1. < Neuropathy

Need Help..peripheral neuropathy, chronic widespread pain and weakness

Posted by sues3gems @sues3gems, Aug 31, 2011

Hello. I'm hoping to obtain help from either a Mayo Clinic patient or Mayo Clinic Staff. I am 47 years old, female, married. For the past 10 years, I've been suffering with the diseases/symptoms that I have listed on my profile. However, the ones that are the most painful and have left me disabled are the peripheral neuropathy (nerve pain in both feet,legs,hands,arms), chronic widespread pain and weakness. fibromylagia and chronic fatigue, . I've been from doctor to doctor, with a host of med;s and the latest is a alternative doctor who has taken me off of gluten and dairy. It's been 3 months abstained from gluten and dairy but to no avail... my nerve pain and chronic fatigue and everything else remains! She tells me it takes about a year for me to abstain from gluten and dairy for my body to begin to heal and my symptoms to to heal therefore, my pain can go away. Is this true? I'm now considering a trip to Mayo Clinic because I don't know what to believe anymore..I'm desperate to find out why my pain continues. My med's are: 600 mg. Neurontin 3 x day, Fentanyl Patch 75 mcg., Topamax 150 mg., Plaquenil 100 mg, Armor thyroid 60 mcg., Herbal Vitamins for Andrenal Glands

Interested in more discussions like this? Go to the Neuropathy Support Group.

dhamil | @dhamil | Jun 29, 2022
In reply to @bill5 "I suffer from idiopathic neuropathy, I had a knee replacement done 6-7-22. I have been having..." + (show)
@bill5

I suffer from idiopathic neuropathy, I had a knee replacement done 6-7-22. I have been having problems with muscle spasms as well as the neuropathy to the point I am unable to handle the pain! The surgeon had started me on Tramvdol and a muscle relaxer Diazipam. This was not covering the muscle spasms at all so he xhanged me to Flexeril. Since starting Flexeril my idiopathic neuropathy has spiked to uncontrollable levels. The Dr. has not altered his course and I am in misery with my feet burning as well as the muscle discomfort. I have only gotten 4 hours sleep in the past three nights! Help! Has anyone had these problems? Is the Flexeril causing the issues? I am using the prescribed drug for pain ( tramadol ) this does not at all cover my discomfort! Beginning to have very depressive thoughts. Any ideas from anyone. I am typing this at 3 am in the morn as I cannot get rest! I am unable to take Ambien, as well as Klonopin which I took prior to surgery as they don’t mix with the meds Dr. prescribed! Any help would be helpful, I cannot handle this anymore! Life with this kind of pain isn’t worth continuing!

Jump to this post

According to drugs.com one of the less common side effects of flexeril is numbness, tingling, pain, or weakness in hands or feet. My understanding is to look for this type of wording when looking for neuropathy side effects. Not sure if it is related but maybe do some research and bring this up with your doctor. Wishing you some relief.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 29, 2022

Good evening @leigh17. You are only a couple of weeks out of surgery. I had a TKR last year and I have SFN (small fiber neuropathy). I was a "crazy person" for several weeks. Have you started PT yet? How is that going? I started PT the day after surgery. Then my PT worked with my MFR (myofascial release) therapist. One kept things moving and the other worked on making sure there was no build-up of scar tissue and other fascia-related pain symptoms.

I talked to my surgeon and he gave me some Dilaudid which I knew would be helpful. He also worked with me to make sure that I was using my medical cannabis appropriately. I only used opioids for the first 3 days.

Did you have same-day in and out surgery? Now that was a bit of a challenge. However, I did feel like I had my own personal team working to make sure I was sleeping and beginning recovery.

I don't know what else to offer you at this point.........we all get down and dumpsy sometimes. Every day should be a little better. I agree with @efgh1020. Keep writing. We are right here for you.

