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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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so exhausted it hurts?

fibrodude84

Senior Member
Messages
191
Anyone else like me? I'm so exhausted that it's painful from head to toe. It's like my lack of energy and exhaustion makes me hurt. I want to sleep but I can only sleep at night and it's never refreshing.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Yes. Exactly that. I've tried to explain it to folks... and I'm pretty sure no one completely understands. It's almost like I've just ran a marathon. My entire body is screaming out - 'stop it, go lay down, what are you making me do?!'.

I do have a flu-like body ache. But the exhaustion is additional pain. I'm not tired like, yawning all the time. I'm not tired like you would be after a good, normal, hard day at work. It's more of a physical exhaustion. A 'bone deep' exhaustion.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
My legs have always hurt the most with exhaustion and POTS symptoms, sometimes the pain goes to my arms.
 
Messages
233
@fibrodude84 - Have you tried D-ribose or turmeric curcumin?

D-ribose can help with ATP energy recycling and might take away some soreness from the muscles. Some usage instructions are here. Avoid if you have a corn allergy.

Turmeric curcumin is an anti-inflammatory that can help with fibrin deposits associated with the hypercoagulation found in CFS/FM. Rich also recommended turmeric for raising glutathione here. (Some people have trouble with glutathione, perhaps due to heavy metal toxicity, so I would keep this in mind.)
Put 3g in boiling milk with black pepper, boil an additional 10 minutes, stir, and let cool to a warm temperature and drink. Curcumin is lipophilic and piperine an enhancer for this substance, so they increase the effectiveness.

You can also try aspirin or acetaminophen (Tylenol), though these can lower glutathione levels in the brain and mitochondria, which can hinder your methylation progress. NSAIDs might help with fibrin deposits, too.

Something like heparin can also help with fibrin breakdown.


Be careful about combining meds/supplements. Turmeric curcumin and NSAIDs are blood thinners, for example.


These might help to temporarily reduce pain and restore some sanity.
 

JAM

Jill
Messages
421
Anyone else like me? I'm so exhausted that it's painful from head to toe. It's like my lack of energy and exhaustion makes me hurt. I want to sleep but I can only sleep at night and it's never refreshing.
Yes. Every time I up my dose all my symptoms seem to flare in a cycle. Wednesday evening I didn't have the energy to walk from my kitchen to my bedroom (maybe 10 feet). I was just leaning against the fridge for 5 min. Couldn't even talk when my husband asked me what he could do. All my joints ache when I get like that. Ice on my sacrum helps with my joint pain and migraines.

I am a LMT and can give you some easy self massage tips if you would like.
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
Yes! I use to say I was so tired lying down wasn't even restful enough. Over the past few years though I've come to realize that much of that tired feeling is actually a burning sensation in my muscles. It frequently occurs on the days when I'm also finding myself having a lot of air hunger and shortness of breath. Even little bits of physical activity makes my muscles feel like they cramp up. The more I think about it the more it seems like it's somehow metabolic and connected with acidosis.
 
Messages
64
Yes. Every time I up my dose all my symptoms seem to flare in a cycle. Wednesday evening I didn't have the energy to walk from my kitchen to my bedroom (maybe 10 feet). I was just leaning against the fridge for 5 min. Couldn't even talk when my husband asked me what he could do. All my joints ache when I get like that. Ice on my sacrum helps with my joint pain and migraines.

I am a LMT and can give you some easy self massage tips if you would like.

Just speaking for myself, but I would love to hear of some tips if you don't mind. I always feel like I need a massage when everything feels so bad, although I never do have one so would love something that I could do.
 

JAM

Jill
Messages
421
Just speaking for myself, but I would love to hear of some tips if you don't mind. I always feel like I need a massage when everything feels so bad, although I never do have one so would love something that I could do.
A good general technique is to use a ball, tennis or racquet balls work well. You can lean against a wall or put it under you on the bed to work on points. Be careful not to stay in one place too long. It works on most body parts. If you have a specific area I can give you more specific advice.