Confused: test didn't detect neuropathy, but many symptoms

Posted by da20pilot @da20pilot, Feb 13, 2020

Hi
Judging from the other posts I am not alone and extremely disappointed with the current health care i am receiving. I was given a chemo pill and got some form of neuropathy. I was a daily drinker at the time as well had a fair amount of anxiety and on and off hypothyroidism. Fell into a depressed state for many years. Was given opioids for the last 12 years to treat what I would call severe pain in my feet legs and hands and life was bearable. I fall down constantly. My doctor took a position in a hospital so I was referred to a pain clinic Now they wont give me the opioids to me because a nerve test couldn’t detect neuropathy. The current doctor had me convinced I didn’t need them so I started taking less. I can barely walk. The burning has moved to my chest. I haven’t slept in days. It feels like I’m standing barefoot on ice. My legs feel like I ran a marathon the day before and the cramping after a short walk is unbearable. I cant believe they expect me to live like this. I at a total loss. Any thoughts would be appreciated.

Hello and welcome to Connect. It appears you came here for support and to find like minded folks who are in the same unfortunate boat as you. I'm sorry you lost your PCP and now are faced with this whole new perspective on pain medication. Do you have a Neurologist? EMG/Nerve studies do not detect Small Fiber Neuropathy which is what I have and you describe what I feel. My suggestion is to find a Neurologist asap and explain yourself. I'm in hope they may perform a skin biopsy on you to rule out SFN. Mention your concerns and the chronic pain you endure. In the mean time, self care may help a bit by omitting alcohol, processed foods, sugar. Drink ALOT of water and add the proper supplements to help fight pain. Heat, ice, topicals…not complete game changers but, when you are in pain….anything is better than nothing. I wish you well and hope today brings relief. Be well.
Rachel

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Hello @da20pilot, Welcome to Mayo Clinic Connect. I know how frustrating and disappointed you must be when you can't get the help you need. I can tell you that you are not alone and other members share your symptoms and feelings. There are a couple of discussions you might find helpful.

> Groups > Neuropathy > Does anyone have a treatment for Neuropathy due to chemo
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

> Groups > Neuropathy > Small fiber peripheral neuropathy and alcohol
https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/

You might also be interested in the following article that was posted on the Foundation for Peripheral Neuropathy email news awhile back.
Neuropathic Pain: Navigating the Challenges of an Elusive Disease — https://www.neurologyadvisor.com/topics/neuropathy/neuropathic-pain-navigating-the-challenges-of-an-elusive-disease/2/

You mentioned you have had a nerve test but it didn't show any evidence of neuropathy. Have you thought about seeking a second opinion?

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@rwinney

Hello and welcome to Connect. It appears you came here for support and to find like minded folks who are in the same unfortunate boat as you. I'm sorry you lost your PCP and now are faced with this whole new perspective on pain medication. Do you have a Neurologist? EMG/Nerve studies do not detect Small Fiber Neuropathy which is what I have and you describe what I feel. My suggestion is to find a Neurologist asap and explain yourself. I'm in hope they may perform a skin biopsy on you to rule out SFN. Mention your concerns and the chronic pain you endure. In the mean time, self care may help a bit by omitting alcohol, processed foods, sugar. Drink ALOT of water and add the proper supplements to help fight pain. Heat, ice, topicals…not complete game changers but, when you are in pain….anything is better than nothing. I wish you well and hope today brings relief. Be well.
Rachel

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Sorry – meant to also mention physical therapy, cognitive behavioural therapy, myofascial release, massage, mindfullness, meditation. It's a whole lot but, truthfully, it takes a whole lot if you are in much pain.

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@da20pilot, just don’t give up. Lot of ‘egos’ to weed thru in life. Just don’t give up!!

