Prickling/tingling in extremities?

[Wits_End]

I suppose this is probably the right place to post this: my caree, over the past few days, has been complaining of a prickling/tingling feeling in her hands, feet, her scalp, sometimes all over her body, more or less. I suspect it's linked to stress. I wonder whether anyone else has had this, whether it might be regarded as a symptom of ME or is separate from it?

 

[Arnie Pye]

Vitamin B12 deficiency? Or a related issue - folate deficiency? People need enough folate for the body to make use of B12.

Symptoms list for B12 deficiency here :

https://www.b12deficiency.info/signs-and-symptoms/

 

[Hutan]

In the first year of our illness in particular, my two children and I experienced a lot of pins and needles/numbness.

We each noticed this separately, so I don't think it was just the usual amount of pins and needles. We would wake up in the morning with a limb completely numb. Or sitting at the table eating, our arms would get pins and needles. Driving - the same thing. Yes, I know a bit of pins and needles is normal, but it would happen much more quickly and much more often than is normal.

It still happens a bit. I don't think it is related to stress; I don't think our pattern of breathing was or is different.

When I am having a full on crash and am unable to keep warm, there can be a sensation of all over prickling, including on the scalp, associated with the chills.

I think both of these symptoms (the pins-and-needles and crash-related prickling) are reported by people with ME.

A correlation with stress doesn't necessarily mean that stress is causing the sensations. Whatever is causing the sensations might also be resulting in a reduced tolerance to events. e.g. when I am in a crash, which is when the prickling occurs, I don't want to be making decisions or dealing with difficult people. Also, lots of people are stressed but don't have prickling/tingling feelings, so probably something additional is going on.

The usual thing we say is that if there is a new symptom, it's worth getting it checked by a doctor. I think the sensations might be caused by quite a few things, so it's probably good to have a doctor investigate it.

 

[lansbergen]

I suppose this is probably the right place to post this: my caree, over the past few days, has been complaining of a prickling/tingling feeling in her hands, feet, her scalp, sometimes all over her body, more or less. I suspect it's linked to stress. I wonder whether anyone else has had this, whether it might be regarded as a symptom of ME or is separate from it?

I still get it.

 

[Trish]

I don't know whether this is the same thing as you describe. My temperature sensitivity has got worse lately and if I feel just slightly too hot, I get a feeling like prickly heat. Unpleasant prickling all over.

 

[NelliePledge]

Tingling could be mild neuropathic pain maybe when mine isn’t burning hands & feet it’s tingling.

 

[Ryan31337]

Here are a few of the many possible causes to explore, these I can offer from personal experience:

1 - Hyperventilation. This isn't necessarily rapid panicked breathing, it can happen from slow, overly-deep breathing due to experiencing that 'air hunger' feeling. Particularly relevant if there's suspicion of autonomic dysfunction (POTS etc.). I'd consider this more relevant if the symptoms come on after a length of time spent upright (standing if mild/moderate, seated if severe).

2 - Hypoglycemia. Again more relevant to autonomic dysfunction & POTS, not necessarily diabetes. Reactive hypos seem to occur in POTS patients with much greater effect than in healthy people. I could be perfectly relaxed and seated after eating something like a jacket potato, but end up short of breath, with pins and needles, feeling like death & desperate to lie down (after 20 mins things would self correct and i'd be fine). So consider the timing of the prickling events in relation to food intake.

3 - Small fibre neuropathy. Probably the, or one of the, underlying causes for my autonomic problems. Often the sensations start in hands and feet (glove and stocking), but a patchy presentation all over the body is possible too. When I had B vitamin issues I experienced the classic glove and stocking symptoms, starting with loss of pin-prick sensation, then numbness, then coldness, then burning. That has mostly resolved with supplements, but I still get patchy issues elsewhere in the body that may be unrelated, they tend to be localised areas of overly sensitive skin that become painful some hours later.

