I'll post something after the visit on Thursday. All I'll get is a baseline on how bad things are from an emg but possibly a treatment plan. I'm finding that rheumatologists don't like to treat the worst problems caused caused by Sjogren's due to the poor chances of improvement. I've tried two dmards, methotrexate and leflunomide, with little success and am hoping that this doc will give mycophenolate a shot. The worst thing about neuropathy when it passes a certain point is the gait problems, trouble walking. Anyway, thanks. I'll pass on what I find out.
I was diagnosed with chemo induced neuropathy. It actually started after my fifth treatment. I was checked into the hospital for a full week of 24hr drip of chemo every 20 days. I have severe neuropathy and am on 2400 Mg’s of gabapentin a day. This is the only thing that allows me to function. It does make me dizzy but at least I can walk and live a reasonable life.
Would you please share with me the time or times that you take Pregabalin? I have been taking it only at night; but, my doctor suggested I should be trying it during the day also. Thanks
I take it 4 times a day starting at 9;30 a.m. and last one 9:30 p.m. Works pretty good for me. Sometimes I can get by with just 3 but the best is the 4. Its Gabapentin 300 MG Has worked good for me. I'm long retired now but still do all my own housework. My neuropathy is inherited as my father had it and various other family members. All got it later in life as I did.
I was diagnosed with PN a couple years ago...after being miserable on drugs and no help at all, and all the BS on PN - I decided to try to homeopathic route, as obviously, no medical doctor has been able to find something that helps...for me it's more the WHY and WHAT is causing it. I have learned to live with it, and my biggest fear is eventually losing my balance and the ability to take walks. I currently walk 1-2 miles three times a week, chair yoga times a week, do infrared light therapy (at home) lots of leg/feet exercises, and rub frankincense into my feet at night. Are these cures? No, but it allows me to manage - some days are great other days are crappy. Previously eliminated sugar/white starches from my diet (positive lost weight) but it made no difference in the way my feet felt, so at 73 decided not to deprive myself of my favorite foods. Moderation is my motto. I really want to know "why" my B levels have soared - but the doctor doesn't seem concerned.
I’ve had it for years now and I had to retire from flying as I was having trouble getting the brake pedals down after landing. I’ve tried the rebuilder tens stimulator for a while and it did nothing. I’m still able to walk and go to the gym but I walk like I drank a lot of booze.
Well I have the same problems sometimes burning feet the biggest problem I have is balance. I play , golf and work 3to 4 times a week. And no I’m not a drinker but when I walk through doorways u would thing I could do it without bumping into the door jams. Aside from that it’s a beautiful life it could be worse. Im 89 and still putting up the good fight. PS what’s the alternative.
I wear ortho gym shoes and they are great. I don’t have pain, just numbness and weakness. I’m going to Planet Fitness every day and I do leg and calf exercises along with others. There is so much BS on the internet promising cures for neuropathy, I wish there was some criminal justice for these scammers.
Well I have the same problems sometimes burning feet the biggest problem I have is balance. I play , golf and work 3to 4 times a week. And no I’m not a drinker but when I walk through doorways u would thing I could do it without bumping into the door jams. Aside from that it’s a beautiful life it could be worse. Im 89 and still putting up the good fight. PS what’s the alternative.
I just had to laugh when reading your post. I walk six miles a day but those door posts still come out and hit me constantly. I have the black and blue marks on my arms to prove it.
We’ll join the club I hate to say this I’m glad I’m not the only one having this problem I’m not a drinker but at times come people might think I’ve to much to drink. Having said that I am extremely fortunate for these are all the side effects I have up u till now. I know their are a lot of people much worse off then me by all the posts I’ve received. Thank u for sharing your thoughts, keep walking and try not to bang into doorways I can feel your pain. Have a great day.
I’m 73 and my problem is my feet - the numbness. I agree. It makes it extremely hard to walk. I’ve had 7 spine surgeries and one hip surgery when I fell because of my imbalance (getting out the shower on the hard bathroom tiles). Now I use a Rollator just to be able to walk, whereas before I only used a cane. The whole situation is just so depressing. I do have my faith in Jesus to lean on, plus going to the gym, lifting weights and doing an incumbent bike for cardiovascular exercise. Physical exercise helps me tremendously, as well as keeps my weight down. I, too, take Gabapentin, with very little (if any) relief.
I guess this is my cross to bear, but that doesn’t make it any easier.
I find it very interesting to note that I cannot find very many clinical studies on peripheral neuropathy. Has anyone else noticed that too?
