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Constant nerve tingling ,hands legs ,head..

SaraM

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Methyl B 12 and Carlson fish oil have done a great job for me. LDN and quercetin worked for just one week.Tests were useless in my case.
 
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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?
 

Timaca

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I have burning, sparking, crawling nerves all over my body. It was one of my first CFS symptoms, and it sent me to many neurologists (none knew what was going on).

@tokyo99 ~ I did notice, after doing an elimination diet, and testing wheat, that wheat made my symptoms really worse. So, I don't eat wheat anymore. It seems I also have problems with oats and corn, although I *might* test corn in a couple of weeks.....

This article may be of interest to you: https://www.glutenfreesociety.org/gluten-sensitivity-a-common-cause-of-peripheral-neuropathy/

Best,
 
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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
I'm hoping that Righthammer is able to see this message and give us an update on the state of his/her health. I'm also hoping that Righthammer is feeling much better.

- Paul
 
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I believe fluroqunolone antibiotics over several years caused my pain particularly in my hands and fee...Dryness, itchiness, yes was prescribed Lyrica but decided not to go ahead....Anyone here has FQ's?
 
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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
 

lauluce

as long as you manage to stay alive, there's hope
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this is exactly how my ME started, pins and needles and burning sensations in my mouth, then my head, then hands and feet, and finally the whole body. It's been like this for 20 years already
 

lauluce

as long as you manage to stay alive, there's hope
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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
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?
There are more clues in my case, I actually had bot oral and genital herpes, both starting at 16 years old. I didn't acquired them trough sexual activities, as I never had any before that time. Years later I was checked for igg antibodies for both hsv-1 and hsv-2, both came out positive, while igm came out negative. hsv-2 is known to reside in dorsal root ganglia in the sacral region during their "dormant" phase, the very ganglia from which the nerves that carry sensation from genitalia arise.
A disease called "Elsberg syndrome" exists where nerves in the area are symptomatically affected by HSV-2:

"Elsberg syndrome (ES) is an established but often unrecognized cause of acute lumbosacral radiculitis with myelitis related to recent herpes virus infection. We defined ES, determined its frequency in patients with cauda equina syndrome (CES) with myelitis, and evaluated its clinical, radiologic, and microbiologic features and outcomes. " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5427668/

What I'm trying to say, of course, is that this genital neurological symptoms may be related to HSV, which as often been asociated with ME/CFS. Could a HSV-1 and 2 antibody test performed on blood and if possible on CSF of any use?
 
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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.

as others have said tests need to be scrutinized before trusted. some tests aren't reliable, others have bad reference ranges. the "standard of care" tests for both adrenal fatigue and thyroid are flawed imo.

have you looked into B1? i am about to do a trial of high dose B1. turns out nueropathy can be a symptom. B1 also emerged as the highest probability thing to take from a citizen science site that focuses on microbe and symptoms. http://microbiomeprescription.azurewebsites.net/

i have a hard time predicting what causes these tingles. they come and go.

one thing i think i've learned is that b vitamins should not be clumped together. i highly suspect folic acid (B9) makes my depression worse. this is based on personal trials and lab tests done (based on william walsh's research). i have also done a 3 month trial of high dose B12 and seemed to feel nothing. i'm of the opinion now that B vitamins need to be looked at individually....not as a complex. I am also interested in what co-factors are worth taking with B vits or perhaps what food cofactors (red meat) could be taken with them.
 

Loomcgoo

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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..
I have had similar over this last year. I've tried separate B supplements. I'm currently taking a high dose magnesium and zinc. They do seem to be lessening but I still go through attacks. Have you found anything that you think helps @cporro

The attacks can be hard to survive after 24-72 hours I just want it to stop, that's when it feels I'm being blasted in a jacuzzi of bubbles. My skin goes sensitive and I feel fragile, often with digestive issues and upset tummy (like I have a sickness bug). I think it's all linked.

There has been slight improvement, but everyday can be trial. I'm sure there are answers, somewhere.
 

Loomcgoo

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that's interesting! I've got numbness in my genital area.
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.

I can get weird vibrations too, as well as goosebumps that go over the whole of my body (although that only lasts a few moments). The fizzing, bubbling and vibrating is mostly low level but when it switches on full I just want out of my body - it really is torturous.

I also hear a low level hum with these symptoms, and experience tinnitus (high pitched, sloshing and white noise). I feel my nerves are misfiring and not responding to stimulation correctly, there seems to be no rhyme or reason.

I cannot stand the washing machine, hoover etc at these times too.
 