4 - Temperature/water reaction. Perhaps just another aspect of my SFN, but taking a shower will usually give me whole-body pruritus (painful itching). Cooler showers, drying off immediately and covering skin seems to help - but if I am generally more symptomatic it will be worse.

Hope that gives some ideas.

 

[ProudActivist]

Here are a few of the many possible causes to explore, these I can offer from personal experience:

1 - Hyperventilation. This isn't necessarily rapid panicked breathing, it can happen from slow, overly-deep breathing due to experiencing that 'air hunger' feeling. Particularly relevant if there's suspicion of autonomic dysfunction (POTS etc.). I'd consider this more relevant if the symptoms come on after a length of time spent upright (standing if mild/moderate, seated if severe).

2 - Hypoglycemia. Again more relevant to autonomic dysfunction & POTS, not necessarily diabetes. Reactive hypos seem to occur in POTS patients with much greater effect than in healthy people. I could be perfectly relaxed and seated after eating something like a jacket potato, but end up short of breath, with pins and needles, feeling like death & desperate to lie down (after 20 mins things would self correct and i'd be fine). So consider the timing of the prickling events in relation to food intake.

3 - Small fibre neuropathy. Probably the, or one of the, underlying causes for my autonomic problems. Often the sensations start in hands and feet (glove and stocking), but a patchy presentation all over the body is possible too. When I had B vitamin issues I experienced the classic glove and stocking symptoms, starting with loss of pin-prick sensation, then numbness, then coldness, then burning. That has mostly resolved with supplements, but I still get patchy issues elsewhere in the body that may be unrelated, they tend to be localised areas of overly sensitive skin that become painful some hours later.

4 - Temperature/water reaction. Perhaps just another aspect of my SFN, but taking a shower will usually give me whole-body pruritus (painful itching). Cooler showers, drying off immediately and covering skin seems to help - but if I am generally more symptomatic it will be worse.

Hope that gives some ideas.

I have 2,3 & 4 but no diagnosis of SFN. I have been told it’s unclear if there is actual nerve damage and just given gabapentin. What country are you in and has there been a benefit to knowing it’s SFN? I have pots and neuropathic pain diagnosis but would call it an itch for the first few years and that confused everyone as no rash etc. The way you describe it is very similar to my experience. Water/temperature is a main trigger though other touch is too. My lower legs and upper arms are the worst, feet not so bad, so not the classic “stocking” presentation.
As for the pins and needles, the”itch” is very much like that for me, though not exactly the same as when a limb goes “dead”. It’s more like the fine prickles of a cactus being inserted.

 

[Ryan31337]

Hi @ProudActivist,

Sorry to hear you get these problems too. Out of interest, do you notice a mottling, red/white lacy appearance on your skin? I know this is not a symptom specific to SFN, but I certainly notice it as more obvious when my circulation/ANS is playing up. Some other things that were mentioned to me in clinic that I had never really considered related were lack of urinary urgency - I never get an urge to pee any more, to the point that I'll get sharp bladder pains for leaving it so long. SFN probably also explains why doctors/nurses/colleagues have asked what drug I've taken, because my pupils sometimes don't respond as they should...

I'm in the UK too. Initially a neurologist (not an ANS specialist) wasn't interested in diagnosing SFN - they just said it wouldn't help with any underlying diagnosis or treatment.

My POTS specialist cardiologist got involved and I was sent to another neurologist and investigated using a specialist technique called sympathetic micro-neurography. From my layman's POV it seemed somewhat similar to the single fibre EMG study I had to exclude Myasthenia Gravis. Supposedly it is more sensitive to issues with autonomic small fibre neuropathy than the gold standard punch biopsy. It can actually isolate the responses from different types of small fibre nerves, very smart, but pretty much limited to a few researchers it seems.

