Pins and needles

[Hip]

ME is what fits my symptoms best.

Now it's ME, in your post before that it was MS?

So far you do not match any of the required symptoms to get an ME diagnosis by the CCC definition, nor by the CDC definition for CFS.

You were the one who insinuated that I was making this up.

I did not say that you were making your symptoms up.

I was questioning your perceptions and appraisal of these symptoms. Given their relative mildness (some foot pins and needles, some muscles aches, and some swollen lymph nodes with occasional node pain), to perceive these symptoms as a "very serious life or death situation" situation (to quote your words), and to say "I'm thinking the only way out is death", seems to be rather over the top.

So I wondered whether there may be some psychological reason for this, such as anxiety, that's making you so worried.

What diagnoses have your doctors given you, by the way? Has any doctor suggested that you may have anxiety disorder?

 

[CarolB]

I had this, seven years before I developed "full blown" ME. The pins and needles started in my toes and then spread to both legs, arms and eventually my whole body. I then developed numbness over my entire body. I used to burn my mouth with hot food and drink as I couldn't feel that it was too hot.

I was sent for nerve conduction tests by my neurologist. The doctor who carried out the test seemed pretty sceptical at first. He said we needed to start with the leg that was least affected. When he did this he kept asking whether I'd ever broken it, which I hadn't, and his attitude changed.

I was told that the test showed damage to my nerves, but no cause was ever found. I continued to suffer from it for about 18 months. I would wake up in the night unable to move my arms or legs because they'd "gone to sleep".

After that I would only get it if I was slightly unwell, for instance with a cold, and this eventually went away. I haven't suffered from it since.

When I eventually started to suffer from ME, seven years later, in spite of all the weird and (not so) wonderful symptoms that I developed, it didn't return.

 

[Suffering]

I had this, seven years before I developed "full blown" ME. The pins and needles started in my toes and then spread to both legs, arms and eventually my whole body. I then developed numbness over my entire body. I used to burn my mouth with hot food and drink as I couldn't feel that it was too hot.

I was sent for nerve conduction tests by my neurologist. The doctor who carried out the test seemed pretty sceptical at first. He said we needed to start with the leg that was least affected. When he did this he kept asking whether I'd ever broken it, which I hadn't, and his attitude changed.

I was told that the test showed damage to my nerves, but no cause was ever found. I continued to suffer from it for about 18 months. I would wake up in the night unable to move my arms or legs because they'd "gone to sleep".

After that I would only get it if I was slightly unwell, for instance with a cold, and this eventually went away. I haven't suffered from it since.

When I eventually started to suffer from ME, seven years later, in spite of all the weird and (not so) wonderful symptoms that I developed, it didn't return.

I have a persistent feeling around my ankles and lower leg that there's a tight band wrapped around it.

 

[otherworldly]

i found taking vit b5 made my pins/needles in feet disappear.

 

[Basilico]

A few months ago, I had an increase in pins and needle sensations as well as some neuropathy. As soon as I started taking iron (my ferritin had dropped super low and I had become anemic again) the neuropathy disappeared and the pins and needles greatly reduced (though didn't completely go away). I've been anemic off and on for about 15 years, but never before had neuropathic symptoms as a result. A few years ago, an endocrinologist had me try a super high dose prescription folate supplement that she said helped many of her diabetic patients with peripheral neuropathy. It didn't really do anything for me, maybe because I'm not diabetic.

Have you by any chance had any bloodwork to test things like your B vitamin status or ferritin? It's always good to rule out the stuff that's easy to fix.

While I definitely can't say anything definitive about what is happening with you, I do want to just reassure you that pins and needles/neuropathic sensations and pain, while quite unpleasant, will not necessarily cause lasting damage. I'm actually diagnosed with MS, but I'm fairly atypical as far as MS goes and my symptoms tend to be more consistent with CFS than MS, though there is a lot of overlap (my husband has what I call 'true' CFS). When comparing my MRIs from 2010 to 2017, there was no additional damage (lesions) at all, even though there was a slight increase in my physical symptoms during that time period (and this was being on no medication at all that whole time). I was worried I'd have a ton of new lesions with the increase in pins and needles and neuropathy and muscle spasms I'd been having in the past couple of years, but my CNS actually seems surprisingly decent.

You said that you are on a waiting list and doing whatever you can to follow up with a neurologist. At this point, I wouldn't worry about your nerves being permanently damaged, because there's a good chance that there isn't permanent damage. Even with bad cases of MS (which a relative of mine has), severe damage of the myelin sheath in the CNS requires repeated damage over the course of years. It's the cumulative damage over a long span of time that really causes problems. My relative had MS for about 20 years before starting to lose mobility, and he has pretty serious relapsing-remitting MS. I'm telling you this to try to put things in perspective, because I know how scary neurological stuff can be.

