How many of us have neuropathic pain/damage; both peripheral and autonomic?

How Many of Us Have Neuropathy? (autonomic and peripheral)


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TCP36

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I was interested to find out what percentage of members experience nerve pain which can be shooting/burning/prickling/stabbing/freezing/trickling etc. I have peripheral and autonomic neuropathy affecting all limbs and torso, which has led to POTS and other problems. The neuropathy has effected my heart-rate (tachycardia), BP, breathing, liver, bowel and bladder.​
In this poll I am mainly looking at pain as the indicator that something is amiss. I believe those with ME/CFS who have AN and PN are classed as a sub-group!​
 

soxfan

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I have neuropathy in my left calf and foot which is exactly how you described it. I also have continous muscle twitching in the calf and foot. I don't have this any place else on my body. It was my first symptom in 2004 and has become worse over the years. I had an EMG and it was a normal test. Doctors have no idea why I only have it there.
 

heapsreal

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lower legs pains like shin splints, sometimes a prickly feeling. I seem to have it mostly controlled with neurontin but it does play up when im in a crash. Also can get it across the top of my upper back/shoulders. I have never been officially diagnosed with neuropathic pain as such but it was terrible especially at night until i started treating it and in the beginning of my cfs/me journey, sleep meds have also helped. no pots diagnoses but im sure most of us have some degree of pots/oi?? As a sub group classification i would put myself in the herpes ebv/cmv sub group with myalgia's/nerve pain.

I also have a theory that herpes viruses which like to hide out in nerves and the nervous system can have alot to do with pain we feel, but just a theory.

cheers!!!
 

TCP36

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Hi. My ME/CFS started in 1984 and in 2007 the neuropathy spread up my body and now effected from throat to toes. Mainly burning pain all the time. Lying down is the only relief I get. I also get the tight painful corset around my middle. MS has been ruled out.
 

TCP36

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Not sure if mine was triggered by surgery as my toes started to go red some time after an abdominal op. Hard to tel sometimes.
 

Little Bluestem

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I do not have neurological pain, but I became 'clumsy' several years into my ME. I stumble and trip, and fumble and drop things a lot more than I used to. Is this a neurological problem?
 

TCP36

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I do not have neurological pain, but I became 'clumsy' several years into my ME. I stumble and trip, and fumble and drop things a lot more than I used to. Is this a neurological problem?
I'm no expert, but I would think so. Many neurological disorders cause clumsiness, such as in Huntington's Disease and MS. I was clumsy prior to the neuropathy coming on and I am still that way!
 

TCP36

I'm not giving up, despite the setbacks and BS!
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lower legs pains like shin splints, sometimes a prickly feeling. I seem to have it mostly controlled with neurontin but it does play up when im in a crash. Also can get it across the top of my upper back/shoulders. I have never been officially diagnosed with neuropathic pain as such but it was terrible especially at night until i started treating it and in the beginning of my cfs/me journey, sleep meds have also helped. no pots diagnoses but im sure most of us have some degree of pots/oi?? As a sub group classification i would put myself in the herpes ebv/cmv sub group with myalgia's/nerve pain.

I also have a theory that herpes viruses which like to hide out in nerves and the nervous system can have alot to do with pain we feel, but just a theory.

cheers!!!
I also fit into the EBV group, so lots of overlaps!
 

MeSci

ME/CFS since 1995; activity level 6?
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I do not have neurological pain, but I became 'clumsy' several years into my ME. I stumble and trip, and fumble and drop things a lot more than I used to. Is this a neurological problem?
Have you voted? I just did, and I am the only one so far to say "I have no neuropathic pain."

To be honest, I'm not always 100% sure what is causing any pain that I get, but it seems to me that it is overwhelmingly muscular due to muscle fatigue or muscle tension. I'm glad someone started this thread, as I seem to be in a small minority of fortunate people to have very little pain. and wonder what accounts for the differences.
 

Tristen

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Yea, I've had lower extremity neuropathic pain, numbness, and motor weakness, for several years. Supposedly not connected to the me/cfs.....but it does fluctuate in severity along with all my me/cfs flares.

I no longer have obvious autonomic dysfunction. Maybe some that I'm unaware of.....but compared to the days of severe OI, POTS, etc....I'd say not. The worst I can recognize now is a bit of heart dysrythmia's when I flare really bad. I view these autonomic symptoms coming more from a cerebral blood flow insufficiency, rather than a neuropathy.
 

TCP36

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Have you voted? I just did, and I am the only one so far to say "I have no neuropathic pain."

To be honest, I'm not always 100% sure what is causing any pain that I get, but it seems to me that it is overwhelmingly muscular due to muscle fatigue or muscle tension. I'm glad someone started this thread, as I seem to be in a small minority of fortunate people to have very little pain. and wonder what accounts for the differences.
Hi. I used to have muscular aches and pains, but now have neuropathy. I think the muscular pain was neurological rather than actual fatigue related, but I could be wrong. I get cramping, as well and spasm, now as I did before. My neuropathy came on after surgery and trauma. Not everyone with ME develops it or as much as I have it. I have found dietary changes, supplements, massage and gentle movement have helped the most.
 

