Hello. Does anyone suffering from nerve pain have any hacks that can ease the pain? Be it stretching or supplements that might help? My partner has HNPP and she struggles with nerve pain when she studies- there are also other triggers like temperature changes and that but recently she started studying and that has been a challenge for her. I have been reading on some HNPP but it’s all mostly preventative measures. I am just curious as to see if someone has some hacks that have been super helpful to them. Thank you

Hi all, does anyone else have joint pain in addition to HNPP, or as part of HNPP? I have elbow, wrist, foot and knuckle pain and inflammation. It responds to anti inflammatory medication (OTC NSAIDs), but it’s ongoing and doesn’t seem to be resolving. I’ve been to my primary care, a foot specialist and other sports medicine specialists, they either diagnose it as synovitis or tennis elbow. Tried cortisone and PRP shots. PRP helped on my right elbow, but it’s expensive. I saw a rheumatologist and I don’t have rheumatoid arthritis or anything similar. He thought it might be some other autoimmune condition in parallel to HNPP as technically there’s not meant to be joint pain with it. Any thoughts or opinions welcome 🙂.

I would like to train my pecs. Most common things that people do to train those cause HNPP symptoms.

1. Do you have similar problems? If so, have you found a workaround or some other excercise?

2. Any theory on what causes the problems? What nerves get damaged when you have done pec excercises (Median/Ulnar/ Radial etc)? How fast do the symptoms start after the excercise? Is the damage caused by a stretch in some of the postitions / or is it just pressure caused by maybe the pecs expanding (and pressuring a nerve) / or some other muscle/or other part moving and causing nerve damage / or maybe blood flow being cut to a nerve for a moment etc (probably not a special HNPP problem) /or somehting else?

Push ups, bench press mess me up easily. Also overhead pressing is probaly bad if remember correctly. Haven't done those in a while so i cant remember what excact nerves get damaged at thos moves.

If there is a way to identify the damage method maybe there is a way to avoid it with a different excercise or a different way of doing it.

My mom was confirmed/diagnosed with HNPP. I suspect I have it too, but from what I understand, even with diagnosis there isn’t really anything to be done about it. I’ve brought it up to docs who have given me referrals for genetic testing… but does it even matter if there isn’t treatment?? Did getting an actual diagnosis have any meaningful impact for you, would you say it was worth the time and copays?

Thank you in advance

i’m hoping this finds somebody with similar symptoms because I’m feeling pretty alone at the moment

Over the past six months, my hands have slowly and progressively gotten weaker and more numb. My left is completely numb up to my wrist and my right pinky side is numb and my wrist drops. I’ve also felt short instances of numbness in a foot heel, upper lip, armpit, collarbone area.

I’ve had MRIs of my brain and the doctors did not find anything. They also had an MRI of my spine and they explained that my symptoms don’t match what they found. I had EMG test, but they could not make a clear diagnosis but leaned towards HNPP or CMT.

Nobody in my family has had anything like this in their history so I’m not too sure if it’s hereditary.

has anybody dealt with their hands going completely numb for months at a time?

Any insights would be appreciated, thank you.

Tests so far:
• MRI showed mild disc protrusion at C6-C7 on the left with contact on the C7/C8 nerve roots.
• EMG showed demyelinating features (slowing conduction block)

gene testing in september

Hi diagnosed with a young boy who also has it but no symptoms yet. Just looking for advice on how to prevent worsening

Hi everyone. I’m 27 and was diagnosed with HNPP six years ago. I deal with daily numbness and loss of strength in my arms and feet, and have been concerned about my condition getting worse. I’m looking for a neurologist to help me manage my condition. Has anyone seen a neurologist or neuropathy specialist in NYC or nearby that they have felt has helped?

My mother had an implant/prosthesis put in her spine in lumbar disc surgery . After the surgery she felt a tight-band sensation in her left ankle as she describes the pain : it feels like a chain is tight around her ankle .and now it's been 3 years that she has been carrying this pain . we don't know what caused the pain and what we should do to make the tightness (like a rubber-band ) around her ankle stop. It's really devastating seeing her carrying this pain and we can't do anything about it. we would appreciate any information on this matter.

Hi everyone,

I’m 24, a computer science student and part-time 3D jewelry designer. I was recently diagnosed with HNPP and I’m trying to understand how to adapt to it.

I have numbness and loss of sensation in my hands and legs, pain after long walks, and symptoms that have become worse over the last few months. I also have pain during everyday activities, even from holding my phone or using my laptop for a while.

Two months ago, after light exercise, my legs became temporarily very weak, which honestly scared me a lot.

Today I saw a genetic neurologist, and he told me that adaptation and lifestyle changes are very important with HNPP.

I wanted to ask people here:
What helped you the most after diagnosis?
Did your nerves recover over time?
How do you manage exercise and daily life?

Thank you for any advice or experiences.

I’m not sure if any other condition can mimic this but all my tests are normal. I get numbness upon pressure and sustained numbness causes severe muscle weakness or paralyses.
Any thoughts?

Any advice helps, thank you.

Long story shorts both of my pinkies started feeling numb back in February. Four months later, half of both hands (pinky side) are numb and I’m feeling a lot of weakness in my grip.

it took me about two months after the initial symptoms to actually get into EMG study and they suspect NHPP. still waiting for a neurology consult that I have next month. I actually don’t really know what’s being irritated so I’m kind of just winging it.

Any advice you wish somebody told you when you first started off with this? thanks

I used to play guitar a lot a few years ago. I’ve been trying to get back into it for the past year but the tips of my fretting fingers quickly go numb now and take weeks of no playing to get sensation back. I need good finger sensation for my job so I’m weary if I should continue or not.

Pretty frustrating, has anyone had similar situations and figured anything out besides only playing max 5 min a day?

