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

[wanttorecover]

What is considered small fibre neuropathy? I have a typical ulnar neuropathy in my hand which is affecting function too which is why it is so annoying, but then it is the way the signals are interpreted in the brain that is likely the cause? Do they ever improve?

Think that's what threw the neurologist because the signals clearly showed a slowed conduction and most neurologists down our end of the world still do not agree that ME is real!

 

[EtherSpin]

pain was the first harbinger for me of any serious medical problems - thermal allodynia emerged days after I returned to school having been off with glandular fever at age 13.
Ive had it for the 20 years since - when my skin warms quickly from either sun warmth when popping outside or me doing anything exertion wise that warms me up (jogging,picking up a heavy box etc) I get pain randomly dispersed from my waist up to my scalp. it feels like hundreds of very tiny hooks pricking then lifting a little on the surface of my skin, not to be confused with "pins and needles" as this is not an analogy,actually feels like tiny implements.
occurred the first time hopping into an un airconditioned car on a summers day.

I dropped out of some long term forms of exercise in my late teens because people were noticing and laughing at my coping mechanisms like scratching,pressing or light slaps/taps on the affected skin.
something as small as being embarrassed can flush my face with enough warmth for the prickling to make me want to scratch.


in 2009 I got a rarer (I only get it say,once a month as opposed to several times a day with the thermal allodynia)
sensation, after a night of disturbed sleep the skin on my hands and again,everything else above the waist would be affected but they would go almost completely numb in response to anything coolish in temperature Id put my skin in contact with, not at all painful but very distracting and disconcerting when trying to do any task .

does anyone have similar symptoms ?

I got CFS about 13 years after the glandular, a mystery virus that Id guess might have been herpes family cause later on shingles and then cytomegalovirus each doubled the severity of my symptoms permanently (at least so far)


EDIT - thought Id add, in the late 90's I saw a neurologist about the thermal allodynia, he was mystified, tried me on carbamazapine/tegretol then said it was probably something to do with myelin but he couldnt help. saw another neuro in 2012 who said similar stuff, did conductivity tests and an MRI and tried to send me off saying there was nothing wrong at all but admitted he had no way to rule out small fibre neuropathy when I asked if it could be that in the form of post herpetic neuralgia .

 

[heapsreal]

If one can tolerate lyrica, its now covered by the pbs in australia and prescription is $35 instead of $110 like it was before this.
I find the lyrica helps alot but seems hit and miss for others.

 

[soxfan]

I am curious if anyone here who has peripheral neuropathy has ever taking any kind of anti viral? This was my first symptom back in 2004 and then I only had it in my left calf and foot. Over the years it is has started in my right calf and foot. I also have continuous muscle twitching in both calves 24/7 along with the shooting...burning...electrical current pain.

I am beginning to wonder if it will next spread to my arms and hands. I was at first told this was caused by Lyme but was treated for that and still have this as one of my prominent symptoms.
Could this just be permanent damage to the nerves? It gets worse when I am on my feet a lot or go walking. Then my calves really go crazy....

I did try Neurontin at one point but didn't like how it made me feel so decided to just deal with the pain. I think the muscle twitching is much more annoying than the pain.

 

[philpot]

soxfan, I had some similar issues to you, re the twiching and which get worse after walking, however not quite to the point they go crazy. What I will say is that many symptoms come and go but but there does seem to be a gradual and increasing interference with my automatic muscle control. I will say I had a range of tests and all were clear.

Now with regards to you point about permanent damage all I can say is that in my case things went on for 3.5 years and then I woke up ne day and everything had gone back to normal. It was like I was 20 again, albeit I was not 20 again, but you know what I mean and people asked me if I was on the happy pills. It lasted two weeks, I got a cold and then it came back slightly worse than before.

However, this switch off period was a game changer for me because it was like a switch and if there had been 4 years of permanent damage then I really do not see how that could have been repaired overnight. This makes me believe the immune system is interferring with the brain and/or nervous system rather than actually damaging it. I cannot prove any of this of course, so it's just my opinion based upon my experience.

Regards.

 

[soxfan]

I would love for this to switch off overnight! I did go through a period of time when it was hardly noticeable but that was during my Lyme treatment. Then over the years it slowly came back again and is now in both calves instead of just one.
Some days the twitching is worse and some days the pain is worse. It definitely gets worse if I walk with no shoes on. I always have to have support on my feet or else my calves really go nuts.