I’m 73 and my problem is my feet - the numbness. I agree. It makes it extremely hard to walk. I’ve had 7 spine surgeries and one hip surgery when I fell because of my imbalance (getting out the shower on the hard bathroom tiles). Now I use a Rollator just to be able to walk, whereas before I only used a cane. The whole situation is just so depressing. I do have my faith in Jesus to lean on, plus going to the gym, lifting weights and doing an incumbent bike for cardiovascular exercise. Physical exercise helps me tremendously, as well as keeps my weight down. I, too, take Gabapentin, with very little (if any) relief.
I guess this is my cross to bear, but that doesn’t make it any easier.
I find it very interesting to note that I cannot find very many clinical studies on peripheral neuropathy. Has anyone else noticed that too?
You can change the search words to see if you can find specific studies on a type of neuropathy or other conditions. Also, the Foundation for Peripheral Neuropathy has some of the latest research that might be helpful here - https://www.foundationforpn.org/blog/
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I was diagnosed with chemo induced neuropathy. It actually started after my fifth treatment. I was checked into the hospital for a full week of 24hr drip of chemo every 20 days. I have severe neuropathy and am on 2400 Mg’s of gabapentin a day. This is the only thing that allows me to function. It does make me dizzy but at least I can walk and live a reasonable life.
I take it 4 times a day starting at 9;30 a.m. and last one 9:30 p.m. Works pretty good for me. Sometimes I can get by with just 3 but the best is the 4. Its Gabapentin 300 MG Has worked good for me. I'm long retired now but still do all my own housework. My neuropathy is inherited as my father had it and various other family members. All got it later in life as I did.
I was diagnosed with PN a couple years ago...after being miserable on drugs and no help at all, and all the BS on PN - I decided to try to homeopathic route, as obviously, no medical doctor has been able to find something that helps...for me it's more the WHY and WHAT is causing it. I have learned to live with it, and my biggest fear is eventually losing my balance and the ability to take walks. I currently walk 1-2 miles three times a week, chair yoga times a week, do infrared light therapy (at home) lots of leg/feet exercises, and rub frankincense into my feet at night. Are these cures? No, but it allows me to manage - some days are great other days are crappy. Previously eliminated sugar/white starches from my diet (positive lost weight) but it made no difference in the way my feet felt, so at 73 decided not to deprive myself of my favorite foods. Moderation is my motto. I really want to know "why" my B levels have soared - but the doctor doesn't seem concerned.
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5 ReactionsWell I have the same problems sometimes burning feet the biggest problem I have is balance. I play , golf and work 3to 4 times a week. And no I’m not a drinker but when I walk through doorways u would thing I could do it without bumping into the door jams. Aside from that it’s a beautiful life it could be worse. Im 89 and still putting up the good fight. PS what’s the alternative.
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7 ReactionsI agree it’s like listening to a politician promising everything and delivering nothing.
I just had to laugh when reading your post. I walk six miles a day but those door posts still come out and hit me constantly. I have the black and blue marks on my arms to prove it.
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4 ReactionsWe’ll join the club I hate to say this I’m glad I’m not the only one having this problem I’m not a drinker but at times come people might think I’ve to much to drink. Having said that I am extremely fortunate for these are all the side effects I have up u till now. I know their are a lot of people much worse off then me by all the posts I’ve received. Thank u for sharing your thoughts, keep walking and try not to bang into doorways I can feel your pain. Have a great day.
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2 ReactionsI was taking 200 mg of Benfotiamine, but had to stop as it caused terrible, non-stop itching. You’re one of the lucky ones that helps.
I’m 73 and my problem is my feet - the numbness. I agree. It makes it extremely hard to walk. I’ve had 7 spine surgeries and one hip surgery when I fell because of my imbalance (getting out the shower on the hard bathroom tiles). Now I use a Rollator just to be able to walk, whereas before I only used a cane. The whole situation is just so depressing. I do have my faith in Jesus to lean on, plus going to the gym, lifting weights and doing an incumbent bike for cardiovascular exercise. Physical exercise helps me tremendously, as well as keeps my weight down. I, too, take Gabapentin, with very little (if any) relief.
I guess this is my cross to bear, but that doesn’t make it any easier.
I find it very interesting to note that I cannot find very many clinical studies on peripheral neuropathy. Has anyone else noticed that too?
@wascaly, There are many studies on PN. Here are the search results using Google Scholar (https://scholar.google.com/) - https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=clinical+study+on+peripheral+neuropathy&btnG=
You can change the search words to see if you can find specific studies on a type of neuropathy or other conditions. Also, the Foundation for Peripheral Neuropathy has some of the latest research that might be helpful here - https://www.foundationforpn.org/blog/
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