The Scleroderma Society


Hi everyone :)

I have been getting bouts of fatigue for the past few months, and more frequently lately - they last 2-4 days and involve me sleeping day and night and my limbs feeling like lead. This is obviously in stark contrast to the energy levels I am used to. I only really realised how long this has been happening recently when it happened more frequently and my partner said I have had this a few times and I realised he was right.

Is this likely to be SSd or does this not sound familiar? I've only just found out my Dr thinks I have SSd although I've had puffy hands for a year or two now, they've only recently gotten much worse.

I genuinely don't think it's exhaustion as I train 6 days a week and my training is cycled to avoid burning out with rest weeks and I sleep a minimum of 8 hours a night and take very good care of myself - it feels more like a virus, completely out of the blue and doesn't seem to be linked to anything.

Any help very much appreciated, and I hope you're all well :)

Ellie x

6 Replies

Hi Ellie.....

I have all reasaons to think that you are experiencing symptoms of SS. I remember all that plus dragging myself up the stairs on my elbows. I am pretty sure it is not a virus. You probably need immunosuppression, if you are not on it yet, and do not procrastinate.. see your consultant as soon as possible before you become bed-ridden. You definitely need aggressive treatment. My best wishes...


I collapsed at the top of the stairs! Oh dear. I am on hydroxychloroquine and he's considering using mycophenolate next. My hands had gotten much worse recently too. Thank you so much for sharing, I never know what is what


Overwhelming fatigue has been a symptom of my life for years but I am 70 now and not bedridden or in a wheelchair. Sometimes I will ask to be wheeled around a museum or some other big place like a shopping mall or in an airport but usually my husband is happy to drive me right to the door wherever we want to go and I can manage. Keep up the fitness regime as long as you possibly can. Bring it down a notch if you need to but try to keep it up. I gave up completely after a month in hospital 2 years ago but I would be better now I am sure if that hadn't happened.


Thank you judy - I am aiming for the commonwealths and I train 2hrs 6 days a week so I don't plan that to change, only increase gradually. My bf is my coach and writes my programme so I don't overtrain. A fatigue bout has stopped me training once - I did try but I just didn't have the ability to lift my nervous system was so sluggish I had no reflex I just cried and wanted to sleep so I went home and recovered for a couple of days by sleeping then I was totally normal again. It's so strange and no one can see it so it's hard to explain just how crippling it is. People think it's just exhaustion or being tired


Wow! I'm in awe of what you are doing!

I have had just one bout of weakness that has stopped me in my tracks, literally, I am a leisurely runner and have been running most of the Winter, my inital plan being to run a whole marathon this month. I abandoned these plans and entered as part of a relay team.

Last week I was doing my final run and I literally could not run the length of myself. It really shocked me. I managed to do about 8K but, considering my longest run had actually been 16 miles, I was really discouraged and thought I had lost fitness. Thankfully after a week of resting I found my form again but it really threw me.

I have no idea if this was due to overtraining, fighting off a cold or the illness. Maybe a combination of all three. Funny how our bodies can beat us into submission at times. I have every intention to keep training and want to go back to the gym to do cross fit. I abandonned it while I was 'marathon training' (marathon didn't happen).

Good luck with your training! Hope you get on well!


Ironically, it could've done you a favour too - the week complete rest replicates our programme in the week up to a competition where we utilise super compensation to peak :) it really is funny. Remember you won't lose your base fitness in a week, however ill you are, you will always start from ahead (unless the length of time is significant ie years and body composition has changed) get back into strength training ;) and keep me posted :)