Discussion Anyone else suffer from pins and needles all over?

[mediocre]

This may be a longshot but I was wondering if anyone else suffers from pins and needles or burning pain anywhere in their body? I have suffered this for years but it has progressively gotten worse the past couple of months to the point it's all over my body even in my head but it's worst in the groin, legs and feet. The pain is so bad now I can't sleep or anything. I suspect it's nerve damage. But I have no idea. Have had zero help from my GP or doctors. No meds. Nothing. I'm thinking of going to A&E at the hospital but what do I say? That I am in burning pain? I don't know if they would help me.

does anyone know what medication can help with this pain?!

 

[k75]

It's most likely a form of neuropathy. I don't have it all over, but I do suffer from it and it's agony when it decided to flare up. I had chemo several years ago that caused neuropathy in my hands and feet, and I have it all over my chest. I'm really sorry you're suffering like this.

The good news is there are things they can do to help. You need to see a neurologist. Probably you'll start with your primary care doctor who will give you a referral if you need one.

I have a bunch of nerve tests I need to do before they can do anything else with me, but right now I take gabapentin and that seems to help.

 

[mediocre]

It's most likely a form of neuropathy. I don't have it all over, but I do suffer from it and it's agony when it decided to flare up. I had chemo several years ago that caused neuropathy in my hands and feet, and I have it all over my chest. I'm really sorry you're suffering like this.

The good news is there are things they can do to help. You need to see a neurologist. Probably you'll start with your primary care doctor who will give you a referral if you need one.

I have a bunch of nerve tests I need to do before they can do anything else with me, but right now I take gabapentin and that seems to help.

I'm so sorry you've been through all that and thank you for your reply.

I suspect it is nueropathy unfortunately my GP is clueless and so are the doctors here. I'm in Ireland so I see a General Practioner. I literally just asked my GP to be referred to a nuerologist yesterday. Guess how long the waiting list is? 3 YEARS. Even for private it could take just as long.

I've went to my GP about this several times over the past 3 years or so and not once he has said the word "nueropathy" even though a simple google search of my symptoms brings this up. It's taken this long to research it myself and come to the conclusion that it's a nuerologist I need to see. In the mean time I fear whatever I have has spread throughout my whole body. It initally began in my toes.

Thank you for the suggestion of gabapentin! No meds have worked so far but maybe this will.

 

[k75]

I can't believe the waiting period is so long! I'm really sorry. Like I said, I feel your pain.

Gabapentin is also called Neurontin here. I think it's an epilepsy drug, but it's prescribed for nerve pain. They also like to prescribe it for anxiety, but I find it doesn't do much in regards to that.

 

[mediocre]

I can't believe the waiting period is so long! I'm really sorry. Like I said, I feel your pain.

Gabapentin is also called Neurontin here. I think it's an epilepsy drug, but it's prescribed for nerve pain. They also like to prescribe it for anxiety, but I find it doesn't do much in regards to that.

Yeah there is a massive backlog here where I live because of thousands of people that could potentially have been misdiagnosed by one particular doctor. I also think there is a shortage in general. I've considered going abroad for help but I'm not fit to travel.

Does the gabapentin help you? Does the pins and needles feeling ever fully go away or does the medication just lessen the pain a bit?

 

[k75]

I think it does help. It's a little difficult to tell how much, because my pain tends to randomly flare up but sometimes goes completely away for a little while. So it's hard to tell what is normal vs. what the med is doing. I do know when I don't take it, I am in a lot more discomfort.

So for me, I go through short periods where the pins and needles feeling does fade away. I don't know if it's the gabapentin doing that, though.

I also have a lot of numbness caused by nerve damage. But sometimes it hurts or itches under the numb areas, which drives me crazy. The gabapentin definitely helps with that kind of pain.

 

[chris8000]

I'm surpised your GP hasn't already offered gabapentin to you, mine did. Nerve pain drugs can be helpful, but don't expect too much. I've been getting nerve pain for 5 years, they have been no help whatsoever, tried 4 drugs, lots of consultants. Some people get lucky though and find the underlying cause and get rid of it, and they recover. It can mask the symptoms pretty well for some people, gabapentin.

Sometimes this kind of thing is due to vitamin deficiences, diabetes, chemotherapy, many possible reasons. So you need to get some one to look into it.

