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.

@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.

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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.

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@da20pilot

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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I agree with you regarding massage and even myofascial release and physical therapy. I have never been one to speak up. Kind of like what @jimhd said about his wife not being honest about her pain. I rolled with the "no pain, no gain" theory and paid the price as a result. As I mentioned before…self awareness and discovery is ever evolving.

I want to also add that you really got me. I will be celebrating my 30th wedding anniversary this year. I'm truly very sorry for your situation which adds insult to injury. I greatly hope that you and your children will find a way to work through adversity in order to find peace and healing.

Rachel

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@jimhd

@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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Hi Jim
Great insight. My feet and hands r numb. Yet they burn like well standing barefoot on ice. When on opioids my hands or fair but are bad without. I fall mostly on the steps and in the shower. I assume its from looking up to down or vise versa as that is a test I had to do during my medical to get and keep my pilot's license. I loose my balance even standing still thu. I've broken ribs and toes falling. I've held onto the railing so hard it has flung me into the wall face first. I feel for your wife as I didn't get out of my adjustable bed for years and wouldn't have until my wife kicked me out. Get this I was diagnosed with a disease called polycythemia vera and put on a pill called hydroxyurea a chemo pill after I had a DVT blood clot. After 2 years this hit me like a brick the neuropathy I mean. Turns out I never needed it as I had secondary polycythemia and it resolved it self after I stopped working. Where I work had mold that caused severe copd so when I left a few year later the incurable polycythemia was gone. My hematologist diagnosed me when I went to see him and described my conditions. Burning numbness and pain in my legs. Trouble with balance and what I told him is all the sudden I became stupid. I couldn't concentrate. My pcp treated my for years then moved on to a hospital and sent me to a pain doc. After about 7 minutes over 3 appointments and a nerve test he told me I wasn't sick. Cut my opioids in half to take me off of them. I was in sever pain but thought it was from being inactive for years. Now that I've been on my own and up and around for months I realize it wasn't from being inactive it's what I was feeling before but worse. The new pain doc tells me the same bs so I started to cut my dose before he stopped them. Now I can barely walk. The burning has moved to my chest as well. I am lost and can't believe this is happening. Now that I've seen 2 pain doctors I worry no one will treat me.
I really appreciate your story and thoughts
Thank you.

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@rwinney

I agree with you regarding massage and even myofascial release and physical therapy. I have never been one to speak up. Kind of like what @jimhd said about his wife not being honest about her pain. I rolled with the "no pain, no gain" theory and paid the price as a result. As I mentioned before…self awareness and discovery is ever evolving.

I want to also add that you really got me. I will be celebrating my 30th wedding anniversary this year. I'm truly very sorry for your situation which adds insult to injury. I greatly hope that you and your children will find a way to work through adversity in order to find peace and healing.

Rachel

Jump to this post

Wow thanks.
I also never really complain but didn't do enough to help myself and I'm now paying the price. I always assumed everything was set in stone and was assured by my wife and doctor that things would be ok. Boy was I wrong.
Thanks so much for your response and health and happiness to you and yours.
Tom

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@lorirenee1

@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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Thanks so much. I did get a medical marijuana card and that's part of the problem now as no doctor will treat me because the are afraid to loose their lience. I thought I was doing myself good and was encouraged by family and friends to do so. It helps tremendously. So the last pain doc say give up your card and I'll treat you. After I call the state and gave up my expensive card he comes back and tells me he will no longer give my the meds I need. I'm so lost.
Thank you for your ideas though it is encouraging that what I was doing wasn't wrong.
Much love
Tom

REPLY
@jimhd

@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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Jim I meant to ask how is your implant working. This is what the the current doctor wants to do to me. Some sort of magnetic field or something like that.
Thanks
Tom

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Happy Valentine’s Day everybody I hope it’s a very uneventful day for you when it comes to pain stuff may you feel some kind of love today

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@da20pilot

Thanks so much. I did get a medical marijuana card and that's part of the problem now as no doctor will treat me because the are afraid to loose their lience. I thought I was doing myself good and was encouraged by family and friends to do so. It helps tremendously. So the last pain doc say give up your card and I'll treat you. After I call the state and gave up my expensive card he comes back and tells me he will no longer give my the meds I need. I'm so lost.
Thank you for your ideas though it is encouraging that what I was doing wasn't wrong.
Much love
Tom

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I never tell any of my doctors that I use medical marijuana.

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Mine drug test I have no choice unfortunately

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@da20pilot

Mine drug test I have no choice unfortunately

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They never detected it on my urine test.

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