New to this group but not to pn - Neuropathy Support

Neuropathy Support

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New to this group but not to pn

AnnieGranny profile image
9 Replies

I'm so sorry that everyone here has such a lot of pain. I've had peripheral neuropathy for years: started with my feet going numb and the numbness is now like a sock. The hospital chap (when I was eventually given a referral) who did the electric tests told me about the nerve that apparently goes from the big toe to the back of the hip and that the sheath of the nerve was damaged. Also said perhaps I wouldn't have it had I not grown so much! Only a 6'1" female. Anyway I was given loads of physio and saw a couple of consultants but the last consultant told me exercise was useless! Could have cried. Am always falling downstairs (which hurts, believe you me!) and being picked up in the street. Medics just tell me there's nothing they can do and that there's no medication or exercise which will help and that PN is not hereditary. But I'm glad to have found this group -- I was beginning to think I was alone. Thanks for listening.

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AnnieGranny profile image
AnnieGranny
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9 Replies
Karjade profile image
Karjade

I have only had peripheral neuropathy for a few months which is just in my feet at the moment. It started with numbness and tingling in my toes and has now spread to my feet. I asked my GP if he could refer me to a neurologist at the hospital but he refused. He just prescribed me amitriptyline which does not really work only makes me feel like a zombie so I have stopped taking them. I am so scared and anxious now as it seems to be just getting worse daily and I am not coping with it all. I paid to go to a podiatrist and she fitted me with inserts for my shoes which have not helped at all. I understand what you mean about feeling like the numbness is a sock around the feet. I have paid out a fortune on good shoes but makes no difference. I love walking my dog but I really suffer when I get back. I just want it to go away! xxx

Mmenergy profile image
Mmenergy

I have CANVAS , it's very rare but glad it has a name. My balance sucks, I fall frequently, I do fitness walk ( while I still could) although I look drunk. It's my body tingling that really takes me down - neuropathy all over, numbness and heat flashes.

On the bright side, I have a variety of resources to live with this.

I try to think positive and live my life with graditude.

AnnieGranny profile image
AnnieGranny in reply to Mmenergy

Goodness, sounds very difficult to live with. I look drunk as well when I try and climb or descend stairs. One of the most off-putting things is trying to get into a taxi (the black cab, London variety) because of the step up and the distance to the seat. More often than not I just crawl in. Ugh! I know there are far worse conditions suffered by thousands but it's difficult to remain positive 24 hours a day ... sigh! :)

Shorejds profile image
Shorejds

My wife has suffered fir about 4 years. Seen several specialists and it's all complicated by her 3 autoimmune diseases.

She gets some relief from a cream with amytriptaline, 5%...ketamine 5%...and ketprophen 5%...applied after a warm soak. This is prescription.

This is after her trying 5 types of pills and several OTC creams

It has spread to her hands and perhaps to her eye ( she is seeing an ophthalmic Neurologist).

It is all about a doctor believing and trying things no two persons are alike

Read Defeat Neuropathy Now! In spite of your doctor ... it offers many strategies and things to try

We learned you need to be a strong advocate for yourself

Good luck. To all! It is simply an aweful challenge.

AnnieGranny profile image
AnnieGranny

Hi Eaoz,

Thank you for this information, most of which I'd never heard before. I do have muscle wastage and a knee that just gives way all the time which the consultant here said was all part of the peripheral neuropathy package! I don't have any PN associated pain just huge bruises/sprained ankles etc. etc. after falling downstairs so often. Not going to stop climbing stairs, though, doing some exercises and walking a lot.

AnnieGranny profile image
AnnieGranny

And I meant to add that I don't have diabetes.

jazzmin profile image
jazzmin

neither do I

Rider1 profile image
Rider1

Hi Annie, your post could have been my post!;-) So frustrating for us all! I have been suffering for a while now..4 years I think..and you describe it soooo well. The sock numbness, YES! And my feet are so sensitive, restless, my toes have minds of their own and when putting on a shoe I have to hold all the toes and guide my foot in. It doesn't matter if I'm barefoot, or wearing the best of shoes, boots,,,by the end of the day I can hardly walk across my floor. Just last week I had a bout of diverticulitis and my left hip was throbbing as well. Now I wonder if the hip suffers the nerve damage. Oh geez :(

As far as meds, I have been on 600mg(=2 capsules) of GABAPENTIN for a couple of years now. I take 300mg in a.m. and 300mg in p.m. to help throughout the day. Side effects can be drowsiness but I don't feel that during the day. At night, it's like restless-leg-syndrome, but with the feet!! This Rx calms that. And as far as exercise? I was an avid walker and 30+ years (amateur) equestrian...had to retire riding two years ago. I'm in my sixties now and wonder what life ahead holds for me.

AnnieGranny profile image
AnnieGranny

Hi Rider1, does Gabapentin help you? If so, what does it do? Does it improve circulation or anything? I've given myself such bruises on my shins with the continual falling/knocking things that then fall on me that I have thrombo phlebitis where the bruises were (but are still there after months). The GP said to wear elastic stockings but I can't get them on because you need strength to open them and then I can't reach my feet either -- they're so far away! -- because my knees and back hurt so much. Bleahhhh!! I'm still here, after all! I'm sorry you had to retire from riding. I used to love it when I was a child. Anyway, good luck and happy new year.

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