Just found this site. I have been suffering with this since 2009. It was difficult to get taken seriously, it seemed that nobody understood my symptoms, or it was all in my head. Anyway, I still continued to walk with my dog on the trails, first with Nordic poles for a few years, then that became too difficult. So I stopped going for about 6 months, my husband went with the dog alone, I thought this is not good, so we purchased an all terrain walker. I must say it is marvellous, I can walk on the trails again, getting my much needed exercise. I also use a stationary bike on the days I don't walk, it is great, no impact exercise. We like to travel so we also bought a lighter walker which folds up to take on airplanes. I cannot walk very far unaided, so this really helps me to keep active.
I am new: Just found this site. I have... - Neuropathy Support
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Well done for keeping active. I have two golden retrievers and I have had to cut down to shorter walks now or my husband takes them. I loved walking and going to the gym and I feel slowly this horrible peripheral neuropathy is taking it away from me. However I will have to find alternatives like you xx
Thank you, I loved walking as well, used to get out everyday with our yellow lab, twice a day. Now I go two or three mornings a week and it's a struggle, but I won't give up, not yet ! I agree this neuropathy is slowly taking everything away, including our independance. I loved to garden, I had a lovely garden. Now that is impossible. So this year we got some waist high planters they call "trugs" so I can have a garden of sorts. I appreciate your reply and I understand what you are going through beccause I know what it is like. Keep finding ways to do what you enjoy.
Hi. I have only had this for a year and it has got so much worse in that time. I am taking a low dose of Gabapentin which does not help much. I saw a neurologist yesterday and he is sending me for another nerve conduction test but last time I had one it showed up nothing. It is very scary and it is hard to look forward to the future! xxx
I have had this problem since 2009, started off with pain in my foot and ankle and was told I had posterial tibial tendon dysfunction, was in an air boot for 6 months, even had to wear it to bed for a while. Then started the tingling in my feet, strange feeling like I waas walking on balloons. I continued my walks with the aid of Nordic poles and it worked well for a few years. It has got so much worse over the past two years. I don't think I am really being taken seriously by medical profession. Like you I had a nerve conduction test, I was all but told it was all in my head. I also have fallen arches so my body is out of alignment, so it is difficult to walk very far and I cannot stand for more that 20 mins without back pain. I understand how you feel, it is scary because I find nobody can explain what is going on, I don't think they know. Until I found this site yesterday, I thought I was the only one experiencing being misunderstood, and just maybe it was in my head, although why I would want to make up something like this is beyond me. I find is better to keep as active as you can, I really hope you can get some answers from your neurologist. I was on gabapentin for a while, it was not helping, so I asked to be taken off it, I am not a pill taker, so I just take Tylenol when I really really need to. otherwise I do all I have to in the morning because by midday I am done. I sit down and rest until it is time to make supper and that seems to help. I have been mis diagnosed so many times, I think I will cope with this myself the best way I can. You will find ways to cope, don't give up. I also find that it will stabilize and you will stay the same for a while, without getting any worse. This is such a horrible thing, I think you have to experience it before you can understand what it is like...I mean you really cannot make this stuff up!!! I am so sorry you are having to go through this, I really wish you well
I FEEL FOR YOU and everyone with nerve type pain. I have a diagnosed rare disease (fabrys disease, I am on treatment called enzyme replacement therapy-doesn't help pain AT ALL) and now have Kidney Failure requiring dialysis/transplant. I have suffered with what I have referred to as nerve pain relentlessly my entire life I also have bad arches on my feet adding to the feet nerve pain... physical activity pisses it off and sometimes just breathing aggravates it, heats a problem, colds a problem, rain is a problem...my body hurts all the time even when I'm good its still pain round the clock, I just say it goes up and down and people do NOT understand. I've spent a fortune on marijuana for SOME relief (disability will not help with cost) but it was a lifestyle choice and still when the really bad attacks come I sometimes suffer at full blast barely able to lay down just in pure pain/a state of suffering (praying, breathing, angry for lack of help) for weeks at a time. I decided my suffering is so bad with all the kidney failure junk piling on top of the disease stuff and nerve pain that I was ready to take on a new narcotic addiction (to knock me out for some escape during the worse episodes which are occurring on more frequent intervals now) and now that I'm willing to take this drug and discovered how much it can help (oxycodone and/or percocet combo) Ive also learned doctors hate prescribing it and find my doctors are running away from me or trying to push alternatives instead of giving a decent dose of medicine to someone who is suffering and basically dying, they could provide some relief. They say some cancer patients take upto 500-600mg a day and at a mere 50mg/day they are trying to tell me the drug isn't working for me...while I'm telling them it DOES work when I take 30-40mg shot it helps ALOT. They think I don't suffer the way a cancer patient does...they're wrong... if they could just experience for one day what I have experienced for over 10,000 days they would rate my pain on par with 'cancer patients' . I must say I do feel extra sad for people with nerve pain who also have this 'cancer pain' lord help us. Geez.