Mine has been going on for 10 years now and has definitely become worse as the years go on. It is mostly annoying than painful but I have to say there have been times when the pain was quite bad.

I hope you are right in that it isn't permanent damage but if not then how do we correct the immune system so that it isn't screwing with the brain/nervous system. Not sure I mentioned this but it is always worse when I am stressed...overtired...or have walked and been on my feet a long time.
I have also had testing done EMG and it was normal....but that was back when all this began 10 yrs. ago. My calves are not weak and it doesn't interfere with anything I want to do.

I think what you had to write was really quite interesting...thanks

 

[philpot]

That really is the golden question, because anyone who could find a certain solution for that would either be rich or else a hero, because it would quite likely fix some other illnesses as well. 80% of the immune system is theoretically in the gut which is why some scientists and people are concentrating on that area and I do believe there could be something in that approach.

However, we can also read that some people have picked up colds and/or flu etc., and occasionally this seems to knock the immune system back into sync. However most times people just get colds and flu but it does nothing for them; so again no proper fix.

With others occasionally it just clears up for no apparent reasons, but these are again rare cases.

I see the immune system as a complex part of a complex system and as of yet a realiable fix has not been found.

I just know that I had a few years of deterioration and then overnight it completely stopped and that lasted two weeks until picked up a significant cold and when it then came back as the cold cleared up.

Stress, overtiredness, etc., will make things worse because actually the same things make a healthy person worse, it's just that their symptoms do not get to our stage. Think of it this way; you have a ruler and you stress it and it bends. In our case the rule is already bent and so you stress it and it now bends a heck of a lot and so is easily visible.

It's often all about from where the starting point is; for a healthy person their starting point is normal and so even when they shake a bit etc., it's really not at all visible or felt that much. We already have symptoms which are more advanced and so they become more advanced still and in addition we are very aware about any changes and so easily pick it up.

How often have you driven down the road and you hardly notice a car and then you think to buy a certain model and now you seem to see them often; they were always there it's just that you are now more aware of them.

I had my muscles checked as well and they are 100% for my age.

I can only say to you what my experience was, and in my opinion there was no permanent damage at that time, but that is just my opinion and of course over say 30 years that situation may change, we do not know.

Regards.

 

[Allyson]

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!​

I have tingling and numbness and warmness 0 have been told it is a neuropathy but not sure what kind - would love to know

ALly

 

[Allyson]

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 get this too but find I is worse as I am aobuot ot or crashing

I think it is due to OI and different form neuropathy but not sure

Allly

 

[Little Bluestem]

I don't have OI or anything related. I am 'clumsier' when the PEM is worse.

 

[Uno]

Hi folks

Me again!

My mum has peripheral neuropathy and it's torturing her - I can't bear to see her suffering so much.

She has a B12 and folate deficiency so she is on B12 injections and I advised her to take methylfolate but it's not getting better, it's getting worse.

She can barely stand or walk it's so bad.

She already takes gabapentin.

Any advice would be appreciated x

 

[adreno]

ALCAR, ALA, benfotiamine, ashwaghanda.

Gabapentin won't help, likely it makes it worse by reducing neural transmission. (when neuronal connections are not used, they are lost).

It's important to note that neuropathic pain does not automatically equate neuropathy.

 

[Misfit Toy]

I have been diagnosed with peripheral neuropathy in my feet but I have to see a neuro. I have sjogrens. It came on after surgery and gets worse with certain medicines, especially viral meds or some supplements. It's so crazy. I just went out and bought compression stockings today.

 

[Rvanson]

I started having pain/numbness in my toes about a year ago. Treating with Vit B-12 injections. Helps, but it doesn't
make it go away.

 

[physicsstudent13]

Is there anything like ACLAR, Gamma Linolenic Acid oils (evening primrose), vitamin b12 that can regrow nerves? I'm pretty sure I have nerve damage from diabetes (I get abscesses on my back too). I think diabetes may cause some kind of chemical deficiency which leads to red blood cells losing their flexibility and as a result oxygen is unable to reach your extremities.
I've lost my vision lately too and have glaucoma and that's terrible.

 

[PattyPlum]

Update:

I have been diagnosed with EDS and POTS. I may have Mast Cell Activation/Histamine Intolerance and Small Fibre Neuropathy.