Hey everyone - I hope you're all well and healing .
I haven't been on the forum in a while , due to working so much !

Anyway I've been sick for 3 years with nerve pain and numbness - was diagnosed this spring with Pn by way of nerve conduction study by my neurologist who just can't believe I have this at age 30. It does not run in my family.

I understand that there are many types of PN. I am desperate to find out which type I have. I do have some autonomic features - mainly my bladder goes nuts and feels full and irritated ( this was my first symptom 3 years ago)
I have severe bi lateral carpel tunnel which I am curious to know if this is common with Pn

Circulation seems to be poor , especially in my legs ( socks can't have tight elastic, and tights cut off blood flow very easily leaving my ankles purple . In the winter my hands and feet freeze immediately . I got frostbite often as a child. My thighs itch if I go for walks.

Burning is the most prominent symptom, and it seems to be even on both sides of my body. This included my stomach ( so strange , it's almost like having heartburn but much lower ) - my tummy is sensitive to the touch. If I bang my hand or foot the pain response is very exaggerated. My thighs burn, and are weak and crampy. My arms and back ( sort of up my spine ) burn.


Hands are numb in the morning for about 5 minutes and my arms are weak . I'm very thin, and I seem to have very All blood tests are normal. LOW Blood sugar, low iron, good b12, have tested Vit E, Lymes, lupis, brain MRI for Ms, ultrasounds , MRI of tailbone ( had insane pressure and burning for a good 6 months with sciatica, but nothing showed up on the scan ). Thyroid is fine. Hyper if anything. I haven't touched alcohol in a year and a half.

Some ppl have suggested this is psychological or spiritual which I find hard to believe.




I hope someone can provide some insight or any help. I need to get to the bottom of this - it has really changed my life.


Best,
Silver

Hi Silver,

Although I can't really help you - you seem to describe PN with some autonomic features and circulation problems to a T - I wanted to react to:

Well, these some people need a slap on the wrist!

PN has nothing to do with all that. While our minds do play an important role in how we deal with the condition, they are not strong enough to "fake" a nerve conduction test or make us experience burning pain out of the blue.

Also, we do see more and more people who develop PN while they are younger; it's no longer a "50+" disease.

Do you do anything to help with the circulation problems?

I appreciate that you agree that you can't just dream up PN and develop symptoms (24/7 I might add). Its very frustrating to hear doctors always ask if I am stressed. Well yeah, I am very sick ! Tai Chi may help to a degree, but not enough to say that I shouldn't need pain meds. Sheesh!
I don't know what to do for circulation ..I tried aspirin and a herb called Ginko biloba ..but later found put that is more for cognitive function. Any ideas ? I am a smoker so that is one thing that is definitely working against me.

I was hopeful that I would get a little more input. Anyone ?
Thanks

I'm pretty much like Wide-O and can't help much. My neuropathy is small fiber so my nerve conduction study was normal. What a smug face the dr had when he said it was not neuropathy. He would have been much more helpful if he had told me of small fiber then. I had to figre it out for myself. I would love to take my biopsy report and stick it in his face....I have 0 a and c fibers in my feet. I've had to be my own advocate and after seeing a foot dr for only 2 visits I asked for a skin punch biopsy and he was like sure....lol

So your diagnosis is large fiber neuropathy ? And you are trying to figure out what caused it ?

Sorry if I sound stupid...I've been up most of the night

The disabling part just started for me about a month after my chemo ended in March of this year so I only have about 6 months experience with this stuff.

Hope u get some good info from the good people on this site. I'll be keeping up with your posts and have u in my thoughts.

Take care of yourself.

Debi

I didn't reply at first because you said it didn't run in your family, my experience is with hereditary neuropathy, but since you are looking for more comments, I will contribute my experience.
Hereditary neuropathies can appear as spontaneous mutations, also some people develop symptoms only when much older, which may lead them to believe it is something else, so it can be in your family without being identified. . You can develop quite serious symptoms with CMT at any age. I was clumsy and uncoordinated as a child, with restless legs, numbness set in in my 30's, pain increasing severe through my 40's. my neurologist thought I was too young for the severity of symptoms I had and sent me to Johns Hopkins for a second opinion, EMG/ NCS showed severe large fiber with muscle deterioration, skin biopsy devoid of nerve fibers at ankle, reduced above knee, and deteriorating at upper thigh. That was several years ago and I was sent away for pain management as it will progress and there is no treatment. The neurologists were done with me.
I do have bilateral severe carpal tunnel, and my hands are numb for several hours when I wake up, I cannot hold a needle or pen until around ten. The burning comes and goes for me now, but I am on Gabapentin and MS Contin, so my pain is greatly reduced from where it was. My upper thighs are where the burning is most noticeable, but my legs are almost completely numb to that point.