Thank you for your lovely reply. I am like you I hate to take medication but I am only on a very low dose of Gabapentin which is not really helping but if I stop them I have no alternative. The neurologist said he is sure I have peripheral neuropathy but sometimes it does not show up on the nerve conduction tests. Every test I have had has come back normal and I just want somebody to find something so I know what I am dealing with. I went to a podiatrist a few months ago and she said I had "flat feet" so now I am wondering if this has caused it. Is fallen arches the same thing? I do get a lot of pain in the arches and my heels. She made me some inserts which sometimes make my feet hurt more and I do tend to take them out. Do you get the numbness in your toes and feet as well? I started off with numbness in my toes, then the tingling and burning in my feet and now it is in my ankles and lower legs. I wake in the mornings now and my feet are in fire and they are very red. Every day I seem to get another symptom and I am trying to keep positive and make plans for the future but it is hard! xxx
yes flat feet are the same as fallen arches, I have had them since I was a child, they did not become a problem until a few years ago, when they really got worse, now I have no arch at all on my right foot and my right legs is turned inward, which really affects my walking and balance. I don't really think it affects the neuropathy, but it is just another thing to contend with. I had orthotic made also, which I cannot wear, so uncomfortable and they rubbed the skin off the inside of my foot, so I don't use them. I have consulted my doctor so many times and I was not getting any answers, he finally sent me to a neurologist, who said the same as yours did, nothing much showing up, he said I had neuropathy, could stay the same, could get worse, so not much help. My own doctor finally admitted I have neuropathy, but offers no information or treatments. So I understand your frustration at not getting a proper diagnosis, it is maddening. I don't think they know what to do about it, so they do nothing.
My toes are numb, my feet are tingling, I get muscle spasms in my feet where they tighten up and I cannot move them. when I touch my legs from knee down there is a strange tingling sensation, My right ankle is stiff and almost unmovable. If anything touches my legs, even slightly, it really hurts, out of all proportion to what has touched me. Some nights my legs are so painful I cannot sleep, or find a comfortable position for them. It sounds to me that we have the same symptoms. I have asked how the nerves became damaged, but I never get a proper answer. I am still going to live my life as I used to. even though somewhat slower, a few adjustments have to be made. It took me a long time to accept that I need a walker, but now I have a I am so grateful for them. We have a river cruise planned for October in Europe, I am taking my walker, I use the wheelchairs at the airport. We went on one two years ago, everything went well, I could not walk as much as I would have liked, but we made adjustments to our sightseeing, and enjoyed every minute. It seems to me there is not alot known about our condition, they cannot fix it, so they pretend it is not there. Make your plans for the future, you can adjust and tweak things as necesssary, for instance I cannot possible stay in a hotel that does not have walk in showers, climbing into a tub is out of the question. So plan your future, do what you can still do, do what you can do, not what is expected of you.
mostly people are really nice and helpful if they see you struggling a bit.
Thank you so much for your positive message. Not had a good day today and I do not think the Gabapentin are working. Actually nothing seems to work and I have had a few panic attacks in the last few days worrying about the future. I really wish I was as positive as you but unfortunately I have not reached that stage yet! I really admire all that you have achieved as it is not easy but you have done it! Hopefully I will get there and I will keep trying.
