Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I have suffered with pn for 10 years.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Sounds crazy, but I plan to try it tonight. Thanks

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@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

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My arms hurt on the underneath side. Is that where your arms hurt?

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HI: I was diagnosed with peripheral neuropathy after spending 42 days in the hospital. While there I was unable to get out of bed and before I was released I had to learn how to walk again. I was also sent to a nursing home after being discharged. Several factors attributed to this condition, being confined to bed was one and being put on Amiodarone was another. I suffer severe pain on a daily basis and cannot tolerate pain meds as I can not stand being drugged. Even a quarter of a drug at 10 mg renders me useless.

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Hello Trish, I too suffer from strong pain almost daily. I have had this condition which started over 8 years ago. My problem is in my left leg and left foot and the pain increases when I walk or stand. I have not been hospitalized and I don’t use opiate meds. I have had two back surgeries and many tests, but no one can find a solution. I just find my pain is not regulated well with Gabapentin that I now take at 1600 mg/day. I find myself trying to get comfortable reading or watching TV to take my mind off the pain. I do pray to God to relieve my pain and I know he will find a solution for my pain. Thank you for letting me share my situation and I do pray for your pain relief. If anyone has a solution, please share.

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Thanks, Robert for your response. I don’t know anyone else with this condition. I found a little relief raising my left leg high on cushions if I’m laying about reading. It does help. But, then sleeping is an other story. Even the touch of the sheet can feel like a hammer blow. It is the strangest malady I have ever encountered. My PCP prescribed lidocaine ointment, it did absolutely nothing except smell out the bedroom. LOL I can’t and won’t use opiate meds either for they keep me disoriented and unsteady on my feet. I am on Xarelto for A-Fib and blood clots and when I have to go off the Xarelto for medical procedures or surgeries I suffer severe back pain. No one that I have spoken with has ever heard of this. I am trying to get out the word by writing to the manufacturer of the drug and the FDA but so far it is too soon for a response. I have told each of my doctor and nurses but no one else has ever heard of this before. (They can’t say that now, can they?) I was hoping to find some one else here who suffers from the same fate. I pray you find relief from your pain and want you to know that I more than appreciate your response. Maybe together we can find others who are in the same boat and have found some relief.

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Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

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My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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Where do I find that video? I have neuropathy in my left leg and foot.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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Is this the video you were referring to @kdubois?
http://mayocl.in/2gf92tS Mayo Clinic dermatologist Mark Davis, M.D., describes erythromelalgia and treatment options.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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I am also looking for that video. Please share results if you get one. Thanks

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@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

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Hello John: Thanks for your reply. You are correct in that we need to be our own advocates. I found two reasons that I have peripheral neuropathy, one being the length of time I was kept in bed during a hospitalization and the other from a medication Amiodarone that I literally had to beg my doctors to get me off that drug. Right now I take nothing for the pain and/or pins and needles sensations. I’d rather tough it out than be on opioids that keep me housebound. I will keep on searching and will definitely check out that Facebook site you mentioned. Thanks for that.
Keep on helping others.
Trish D

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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Hi Trish – Colleen posted the link to the video just above your post. I watched it this morning – pretty informative.

Liked by trish602

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@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

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Hi Trish and John. I use a topical cream called Magnilife DB painrelieving foot cream and it relieves some of my foot burning and numbness. It can be found in most drug stores, OTC product.

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@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

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Hi Robert, Thanks for the information. I’m always looking for something better for my feet :-). I looked it up and see that it has the following – Inactive Ingredients: Water, Canola Oil, Beeswax, Octyl Stearate, Methyl Salicylate, Tocophenol Acetate (Vitmain E), Triethanolamine, Bergamot OIl, Camphor, Menthol, Eucalyptus Oil, Steareth-21, Ceteh-20, Stearic Acid, Cetyl Alcohol, Glyceryl Stearate (and) Pag-100 Stearate, Propylene Glycol, Zanthan Gum, Propyl Paraben, Carbomer 940, Imidazolinyl Urea.

From the name I thought it might have magnesium in it. I’m currently using Life-flo Pure Magnesium Oil spray to help with hydrating my tootsies but I don’t like it as much as the lotion version of their product. I just thought the oil spray might be better but I’ve found I like the creams and lotions better. I have tried all of the usual suspects with no help – Australian Dream, Blu-Emu, etc… I might give the Magnilife DB stuff a try.

Thanks for the info!
John

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