I am new to this community: I was... - Neuropathy Support

Neuropathy Support

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I am new to this community

Bealings48 profile image
4 Replies

I was diagnosed with peripheral neuropathy in 2013, initially with idiopathic sensory peripheral neuropathy. My problems at that time were mainly pain in my feet and legs and loss of sensation there too. Since then my health generally has deteriorated and i have been struggling with poor mobility, dizziness, shortness of breath, excessive sweating at times, faintness, and chronic cough. I have had to take to using a mobility scooter, or a rollator (on better days). I would never have believed that one condition could cause all of this. However I have been reviewed by a neurologist in conjunction with a respiratory consultant, and also some cardiac tests. They have now confirmed that I have peripheral neuropathy which is affecting me in all these area i.e. more than the sensory nerves are affected. I really have no idea how this is going to progress and that is a bit frightening. I have always found that support from others with the same diagnosis is one of the best ways of coping. I would be very happy to support anyone else who chooses to contact me.

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Bealings48
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tekapo13 profile image
tekapo13

I have had peripheral neuropathy for over a year now since having chemotherapy it has effected my fingers mostly the ends but is worst in the feet and lower legs especially my toes I often have to get up at nights because of the pain in them but it's strange that I have come to live with it in the hope as per neurological and anecdotal advice that it may improve over time.

I have found B6 and B12 vitamin tablets have helped improve it at times. I have forced myself to exercise by firstly walking in the house and up the stairs as a exercise regime then too the end of the drive a few times and then around the block. I can now walk a lot further and in spite of the tingling sensation and not feeling the feet properly do feel I have managed to cope and operate with the neuropathy. Right now its not so good but copeable.

I do hope your improves I also find a little reflexology helps for a little while anyway and if nothing else is relaxing! Good luck!

Madmin1 profile image
Madmin1 in reply totekapo13

Hi I to have peripheral neuropathy after having had chemo and radiotherapy mine was for leukemia first it started in the hands and fingers then the feet my toes get a tingling feeling all the time and get a numb but painfull feeling in the bottom of them I have tried amitytriville "not sure on the spelling" but they don't take away the pain basically I just put up with the pain and try and carry on as normal as I can I also find this gets worse in the winter and that my feet are always cold as ice I saw my doctor recently but she said there is no treatment for this, but after reading your post I guess I will try the vitamin b12 as have read before that this can help though she did say it will only get worse

in reply toMadmin1

I've heard that a Vitamin B 100 complex plus 300 mg of alpha lipoic acid might help.....worth to try, but it takes a while before it shows effect.

Ginakins profile image
Ginakins

I have severe neuropathy in feet and hands. Hands are burning so bad I can't hold anything. Been through everything. Trying med marijuana now but it's not touching my hands. Last hope. It very hard to find people to talk to that can relate.

Ginakins

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