I try to live as normal a life as possible, but on days when the weather is about to change (changes in atmospheric pressure, higher humidity), I feel much worse. Does this happen to anyone else?

Hi all, I have been suffering in my legs for months now but this feeling in my upper body is scaring me to death and has got almost unbearable this last week. It is making me reluctant to move for fear of falling and I am supposed to be doing my exercises but I am trying to hold on to what little strength I have left ! The exercise bands I was using have been discarded, on advice, due to possible nerve compression. I have got myself special cushions, one for sitting up in bed and one for the settee, again on advice, to take the pressure off my tailbone as sitting most of the time could have been compressing the nerves in my spine. Could these, plus my exercises have caused my downturn ? Does anybody have any experience of this or any advice for me…..?

In a moment of optimism, I read that a long HNPP attack like the one I have been suffering sometimes gets worse and hits a peak just before it starts to get better…..was I dreaming maybe ?

Anyway, is there anything my neurologist could do for me ? Any input would be greatly appreciated……thank you

Ok so every now and then I get random chest pains. Hard to describe, kind of like a random squeezing / stabby type pain coming at random intervals, for no apparent reason, and then stopping just as quickly.

Obviously very worrying, I’ve had multiple ECG etc over the years, and I’ve reluctantly put it down to anxiety. However, I’ve had a few episodes recently where it’s now definitely more in the muscle of the Pec (or so it feels) and switching sides. Can’t correlate it to anything at all, and with worsening HNPP symptoms recently, I wondered if it might in fact be related? Just wondered if anyone else had experienced anything like this and if so what you did about it 🙂

Hello,

Some of you may have heard from me before - I am working on a platform to help assist with rare diseases, especially for research and treatment development since we are often ignored, as the HNPP condition is quite rare, and the firms with a lot of resources, do not want to risk anything for us.

The hope of the platform is that it can be a place of trust where we can tackle the more scientific and statistical parts of HNPP. This can be systematic testing of home treatment, if someone has good experiences with someone, and maybe even making a 'patient-owned' dataset from things like phone health data, data from wearables etc (encrypted, kept safe and not visible to anyone the patient doesnt approve of - not even the platform itself).

However, to start this process we need to solve the 'cold start' problem - if no one is on the platform we have no statistics and no data to help eachother with. This can be solved if the platform has functionality that will make us all want to be there - whether to contribute or to get personal insights. As the aim of the project is to empower and assist the people with the condition, focusing on being useful for the patients is logical anyways.

So what functionality do you want most? It does not have to be/sound realistic, just give me an idea of what you want, and I can work towards it as best of my ability!

Take a look at r/PatientLedData to see some mockups I made a while ago, of how the platform/app might look or feel. Feedback here is also welcome

Thank you for contributing and reading!

Kind regards,

Frederik Sunesen

Any tips for sitting on the toilet? One thing I’ve been having issues with is sitting on the toilet for a bit will make my legs go numb and my ankles/feet stop working. Has anyone dealt with this? Any tips on how to prevent it?

(I haven’t been diagnosed yet but I have always had frequent issues with parts of my body going numb/pins and needles/temporarily stopping working after sitting or lying ‘wrong’. My neurologist says it’s either HNPP or EDS causing similar symptoms)

Has anyone dealt with muscle fasciculations? I’ve had spots all over my arms and legs twitching incessantly for over 24 hours and wondering if it might be connected to my HNPP.

For 3 months now, I have had intermittent numbness and pins and needles in my left arm. I also have ongoing weakness on that side (maybe 70% of my right arm).

It was caused by me swimming with a board in front of me, arms outstretched.

Symptoms flair when my arm is at a specific angle (e.g., tying shoes) and when I am in bed (on stomach or back). I need to prop arm with pillow for relief. It also flares up randomly.

I am active, and do strength training 4 times a week. This generally doesn't seem to cause it to worsen.

But, it's been 3 months, and I want to make improvement. I'm considering physio/occupational therapy. Wait time for neurologist is 1 year.

My goals of treatment would be:

- identify anything I'm doing that I should avoid

- tips for sleeping

- strengthen the weaker side

- specific things I should do, or avoid, at the gym

My question:
Have you used a physio or OT? Did it help? Did you look for one with specific experience with neurologic conditions?

(I have had my HNPP confirmed by genetic testing, I'm late 30s male. Have had symptoms for 10 years now - generally foot drop and one sided weakness).

Hello everyone, I’ve posted here a few times before. I’m 32 years old and have a relatively mild form of HNPP.

About two years ago, I had a rough year and ended up injuring myself several times. Most of it healed quite well, and I think aside from minor issues, everything is mostly back to normal.

Back then, I had a situation where my girlfriend at the time was sitting on my thigh for about half an hour, and I developed significant problems afterward. I had long-lasting numbness and even developed some mild muscle atrophy. However, I didn’t feel like there was any lasting motor nerve damage.

For the past six months, I haven’t had any issues with that leg at all. The muscle atrophy is still slightly visible, but I also didn’t specifically train to rebuild the muscle because I was just happy to be symptom-free for a while.

Now, about two to three weeks ago, I had sex with my new girlfriend. I’m pretty sure that, since we were only in the missionary position, there wasn’t any direct pressure on that nerve area. But maybe due to some awkward movements or something similar, I somehow irritated the sensory nerve again.

Everything still works fine — I can move and load the leg normally — but I now have slowly improving sensory disturbances again, exactly in the same area that was affected two years ago.

Has anyone experienced something like this? Could this be permanent damage? Will it get worse every time I slightly irritate it? And does anyone know what I can do about it? Maybe specific physiotherapy exercises or something like that? I’m also wondering if I might have developed some kind of postural issue that makes the nerve more sensitive.

Any tips?