Do you get so you can’t move?

[PenelopeClearwater]

I keep getting so exhausted that I can barely move my limbs as they feel so heavy. It’s not something I’ve particularly experienced until recently and was wondering if anyone else gets it?

[Jaycee18]

Hi, yes I go through spells of feeling like that. I describe it as feeling like someone has tied heavy weights to my limbs that I am forced to carry around.

Sorry but I haven’t found a real way of dealing with it other than trying to listen to my body and give in and rest when I need to.

[PenelopeClearwater in reply to Jaycee18]

Thanks for replying ☺️ it’s such a strange feeling, I was worried I was just being over dramatic. Really nice to know it’s not just me.

[Kitten-kat23]

Hi, yes I do. I have periods where I say I’ve hit a wall. Unfortunately I haven’t found a way to deal with it, except staying in bed till I feel able to move around again. I’m sorry I can’t be more helpful. Hope you feel better soon hugs.

[PenelopeClearwater in reply to Kitten-kat23]

It’s so helpful just knowing I’m not imagining it. GPs have got me to the stage where I second guess every symptom I have “it’s all in your head”… 🙄

Thanks lovely ☺️

[Yassytina FMA UK Volunteer in reply to Kitten-kat23]

Hello Debs are are you doing ? Cannot wait for the Spring now as my bones etc will be happier and at least get more fresh air and hopefully some Sun xx

[Butterfleye]

Yes I get like this especially if I've overdone it, my body is too heavy and sore to move. I also get, usually when I'm in bed that my mind is working but I can't physically move my body, I can hear the phone ring but won't be able to move to answer it.

Neither are very pleasant to experience.

And I totally understand where you're coming from as regards the Drs, so nice when after writing something on here you end up with a couple of answers of other people saying they've experienced the exact same thing, it's definitely NOT all in our heads (it's in every other part of our body too 😂).

[PenelopeClearwater in reply to Butterfleye]

Yes! I struggle to text when the phone is actually in my hand… I just look at it and try to will my thumbs to move 😅

[Butterfleye in reply to PenelopeClearwater]

I get like that with my lower legs, when they just won't move, I try to move them with my mind!! 😂.

[Yassytina FMA UK Volunteer]

Oh yes the I’ve hit a brick wall days, so I ride them out with a lot more rest and the much needed soak in the bath😀 I always say to my friend there’s no petrol in the tank today ,so going no where🤣x

[Acdf]

I get that feeling in my lower legs regularly usually if I'm really tired along with a tingling fizzing feeling very tiring I think it's Restless leg syndrome

[SilverWhistle54]

Yes i get it too the trick is to pace which is easy to say but harder to do, and as has been mentioned listening to your body and try to relax. I relax in a hot bath with amoratherapy oils and candles.

[KimiJay]

This feeling of utter exhaustion is what I classify as a Flare. To some extent I have left the worst of this sort of thing behind but in the early days post diagnosis it felt unbelievable to have lost so much vitality and to literally have to lie on the floor for my energy to recoup sufficiently to crawl to a comfortable, safe, place to lie down. It's very much the cfs aspect of fibro. What changed some of it for me was discovering the simple sugar known as d-ribose. Expensive enough, but I think taking that early in the day helped me gain half my life back. No more than that though. Some people talk about adrenal exhaustion. I'm sure there is something in that too. - I think it is important to take this heavy tiredness seriously. My first real experience of it happened on a cold winter's day when I forced myself to go out and get some exercise. I reached a stile and there was no way I could climb it. I just had an overpowering feeling I just wanted to lie down in the hedgerow there and then and give in to the exhaustion. I had the sense to ring home for help and the luck to be in an unfenced field close to a road, so do take this exhaustion seriously. It can suddenly weigh down on you and even make you want to sleep while driving. You will find your own ways to manage it. Enough rest is essential.

[PenelopeClearwater in reply to KimiJay]

Thank you, Kimi - that’s really helpful advice 💙

[JayCeon in reply to KimiJay]

"In the beginning" it was more the pain that characterized my fibro. The more I got the local pains down and at least managed to keep the Ache sort of a bay, the more this 'cfs' aspect remained and showed me that I was never going to get back anything like normal work ever again, despite the tons of treatments that I've done and still do. But it's only the MCAS from the jabs that has finally floored me most of the time. I'm fine if I don't move, so I use the world at my fingertips, but I keep busy moving like a tortoise. I'm even developing a way of playing a little more table tennis again without too much fatigue and pain coming up, by hardly moving my feet and using my arms snappily, with as little energy as possible. Like before discovering GABA, I need long breaks again in between and now my mate has to get almost every ball that I can't snap out of the air or kick to him. Thanks for the ribose-encouragement, a half full tub is sitting here and the last times I tried it I didn't get any GI problems anymore - however it didn't help that much. I'll try it like you say earlier in the day, see if that makes a difference! I've markered it big on my blog for weeks and months, but I'm not sure it's helping at all, like it has occasionally in the past....

[KimiJay in reply to JayCeon]

The tortoise tennis still sounds impressive and that you are managing to extract a small amount of fun out of the wreckage of fibro. - It makes me think that some fairly slow Tai Chi might work for you. I used to do Daoist TC some years ago but the energy made me feel very strange and heady so I stopped but it can get addictive. There are different sorts of TC and basic very short sets of moves on video sites. The basic repetition of raising and lowering of hands is quite relaxing. That and the nine calming breaths of yoga is as far as I go mostly now and it is only once on a while. - I don't take d-ribose all the time either. - Do you have access to a steam shower? Quite good if you can summon the energy and have someone to keep an eye on you. It might clear some c..p out of your system that you don't want there. - My son has a bottle of liposomal vitamin c - It's vit c in oil and I am trying it. - (One of the main characteristics of Fibromyalgia is that people who have it are prepared to try anything to make a difference!) May warmer weather bring you greater speed!

[JayCeon in reply to KimiJay]

Hi Kimi - yep, bad to miss all the laughs of table tennis! Probably looks more like an octopus than a tortoise....

Actually it's the slowness of Tai Chi and Qi Gong which are a big problem for me! My exercises & stretches need to be short and snappy, before the exhaustion and pain sets in. When I took part at my fibro/rheum. clinic I was the only fibromite in pain after a few minutes. The only workaround I found at home is a youtube video saying I could do it lying on my back if need be. I've managed to increase the length of stretches a bit more now. But best for me are stints of 20'', and breaks after 5'.

For breathing exercises Wim Hof's one is by far the best for me, can really get pain & fatigue down, energy up youtube.com/watch?v=tybOi4h...(Not working as expected?).

I tried increased amounts of D-ribose the last few days and it did absolutely nothing. However my 7th acupuncture yesterday was brilliant, I can't quite believe it, cos it's my 3rd stint, and this Chinese doc is the first to manage to do it so it doesn't hurt while doing it, and now the first time it's actually really helped a lot, pain and fatigue. I didn't play brilliantly this morning, usually win, and lost every game, but only slow pain build up, no exhaustion, no stiffness. Losing happens when my body needs to re-adjust to something. Better that way round!

Turning the acupuncture stone over the 2nd time again proves that we're prepared to try 'anything' - all tho I think some more than others...

I do prefer very short cold showers, sauna heat was always strenuous. Actually proven to cut the c..p, meaning pro-inflammatory cytokines etc. Again prepared to try anything...