I get a lot of pain in lower arms and legs . It feels like bones being crushed , heavy throbbing aching . My hands and feet can get very sort of arthritic type pain aching throbbing stabbing .
It's all part of PEM
I'm very interested in what you are feeling. If I overdo it exercising, I feel a weak, drained feeling in my lower arms and my legs, and I literally can't move. If I rest for 20 minutes, laying down, eyes closed, and totally turned off, I can usually recover to walk away from the situation, though I can have PEM for up to 5 days. My metabolic testing on a treadmill showed that I am preferentially doing glycolysis and am not using fatty acid oxidation when I should be. The two theories that I have are that I've used up all of the glycogen stores in my muscles faster than I can replenish them or simply that my mitos can't keep up with the energy demand - both I think are different ways of looking at the same thing.
I'm wondering if you may be having a more intense version of it that causes the pain.
Things that help me recover are glutathione and branched chain amino acids, which reduce oxidative stress and feed the mitochondria. NMN and hydrocortisone can also help.
I also had neuropathy from my chemotherapy - my BB atiropathic doctor had me try NAC and alpha lipoic acid, which reduced oxidative stress and repaired my damaged nerves. It makes sense that antioxidants would help damage caused by oxidative stress.
I get a lot of lymph node swelling , left side tinnitus , head pain , ear ache as well as the arm and leg pain
Tinnitus can be low vitamin D, low B6, or low B12. Lymph node swelling suggests a viruses - EBV, HHV6, or CMV?
Look at the pain caused from having the shingles virus attacking the nerves
I don't think we can say there's a link between CFS and herpes as pretty much 100% of the population has encountered herpes viruses. You'd need to find people who'd never had it as a control group, but I don't think they exist.
And, this is why we are still sick... ME/CFS has indeed been linked to EBV and other chronic infections. EBV has also been definitively linked to multiple sclerosis, several types of autoimmunity, and several cancers... Too many doctors Disney SS it as a culprit and don't even consider testing for it or HHV6 or cytomegalovirus, much less enteroviruses, Lyme and co-infections, etc.
If lymph nodes are swollen, particularly with even a slight elevation in WBCs, it would be wise to test, not only for antibodies, but also PCR tests for these common infections
Do u have more knowledge / reading I can do as CFS as autoimmune .. I mostly read is isn't but we do have an abnormal immune response
ME/CFS shares some features of autoimmune illnesses (diseases in which the immune system attacks healthy tissues in own body, like in rheumatoid arthritis). For example, both ME/CFS and most autoimmune diseases are more common in women and both are characterized by increased inflammation
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - CDC