For me, it has helped to talk myself though neurological sensations when they happen. When I get pins and needles, I acknowledge it by telling myself things like "There goes my CNS giving me some faulty intel again" and I try to laugh it off. I'm not advising anyone to ignore neurological symptoms by any means, but as long as you are seeing a doctor about it, or in the process of trying to see one, in the meantime it's important to not let those weird sensations cause fear or panic. It's just your nerves giving your brain some wonky info, and at some point, it'll probably figure out how to get it right.

 

[Mel9]

I will take you on an entirely different thought process to describe how it could be more than one factor at play and that any of the people's explanations could be true or none may be completely true. First a disclaimer, I am a medical professional whose son has suffered with CFS/ME. He in fact had his leg from mid shin down first be so painful he could not weight bear and then had parasthesias (pins and needles) in it. Resolved without intervention of any kind. All tests were negative.

One of the things I have found helpful for me to understand how the body works is to apply the concept that every symptom is an alarm to an "interpreted" threat. This interpretation takes place within the nervous system and almost exlusively in the subconscious of our brain (meaning we have no direct control over it) A straight forward example would be an ankle sprain. Definitely injury to the tissues, but there would be no pain if the ankle was not connected to the brain. We also know that the alarm centers of the brain can react as if something is a threat even when there is no evidence of damage or impending damage (migraines with unknown cause). The alarm response can also be triggered and have unusual symptoms when something systemic or not clearly located activates the alarms. In the case of CFS/ME there are no visible changes on imaging and unless you can test the chemicals in the brain at the cellular level you will likely not find anything with lab results. Some studies have found that some of these chemicals/molecules are at extremely high levels in the brains of those who suffer with CFS/ME. So that in and of itself could be interpreted as a threat. So to answer your question, yes it could be peripheral neuropathy or a neurological disorder like MS or ALS, but because you have been diagnosed with CFS/ME the most likely culprit is that and a symptom (threat) response to it. By all means seek a professional to assess whether or not it is something that can clearly be defined and remember the more tests that come back negative the less likelihood it is something else. Don't ignore the symptoms, but keep in mind they may be your body's way of telling you something is wrong even if it is not immediately apparent, life threatening or dangerous.

Hope that helps. This explanation was the most helpful in our process with our son.

Thanks, this does make sense. When both my legs start 'tingling' I have learnt to regard it as an urgent warning to lie down and rest and so avoid a severe crash.

 

[serusaert]

i also have pins and needles in my feet with some muscle control problems. this thread was good to read as my EMG test last week did not detect neuropathy either. that's good and bad - it's good in the sense that it's not ALS - it's just garden variety ME/CFS, but it's bad in the sense that there is zero confirmation on the symptoms i experience. it really sucks to have an illness that is only diagnosed via exclusion and has horrible symptoms that cannot be demonstrated on any test that a provider could order. it very much plays into the *psych* angle that has plagued this disorder from the beginning. (i have, myself, been referred to psychiatry and repeatedly blessed with the findings of the PACE trial as sound medical advice.)

i currently have LDN on the way from israel (no rx possible with my doc) and will try that.

i also find that lorazepam helps but we all know that's not a great solution.

has anyone else had good results treating neuropathy with fat soluble thiamine?

 

[Diwi9]

I get pins and needles in the morning in my feet when I first stand up to get out of bed.

 

[Suffering]

my EMG test last week did not detect neuropathy either.

has anyone else had good results treating neuropathy with fat soluble thiamine?

you said it wasn't neuropathy?

Is your pins and needles constant?
What does it feel like? Like what happens when you've been sitting in the wrong position for too long?

 

[JES]

i currently have LDN on the way from israel (no rx possible with my doc) and will try that.

i also find that lorazepam helps but we all know that's not a great solution.

has anyone else had good results treating neuropathy with fat soluble thiamine?

LDN helped my neuropathy in that it reduced the pain level, especially in the evenings before going to sleep. Thiamine might well help to regrow nerves, for me the main effect I noticed was less fatigue, not so much difference in pain. The supplement I found most useful aside from LDN was magnesium malate.

you said it wasn't neuropathy?

EMG only detects large fiber neuropathy (when you have large fiber neuropathy you have trouble with coordinated movements as well). Small fiber only affects the sensation, and EMG doesn't detect that. It's still a form of neuropathy.

