I have been suffering worsening fatigue cumulating in periods of 2-3 days unable to stand and largely sleeping. As an athlete, this was even more apparent as we monitored my progress - my performance has been steadily progressing but my behaviour in training (excluding sessions missed to "recover") changed from bubbly and involved to collapsing (sometimes literally, sometimes a crawl) on the floor between reps and inability to do very much in terms of reps - a big difference to my training partner who is much happier with lots of lighter reps that'd leave me in agony.
I looked into fatigue: my GP (who seemed to confuse my scleroderma with EDS...clearly doesn't know what either is) pretty much said there's nothing you can do and a very brief conversation where I mentioned it to my Rheumatologist on the phone was along the lines of "yep that's very common" and a trawl of the internet (which brought up the much-acclaimed Spoon Theory on which all NHS advice of managing your energy levels and avoiding doing things so you don't use up what little energy you have).
Then I googled "fatigue with scleroderma" and a blog called Sclerodharma came up which referenced a study where the thigh muscles of scleroderma patients and a control group (non-SSc) were scanned with MRi machines to measure various things at a cellular level in rest and exercise and after exercise.
The findings showed that SSc patients had on average 35% of the ATP and PCr in their muscles.
ATP is the energy molecule which releases energy in aerobic respiration by being broken down into ADP (aerobic: initial burst of energy)
PCr is the molecule which builds up ADP back to ATP (recovery)
Not surprisingly, they found that the SSc patients had longer than double the recovery of their 35% worth of ATP after 10 minutes of exercise (this explained my inability to do reps or beat Hannah at any interval workout ever, despite my secret training and best efforts!)
So what then? Well, there could be any number of biochemical reasons why at a cellular level there is much less ATP and PCr than normal, but my first stop was: what do we make ATP out of and where do we source PCr? I already knew from A'level biology that ATP production is triggered by exercise - the more you need ATP the more your cells make for you to use (hence improvements in fitness). A bit of googling later and I found that Ribose, a short-chain sugar is used by cells to produce ATP and we source it in our diets through vitamin B2. Great. I checked my diet - nope, plenty of that in both food sources and supplemented. Maybe there's a problem in SSc (with 90% of us having gastric problems, this seems possible if not probable) in extracting/digesting/absorping B2 into ribose. So I check, can we supplement with ribose? why yes! Not only can you buy it, the NHS PRESCRIBE it for Chronic Fatigue Syndrome (and some heart problems). Left shaking my head in disbelief this possibility wasn't suggested to me at any level, I ordered 250g of the stuff from MyProtein (other sources are available!).
Now for the PCr. What if I managed to cram my cells to the brim with all the ATP I could house? I am still recovering for longer than twice that of my training partner/team mate/the fat guy next door who does nothing all day (just joking to make a point - the double recovery is that of a normal SSc person - not an athlete comparison). So I say to my fiancé/coach/lodger - what's PCr? it is sourced from CREATINE which is a common supplement used by the gym-going free-weights fraternity in their (literally) vain attempts to bulk up, but what it doesn't do (especially) is directly increase muscle MASS but actually replenishes ATP to allow those muscles to work for longer and sooner than without. So back onto the MyProtein website I went (again...lots of others!).
I intended to test this "first line" attempt at self-help for longer before I posted on here, but I can't hold this in any longer. I took the ribose during my session 2 days ago and once yesterday during a home interval workout (testing it in 2 different training extremes). The lifting session was boiling (UK heatwave and a gym in a shed) and approximately 2 and a quarter hours (usual). I was supposed to take it 30 mins before I started but I go straight from work to training so the lodger had to bring it with him to add to my water. At first I felt like I always do - knackered, legs burning, sitting/laying as much as possible, reasonably quiet and a bit foggy/sleepy/yawning. I always switched on to lift and focussed and drove myself hard, if I didn't I wouldn't have gotten where I have already, but after about 45 minutes I felt like a fog had lifted I didn't even realise was there. By the end (don't ask me why my evil coach puts squats at the end of a session) I was doing back squat triples with over bodyweight and for the first time EVER my legs weren't agony. I am not saying I was popping with energy and suddenly superwoman - I just felt...normal. I could recognise it like an old friend - somehow familiar and I looked at my training partner smiling at me chatting about the next session and realised THIS IS HOW SHE FEELS EVERY SESSION.
I can't comment on the Creatine as I've only had 2 days worth and it has a more build-up-in-the-system sort of effect, but if you have fatigue as part of your scleroderma I would immediately get yourself a small packet of ribose and try it for yourself. If it works for you like it appears to be for me, it'd be a life changer.
I hope this gives you all something to try yourselves and some hope. it is by and far the most crippling symptom I have come across.
A note: MyProtein (see above!) state for athletes to use 5g 30 minutes before exercise but NHS guidelines for chronic fatigue are 5g TDS - more where over-stretched. I have so far only been following the athlete guidelines but am finding the effects continue on and are not short lived