3 years for an appointment with a neurologist! I thought 8 months was bad. Terrible world we live in.

 

[mediocre]

I think it does help. It's a little difficult to tell how much, because my pain tends to randomly flare up but sometimes goes completely away for a little while. So it's hard to tell what is normal vs. what the med is doing. I do know when I don't take it, I am in a lot more discomfort.

So for me, I go through short periods where the pins and needles feeling does fade away. I don't know if it's the gabapentin doing that, though.

I also have a lot of numbness caused by nerve damage. But sometimes it hurts or itches under the numb areas, which drives me crazy. The gabapentin definitely helps with that kind of pain.

That's good at least you get periods when the pain fades a bit. I also have numbness and an itchy crawling skin type of feeling. Like there are bugs crawling under my skin. Get a lot of muscle twitches/spasms mostly in the leg muscles. But don't know if these are related.

I have suspected nerve damage for some time. But I don't know where in the body it is and I fear if I do go to a nuerologist it will be missed or not show up on any scans.

I'm surpised your GP hasn't already offered gabapentin to you, mine did. Nerve pain drugs can be helpful, but don't expect too much. I've been getting nerve pain for 5 years, they have been no help whatsoever, tried 4 drugs, lots of consultants. Some people get lucky though and find the underlying cause and get rid of it, and they recover. It can mask the symptoms pretty well for some people, gabapentin.

Sometimes this kind of thing is due to vitamin deficiences, diabetes, chemotherapy, many possible reasons. So you need to get some one to look into it.

3 years for an appointment with a neurologist! I thought 8 months was bad. Terrible world we live in.

He is quite clueless so it's not all that surprising. I'm so sorry you've had no relief. Did they ever get to the bottom of exactly what your problem was? Nerve damage or something else?

I don't have any deficiences, diabetes or anything. All my tests always show up normal that's why it's so frustrating and part of the reason I've gotten absolutely nowhere. Unless something shows up in a blood test or a scan you get no help. You're just dismissed because they don't have the time to investigate when they have so many other patients to see. That's how it feels anyway. I've been to my GP about this for over 3 years and I feel like I'm still back at square one.

I know 3 years is just insane and this is supposed to be a first world country I live in. Doesn't feel like it. Are you in the UK?

 

[k75]

Yes! It can be like little bugs crawling under your skin. Or like being stabbed by tiny knives.

I get the muscle spasms and twitches, too. I haven't gotten confirmation that they're related, but I'll be very surprised if they aren't.

Since you said it started in your feet, it's probably peripheral neuropathy. Be sure to tell whoever you end up seeing that. The tests they usually start with are simple things, like pricking you in different places to see if you can feel it or what it feels like. Not painful, just kind of annoying. I'm supposed to have some other tests, but I don't know what they are. I have medical PTSD, and it causes me to skip my appointments a lot. Maybe I should make a new years resolution out of this. LOL

 

[mediocre]

Yes! It can be like little bugs crawling under your skin. Or like being stabbed by tiny knives.

I get the muscle spasms and twitches, too. I haven't gotten confirmation that they're related, but I'll be very surprised if they aren't.

Since you said it started in your feet, it's probably peripheral neuropathy. Be sure to tell whoever you end up seeing that. The tests they usually start with are simple things, like pricking you in different places to see if you can feel it or what it feels like. Not painful, just kind of annoying. I'm supposed to have some other tests, but I don't know what they are. I have medical PTSD, and it causes me to skip my appointments a lot. Maybe I should make a new years resolution out of this. LOL

It's very uncomfortable and it's 24/7 for me it never stops. I feel a little bit better that I've met you and hear that you are going through the same symptoms. I feel like I'm crazy a lot of the time and I'm the only one going through this.

Have you had tests to test your reflexes? My GP did this yesterday using this stick to hit me in the knee area and basically said "oh well your reflexes are normal so you're fine" I nearly lost it at that point but I held my anger in. I don't blame you for having medical PTSD. lol. I have it just from visiting my GP and dealing with him.

 

[chris8000]

Yeah I get the spasms and twitches as well. The main problem is the pain.

It could also be fibromyalgia, especially if you get brain fog. Unfortunately, these conditions are usually hard to treat, I have found that out over the years. Tried so many therapies and doctors now, this is why I came here.

I am in the UK yeah.

You can always specifically ask the GP for gabapentin. I use medicinal herbs now, which can be helpful. My honest opinion of nerve pain drugs, is they are a bit shit.