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@rwinney

Hello and welcome to Connect. It appears you came here for support and to find like minded folks who are in the same unfortunate boat as you. I'm sorry you lost your PCP and now are faced with this whole new perspective on pain medication. Do you have a Neurologist? EMG/Nerve studies do not detect Small Fiber Neuropathy which is what I have and you describe what I feel. My suggestion is to find a Neurologist asap and explain yourself. I'm in hope they may perform a skin biopsy on you to rule out SFN. Mention your concerns and the chronic pain you endure. In the mean time, self care may help a bit by omitting alcohol, processed foods, sugar. Drink ALOT of water and add the proper supplements to help fight pain. Heat, ice, topicals…not complete game changers but, when you are in pain….anything is better than nothing. I wish you well and hope today brings relief. Be well.
Rachel

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Good advice. I will seek a Neurologist. I quit drinking and will head your advice on drink and foods. I see the pain doctor tomorrow and was going to insist on a skin biopsy. I reached out to the doctor that preformed the nerve test and he told me about the small fiber neuropathy with lead me to here. Thanks for the response it means a lot.

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@rwinney

Sorry – meant to also mention physical therapy, cognitive behavioural therapy, myofascial release, massage, mindfullness, meditation. It's a whole lot but, truthfully, it takes a whole lot if you are in much pain.

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Thanks again. I will try your suggestions. My experience with the massage is although it offers relief it seems to come back worse but will try again. The others you mentioned I have not try and will give it a shot. I did get some cream off of Amazon but it's short lived and expensive.

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@birdierobin

@da20pilot, just don’t give up. Lot of ‘egos’ to weed thru in life. Just don’t give up!!

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Understand to top it all off my 30 year marriage has recently come to an end and only one of my five children will speak to me. Something got to turn my way soon i hope.
Thanks for your help and advice

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@johnbishop

Hello @da20pilot, Welcome to Mayo Clinic Connect. I know how frustrating and disappointed you must be when you can't get the help you need. I can tell you that you are not alone and other members share your symptoms and feelings. There are a couple of discussions you might find helpful.

> Groups > Neuropathy > Does anyone have a treatment for Neuropathy due to chemo
https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

> Groups > Neuropathy > Small fiber peripheral neuropathy and alcohol
https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/

You might also be interested in the following article that was posted on the Foundation for Peripheral Neuropathy email news awhile back.
Neuropathic Pain: Navigating the Challenges of an Elusive Disease — https://www.neurologyadvisor.com/topics/neuropathy/neuropathic-pain-navigating-the-challenges-of-an-elusive-disease/2/

You mentioned you have had a nerve test but it didn't show any evidence of neuropathy. Have you thought about seeking a second opinion?

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I will look over the articles thanks. No I have not sought a 2nd opinion but will consider. I am going to insist on a skin biopsy though. This is all rather sudden.

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@da20pilot Hi. First, I am so sorry for all of your losses. Loss of health, wife, kids….horrible to cope with. I too, suffer from foot neuropathy, and have a few suggestions. First, get a medical marijuana card if legal in your state. Marijuana does seem to distance the pain. I do get high from it, but have learned to control how much I take, and that helps. Also, research Kratom, if it is legal in your state. It is essentially a tree that grows in many Asian countries, and the leaves are used to ward off pain. The stuff does work for pain, if you find the right leaf strain to take. These two things do help. God Bless, and hang in. Your post touched me. You have gone through way too much. Lori Renee

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@da20pilot – I am sorry you are going through so much right now. Sometimes, when it rains it pours. You have been offered some really good advice here. The only thing I wanted to add is that based on my personal experience, stress can make neuropathy pain MUCH worse. Anything you can do to calm the waters (prayer, meditation, change in self-talk, etc.) may also help.

Sending positive energy your way….

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@da20pilot

Understand to top it all off my 30 year marriage has recently come to an end and only one of my five children will speak to me. Something got to turn my way soon i hope.
Thanks for your help and advice

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I’m sorry. This life can end up awful hurtful & lonely.

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@iceblue

@da20pilot – I am sorry you are going through so much right now. Sometimes, when it rains it pours. You have been offered some really good advice here. The only thing I wanted to add is that based on my personal experience, stress can make neuropathy pain MUCH worse. Anything you can do to calm the waters (prayer, meditation, change in self-talk, etc.) may also help.

Sending positive energy your way….

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Thanks

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