I was diagnosed with scleroderma last year but had raynauds before that. I was not to bad to begin with but now have shortness of breath, joint pain and feeling tired. I made the mistake of going onto some websites which detailed horror stories and left me feeling very worried and scared. Last couple of days have resulted in very poor sleep and loss of apetite. Are these symptoms common in the early stages and do they get any better?
I have become worried about my future but have found some comfort in reading some of the postings on this site.
Is there any hope of a cure and what advice can anyone offer me.
Thank you
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What I would like to share Ninder is something positive to a degree, in that no sympton lasts forever. I have Raynauds, Limited Scleroderma and Sjrogens and my main problem at the moment is GAVE (watermelon stomach) My symptoms seem to go into remission for a bit and reappear some months later. There is no rhyme or reason to any of it. But the fatigue never seems to leave me. My iron levels go up and then way down as they please and i dont know why. Just climbing a few stairs is a mission. And then i feel like I have an unborn baby under my ribcage for a few weeks and that mysteriously disappears again - it is such a rollercoaster. But there is such a lot of support here - you are in the right place now.
Hi Ninder, I understand, I was diagnosed with systemic sclerosis 10 years ago, and relate to the shortness of breath, joint pain , frequent infections and recently taking medication for my swallowing. I have my feeling down times, but I try and succeed mostly to get on with my life and don't think too much about the scleroderma. I do like to nap in the day when I can, and I try to not be over ambitious in how much I can do in a day. I find having a glass of wine at night helps my sleep. Best wishes, and I do understand how you feel. I too, dread the future,, but try to just look forward to each week and not let my mind create problems that may not happen. It is a bizarre disease and from what I have learnt it affects people differently. So one day at a time, as the say. Take care Elaine
Hi Ninder, I was diagnosed this summer but had Raynaud for years beforehand. I also get breathless moving about now and scared myself looking it up online, we’re in a similar position. This forum is very supportive and helps me to stay calm about it all. It’s worth getting in touch with your rheumy if your symptoms are troublesome xx
I'm in a similar places with rapid new symptoms, denial and then trying to get more knowledge.
Diffuse seems very unpredictable ,so there are some trying times.
I've found this forum is really so supportive,so much kindness and advice which is hugely comforting.
Hearing symptoms can come and go is so helpful! I've been having rib pain too and if it's temporary then that's good! Did you get it checked out Mylreaclairelee? I hope it's just a quirk!
I think having a good medical team which lm hoping l will get soon,will be good too.
It is very life changing and there's alot of loss of what you used to be able to do, however there are also alot of positive stories of people finding ways to manage and keep moving!
I am lucky to have a good medical team and am also looking to make a trip to London to see a specialist.
Its worrying to think about the future but have quicly learnt that its about the here and now and living daty to day and focusing on the present.
Taking the physical element out of the way with having a positive mental attitude can help and half the battle is to stay strong mentally and not let it beat you as you otherwise hit a brick wall.
And with so many clinical trials going on there is some hope in finding some sort of cure in the future.
Nidner, I know that you said you have a good medical team so hopefully this has been covered off..
I was diagnosed with scleroderma (limited ssc) 3 years ago although with hindsight I've had it a lot longer. For most of the last 18 months I was ridiculously tired, and also at times getting breathless, although I do have quite a physically demanding job. I was also getting stabbing joint /bone pains in random places like my lower arms. I got quite depressed as I thought 'here we go this is how my life will be now' as I had read so much about fatigue and scleroderma and I was even sent for pulmonary arterial hypertension screening as the breathlessness fitted in with other alarm signals including signs on my echo (negative result, thankfully).
I was anaemic and was put on ferrous fumerate tablets. Then after further bloods, I was diagnosed with severe vitamin D deficiency - almost off the bottom of the scale. This was a real shock to me as I am an outdoor worker and although I am wrapped up in winter, even with Raynauds I am able to wear shorts and certainly short sleeved shirts in summer and I am out of doors all day.
So fast forward to now, my Vit D and my iron levels are now good, due to the supplements. I have massively more energy, do not get that relentless fatigue, I am not depressed, I do not get unexpectedly breathless and I get no stabbing joint pains. When I discussed this success with my rheumy last month, we both concluded it was probably all due to the anaemia and the Vit D deficiency. So make sure that the basics are not being overlooked and I hope you make some positive progress.
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