 

[k75]

It's very uncomfortable and it's 24/7 for me it never stops. I feel a little bit better that I've met you and hear that you are going through the same symptoms. I feel like I'm crazy a lot of the time and I'm the only one going through this.

Have you had tests to test your reflexes? My GP did this yesterday using this stick to hit me in the knee area and basically said "oh well your reflexes are normal so you're fine" I nearly lost it at that point but I held my anger in. I don't blame you for having medical PTSD. lol. I have it just from visiting my GP and dealing with him.

It's a shitty little club to be in, but it does help knowing you're not alone.

I have done the reflex tests. On one of my legs they said the reflexes were diminished, but there wasn't any follow-up, so I'm not sure what to think of that. That's what I hate the most. When they find something but then brush it aside.

 

[mediocre]

Yeah I get the spasms and twitches as well. The main problem is the pain.

It could also be fibromyalgia, especially if you get brain fog. Unfortunately, these conditions are usually hard to treat, I have found that out over the years. Tried so many therapies and doctors now, this is why I came here.

I am in the UK yeah.

You can always specifically ask the GP for gabapentin. I use medicinal herbs now, which can be helpful. My honest opinion of nerve pain drugs, is they are shit.

For the longest time I've thought it's just me that experienced these symptoms. I told my GP about he muscle twitches/spasms and he prescribed me a muscle relaxing medication which doesn't work either. He literally can't connect dots.

Yeah I've thought about fibromyalgia but my mum has this but she only gets certain symptoms on and off. Mine are constant 24/7 and don't respond to medication.

I am going to ask my GP for gabapentin but if it doesn't work I'm considering going to A&E. That's how bad it is. I'm not sure how they could help me though. What kind of medicinal herbs? if you have time or want to can you link me some through PM's?

It's a shitty little club to be in, but it does help knowing you're not alone.

I have done the reflex tests. On one of my legs they said the reflexes were diminished, but there wasn't any follow-up, so I'm not sure what to think of that. That's what I hate the most. When they find something but then brush it aside.

That's probably what will happen to me even I do eventually see a nuerologist. Nothing will be done. I'm going private and it's probably going to cost me a small fortune. Probably for nothing.

 

[chris8000]

Yeah I think trying gabapentin is a good idea. The other one they use for nerve pain is cymbalta, which can be nasty in withdrawal I believe, you'd have to look into it and see if you think it is worth the risk. I also tried lyrica, which is very similar to gabapentin. These are all the same drugs they use for fibro. Fibro includes a whole range of different symptoms, so I think it might still be that or something else.

If you fail the conventional medicines, I think it is totally worth looking into medicinal herbs. I'll PM you later with what I use. A cure is unlikely, but the efficiency can be just as good or better than drugs for nerve pain. The only problem is then, your kinda on your own so have to be indepedently minded. I am a bit of a nerd and I don't mind researching and experimenting on myself.

 

[Deleted member 1465]

Sorry to hear your pain. You are on the right track. Sounds like neuropathy, especially if its in your extremities. Gabapentin can possibly help. Unfortunately, you need your GP on board, even if you go privately. You really have to bully him/her to do what you want, but in a passive way to make him/her think its their decision! I know, it sucks. Unfortunately, A&E will not help as its a chronic condition. A neuro referral is indeed what you need.
Neuropathy is a symptom. Something is causing it. Nerve damage can be from all sorts of things like fibro or alcohol. Mine is from booze, in my feet and legs and comes and goes.

 

[Berlin76]

This may be a longshot but I was wondering if anyone else suffers from pins and needles or burning pain anywhere in their body? I have suffered this for years but it has progressively gotten worse the past couple of months to the point it's all over my body even in my head but it's worst in the groin, legs and feet. The pain is so bad now I can't sleep or anything. I suspect it's nerve damage. But I have no idea. Have had zero help from my GP or doctors. No meds. Nothing. I'm thinking of going to A&E at the hospital but what do I say? That I am in burning pain? I don't know if they would help me.

does anyone know what medication can help with this pain?!

My niece got the same
She has it getting worse also.
She got it after swimming accident were she fall off the stairs between it and the pool.

There is a clinic in America who is specialized in this with the nerves system to reset it. My nieces will be going through therapy their is some time

 

[chris8000]

My niece got the same
She has it getting worse also.
She got it after swimming accident were she fall off the stairs between it and the pool.