 

[Knockknock]

I had this, seven years before I developed "full blown" ME. The pins and needles started in my toes and then spread to both legs, arms and eventually my whole body. I then developed numbness over my entire body. I used to burn my mouth with hot food and drink as I couldn't feel that it was too hot.

I was sent for nerve conduction tests by my neurologist. The doctor who carried out the test seemed pretty sceptical at first. He said we needed to start with the leg that was least affected. When he did this he kept asking whether I'd ever broken it, which I hadn't, and his attitude changed.

I was told that the test showed damage to my nerves, but no cause was ever found. I continued to suffer from it for about 18 months. I would wake up in the night unable to move my arms or legs because they'd "gone to sleep".

After that I would only get it if I was slightly unwell, for instance with a cold, and this eventually went away. I haven't suffered from it since.

When I eventually started to suffer from ME, seven years later, in spite of all the weird and (not so) wonderful symptoms that I developed, it didn't return.

CarolB,'did you ever got tested for any viral infection during this period? Herpes viruses? Mycoplasmas? Coxackie?? Etc...
" Mycoplasmas are well know to cause neuropathy.
Did you???

 

[Knockknock]

Now it's ME, in your post before that it was MS?

So far you do not match any of the required symptoms to get an ME diagnosis by the CCC definition, nor by the CDC definition for CFS.





I did not say that you were making your symptoms up.

I was questioning your perceptions and appraisal of these symptoms. Given their relative mildness (some foot pins and needles, some muscles aches, and some swollen lymph nodes with occasional node pain), to perceive these symptoms as a "very serious life or death situation" situation (to quote your words), and to say "I'm thinking the only way out is death", seems to be rather over the top.

So I wondered whether there may be some psychological reason for this, such as anxiety, that's making you so worried.

What diagnoses have your doctors given you, by the way? Has any doctor suggested that you may have anxiety disorder?

I laugh when i hear CDC definition, those people dont have a definition lol, their definition is to obscure and misslead the public of what infacf ME is.

 

[Knockknock]

Oh yes, lots of those, plus electric shock-type sensations, lots of muscle twitching too. So much muscle twitching I got really worried about having ALS. (But nope, good ole' ME).

!! Me to thats something i havent been able to improve.
Muscle twitching.
Got tested to for als was neg.
Thanks god.
Mosl likely muscle twitching come from some type of peripheral neuropathy..

 

[Hip]

I laugh when i hear CDC definition, those people dont have a definition lol, their definition is to obscure and misslead the public of what infacf ME is.

Without the CDC definition, you might exclude a lot of people who are quite ill from a diagnosis. There are many ME/CFS definitions, and none have a monopoly.

 

[serusaert]

LDN helped my neuropathy in that it reduced the pain level, especially in the evenings before going to sleep. Thiamine might well help to regrow nerves, for me the main effect I noticed was less fatigue, not so much difference in pain. The supplement I found most useful aside from LDN was magnesium malate.

EMG only detects large fiber neuropathy (when you have large fiber neuropathy you have trouble with coordinated movements as well). Small fiber only affects the sensation, and EMG doesn't detect that. It's still a form of neuropathy.

@JES i see - small fiber neuropathy - got it. i am looking forward to trying the LDN.

@Suffering - yes, the pins and needles are fairly constant, much worse with PEM and at night. and, yes, i think you know the answer to what happens when i sit in one position for too long: my limbs get weird nerve pain and they go to sleep very quickly.

also just started L-Arginine and Citrulline per the Fluge/Mella patent: https://www.healthrising.org/forums...e-treatment-for-me-cfs.2829/page-3#post-27777

 

[CarolB]

CarolB,'did you ever got tested for any viral infection during this period? Herpes viruses? Mycoplasmas? Coxackie?? Etc...
" Mycoplasmas are well know to cause neuropathy.
Did you???

I honestly don't remember. It was 28 years ago. I think I must have, as I had an MRI and nerve conduction tests. If I did, I don't know which specific things the tested for. It did resolve on its own eventually.

 

[sparkle]

I think peripheral neuropathy (if that's what you have) is common with this disease, much more common than is known. If it's peripheral neuropathy it's usually symmetric, meaning you have it on both legs and both hands, and usually length-dependent, so more pain at the end of extremities. I have had this form of neuropathy for almost 10 years now, it hasn't progressed and the pain has gotten a bit less over the recent few years, nor has it caused any complications. With LDN the pain from it reduced even further, so I would say it's mostly reversible.

Anyway, a doctor can confirm if it's anything more serious with an EMG test, or if it's not in the peripheral nerves.

How are you now JES?
I'm having this problem at the moment.
( Tingling in arms and legs. Was diagnosed with CFS in 2012)