Fatigue - a possible answer

Hey Everyone

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

Bear

(Copied this post from the Scleroderma Society forum into here too)

[Skwiglee]

Fascinating post. Thanks so much. I'm definitely going to look into this. I 'broke down' my body into it's chemical components some years ago. And identified amino acids I was lacking. I also am still learning to walk again. After being so sick on Methotrexate, in bed sick for 2-3 days a week, that my muscles wasted.

To combat this. I decided I needed more protein, to rebuild my muscles. From there I discovered chia seeds. Which are a godsend. As I'm not a big meat eater. I also have a 13 week old whippet puppy, to encourage me further. As I decided that I'd reached a plateau. I could either stay as I am - not too bad, but still completely fatigued. Or fight my way back to full health.

[Hidden in reply to Skwiglee]

Definitely let me know how it works for you

[Skwiglee in reply to Hidden]

Will do, I've ordered some already. Again, thanks for your post xx

[Hidden in reply to Skwiglee]

Did you find any improvement?

[Monika]

Dear Bear, thank you so much for sharing this. I was having one of those awful days where I just couldn't get out of bed (all I did yesterday was a gentle Pilates class) and opened your blog - definitely meant to be! It sounds like something I will be adding to my green smoothie in the morning. I hope your training continues to go well. Best wishes x

[Hidden in reply to Monika]

Monika - I would love to hear how it works for you if you try it As would everyone else I am sure I really hope it has benefits for everyone

[PaleIndian2]

Wow!! After hearing that I now know why when I am walking anywhere my legs feel really achy and heavy. I never realised that it was part of my SSc but fatigue has been my friend for many years and no matter how many times I went to the GP, the usual blood tests came back normal and so I was led to believe that it was because I have disturbed sleep. I will see if my GP will prescribe this Ribose for me. Chances are she has never heard of it. If not my Rheumatologist will be getting a phone call. Thanks for shedding light on this.

[Hidden in reply to PaleIndian2]

PaleIndian2 - Definitely share with the forum if you get hold of some via prescription and also how you find it - I personally am feeling 100 times better (this is day 5) but I would love to hear how everyone else gets on with it too

[Hidden]

Great thread! I'm feeling really happy. I've just been to the gym and not feeling totally broken and ready to sleep for the rest of the day. No idea why I suddenly feel more energetic and like I can concentrate on things like books and TV programmes... Whatever it is, I'm grateful!

[Hidden in reply to Hidden]

that sounds great I love that feeling. I am back to dancing with my poor jack Russell in the kitchen whilst I cook dinner after a full day at work and 2 hours weightlifting - that's more like it B)

[lilbit]

Drinking milk after excersise replaces creatine i believe

[Hidden in reply to lilbit]

That's useful info I can't have dairy, but I am sure everyone who can will find that helpful

[lilbit]

Saw it on a tv program. It proved far better for boys after a rugby or footy game than sports drinks cos help the recovery. Can be any variety.

[Hidden in reply to lilbit]

I'm sure you did that doesn't surprise me as sports drinks are just glucose and caffeine.

As I have an autoimmune disease, I avoid all dietary sources of lectins (dairy including lactose free, cereals) and processed/fruit sugars as they hugely increase systemic inflammation.

Just to clarify, D-ribose and creatine are not found in common sports drinks.

[Hidden]

The best recovery drink after a long run is apparently chocolate milk. I'm not complaining about that now! I haven't cut out milk... I can't figure out what I would eat if I cut out everything i keep getting told to cut out. I also like the 'Nuuns' tablets (or similar) for replacing lost salts during a run. I'm a very salty sweater!

[Hidden in reply to Hidden]

haha yes I've heard this too. My bf delights in the occasional chocolate milk as recovery. Unfortunately for me it would be less recovery more throwing up and having a huge stomach and possibly A&E admittance. It isn't so much what I am told I can't have as what my guts tell me I can't have. I think I have a much bigger gastro-involvement than has been recognised to date. I've regurgitated dry foods before because of swallowing being tricky and last year was hospitalised twice for a fortnight because I was passing blood, couldn't stop going and throwing up - they thought I had crohns. I half wonder if I am in early stages of gastroparesis, although I deeply hope not. There's a lot I can't eat but I prefer to become incredibly good at cooking what I can eat - I am a self-professed fantastic chef hehe

Those nuuns tablets sound handy I usually drink coconut water or electrolytes from MyP (again!) if I am struggling with hydration but to be honest, all I drink is water all day long so I am pretty hydrated to the eyeballs 8)

[Hidden]

Hi, I suffer with extreme fatigue and I always feel like I have had a heavy workout even though I dont go to the gym. My muscles hurt and always feel like I went for the "burn". Do you think D-ribose and Creatine might help me? If so how do you recommend I take it, bearing in mind I dont/cant do strenuous exercise. I have MCTD, Systemic sclerosis, Raynauds and Scleroderma.

[Hidden in reply to Hidden]

I would definitely try it I only explain with my exercise as a sort of worst case it still worked

[Hidden]

Hi everyone - did any of you try ribose and/or creatine and if so, how did you find it?

I've also added Oxyshred to my shopping list - there's others on the market but I need to do some comparative research so I don't sound like I am endorsing companies like adverts (!) and then I think I may start a blog about sport, illness and health because I find it fascinating

I really hope this has helped some of you xxxx