TCP36

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Yea, I've had lower extremity neuropathic pain, numbness, and motor weakness, for several years. Supposedly not connected to the me/cfs.....but it does fluctuate in severity along with all my me/cfs flares.

I no longer have obvious autonomic dysfunction. Maybe some that I'm unaware of.....but compared to the days of severe OI, POTS, etc....I'd say not. The worst I can recognize now is a bit of heart dysrythmia's when I flare really bad. I view these autonomic symptoms coming more from a cerebral blood flow insufficiency, rather than a neuropathy.
Wow! That is interesting when you say the peripheral neuropathy is not related to the ME, what makes you say that? My belief and that of a team of neurologists is that as the ME is neuro-autoimmune-related that it was the ME that brought it on.

I am also interested in you saying the AN/POTS/OI had abated; can you account for this? Mine is severe and I am now having to take meds and steps to off-set some of the issues that are connected with it. Autonomic neuropathy does effect the blood-flow to the brain, hence dizziness and many of the POTS/OI symptoms. It has affected my heart-rate, BP, postural changes, breathing etc. All connected as the nervous system controls blood-flow in the blood-vessels and muscle contractions.

I have dialogue with a doctor who treats thousands of neuropathy patients and he has taught me so much. It is amazingly complex but manageable as conditions go.
 

anniekim

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I thought nerve pain in many people with m.e is not due to damaged nerves as in classic neuropathy but due to altered/malfunctioning nerves? Of course m.e doesn't preclude getting other conditions on top!
 

TCP36

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Maybe. Even the neurologists I spoke to weren't 100% sure what was going on. I likened it to other auto-immune and neurological disorders and the neuropathy being part of that. I have the classic MS Hug and I know it's linked to the nerves in my bowel. All very complex and puzzling.

As neuropathy is damaged/inflamed nerves, then something is causing it.
 

Tristen

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Wow! That is interesting when you say the peripheral neuropathy is not related to the ME, what makes you say that? My belief and that of a team of neurologists is that as the ME is neuro-autoimmune-related that it was the ME that brought it on.

I am also interested in you saying the AN/POTS/OI had abated; can you account for this? Mine is severe and I am now having to take meds and steps to off-set some of the issues that are connected with it. Autonomic neuropathy does effect the blood-flow to the brain, hence dizziness and many of the POTS/OI symptoms. It has affected my heart-rate, BP, postural changes, breathing etc. All connected as the nervous system controls blood-flow in the blood-vessels and muscle contractions.

I have dialogue with a doctor who treats thousands of neuropathy patients and he has taught me so much. It is amazingly complex but manageable as conditions go.

I thought the peripheral neuropathy was unrelated to the me/cfs because I do have lower disk problems, mostly caused by osteoarthritis and spondyloarthopathy. But I could be wrong about it not being connected because as I said, the problem does fluctuate with the me/cfs symptoms. Also, I may be wrong because I had me/cfs 10 years prior to onset of the neuropathy.

My OI stopped after a year on Vistide, treating opportunistic infections, primarily CMV. Finished that treatment 3 years ago and remain free of the OI, POTS, etc.
 

TCP36

I'm not giving up, despite the setbacks and BS!
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I thought the peripheral neuropathy was unrelated to the me/cfs because I do have lower disk problems, mostly caused by osteoarthritis and spondyloarthopathy. But I could be wrong about it not being connected because as I said, the problem does fluctuate with the me/cfs symptoms. Also, I may be wrong because I had me/cfs 10 years prior to onset of the neuropathy.

My OI stopped after a year on Vistide, treating opportunistic infections, primarily CMV. Finished that treatment 3 years ago and remain free of the OI, POTS, etc.
That is interesting! I also have degeneration in lumbar and cervical spine and have had it for years. I have often wondered if there was a link. I think if nerves are damage they will respond to stressors like immune/neuro/endo issues as with ME relapses. It is an enigma!

That is also interesting about the Vistide treatment having an effect. May be worth looking into! Take care ;)
 

Little Bluestem

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Have you voted? I just did, and I am the only one so far to say "I have no neuropathic pain."

To be honest, I'm not always 100% sure what is causing any pain that I get, but it seems to me that it is overwhelmingly muscular due to muscle fatigue or muscle tension. I'm glad someone started this thread, as I seem to be in a small minority of fortunate people to have very little pain. and wonder what accounts for the differences.
I selected “I have pain but not nerve pain”. Like you, I have very little pain and I do not know that it is ME related.

The main thing is neck and shoulder pain which I suspect is the result of spending so much time in front of a computer (I used to be a programmer). I occasionally get pain in the bottom of my feet (plantar fascia?) and in my legs if I don’t use my rebounder regularly. The rebounder also much diminishes the shoulder pain.