Constant nerve tingling ,hands legs ,head..

[Righthammer]

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

 

[August59]

Righthammer - I know how you feel. My nerves flare up on me, and I could see it if there was something stressful going on, but mine tend move on pretty quick (couple of days). Sometimes it feels like someone sticks a pin in my body some where. My feet is what is the most constant nerve pain. And, like you the Lyrica doesn't get it. Major weight gain for me. Neurontin helps some, but it causes leg swelling. A real good B-Complex, especially B-6 and B-12 might help. There are others on here that are much better at the nerve pain.

 

[Nina]

Hi Righthammer,

I do have very bad tingling/vibrating sensations in my legs and feet. It drives me nuts. Strangely, it gets worse in the evening and in the mornings before I get up. Probably not surprising that it gets worse after the tinies bit of overexertion. Tried lots of B-Vitamins but nothing helped.

I probably have a chronic Bartonella infection which might be a reason, apart from that, I'm lost for ideas.

If anyone could shed more light on this I'd be extremely grateful. Not so many PWCs seem to have it, but quite a few do.

Nina

 

[Deb]

Hi Righthammer,
Last year my child got HandFootMouth and I caught a mild case. I had tingling in my hands and feet but not in my head. It disappeared after a few days. Deb

 

[Righthammer]

Hi Deb ,

This has been my one of my main symptoms for the past year along with severe gastric problems mainly upper gas , it has relaxed at some points for days or weeeks but has flared up big time recently..lyrica was the only thing suggested but caused my stomach to react with severe trapped wind ...

It just feels like my whole nervous system is plugged into an electrical source..try telling that to your docs..

It is amazing when it lifts that I feel like a whole new person and have at least 50% more energy...

Nev

 

[Marylib]

I know what you mean, Nev. Feels like you are hooked up to a source of electricity. Drives you nuts. Sometimes klonopin helps (clonazepam.) If you get the liquid kind, you can just take a small dose (comes out in drops.) Otherwise the only other thing I have found that helps is eating small bits of a certain herb. You eat a small bit after dinner and sometimes it will calm down the system.
Marylib

 

[Bayly]

I am trying Neurontin and Petadolex (butterbur) plus low glutamate/aspartate diet. I'm not sure what is working or if my symptoms calmed down some on their own, but the tingling, tightening and numbing in my head has become mild to moderate vs. severe.

 

[Righthammer]

Cheers guys for some suggestions , Marylib I may try that certain herb suggestion if I dont get some relief soon !

 

[dmholmes]

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

Sounds like possible B12 deficiency. I would ask here or here. Take care.

 

[Righthammer]

Sounds like possible B12 deficiency. I would ask here or here. Take care.

I thought that was a good possibility but the docs ruled that out ..my blood results were about 350 or so I think..They said there was no need for injections or supplementation . There are no cfs specialists or good docs here in Ireland so treatment is basically grin and bear it..

Having read some of the threads on B12 it is something I would like to try ..now to get a doc to pescribe it ....

 

[dmholmes]

I thought that was a good possibility but the docs ruled that out ..my blood results were about 350 or so I think..They said there was no need for injections or supplementation . There are no cfs specialists or good docs here in Ireland so treatment is basically grin and bear it..

Having read some of the threads on B12 it is something I would like to try ..now to get a doc to pescribe it ....

Based on what I have learned in the last few months, your docs are wrong. The only thing they ruled out was pernicious anemia, not all B12 deficiency. You don't need a prescription, just some knowledge. Post your symptoms on one of the threads I listed and see what they say.

 

[Summer]

XMRV and Nerve Tissue Damage

I think XMRV may be a main culprit, although not the only one, for a great deal of our nerve pain/sensations/neuropathies, etc. I suspect it is neurotrophic (invades nerve tissue) virus:

"The retrovirus XMRV was first found in humans in 2006, in prostate cancer cells. It has been shown to cause nerve damage, immune deficiency, lymphoma and leukemia in animals."

 

[susan]

Why not look at Fredds b12 site and order the B12 from iherb.com...follow his protocol. I have had this tingling in the hands lately. The Doc gave me a b12 shot and I cant believe how I felt.......went to the mooon and back...thud. Boy did it feel good and now I have to buy these methyl b2 shots and get a local doc to give them to me as I need support faster then the pills

 

[citybug]

I have the nerve tingling in legs and feet, much worse after exertion. Have wondered if it was circulation... Now thinking it is nerve pain. Have been off ginko which I think used to relieve it, and saw recently that ginko helps nerve pain. Worth a try (I'm taking hydroxyB12 shots).

 

[Summer]

As I noted above, in animals XMRV causes nerve damage, and I was diagnosed with nerve inflammation, but another aspect of XMRV infection that would affect nerves is the fact that unlike HIV, XMRV also infects the mitochondria and muscle tissue. Even the low VO2 max in us, low oxygen usage, will affect nerves. Without proper oxygen, nerves are not going to properly nourished, and they are tiny and very susceptible to oxygen deprivation.

Based on that theory, any therapies that increase oxygen usage, improve redox state, suppress viruses and bacteria, balance the Th1/Th2 system, improve NK state, the gut balance, and on and on, should lead to improvement in the nerve issues.

I have permanent nerve damage, but I do have periods where if I am worse globally, the nerve symptoms are as well, or vice versa, if I am better globally, the nerve symptoms are as well.

 

[Nina]

Even the low VO2 max in us, low oxygen usage, will affect nerves.

Does anybody know what is considered low VO2 max? I was told I had about 60% of the norm (0.20 or similar). Not sure if that qualifies as really low or if most PWCs have considerably lower values?

... but I do have periods where if I am worse globally, the nerve symptoms are as well, or vice versa, if I am better globally, the nerve symptoms are as well.

It's the same with me, the better I am overall, the less nerve tingling I have.

 

[Summer]

Does anybody know what is considered low VO2 max? I was told I had about 60% of the norm (0.20 or similar). Not sure if that qualifies as really low or if most PWCs have considerably lower values?

I am no expert in VO2 max numbers, but a few months ago, I did quite a bit of searching around to get a handle on my very bad number. I know at the time my testing was done, 15 or below was a complete disability, and mine was 7. I was told if a well person were put in my body, they would not feel able to move, except maybe their eyelids, but I was used to functioning this way.

I found this and kept it in my files, but I do not have a link:

"Natelson has found that a patient can be expected to function at a comfortable level at around 50-60% of their VO2 max. To illustrate the implications of this formula as it relates to fibromyalgia patients, a person who has a VO2 max of 35 ml/min/kg, is unable to do much more than sedentary desk work."

 

[Summer]

I thought I had seen a quote my Dr. Judy somewhere about nerve involvement in XMRV:

Chronic fatigue syndrome linked to 'cancer virus'

"What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus."

 

[Nina]

Thanks, Summer, this is really interesting!

If only we knew if we have XMRV or not... but time will tell.

 

[Nina]

Hi everyone,

I am pushing this thread back up. The tingling in my legs has gotten so bad it keeps me from sleeping, which of course makes everything else worse, too.

I'm desperate! B12 and B-vitamines don't help at all. It feels like electric current is running through the nerves in my legs. When I get up I don't feel it but I'm now bed-ridden again so it's absolutely unbearable.

Thank you for any ideas, no matter how far-fetched they might seem!

Nina