There is a clinic in America who is specialized in this with the nerves system to reset it. My nieces will be going through therapy their is some time

Berlin, have you got anymore information on this clinic? I'm intrigued.

I've spent quite a lot of time, unfortunately, hanging around in chronic illness forums over the last years, and this sounds a bit suspicious! Maybe bigfoot runs the clinic? But in all seriousness, I wish your niece all the best with that and that she gets better.

Resetting the nervous system.... hmm, ah are you talking about ketamine therapy? In which case that could really work. So expensive though.

 

[mediocre]

Sorry to hear your pain. You are on the right track. Sounds like neuropathy, especially if its in your extremities. Gabapentin can possibly help. Unfortunately, you need your GP on board, even if you go privately. You really have to bully him/her to do what you want, but in a passive way to make him/her think its their decision! I know, it sucks. Unfortunately, A&E will not help as its a chronic condition. A neuro referral is indeed what you need.
Neuropathy is a symptom. Something is causing it. Nerve damage can be from all sorts of things like fibro or alcohol. Mine is from booze, in my feet and legs and comes and goes.

I went to my GP for referral yesterday. 3 year waiting list even for private. It could be 2023 before I get help. I'll be dead by then.

 

[Berlin76]

Berlin, have you got anymore information on this clinic? I'm intrigued.

I've spent quite a lot of time, unfortunately, hanging around in chronic illness forums over the last years, and this sounds a bit suspicious! Maybe bigfoot runs the clinic? But in all seriousness, I wish your niece all the best with that and that she gets better.

Resetting the nervous system.... hmm, ah are you talking about ketamine therapy? In which case that could really work. So expensive though.

Here in holland they don't have the expertise for it only simply going through pain therapy. The complex regional pain syndrome crp what it is what my niece has they have good results in America with the therapy at the clinic.

They have a Ronald McDonald's for parents also there. And bigfoot is their mascot lol.

No its not ketamini that is just pain killer.

 

[k75]

What is this clinic called? I'm in the US.

 

[chris8000]

Berlin, I was surpised to find this out, but ketamine injections in a course, can reverse some chronic neuropathic pain syndromes. I found out from r/Fibromyalgia/, many people are doing this now. It does not always work, but what I read from people is sometimes impressive. I think it is like a high dose and sustained over several days thing, but it does allow some degree of reset.

 

[Berlin76]

What is this clinic called? I'm in the US.

The clinic is called The spero clinic.

New Hope for Complex Regional Pain Syndrome Patients With New FDA Approval - Global Genes

Grünenthal receives Breakthrough Therapy Designation from U.S. FDA for neridronic acid for the treatment of complex regional pain syndrome (CRPS), a debilitating orphan disease with high medical need Neridronic acid is the first investigational medicine to receive Breakthrough Therapy...

globalgenes.org

Promising treatment option for complex regional pain syndrome

A study, published today in PNAS, has found a potential treatment for patients with complex regional pain syndrome (CRPS).

www.google.com

Found also these 2 articles

Berlin, I was surpised to find this out, but ketamine injections in a course, can reverse some chronic neuropathic pain syndromes. I found out from r/Fibromyalgia/, many people are doing this now. It does not always work, but what I read from people is sometimes impressive. I think it is like a high dose and sustained over several days thing, but it does allow some degree of reset.

CRPS Treatment Center | Spero Clinic - Hope for CRPS & Chronic Pain

Experience nerve pain relief with the latest science at The Spero Clinic.

thesperoclinic.com

 

[k75]

Interesting. I used to live 45 minutes away from that clinic, but I've never heard of them. That area isn't known for having the best doctors. That's a big reason why I moved. I hope they're able to help her.

 

[Berlin76]

Interesting. I used to live 45 minutes away from that clinic, but I've never heard of them. That area isn't known for having the best doctors. That's a big reason why I moved. I hope they're able to help her.

I dont know how long they are in operation now. So maybe you moved and they came in operation.

 

[k75]

That might be the case. I'm going to research them, because I still have ties in that area.

 

[Berlin76]

That might be the case. I'm going to research them, because I still have ties in that area.

Keep us updated.
They have good results what my sister said. So she is trying to get money together by crowd funding because the health insurance doesn't support treatment outside Europe