I used the SFN results as leverage to get Pyridostigmine prescribed, though that may have been a sensible escalation after being on Ivabradine for a couple of years with only partial improvement. I have heard from others here that their neurologists were considering IVIG if they returned a positive SFN biopsy...on the NHS(!!). Presumably following the lead from the American research & clinic's on 'apparent autoimmune" SFN/POTS (Dr Anne Oaklander for ref). I am booked in with a neuropathic pain dept. now, they want the gold standard punch biopsy proof... it remains to be seen what they will do if I return a positive result.

Ryan

 

[Wits_End]

Thank you to everyone who's responded.

Vitamin B12 deficiency? Or a related issue - folate deficiency? People need enough folate for the body to make use of B12.

Symptoms list for B12 deficiency here :

https://www.b12deficiency.info/signs-and-symptoms/

Thanks for the suggestion - I'll ask her whether she's been checked for it recently. Looking at the link, I see it also mentions that the symptoms might also be those of hypothyroidism, which she does have.

When I am having a full on crash and am unable to keep warm, there can be a sensation of all over prickling, including on the scalp, associated with the chills.

I think both of these symptoms (the pins-and-needles and crash-related prickling) are reported by people with ME.

A correlation with stress doesn't necessarily mean that stress is causing the sensations. Whatever is causing the sensations might also be resulting in a reduced tolerance to events. e.g. when I am in a crash, which is when the prickling occurs, I don't want to be making decisions or dealing with difficult people.

Ah, the words "full on crash" are ringing bells! I'd say she is having one of those at the moment, combined with severe anxiety (which itself is provoked by stress, I think). The stressors in recent weeks have included, in no particular order:
- the excessive heat
- date for PIP tribunal set, and associated worries
- enforced exposure to 20 hours of music/bass etc. over 48 hours due to a local music festival

 

[ProudActivist]

@Ryan31337

That’s really interesting. I hope they will try to treat you! Has the pyridostigmine helped your symptoms? I couldn’t tolerate ivabradine. I take midodrine at a high dose and that gets me upright enough to do essentials at certain times of day. (Also a calcium channel blocker but not sure it actually does much).

Yes I get the red and white mottling sometimes. I can have it over my entire legs and seems more common than the purple blood pooling, though I don’t always check for that. I think my urinary urgency signals went the other way to yours! My pupils are slow to react though it hasn’t been picked up on by anyone. I get a lot of blurred vision. I hadn’t connected these things to neuropathy. In fact I have been a bit confused as to how my POTS relates to my neuropathic pain, despite pots sometimes being discussed as “neuropathy”. My POTS specialist was certainly not surprised at my pain, though the strange sensations predated my ME onset by almost a decade and my POTS by even longer. Just gradually got worse but also more severe once the POTS was really obvious. She was also not interested in discussing the cause of either, or how they may be connected.

It would be so interesting to try IVIG and see what it might help.

I will have a google of Dr Oaklander and those tests. Thanks.

 

[lansbergen]

I think my urinary urgency signals went the other way to yours!

Mine too

 

[Ryan31337]

@Ryan31337
That’s really interesting. I hope they will try to treat you! Has the pyridostigmine helped your symptoms? I couldn’t tolerate ivabradine. I take midodrine at a high dose and that gets me upright enough to do essentials at certain times of day. (Also a calcium channel blocker but not sure it actually does much).

Glad you get on with midodrine - unfortunately that one is off limits to me because I lean more towards the hyper adrenergic POTS spectrum, my BP tends to shoot up when upright, so it could be a little dangerous.

Very early days with the pyridostigmine, still titrating up from a tiny dose and haven't tested my limits yet. Much like Ivabradine and beta blockers before it, I need quite a lengthy adjustment phase as all these drugs seem to make me feel very iffy for at least a week at first. But i'm certainly peeing and sweating more normally now! Having less dry eyes is nice too. I have a very, very problematic GI system and I was a bit concerned it would wreak havoc there too, as that's a common side effect. But thankfully nothing too bad so far

 

[Ryan31337]

@Ryan31337
I hadn’t connected these things to neuropathy. In fact I have been a bit confused as to how my POTS relates to my neuropathic pain, despite pots sometimes being discussed as “neuropathy”. My POTS specialist was certainly not surprised at my pain, though the strange sensations predated my ME onset by almost a decade and my POTS by even longer. Just gradually got worse but also more severe once the POTS was really obvious.

