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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi everyone,
going throught a bad period at the moment and I have contant nerve tingling throughout my legs, hands and on the top of my head (pins and needles like feelings ) which are going non stop...and driving me around the bend in the process.Was prescribed lyrica but was unable to tolerate the gastro side effects..
Just wondering if anyone else gets these symptoms as they dont seem to be a common feature of cfs/me and how they manage the
that's interesting! I've got numbness in my genital area. One member of this forum, who was a doctor, almost crucified me for suggesting it could be a symptom of ME/CFS, he insisted in that it was impossible, can you believe it?I had tingling and nerve pain in my genital area. After a year or so got referred to a new consultant,, she said she sees it a lot in cfs me patienfs. Shhe proscribed a low dose impramine and it cleared it. I think low dose amytriptaline does a similar thing. I think they are older anti depressants, but at sub therqputic levels they have the effect of damping down the nerves. Might help somene
Hi i also have tingles...nephropathy since around 2002. mine is mostly hands and feet but also across my chest, back and top of head. it moves around. i also have some generalized pain, cold hands, and general cold intolerance..
The bubbling I get in my limbs can go to my buttocks, and too my genital area too, it's unbelievably hard to bare. The pain clinic here believe it is M.E. and/or F.M. related.that's interesting! I've got numbness in my genital area.
Have you found anything that you think helps @cporro
@cporro - I !wouldn't start with a high dose. B1 has been very beneficial for me. However, when I first started taking it (I started with 100 mg.) it boosted my energy in a really nice way, and then a day or 2 later I was hit with severe fatigue. It turns out the B1 caused my phosphorous levels to tank due to refeeding syndrome. The first time I tried B1 this happened, so I stopped it because the fatigue was so bad, I didn't know what was going on. Then I tried it again a few years later, same thing happened, but this time I was able to relate the fatigue to hypophosphatemia.i am about to do a trial of high dose B1. turns out nueropathy can be a symptom.
@cporro - I !wouldn't start with a high dose. B1 has been very beneficial for me. However, when I first started taking it (I started with 100 mg.) it boosted my energy in a really nice way, and then a day or 2 later I was hit with severe fatigue. It turns out the B1 caused my phosphorous levels to tank due to refeeding syndrome.
B6 deficiency can also cause neuropathy. It seems that almost all of the Bs can cause some form of neuropathy. But too much B6 can cause nerve damage too. I had Nutreval testing done which showed a severe B6 deficiency (I don't know why, had been taking a B complex forever) although I didn't have neuropathy. Taking P-5-P did boost my energy however.
to me they shouldn't share the same letter. that's confusing. : ) people often take a complex which could be like mixing harm with help.We're all different and I agree that the Bs have to be trialed separately.
Maybe 1500 mg is what you need then.there seems to be little rhyme or reason to me feeling awful. but during the 1500 mg days i actually felt good.
I hadn't heard of low phosphorous either until I started reading about refeeding syndrome (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/). Hypophosphatemia is the hallmark of refeeding syndrome. And I started reading about refeeding syndrome because of Freddd's posts about hypokalemia and methylfolate and B12. I experienced hypokalemia after starting folate. Interestingly, I had experienced the same awful fatigue before, only I never knew what it was and just had to ride it out. Once I discovered that it was low potassium, it was huge - I could finally do something about this particular fatigue. I currently take about 900 mg. potassium gluconate a day. An easy way to find out if potassium will help you is to drink a few glasses of low-sodium V8 (higher in potassium than regular V8) and see if it makes you feel better.i've never heard of low phosphorus. might be more common in the CFS communities. ditto on the low potassium.
I don't think I have a problem with pyrroles, I don't have an explosive temper. I do have a sister (who doesn't have ME/CFS) who had a B6 deficiency as well, so there may be something genetic going on with me and B6.have you ever heard of pyroles? william walsh believes they cause b6 deficiency. do you have an explosive temper?
...And now I've read about Chris Armstrong's idea that persons with ME/CFS are basically in starvation mode, or have characteristics of starvation. And this theory helps explain to me why I have to take so many nutrients to feel halfway decent, which I never needed before developing ME/CFS. Usual candidates for refeeding syndrome are those who have been malnourished or starving, not apparently healthy looking persons who happen to have ME/CFS...
I have had paresthesia in my hands and feet for the last 3 years and my serum B12 levels have been anywhere from 400 to 1000 and the symptoms do not change...Has anyone come up with a good treatment plan?