May you be free of suffering and the causes of suffering.
Chris

REPLY
1 reply
deke4fun | @deke4fun | Jun 30, 2022
In reply to @bill5 "I suffer from idiopathic neuropathy, I had a knee replacement done 6-7-22. I have been having..." + (show)
@bill5

I suffer from idiopathic neuropathy, I had a knee replacement done 6-7-22. I have been having problems with muscle spasms as well as the neuropathy to the point I am unable to handle the pain! The surgeon had started me on Tramvdol and a muscle relaxer Diazipam. This was not covering the muscle spasms at all so he xhanged me to Flexeril. Since starting Flexeril my idiopathic neuropathy has spiked to uncontrollable levels. The Dr. has not altered his course and I am in misery with my feet burning as well as the muscle discomfort. I have only gotten 4 hours sleep in the past three nights! Help! Has anyone had these problems? Is the Flexeril causing the issues? I am using the prescribed drug for pain ( tramadol ) this does not at all cover my discomfort! Beginning to have very depressive thoughts. Any ideas from anyone. I am typing this at 3 am in the morn as I cannot get rest! I am unable to take Ambien, as well as Klonopin which I took prior to surgery as they don’t mix with the meds Dr. prescribed! Any help would be helpful, I cannot handle this anymore! Life with this kind of pain isn’t worth continuing!

Jump to this post

Sorry for your situation. I’ve had peripheral neuropathy for 20+ years and the the the first thing I will tell you is that tramadol is junk for most people, it’s a very weak drug. I live with the same exact symptoms that you have. My only relief is I take 3000mg of Gabapentin/daily ( you need to work up to it). My real lifesaver is I take 3 10mg of oxycodone/daily even though I will tell you that it’s not near enough but it’s all my “pain doctor” will prescribe. Since the geniuses in the government started deciding instead of our own doctors what was an appropriate amount of pain medication (narcotics) to prescribe I would say millions of people in this country suffer everyday. Hopefully your primary care physician can steer you in the right direction. Good luck.

REPLY
1 reply
leigh17 | @leigh17 | Jun 30, 2022
In reply to @artscaping "Good evening @leigh17. You are only a couple of weeks out of surgery. I had a..." + (show)
@artscaping

Good evening @leigh17. You are only a couple of weeks out of surgery. I had a TKR last year and I have SFN (small fiber neuropathy). I was a "crazy person" for several weeks. Have you started PT yet? How is that going? I started PT the day after surgery. Then my PT worked with my MFR (myofascial release) therapist. One kept things moving and the other worked on making sure there was no build-up of scar tissue and other fascia-related pain symptoms.

I talked to my surgeon and he gave me some Dilaudid which I knew would be helpful. He also worked with me to make sure that I was using my medical cannabis appropriately. I only used opioids for the first 3 days.

Did you have same-day in and out surgery? Now that was a bit of a challenge. However, I did feel like I had my own personal team working to make sure I was sleeping and beginning recovery.

I don't know what else to offer you at this point.........we all get down and dumpsy sometimes. Every day should be a little better. I agree with @efgh1020. Keep writing. We are right here for you.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

My last spinal surgery was 2016 , this is all a new situation. Getting a cat scan today and more blood work, but thank you for trying to assist,

REPLY
julbpat | @julbpat | Jul 1, 2022
In reply to @deke4fun "Sorry for your situation. I’ve had peripheral neuropathy for 20+ years and the the the first..." + (show)
@deke4fun

Sorry for your situation. I’ve had peripheral neuropathy for 20+ years and the the the first thing I will tell you is that tramadol is junk for most people, it’s a very weak drug. I live with the same exact symptoms that you have. My only relief is I take 3000mg of Gabapentin/daily ( you need to work up to it). My real lifesaver is I take 3 10mg of oxycodone/daily even though I will tell you that it’s not near enough but it’s all my “pain doctor” will prescribe. Since the geniuses in the government started deciding instead of our own doctors what was an appropriate amount of pain medication (narcotics) to prescribe I would say millions of people in this country suffer everyday. Hopefully your primary care physician can steer you in the right direction. Good luck.

Jump to this post

The opioid situation is so wrong. My illness began with stress fractures in my heels (from continued power walking through pain). This was seven years ago, at the beginning of the opioid restrictions. My family practice doctor reluctantly prescribed me Percocet. After I was diagnosed with fibromyalgia, I spent years having to beg for pain medication. The worst was a horrible recovery from elective breast reduction surgery. The plastic surgeon sent me to a pain clinic ten days after surgery! More begging and humiliation.
Of course, I know now that the underlying cause for all this pain is SFN. Oh how I wish it had been discovered years ago, before I suffered so much.
But back to the opioids - after a heart-to-heart discussion with my pain clinic provider, they reluctantly increased me from 10 mg to 15 mg per day. Yep, 15 mg for a 24 hour period. So now I get to continue calculating how much pain I have to endure at any given time.
Every physician on the planet would agree that this is an insane way to practice medicine.
Sorry, I’m grumpy this morning after enduring hours of hip flexor pain with poor sleep. I am an active person, and would really like to remain that way. But as you guys know, one night of suffering and poor sleep can ruin your plans for the next day!

