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

Posted by da20pilot @da20pilot, Feb 13 10:33am

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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@da20pilot

I've started looking at doctor reviews before making an appointment. Vitals.com googlescholars.com and LifeScripts.com. Not every doctor is listed, but it's helped me with selecting one. What specialty is the doctor who diagnosed neuropathy? I would find a neurologist who has good reviews, and if it's possible, talk with people who have been seeing a neurologist. It's clear that something is going on.

Do you have numbness anywhere? What causes your falls? What were the first signs you experienced that caused you to see the doctor? I'm asking these things to satisfy my own curiosity, but they're the kind of questions you should be hearing from your doctor. If a doctor ever recommends that you meet with a psychiatrist (because they think it's all in your head), go looking for a better doctor who hears and believes what you're saying.

Welcome to the "opioid medication for pain control club". My pcp prescribed morphine sulfate contin for me for pain six years ago, and last year, suddenly he went from prescribing morphine specifically for long term pain control, to the party line that says "opioids are not for pain". So, I have to wonder if he was lying to me 6 years ago or lying last year. I don't buy the politically driven about face on the subject of pain meds. It angers me that we who have been taking opioids long term, and doing so responsibly and taking them as prescribed, all of a sudden are denied the only medication that has been efficacious, when we have tried every other medication and nothing relieved our pain except an opioid. There has to be a solution to the opioid scare that controls the abuse without making us the bad guy who pays the price for illegal drug use by denying us access to the medication we need. By "need" I'm not implying addiction. Insulin is freely available to diabetics. They need it, but no one would accuse them of being addicted. NSAIDs are bought OTC for arthritis and other inflammatory issues, without government interference. So, opioids have been used for centuries to treat pain, but now our illustrious bureaucrats think that it doesn't actually treat pain – it only mixes the signal to our brains and fools us into thinking that we don't have pain. It's a bunch of you know what.

Climbing off the soap box.

I've read numerous posts here at Mayo Connect about seeing an internist. I've never seen one, but it might be helpful for you to see one. If you do find an internist, I would advise you to ask if you'll be talking with the doctor or an assistant. I'm tired of taking a big chunk of my day, only to discover that the person who sees me is not much more than a messenger for the doctor. Two years ago I had a spinal cord stimulator implant, and the only time I ever met the surgeon was in the surgery prep cubicle. I will never see him again. I should write a review on one of those websites that I mentioned.

Keep pushing forward. Speak up! If your pain is disabling, be sure that doctors know that. I get frustrated when I'm with my wife at an appointment with a doctor and she downplays her pain. I will speak up and tell him that she sits in the recliner all the time because she's in too much pain to get up and do anything. Self advocacy is very important. If it's hard to admit to the doctor how much pain you're having, ask someone to go with you who knows what you're going through and will be able to support you by being pushy on your behalf.

I hope you'll find help soon.

Jim

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@da20pilot

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.

Jump to this post

You're welcome. So glad to hear you are heading in the right direction. I speak from the heart because I know what a difficult journey this has been for me. I have needed to learn so much along the way. Not just about my disease but, about myself…my life choices, my decisions, my perspectives. I continue to grow each and every day with so much support and passed down knowledge from Mayo Connect. May you also benefit from others like you.
Rachel

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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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Such a valid point with much truth.

Liked by iceblue

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