Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I was so surprised to hear others with restless leg syndrome and peripheral neuropathy! I’ve had RLS since I was very young, but peripheral neuropathy is a new and terrible thing for me. I’m 59 and thinking if it’s this bad now….?

@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3×300 for seven days, then 2×300 for seven days, then 1×300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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I take three 300 pills in the morning and at night for an active case of PHN with no problem. The evening dose may help me sleep better.

@julchilds

I was so surprised to hear others with restless leg syndrome and peripheral neuropathy! I’ve had RLS since I was very young, but peripheral neuropathy is a new and terrible thing for me. I’m 59 and thinking if it’s this bad now….?

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I have had RLS and neuropathy, but the RLS mostly went away when I was treated for Obstructive Sleep Apnea. If you felt tired and easily fall asleep when sitting, you might want to ask your doctor about getting tested for sleep apnea. I think my RLS comes from my anxiety-my legs were always moving when I sat. I now have eliminated the benzodiazepene and gotten a medication increase so my anxiety has been reduced to the point where with the sleep apnea treatment I no longer have the anxiety.

@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3×300 for seven days, then 2×300 for seven days, then 1×300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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@elisabetha — I personally have taken Gabapentin (Neurontin) for PHN, postherpetic neuralgia, arising after shingles. I didn't have any problems with the medication at all — being on it or coming off of it. It really helped the PHN be much more tolerable till it finally went away.

Getting very dizzy is something to take seriously, exactly as you have done with your research on it. I would really suggest you speak to the doctor who prescribed it or one of the nurses in the doctor's office.

@elisabetha

I have a comment/question that may seem silly to some but is very important to me; I have been prescribed Gabapentin (Neurontine) for prevention of PHN (after shingles). After one pill i got very dizzy and started reading up on it. I found it a bit scary to realize that gabapentin is for epileptic and other seizures as well as psychoses. The side effects seem very severe as well. Given that this has been prescribed for me prophylactically, i wonder if the side effects are too severe? I am supposed to take 3×300 for seven days, then 2×300 for seven days, then 1×300 for seven days. Have any of you had this prescription for PHN ? Thank you,
Elisabetha

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@elisabetha@lisalucier – you may want to modify dosage and the times that you take the medication. I did not do so well with the first effort and then my neurologist and I did some modifying. Now…I take 900 mg at about 9:30 pm….none in the daytime. He told me that the positive effects could last into the following afternoon. And at that time I use medical grade marijuana, both vape and topical. Just a suggestion to explore.

Thank you all for the feedback re PHN. I will do just what you suggested; talk with my Dr. to modify the dosage and/or timing.
Elisabetha

@julchilds

I was so surprised to hear others with restless leg syndrome and peripheral neuropathy! I’ve had RLS since I was very young, but peripheral neuropathy is a new and terrible thing for me. I’m 59 and thinking if it’s this bad now….?

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@julchilds I have had small fiber peripheral neuropathy for over 20+ years and I'm 75 now. It doesn't normally spread fast but each of us is affected differently – non medically speaking person here.

I agree with @johnhans about getting checked for sleep apnea. Last night I had an overnight sleep apnea test and was surprised to learn how many people have sleep apnea and don't even know it. The doctor also mentioned he saw some leg movement in the test that he thought could be RLS. If you also have chronic fatigue or are tired a lot and low energy, you might want to discuss a sleep apnea test with them.

John

Hi, I have peripheral neupa. Caused by a Stroke several years ago. I have it on the palm of my right hand and right foot (it feels like something burning inside those areas)

@bonnieh218

Elisabetha, have you actually been seen and diagnosed with Morton’s Nueroma? I was also told my foot symptoms, (burning, pain, numbness) could be Morton’s Nueroma. After consulting with surgeons at Mayo they said no. They said I had metatarsalgia. They advised me on shoes and metatarsal pads for all my shoes and sandals. As long as I am wearing these I have no problems with my feet. I absolutely can’t go barefoot at all without problems popping up.

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Sorry about the delay in my response. My mother broke her hip and I have been preoccupied with that. Here is information on what I use. I hope this is not information overload.
Good information on this site.
https://www.myfootshop.com/

clear, adhesive-backed Gel Metatarsal Pads in shoes beneath the weight-bearing surface of the forefoot to reduce pressure on the ball of the foot and metatarsal heads
I use this clear gel pad on my sandals. I like that it’s clear and unnoticeable. You can take it off to clean it when necessary. Just rinse it under hot running water and let it thoroughly dry. The best part is they become sticky again and will stick on your sandal again. I’ve had mine for a year and a half now and they are still good.
https://www.myfootshop.com/metatarsal-pad-placement
I was told that the sole of my shoe must be very firm so that the toes do not bend. They said to press upwards on the undersole near the toes. If it bends upwards, do not use those.
At my doctor appointment I was wearing “Dansko” sandals. He said they were perfect but made just one adjustment, to add a metatarsal pad. These are the sandals that I added the clear metatarsal pad to. It did take a couple of weeks to get used to them but was well worth it for the comfort I get now using them.
They recommended the brand “Hoka One One” for tennis shoes. That is what I have now.
I also have a pair of “Alegria” shoes; they are a slip-on shoe and just a bit dressier.
I use a metatarsal support inside of my Hoka tennis shoes. It is the full length of the shoe with a metatarsal pad built right into it. https://sofsole.com/ I take the insole that comes with the shoe out; they are too thin and do no good anyway.
https://sofsole.com/category/insoles
https://sofsole.com/product/Airr
My SOFSOLE supports say: “Metatarsal Support, Reinforced Stability, Deep Heel Cup” right on them.