REPLY
1 reply
duquer | @duquer | Jul 2, 2022
In reply to @julbpat "The opioid situation is so wrong. My illness began with stress fractures in my heels (from..." + (show)
@julbpat

The opioid situation is so wrong. My illness began with stress fractures in my heels (from continued power walking through pain). This was seven years ago, at the beginning of the opioid restrictions. My family practice doctor reluctantly prescribed me Percocet. After I was diagnosed with fibromyalgia, I spent years having to beg for pain medication. The worst was a horrible recovery from elective breast reduction surgery. The plastic surgeon sent me to a pain clinic ten days after surgery! More begging and humiliation.
Of course, I know now that the underlying cause for all this pain is SFN. Oh how I wish it had been discovered years ago, before I suffered so much.
But back to the opioids - after a heart-to-heart discussion with my pain clinic provider, they reluctantly increased me from 10 mg to 15 mg per day. Yep, 15 mg for a 24 hour period. So now I get to continue calculating how much pain I have to endure at any given time.
Every physician on the planet would agree that this is an insane way to practice medicine.
Sorry, I’m grumpy this morning after enduring hours of hip flexor pain with poor sleep. I am an active person, and would really like to remain that way. But as you guys know, one night of suffering and poor sleep can ruin your plans for the next day!

Jump to this post

I just wanted to share with you, that I had some of the same symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy.It took me six years to find a treatment that actually works! If you would like to know more about the RST Sanexas treatment, I would gladly send you my story. Let me know. Wish you the best!

REPLY
4 replies
johnmacc | @johnmacc | Jul 2, 2022
In reply to @duquer "I just wanted to share with you, that I had some of the same symptoms. My..." + (show)
@duquer

I just wanted to share with you, that I had some of the same symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy.It took me six years to find a treatment that actually works! If you would like to know more about the RST Sanexas treatment, I would gladly send you my story. Let me know. Wish you the best!

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I'm interested. Please send me your info. Thank you, John Maccorkindale

REPLY
1 reply
NJ Ed | @njed | Jul 2, 2022
In reply to @duquer "I just wanted to share with you, that I had some of the same symptoms. My..." + (show)
@duquer

I just wanted to share with you, that I had some of the same symptoms. My diagnosis is severe axonal sensorimotor polyneuropathy.It took me six years to find a treatment that actually works! If you would like to know more about the RST Sanexas treatment, I would gladly send you my story. Let me know. Wish you the best!

Jump to this post

Hi,
I am relatively new to Mayo Connect and bumped into your comment. Working thru how this web site works can be a challenge for new viewers. In early 2020, Mayo in MN said I had idiopathic axonal sensorimotor polyneuropathy. This was confirmed again in late 2021 at Johns Hopkins. I do not have pain at this time, numbness with bilateral drop foot and my balance is not good which you likely experience as well. How long did the treatment last and how often do you return for the treatment?
Ed

REPLY
1 reply
duquer | @duquer | Jul 2, 2022
In reply to @njed "Hi, I am relatively new to Mayo Connect and bumped into your comment. Working thru how..." + (show)
@njed

Hi,
I am relatively new to Mayo Connect and bumped into your comment. Working thru how this web site works can be a challenge for new viewers. In early 2020, Mayo in MN said I had idiopathic axonal sensorimotor polyneuropathy. This was confirmed again in late 2021 at Johns Hopkins. I do not have pain at this time, numbness with bilateral drop foot and my balance is not good which you likely experience as well. How long did the treatment last and how often do you return for the treatment?
Ed

Jump to this post

Hello Ed, in answer to your question each treatment lasts between 20 and 35 minutes. I went through approximately 40 treatments over a year.

I have included A link to my story which is posted on this website. If you have any more questions afterward please let me know

https://connect.mayoclinic.org/comment/645606/

Best wishes

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