I guess the same underlying mechanism that first damaged/disrupted your sensory small fibre nerves eventually hit the autonomic small fibres too - or perhaps it was 2x separate causes! It does seem quite possible to have just one or both being affected.

 

[ProudActivist]

I guess the same underlying mechanism that first damaged/disrupted your sensory small fibre nerves eventually hit the autonomic small fibres too - or perhaps it was 2x separate causes! It does seem quite possible to have just one or both being affected.

Perhaps some autoimmune process? I assume that’s hard to test for, since the “is ME an autoimmune disease?” question never seems definitively answered!

I hope the pyridostigmine works out. I know a couple of people on it and read the side effects which scared me a lot, especially the impact on the gut, as you say. You’ve given me some hope! Less dry eyes (and mouth) would be a joy in itself. Also normal sweating. I have gone from hardly sweating at all at the start of my illness to in phases being drenched every single afternoon regular as clockwork.

I wonder how SFN relates to female hormonal cycles. My itchy reaction to water began at puberty and I still notice cyclical intensifying of symptoms. Not expecting you to know Ryan!

I am going to have to do some research and go to the GP. Not that I expect I will be given IVIG to try... but why the hell shouldn’t we? I have pretty much given up any hope of things improving but just understanding the mechanism underlying symptoms could actually lead to something useful, eventually.

 

[Ryan31337]

Perhaps some autoimmune process? I assume that’s hard to test for, since the “is ME an autoimmune disease?” question never seems definitively answered!

Yeah, that's the train of thought from people like Dr Oaklander and others, an antibody interfering with normal activity. They established in a small study of these 'apparent autoimmune' POTS patients that something like 80+% got an awful lot better on IVIG, the damage wasn't permanent.

I have gone from hardly sweating at all at the start of my illness to in phases being drenched every single afternoon regular as clockwork.

The differences are interesting. I really struggle with warmer temperature, I'm that guy wearing shorts in winter. I can sweat excessively regardless of temperature when upright too, but only from my core. I first knew something was odd with my sweat response when I spent some time relaxing in the sun (big mistake now!) on holiday and wondered why I was dry as a bone on my arms, legs and face.

I wonder how SFN relates to female hormonal cycles. My itchy reaction to water began at puberty and I still notice cyclical intensifying of symptoms. Not expecting you to know Ryan!

Yeah, sorry, can't help there! Same time of onset for me, alongside I started getting very painful lower leg aches related to activity (not just growing pains) and very severe migraine.

I did notice that the recent Systrom paper suggested estrogen levels can impact on microcirculation. They were looking more at its effect on muscle oxygenation, but perhaps there is some crossover? They want to investigate it in more detail.

I am going to have to do some research and go to the GP. Not that I expect I will be given IVIG to try... but why the hell shouldn’t we? I have pretty much given up any hope of things improving but just understanding the mechanism underlying symptoms could actually lead to something useful, eventually.

Good luck! I'm glad to have given you some hope and ideas. I've always been told getting IVIG has a snowballs chance, but perhaps with the right doctor and results it might be possible now. But to temper expectation: its insanely expensive, it's off-label and the evidence for efficacy in POTS/SFN is still very weak. It probably will also require repeat doses. Definitely worth keeping an eye on the research from overseas though.

 

[ProudActivist]

Thanks so much for the info and chatting to me.
You reminded me of when I used to go to a Turkish bath when first ill and was bone dry! Couldn’t get a sweat on at all despite the heat in there. It really couldn’t be healthy, although some days now I would like that phase back...

Let me know how the drug goes? That’s something I might be able to try at some point, at least.