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Have you found anything that you think helps @cporro
i wish. i can't even figure out what brings this on. stress seems to be linked.

a doctor suggested ms about 10 years ago. they did the test where you look down. i'm sure not definitive. then said i could do more testing. i didn't. perhaps i will circle back.

i have looked into EMF exposure, the mercury in my fillings, b12, vit D, magnesium, zinc. had some painful tests done for carpel tunnel (it showed up in my hands arms at first), testosterone, thyroid.

i can only imageine what my doctors think when i tell them that it moves around, that it's often worse in the morning (when i'm rested).

fortunely it's not what i consider to be one of my worse symptoms. at it's worse it has sent me home from work and made me only capable of sitting in a bath. but it's not nearly has life altering as my depression and fatigue.
 

Mary

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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. 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 drank I think 3 glasses of kefir (high in phosphate) and sure enough, within a few hours the horrible fatigue started to go away. I eventually bought a phosphate supplement which I continue to take about every other day.

It is a little scary to me to think how I would have reacted if I'd taken a higher dose of B1. The fatigue was bad enough with 100 mg. Now I do well with 300 mg. of B1 a day, but definitely could not and should not have started with that amount!

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.

We're all different and I agree that the Bs have to be trialed separately. I take a lot of B12, folate, P-5-P, B1, but I don't do well with extra B2, unlike a lot of people.

And don't forget about the potential for hypokalemia (low potassium), very common when starting folate and/or B12. It can also cause its own severe fatigue, which was different than the fatigue caused by low phosphorous. When I started methylfolate, it boosted my energy and then a day or two later I was hit with bad fatigue due to low potassium. There's lots written about this on the board here. Also, people with ME/CFS often have low intracellular potassium despite normal serum levels.
 
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@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.
luckily this was not the case for me. i did 1500 mg for 2 days. started at 500mg and worked up to that over about a week. my notes on it say it was inconclusive. there seems to be little rhyme or reason to me feeling awful. but during the 1500 mg days i actually felt good.

i've never heard of low phosphorus. might be more common in the CFS communities. ditto on the low potassium.

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.
have you ever heard of pyroles? william walsh believes they cause b6 deficiency. do you have an explosive temper? I was on b6 as well as that more active form, p5p, and 70mg zinc for 6 months to treat elevated pyroles. didn't work for me but might work for others.

We're all different and I agree that the Bs have to be trialed separately.
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.

I've never felt the energizing effects of any B vitamin. However folate makes me feel depressed in a few days. So confusing.
 

Mary

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there seems to be little rhyme or reason to me feeling awful. but during the 1500 mg days i actually felt good.
Maybe 1500 mg is what you need then.
i've never heard of low phosphorus. might be more common in the CFS communities. ditto on the low potassium.
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.

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. If I'd never become aware of refeeding syndrome, I would be much worse off. I would have had to stop the methylfolate because I got so wiped out from low potassium, and could not have been able to tolerate B1 either.

have you ever heard of pyroles? william walsh believes they cause b6 deficiency. do you have an explosive temper?
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.

We are all so very different, which can make it hard to figure out what is going on!

One other thing that has helped me a lot are branched chain amino acids. There are several posts about this, you might want to check it out. They've helped many people here and cut my PEM recovery time by more than half. I've been taking them for over 4 years now.
 

BeADocToGoTo1

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...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 had sent Chris Armstrong an email a year ago about my book in the hope he could use the information in his studies as the impact of malabsorption, through whatever root cause, and nutrient deficiencies is crucial. Something mainstream doctors should focus on much more by way of nutrient testing like the organic acid tests. Especially when nutrient defiencies are caught early enough, before too much damage has been done, it would lower suffering quite a bit I believe.

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?
This is a perfect example where nutrient testing should have been #1 on the list for the doctor to do. I also had ever increasing paresthesia (fingers, hands, toes, feet, legs, arms, neck, scalp) that was scary. I went to a top spine surgeon since initially the thought was nerve and spinal issues. Many MRIs, other tests, and many doctors later, eventually I was able to ask for the right tests to do. The crucial piece was the nutritional testing (Genova FMV and Great Plains Lab OAT) that pointed to nutrient deficiencies, which then led to malabsorption, which then led to pancreas damage and exocrine pancreatic insufficiency. Those tests also helped with SIBO and Candida yeast overgrowth findings, which are also causes of malabsorption and nutrient deficiencies. I gather this is an old post, but @tokyo99, please check out if you have any form of malabsorption, (e.g. gallbladder, pancreas issues, SIBO, Candida overgrowth, Chrohn's IBD, etc.) and nutrient deficiencies.