Hello @as143, Welcome to Connect. I see from your earlier post you mentioned your neuropathy was due to the COVID vaccine. I know that the condition has a major impact on all of us no matter what the cause, it's just difficult to live with at times and we just want it to go away. I'm not sure if you have done any research on ways to treat or deal with the symptoms but I thought I would share some information that may help you learn what's available.
Hello @as143, Welcome to Connect. I see from your earlier post you mentioned your neuropathy was due to the COVID vaccine. I know that the condition has a major impact on all of us no matter what the cause, it's just difficult to live with at times and we just want it to go away. I'm not sure if you have done any research on ways to treat or deal with the symptoms but I thought I would share some information that may help you learn what's available.
Hi. Thank you for this info. I do research but find it overwhelming at times. I do not have pain at least thus far but I did try Lyrica for a while but it did nothing. I requested physical therapy to help with muscle weakness and gait issues which helped a great deal. Was sure I was going to be in a wheelchair the rate I was going. Now I use a cane on my weaker days and often use it more for security than actual support.
Am quite disappointed in my neurologist though she did thorough testing all that was discovered was MGUS which is being monitored and I am told by oncologist that it is NOT the cause of my neuropathy though neurologist said it could be. Searching now for a specialist in Boston because I would like more focused answers to my questions and I don’t feel I am getting anywhere near that causing me a great deal of confusion. I do realize answers are difficult but it is hot or miss with my time-limited, barely-available neurologist. Basically I’ve been told it’s autoimmune, no help for it, it will get worse have a good day. Not satisfied with that!
I appreciate the info you recommended and will definitely check it out.
It is frustrating when you can't do a lot for yourself and I'm not dealing with a neuropathy anymore but I have really really bad arthritis in both my wrists and in my knees and I'm on letrozole for the breast cancer issue I have. The letrozole causes the pain in my legs and muscles. I'm on the Gabapentin to help the hot flashes but I started taking 800 milligrams of magnesium and I think that's helping more than the Gabapentin I've noticed how busy I've been but I've also had vertigo in the past and thought maybe that was part of that I am calling my doctor Monday to see if I can go off the gabapentin and see what happens.I have also started using some essential oils that a friend of mine gave me her sister-in-law has pain due to breast cancer and other forms of cancer and she's been using this mixture of essential oils with coconut oil and her pain has subsided dramatically so I have started doing that also.I hope at some point everything lights up because I just am not the person I was before I dread going to bed I tried getting out of bed if I sit down it takes me forever to get up because of the pain it's ridiculous you would think that they would come up with something else to help without all these bad side effects yes I'm glad to be alive<br />
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Hi, just read your words, I too have severe peripheral neuropathy in lower legs, plus osteoarthritis in knees, (and a broken bone in my foot, ouch) So, here I am looking at my bed which I have not been in or on in over 3 years. I found a recliner in a discount drug chain about three years ago, and it goes completely flat. It is no effort whatsoever to just adjust level of comfort, watching tv etc, and when ready just lean back. The great part is, like you, I could not get out of my bed, and sometimes doing so caused the additional terrible pain of my thigh muscles cramping, it is just as easy as leaning forward, I am sitting up, feet on floor, take my time, grab my cane, and off I go not out of pain but out of the ridiculous time I have getting up and out of bed, especially for night time bladder trips. I found that after switching from gabapentin to pregabalin (Lyrica) I have such relief sleep is not a problem anymore. Terry
My 90 year old mother has peripheral neuropathy that mainly affects knee pain on her left leg due also to a visible hematoma present since her total knee replacement. She also has weak ankles from lack of conditioning exercise. Her podiatrist attributes most of her problem to poor posture walking since a lumbar spinal fusion at L2-3 5 years ago. She takes only 200 mg of gabapentin and 20 mg Tramadol once a day plus way too much Tylenol. For those who have peripheral neuropathy (knowing that doses are dependent on body weight) what is your daily dose of gabbys at what age and body weight? I have severe foot neuropathy from frostbite damage and at 250lbs take up to 1500 mg day. Presently mom only takes 200 mg a day at age 90 and 185 lbs with excessive leg lymphedema
My 90 year old mother has peripheral neuropathy that mainly affects knee pain on her left leg due also to a visible hematoma present since her total knee replacement. She also has weak ankles from lack of conditioning exercise. Her podiatrist attributes most of her problem to poor posture walking since a lumbar spinal fusion at L2-3 5 years ago. She takes only 200 mg of gabapentin and 20 mg Tramadol once a day plus way too much Tylenol. For those who have peripheral neuropathy (knowing that doses are dependent on body weight) what is your daily dose of gabbys at what age and body weight? I have severe foot neuropathy from frostbite damage and at 250lbs take up to 1500 mg day. Presently mom only takes 200 mg a day at age 90 and 185 lbs with excessive leg lymphedema
I think if it were my mother I would have a discussion with her doctor on the best way to relieve the pain. I think you are right about the amount of gabapentin but there may be other considerations that may help based on what symptoms you describe.
Have you seen a gastroenterologist? You could have esophageal issues causing peripheral neuropathy. I have nutcracker esophagus, esophagitis eosinophilic and gastroparesis due to spinal injuries starting at age 1 and just now figuring it out, I am 49. The nutcracker and gastroparesis are motility diseases. I don't expect you to have nutcracker, it's very rare and very painful but you may want to look up the others.