 

[lunarainbows]

Hi @ProudActivist,

Sorry to hear you get these problems too. Out of interest, do you notice a mottling, red/white lacy appearance on your skin? I know this is not a symptom specific to SFN, but I certainly notice it as more obvious when my circulation/ANS is playing up. Some other things that were mentioned to me in clinic that I had never really considered related were lack of urinary urgency - I never get an urge to pee any more, to the point that I'll get sharp bladder pains for leaving it so long. SFN probably also explains why doctors/nurses/colleagues have asked what drug I've taken, because my pupils sometimes don't respond as they should...

I'm in the UK too. Initially a neurologist (not an ANS specialist) wasn't interested in diagnosing SFN - they just said it wouldn't help with any underlying diagnosis or treatment.

My POTS specialist cardiologist got involved and I was sent to another neurologist and investigated using a specialist technique called sympathetic micro-neurography. From my layman's POV it seemed somewhat similar to the single fibre EMG study I had to exclude Myasthenia Gravis. Supposedly it is more sensitive to issues with autonomic small fibre neuropathy than the gold standard punch biopsy. It can actually isolate the responses from different types of small fibre nerves, very smart, but pretty much limited to a few researchers it seems.

I used the SFN results as leverage to get Pyridostigmine prescribed, though that may have been a sensible escalation after being on Ivabradine for a couple of years with only partial improvement. I have heard from others here that their neurologists were considering IVIG if they returned a positive SFN biopsy...on the NHS(!!). Presumably following the lead from the American research & clinic's on 'apparent autoimmune" SFN/POTS (Dr Anne Oaklander for ref). I am booked in with a neuropathic pain dept. now, they want the gold standard punch biopsy proof... it remains to be seen what they will do if I return a positive result.

Ryan

Hi; sorry I'm commenting on this a few Months after it was first posted! I was searching the forums For small fibre neuropathy. May I ask, which neurologist did you see And where did you get the sympathetic micro-neurography test done? (Or you can PM me if that’s better). I hadn’t heard of the test before. If all goes well i'm hoping to see a neurologist in a months time, and SFN is something I definitely want to ask about.

 

[ProudActivist]

Hi; sorry I'm commenting on this a few Months after it was first posted! I was searching the forums For small fibre neuropathy. May I ask, which neurologist did you see And where did you get the sympathetic micro-neurography test done? (Or you can PM me if that’s better). I hadn’t heard of the test before. If all goes well i'm hoping to see a neurologist in a months time, and SFN is something I definitely want to ask about.

I would like to know too, and how you get on. I still have not raised this with anyone.

 

[Ryan31337]

Hi @lunarainbows & @ProudActivist,

I'll PM you both the doctors names but all this is being done at Kings College Hospital, Denmark Hill.

The normal process is to see their nerve clinic (apparently one of only 5 centres in UK specialising in SFN) for a skin punch biopsy. If the result is equivocal then they send you for microneurography with another neurologist, which is supposedly more sensitive for autonomic SFN. I happened to go about it the other way, having the microneurography first because I was sent there by the KCH neurocardiology clinic, who look after me for POTS.

I am so impressed by these docs. They seem to be some of the very few UK clinicians that actually 'get it'. I guess because they are active researchers in their fields as much as they are clinicians. You do need to cherry-pick who you see to get this help though. I was seeing one of their neurology colleagues in a myopathy clinic, I thought very highly of her, but once I moved out of her area of expertise and asked about SFN she told me it was a waste of time and there was no point investigating it... You do need to appeal to each individual doc/clinic's special interest to get anywhere.

As for the Pyridostigmine, the side effects wore off and I started to see definite improvements. The first thing I noticed was better sleep and feeling less tired the day after activity. I haven't noticed a profound improvement in orthostatic symptoms when standing, but I definitely suffer far less from the effects of being upright/active afterwards. Both immediate POTS fatigue and the delayed PEM-like fatigue.

Ryan