a very good reason to carry on and fight each day. All the best to you to and will keep in touch. x

  • I'm also in the same boat it does get you down but I'm trying to find other people in the westmidlands area to meat and have coffee with but not to mention the illnesses but no one wants to chin up

  • Thanks for your reply! Like you it would be nice to find someone local so hope your search brings you some luck. Failing that, there are always the people on this forum who are willing to chat and you could always have your coffee to hand! Let me know how things go for you.



  • Repeat, repeat, repeat. The more people know about our condition the better for everyone. The more research goes on the better.

  • Succinct and to the point! As far as I was aware in about 2008 there was a big study being undertaken at Leeds with students taking their PhD to include scleroderma. I haven't heard anything recently though but you are correct about the research. Sometimes it is interesting to research the american sites but a lot of them mention stem cell transplants. I know this will not take place in my lifetime but in years to come who knows what will happen!



  • Just to say that good research is going on along with treatment at the Steffens Scleroderma Center in Albany, NY. I don't have scleroderma but I do have Degos disease, an extremely rare disease which has some overlap with scleroderma. I also used to have Raynaud's, but not since I've been taking Trental (pentoxifylline). And being tired is one of my bugbears - trying not to feel guilty is hard!

  • Hi. I have to admit I have never heard of your condition. The overlap, however, I do understand as lots of my other conditions do the same thing and it can be frustrating. Raynaud's I have had since I was a teenager and have been told it can be a precursor to scleroderma. How true that is I'm not sure! I will mention pentoxifylline when I next see my consultant so thanks for that! Tiredness and fatigue, I agree, are awful and people just can't seem to comprehend why you cancel things at the last minute. I used to feel terribly guilty but not anymore. I think with age comes a different set of rules! Just be like me, pace yourself and know there will be some days worse than others. Take care. Kim

  • I too have deteriorated recently after 15 years coping quite well with systemic scleroderma, lung fibrosis and reynaulds. I know how you feel. Trying to explain how this condition affects my everyday life when no one around me has experienced it. When you haven't got the energy to get out of bed and taking a shower is like running a marathon, is hard to explain to the fit and healthy. I have lots of support from family and friends and they try to understand but it's so hard. I would just love to have my normal life back. I'm trying so hard to do all the things they want me to but I can't. Just have to keep going. X Keep smiling!

  • Like you I have those and a few little extra ailments but because you look normal on the outside(except deformed hands failing eye sight) people can't understand why you don't do more as my father said to me you don't look ill what can you say to that so smile and have what you want when you want it life is to short.

  • I can empathise with you too, especially the shower part! I never use the word 'normal' anymore as I have forgotten what it is. You talk about your condition as do I. The word illness depresses me even more. At least this way I can convince myself that there will be good and bad days and I just have to cope day by day. Planning has gone completely and i'm more a spur of the moment person now. You are correct to say we just have to keep going as regardless of any help we experience, this really is a condition that makes for a lonely place if we allow it. Keep smiling yourself. Regards, Kim.

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