It does sound as if you have some autonomic issues, but hereditary neuropathy while primarily sensory/motor can involve almost anything as it progresses.

Please do not allow anyone to convince you that this is all in your head, or spiritual. Do you recall Jesus ever telling someone he healed that it was all in their head? Honestly I do not know where these people come from. PN is a very idiosyncratic disease and the reason you are not getting more answers is probably because we all have slightly different symptoms, but you certainly do have company here.
Unfortunately, while there can be improvement with some cases making lifestyle changes and using supplements, it is not often a curable disease, unless you have a specific cause- toxicity, nerve entrapment, etc.

I don't have an opinion on what type of PN you may have. I most strenuously suggest that you stop smoking. You can also improve circulation, and quite possibly improve your condition in general, by eating a very low fat plant-based diet, and by exercise, especially in the areas you are having problems. Anytime during the day, flexing your ankles, toes, etc. will increase circulation in those area. Also do some stretches in these areas.

You can find lists of foods that are the most likely allergens and pain triggers. For this, I highly recommend the book Foods That Fight Pain, Neal Barnard, M.D.

But in any case, I recommend a diet focusing on vegetables, starches, fruits, whole grains, and avoiding animal products, refined oils, and refined food in general. And exercise and manage stress. This is what people are using to reverse disease.

Ron

I can not imagine having a diet that included sugars *starches,fruits* in my diet now that I have pn. Those things make mine worse.

I would also question any wheat products.

For me personally, my diet includes lots of healthy animal and fat and very low carb.

I guess everyone has to research what diet is best for them. My opinion sugar/starches are the arch enemy to my body, causing inflamation, cholestrol and a host of other inflictions.

Susanne, I started crying as I read your post, because I don't want to know that this is permanent. I won't be able to deal with that.
Not at 30. While everyone I know is off getting married, buying houses and having kids, I am suffering and barely surviving. I truly don't want to get out of bed anymore. For what ?

Smoking is my only vice, really. I don't know what to do with myself otherwise. I live alone, and am very high strung. I don't drink alcohol or smoke pot. I don't have a husband or children, or a career, or pets. I have nothing, really..

Things are looking grim. I'm moving into a small apartment this month also. I'm on welfare and work part time cleaning.

I am hypoglycemic so I have to have sugar often. I studied nutrition for two years so I know all about food. I'm finding that one of my meds is making me only want to eat carbs and sugars. Amitryptaline. Dinner foods don't interest me and actually turn my stomach.

Anyway I don't think I'll win the battle for more pain meds. I just don't. I brought my dad in with me and it didn't change anything.
I've tried or am taking every other medication for this like lyrica, elavil, cymbalta..

I'm feeling like I've had enough of fighting at this point.
October always makes me feel like this.

Please don't take anything I say too much to heart- many people on here have much more encouraging experiences than I do! And those who know me well here know that I have a talent for saying the wrong thing- I am on the autism spectrum which affects what I write. I want to be informative and I do empathize, but I am often too blunt, and we are all different in our outcomes and situations.
It sounds like you have seasonal affective disorder- if October is a trigger for you. I enjoy the fall aesthetically, but the colder weather makes me a shut in.

Could you get some kind of counseling? When life seems meaningless and too much trouble, and I have been there quite often, stepping back and reconstructing a life beginning with the things that provide enjoyment and distraction seems to help. Even the simplest things. For me it has always been needlework, even though I am not as good at it as I used to be.

I understand the frustration about smoking and eating- sometimes it seems like food is one of the few remaining pleasures in life and I am overly fond of sweets though they are not good for me. I can see how quitting smoking, which while not good for you is probably not contributing to your problem, would just be another burden at this point, and deprive you of a stress reliever.

Please try not to give into despondency. If you know that this is a bad time of year for you be especially gentle with yourself. It sounds as if a lot of other things are going on right now besides your health. Cleaning is a difficult way to make a living, and probably exacerbates your condition with all the physical stress.

Please forgive me for saying anything which upset you. I have had a good life in spite of this disease, and I have had times when I lose sight of that. Honestly, abuse and neglect in childhood has had far more negative impact on my life than CMT has. I am more of an emotional cripple than a physical one despite my walking sticks and handicap plate.

You have to keep fighting, learning, advocating for yourself. Please. Things change all the time, and some changes are for the better.