I buy all my shoes and supports at Tradehome Shoes. This is a MN company and I don’t believe they have an online site to purchase anywhere. I do buy the clear Metatarsal Pads at myfootshop.com. They just seem to fit better than any others I have found at retail stores.
Tradehome Shoe Stores, Inc.
8300 97th Street South,
Cottage Grove, MN 55016
651-459-8600
input@tradehome.com

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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I'm sure everyone would like me to be brief..so here goes 25+ yrs or progressively more painful leg cramps toes to buttocks. A great night 5, bad night 30 + and up all night walking, crying ,falling, breaking bones, Have had doctors think it was AlS, Isaacs, fibromyalgia, NMO etc. I have taken antiseizures, anti anxieties, muscle relaxers, lyrica, nueronton, tonic water, pickle juice, drank gallons, taken magnesium, calcium, potassium, ate bananas.(in different combos) Slept with soap shavings under sheets , wore sneakers to sleep so toes wouldn't droop and drank vinegar, as well as spinal steroidal injections and the list goes on. One important other fact is father had them starting in early 30s died of brain cancer in 50s, only sibling a brother also had them but passed at 45 so don't believe theirs got this advanced. I am 57 and female. Are there any others out there like me.?

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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@debupallnight Have you tried physical therapy? I had awful cramps in my feet and legs and physical therapy helped me tremendously. I still get mild cramps occasionally but I can usually deal with them by massage or just walking them off.

@cognac

@rabbit10, I've had peripheral neuropathy for at least 20 years. It's in my legs and my feet. My doctor has me on Gabapentin and Cymbalta, with the occasional ES Tylenol. My neurologist at the time said it was because I drank too much Scotch and Bourbon. I've been sober now for 8 years, but still have the neuropathy. Good luck. @cognac

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I'd like to offer you my experience. My peripheral neuropathy started a few years ago – it was called idiopathic, meaning no known cause. My symptoms were reduced balance, instability standing or walking, leg weakness, pain in my feet, blotches on skin on my feet.
At some point, I stopped taking statin drugs, and the symptoms reduced dramatically. Then, I reduced, and almost stopped alcohol. Those symptoms reduced further. Alcohol consumption had also brought about leg cramps at night! Stopping alcohol has greatly reduced or eliminated the cramps. Finally, alcohol interferes with sleep (waking up at 3 or 4 and not able to get back to sleep) and it is fattening!
So, even though sobriety is no fun and doesn't cure PN, I believe sobriety does reduce the painful symptoms of PN and has other benefits.

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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Yes, I did 5 months of PT. Also anodyne electrical therapy. Neither made significant difference. Hot weather always makes neuropathy worse soak feel in cool water while I watch tv. Use lidocaine roll on for bottom of feet. That helps the most.

@allisonsnow

another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy

Thanks to anyone here that can help me !

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Hello @debupallnight — Welcome to Connect. You certainly have a lot on your plate and it sounds like you've tried a lot of different things to treat them. Did you see a neurologist or specialist for a diagnosis? I was just wondering if you had any tests that point to a diagnosis or if it's just what the doctors thought it was due to your symptoms. I have idiopathic small fiber PN but I only have the numbness and no pain.

Keep asking questions. You are definitely your best advocate. I'm a firm believer in there is an answer out there somewhere for all of us but we just have to keep asking questions and trying to find it.

John

@suzeebee227

I have peripheral neuropathy in both feet, R foot is the worst and It's getting worse, especially when driving and at night. I have researched this, since the cause is unknown. I had taken statin drugs for over 20 twenty years and it seems there have been many studies done that show a relationship between statins and idiopathic neuropathy. Can't get any answers and I'm trying to stay off a lot of meds that have side effects such as Gabapentin.

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I don't know what you take statins for, but there is a small print warning that they can cause atrophy in your leg muscles. Statins made my leg muscles so weak I could barley get around in a walker. I was taking it for a cholesterol level of 230 almost 2 years on the medicine at different doses the number didn't budge. My friend suggested a natural combo of Alfalfa tablets, ubiqinol & coconut oil & in one month my number dropped to 180. Two years later it's 160 & holding. I was off my walker within two weeks of stopping Statins. Now I have other causes for leg pain including bone cancer & radiation. They grew crocked when I was young so I'm use to pain. Makes me scream sometimes, keeps me up 99% of time, makes me want to get drunk & die at times. I'm a VERY light drinker~one six pack every 18 months, 4 bottles of wine a year…heavy stuff at Christmas. Anyway, I just found something that REALLY helps~ Rolfing. An old form of deep tissue message, specific exercises & physical therapy. Any exercise that light & easy like Sit n Be Fit on Public Broadcast TV, or Miranda Esmond- Whites' Classical Stretch is the BEST! Hydro therapy to cleanse the lymph glands is very important too. Walking moving be patient if it takes 4-5 times to do something-that's okay. Just persevere & be kind & gentle to your self & others. Oh,stretch your calf's out slow & gentle before you lay down & capsaicin ointment on the joints help.

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