Can you please tell me what Tylenol is? I am in the UK so maybe we cannot get it here and I have not heard of it. I have started taking vitamins as I hate taking any medication especially mind altering drugs like Gabapentin and amitriptyline.
I really appreciate your help. Karen xx
Hi. so sorry you have not had a good day, hope tomorrow will be better for you. Tylenol is Canadian for Paracetamol, I find it works just as well as anything else, I do not like to take all these drugs with side effects, who knows what they do in long term use. I was taking Ibuprofen, but it gave me a stomach ulcer, I did not know but I had internal bleeding from it and had to have a blood transfusion. so I stay away from drugs if I can. I do take Magnesium, calcium vitamin D3. it is supposed to help with the muscle cramps and spasms, and does seem to. I know it is difficult but try to keep positive, somedays, especially in winter when it rains for days on end here in British Columbia, I just feel like giving up and just sitting and watching daytime TV, I try not to give in to it. I am also origanally from the UK, I was born in Southwold, Suffolk, lived there until I was 9, then we moved to Bournemouth, lived there til 1966 when we moved to Canada.
Anyway please try to keep positive, make plans for your future if you can, I know how awful this disease is, and not getting much help and support with it is very frustrating. I try to stay away from the prescription drugs because I do believe they make you more tired and depressed. Keeping a clear head, getting out for a walk and try to live as normal a life as possible seems to work for me. I have neuropathy, but it does not have me. Shirley XX
Hello, I've been reading some of the recent posts and decided to chime in.
Canvas is my compliant. It stands for Cerebellar ataxia, Neuropathy, Vestibular areflexia syndrome. It is three things together. In addition to painful neuropathy, my balance is off. I see my neurologist in NYC every 4 months and we have experimented with different medications and coping mechanisms. Lyrica helps me, gabapentin no. I also take Cymbalta for pain. I take low dose zolpidem to sleep. The best way to discribe my pain is an electric current going through my body. In the morning I'm ok but it starts last in the afternoon. Then I'm done for the day. Down to the yoga mat for light movement.
It's all about pain management. Marijuana helps a lot too. Certain strains are very helpful medically. I hear it's now legal in Canada?
Hi, Glad you joined us! I have not heard of your particular diagnoses, but pleased to hear you are getting some help with your medication. My balance is also way off, also I cannot walk down slopes or kneel down. which I find annoying because I would like to try yoga. I did Tai chi for a while, until that became too difficult. I am the same as you, pretty good in the mornings, that is when I do my dog walking, grocery shopping and anything that need doing around the house. What is not done by lunch has to wait until next day, because afternoons I am done for the day, finished. You are right, it is all about management and coping, I used to be able to clean house, get it all done, then gardening etc all day long. I have had to change, it was hard for me because I am a person who likes everything done and finished by days end, but I am Okay with it now, tomorrow is another day and the jobs will still be there waiting for me.
Marijuana will soon be legal in Canada, by July I think, if all goes according to plan. I just take tylenol for the really bad days, and have learned to relax, rest and let things go until I can get to them
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Hi, Glad you joined us! I have not heard of your particular diagnoses, but pleased to hear you are getting some help with your medication. My balance is also way off, also I cannot walk down slopes or kneel down. which I find annoying because I would like to try yoga. I did Tai chi for a while, until that became too difficult. I am the same as you, pretty good in the mornings, that is when I do my dog walking, grocery shopping and anything that need doing around the house. What is not done by lunch has to wait until next day, because afternoons I am done for the day, finished. You are right, it is all about management and coping, I used to be able to clean house, get it all done, then gardening etc all day long. I have had to change, it was hard for me because I am a person who likes everything done and finished by days end, but I am Okay with it now, tomorrow is another day and the jobs will still be there waiting for me.
Marijuana will soon be legal in Canada, by July I think, if all goes according to plan. I just take tylenol for the really bad days, and have learned to relax, rest and let things go until I can get to them
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