Methods of dealing with extreme fatigue?

[Croft1987]

Sometimes I go from feeling normal (relatively speaking) to feeling ridiculously fatigued all of a sudden.

I can't move my arms or legs and struggle finding the energy to speak any louder than a whisper or even turn my head.

Just wanted to see if anybody had any advice on combatting this? Any home made remedies etc... Only thing I've found so far is sometimes eating Kendal mint cake helps a bit, but it's not exactly healthy for long term support.

I have pernicious anaemia and take b12 supplements daily, but I also have an undifferentiated connective tissue disease amongst other things which I have numerous tablets for.

[Jordana88]

Lauren

I found pushing myself to go to Yoga increased my energy levels. I try to go twice a week. I get the b12 injection but I know you said they didn't agree with you. Might be worth asking your gp to do a blood test to check your thyroid?

[Croft1987 in reply to Jordana88]

Ive been going yoga once a week but it's not really helped so far!

The injections left me with really painful acne, I'm not sure how much is down to the b12 and how much is down to the auto immune side of things though!

[Jordana88 in reply to Croft1987]

I would definitely see the GP for a blood test then. My fatigue got so bad and they said it was down to the fibromyalgia. I was spending most of my weekend in bed aching and zombiefied. You can have arthritis and fibromyalgia combined, I'd book in xx

[Hidden]

I have this too but tend to blame it on Sjögren's eye dryness and longstanding insomnia. My friend who has Addison's disease, Osteoporosis with Sjögren's and Raynauds has it so badly that she spends about three days a week in bed. She saw the rheumy recently and he told her it's the Sjögren's that causes fatigue - they don't yet know why though. Once a big house move/ relocation is finally over I'm going to take up Pilates and return to yoga too in the hope that this will bring about an improvement.

[Croft1987 in reply to Hidden]

I was wondering if it was down to sjogrens! My b12 should be under control now so it shouldn't be that.

I've been forcing myself to go for little walks and yoga when I do start to feel weak which does help! But on the bad days I can't move, it's like being hungover without the fun of the night before haha!

I don't think the crappy weather helps either, if it's sunny outside I feel more obliged to go for a walk and get myself moving, calms the reynauds down too... cannot wait for a bit of warm weather!

[Croft1987]

Only had them done a few weeks ago, I know fatigue is a side effect of sjogrens and scleroderma too!

[Hidden]

sclerodharma.com/p/got-musc...

This blog has a reference/quotes from a brilliant study on scleroderma cells & discusses at the biological level what causes fatigue.

Mitochondrial cells lacking creatine (v cheap supplement gym goers use for recovery) and I'd suggest taking d-ribose which is the 5-chain sugar that B12 is broken down into by the body - d-ribose is listed by NHS for chronic fatigue syndrome patients but it's so expensive the NHS doesn't use it for anyone else (we've tried). I get mine from myprotein.com but I'm sure there's other places.

I train several times a week and compete and work full time and also suffer can't-stand-up levels of fatigue with my SSc. I take d-ribose, creatine, and vitamin D tablets (oil capsules because it is absorbed attached to fat cells)

Knowing and understanding there is a biological function (or disfunction) at cellular level saved my sanity. I wrote a huge post on it a while ago on here if you want more info.

[Hidden in reply to Hidden]

Also remember - the more exercise you do, the more mitochondrial cells the muscles produce - so keep exercising (gradually) more

[Hidden in reply to Hidden]

Obviously a regular sleeping pattern is crucial I manage it so I hope this gives you heart and some places to go with it

[Croft1987 in reply to Hidden]

Thanks!

That's definitely an interesting read! Going to look into the d-ribose now!

I'm forcing myself to move more when possible as I've never really been an active person

I struggle sleeping too unfortunately which I know doesn't help at all! I end up with such a dry mouth though because of the sicca that I have to get up multiple times throughout the night for drinks!

[Hidden in reply to Croft1987]

Jug and glass of water by the bed? Good luck - small steps you'll get there

[pallinurse]

Lauren, you have received good info above, so I will just send love and hugs and understanding! It sucks so much to want to do things and one's body just doesn't want to or can't do it. Totally with you. Exercise is the only thing I have found that makes me feel better, but with the effort because of the lung damage, I can do something fun but later am totally wiped out. Can't pack as much into the day as I used to! Trying to learn to accept it and only schedule one "big thing" a day. Here's hoping for moments of joy and energy in every day.