@jjwest i was diagnosed with Nutcrackers Syndrome , I was also diagnosed with SMA by my GI , along with Barrett’s Esophagus and Gastrophoresis. I hadn’t read about Nutcracker Esophagus though, I’ll be seeing my GI later this month, I have a lot of questions. 24/7 pain
Hi, I am new to this site and have enjoyed reading many of the comments. I have PN in feet and lower legs and hands. This came about very slowly and I only a year ago got diagnosed. I don't have diabetes and was DNA tested to see if it was hereditary (not). I have been seeing a neurologist for about a year but nothing has really stopped it progression. I am lucky in that I have almost no pain just tingling. I am worried about it's progression. Any advise
? Thanks
Hi, I am new to this site and have enjoyed reading many of the comments. I have PN in feet and lower legs and hands. This came about very slowly and I only a year ago got diagnosed. I don't have diabetes and was DNA tested to see if it was hereditary (not). I have been seeing a neurologist for about a year but nothing has really stopped it progression. I am lucky in that I have almost no pain just tingling. I am worried about it's progression. Any advise
? Thanks
Welcome @monive, I think we all worry about the progression of our neuropathy condition. There is another discussion you might find helpful since it sounds like you also only have numbness and tingling symptoms.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.
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Hello @as143, Welcome to Connect. I see from your earlier post you mentioned your neuropathy was due to the COVID vaccine. I know that the condition has a major impact on all of us no matter what the cause, it's just difficult to live with at times and we just want it to go away. I'm not sure if you have done any research on ways to treat or deal with the symptoms but I thought I would share some information that may help you learn what's available.
--- Foundation for Peripheral Neuropathy - Living Well:
https://www.foundationforpn.org/living-well/.
Have your doctors offered any treatments or suggestions to help with your symptoms?
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4 ReactionsHi. Thank you for this info. I do research but find it overwhelming at times. I do not have pain at least thus far but I did try Lyrica for a while but it did nothing. I requested physical therapy to help with muscle weakness and gait issues which helped a great deal. Was sure I was going to be in a wheelchair the rate I was going. Now I use a cane on my weaker days and often use it more for security than actual support.
Am quite disappointed in my neurologist though she did thorough testing all that was discovered was MGUS which is being monitored and I am told by oncologist that it is NOT the cause of my neuropathy though neurologist said it could be. Searching now for a specialist in Boston because I would like more focused answers to my questions and I don’t feel I am getting anywhere near that causing me a great deal of confusion. I do realize answers are difficult but it is hot or miss with my time-limited, barely-available neurologist. Basically I’ve been told it’s autoimmune, no help for it, it will get worse have a good day. Not satisfied with that!
I appreciate the info you recommended and will definitely check it out.
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Like -
Helpful -
Hug
3 ReactionsHi, just read your words, I too have severe peripheral neuropathy in lower legs, plus osteoarthritis in knees, (and a broken bone in my foot, ouch) So, here I am looking at my bed which I have not been in or on in over 3 years. I found a recliner in a discount drug chain about three years ago, and it goes completely flat. It is no effort whatsoever to just adjust level of comfort, watching tv etc, and when ready just lean back. The great part is, like you, I could not get out of my bed, and sometimes doing so caused the additional terrible pain of my thigh muscles cramping, it is just as easy as leaning forward, I am sitting up, feet on floor, take my time, grab my cane, and off I go not out of pain but out of the ridiculous time I have getting up and out of bed, especially for night time bladder trips. I found that after switching from gabapentin to pregabalin (Lyrica) I have such relief sleep is not a problem anymore. Terry
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1 ReactionHow to find shoes?
Hi @judithjo, Do you mean how to find shoes that are good if you have neuropathy? There is another discussion on the topic here that might be helpful:
--- Does anyone find that a type of shoe helps your foot neuropathy?:
https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
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1 ReactionMy 90 year old mother has peripheral neuropathy that mainly affects knee pain on her left leg due also to a visible hematoma present since her total knee replacement. She also has weak ankles from lack of conditioning exercise. Her podiatrist attributes most of her problem to poor posture walking since a lumbar spinal fusion at L2-3 5 years ago. She takes only 200 mg of gabapentin and 20 mg Tramadol once a day plus way too much Tylenol. For those who have peripheral neuropathy (knowing that doses are dependent on body weight) what is your daily dose of gabbys at what age and body weight? I have severe foot neuropathy from frostbite damage and at 250lbs take up to 1500 mg day. Presently mom only takes 200 mg a day at age 90 and 185 lbs with excessive leg lymphedema
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1 ReactionI think if it were my mother I would have a discussion with her doctor on the best way to relieve the pain. I think you are right about the amount of gabapentin but there may be other considerations that may help based on what symptoms you describe.
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Helpful -
Hug
5 Reactions@jjwest i was diagnosed with Nutcrackers Syndrome , I was also diagnosed with SMA by my GI , along with Barrett’s Esophagus and Gastrophoresis. I hadn’t read about Nutcracker Esophagus though, I’ll be seeing my GI later this month, I have a lot of questions. 24/7 pain
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Like -
Helpful -
Hug
2 ReactionsHi, I am new to this site and have enjoyed reading many of the comments. I have PN in feet and lower legs and hands. This came about very slowly and I only a year ago got diagnosed. I don't have diabetes and was DNA tested to see if it was hereditary (not). I have been seeing a neurologist for about a year but nothing has really stopped it progression. I am lucky in that I have almost no pain just tingling. I am worried about it's progression. Any advise
? Thanks
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Like -
Helpful -
Hug
2 ReactionsWelcome @monive, I think we all worry about the progression of our neuropathy condition. There is another discussion you might find helpful since it sounds like you also only have numbness and tingling symptoms.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.
The Foundation for Peripheral Neuropathy has some suggestions on Living Well with neuropathy here that might be helpful - https://www.foundationforpn.org/living-well/.
How long have you had the neuropathy symptoms before you went to a neurologist for a diagnosis?
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7 Reactions