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Hi. Can you comment on my neuropathy? My docs are stymied.

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Old 06-24-2019, 08:45 PM   #1
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Default Hi. Can you comment on my neuropathy? My docs are stymied.


ONSET: I developed burning neuropathy in the aftermath of a difficult hip revision surgery. I was on multiple serious meds for about three months, from not being on meds at all. Using them only as indicated, I was on Valium, Oxycodone, Oxycontin, Clonidine, and various stomach and muscle relaxants. I found that when I tried to stop the meds, I had withdrawal from Valium and I couldn't stop the Oxy. I stopped the short acting but couldn't stop the Oxycontin without help. I was put on Suboxone for nine days and quit. This caused an enormous amount of emotional and physical stress. Then, two weeks after stopping the opiates altogether, I took Macrobid for a UTI. Then I went on fire.

It lasted for a week. Then went. I spent the year after surgery with muscular pain and muscle spasms. Spasms in my face and interior places! I also had hot flashes that I was told were menopause. I had temperature intolerance and would get rigors when cold. I still had no idea this was neuropathy.

Then I got some really bad news in the summer, AND I took antibiotics for acne (doxycycline). The burning came back. It lasted about three weeks then passed. The other symptoms remained constant. Then, almost a year after my first onset of burning pain, I took another Macrobid for a UTI. It is considered one of the safer meds. The burning returned after one pill. It has been seven months.

DIAGNOSIS: My family doctor believes I have mitochondrial dysfunction and suggested ALCAR, ALA, etc. So I have been take strong doses of nerve oriented supplements. I take methylated B6 as I have MTHFR.

PROGRESSION: The burning stayed for about two months. My mouth burned and I drove with ice in my mouth for weeks. I used cold packs to sleep. I spent two hours a night in the tub and walked for hours in an indoor pool at my gym.

Then it changed. It became less hot. I spent weeks at temperature intolerance. First it was cold that upset me for weeks, then heat. Then it was any kind of contact. Even the fan upset my skin. I have fleece clothes and blankets. Then I felt methylated. I felt like my whole body ate a cough drop and was blooming with cold blast. These stages last for weeks and then morph into something new. Sometimes there is overlap but usually I don't go backwards.

I had two good weeks of just discomfort, then my most recent flare introduced tingling and stinging. It's bad. It's in my mouth, vagina, back, soles of my feet, etc. It is covering more area than any of the other symptoms.

After a few months, my flares became more spaced apart. At this point they are every two weeks. They last about three days and are generally whatever I am feeling intensified. I get waves of the pain. They last a few minutes then it passes. I can get six or so an hour.

STYMIED: Multiple systems are affected. This is what is confusing. I had it in my mouth, eyes, inside my chest, and my genitals. I have had stabbing pains in my feet and felt bugs crawling on me (stopped). And then I get large areas of skin that, in the beginning, swelled, and turned red and emitted heat. Now those areas are whatever I am going through.

Now I have verifiable reasons for nerve damage. I have Charcot Marie Tooth and I have spinal stenosis. But an EMG showed no impinging on a nerve and CMT doesn't seem to present this way.

My questions:

1). Does this sound familiar to anyone?
2). Does the progression seem to be a healing, or:
3). Does neuropathy jump systems and compartmentalize like this?

Thank you for your patience.

I found a neuro on the website for Peripheral Neuropathy and will see him in six weeks. Until then I have an appointment with my pain doc for something until then. I don't want Lyrica ever again and am considering Nortriptyline. I haven't had meds apart from CBD for this and am at the end of my rope.
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Old 06-24-2019, 10:37 PM   #2
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My Mood: Hi. Can you comment on my neuropathy? My docs are stymied.

You might look into -Reflex Sympathetic Dystrophy (RSD and CRPS) (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)

Explore the sticky threads also, to see if if might fit more than PN..
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Old 06-24-2019, 11:28 PM   #3
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My Mood: Hi. Can you comment on my neuropathy? My docs are stymied.

Hi Sassafrass

Welcome to NeuroTalk .

I have some thoughts which I hope you will find helpful.

"I have MTHFR"
Has this been diagnosed by genetic testing? You can use the Search command here (https://www.neurotalk.org/search.php) to find threads in which MTHFR has been discussed.

"I have Charcot Marie Tooth"
You can use Search to find threads here about this as well.

"My family doctor believes I have mitochondrial dysfunction"
Did your doctor come up with a more specific diagnosis than that?

All the best.
Knowledge is power.
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Old 06-27-2019, 11:49 AM   #4
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Thank you for your responses!

Yes, my MTHFR has been diagnosed via testing. Hetero for C677T.

He was not more specific about mitochondrial dysfunction. But the supplements he suggested to me are contained in PubMed studies for mitochondrial dysfunction.

I do not believe that my symptoms are consistent with either of the suggested conditions of CRPS or Causalgia. Not even CMT. My symptoms are intermittent, all over my body, covering multiple organ systems, changing in presentation consistently across all tissues, not to return to the previous symptoms, and are not limited or connected to my surgical site. I have seen three neurologists who don't know what to make of it.

Each occurrence of burning skin was preceded by taking antibiotics. But they were also all preceded by significant amounts of physical and mental stress from a complicated hip surgery.
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Old 07-08-2019, 04:03 PM   #5
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I just want to update. It has been eight months since the relentless onset of neuropathy. I believe it is finally passing.

The most recent flare with the tingling and stinging was pretty bad. I knew from the stories of other people that tingling can mean nerve healing. I couldn't wait, however. I went to the doctor to get Nortriptyline. It seemed like the least troublesome option to begin with. Again, I was once on 600mg of Lyrica daily and after that atrocious withdrawal, and subsequent withdrawals from Opiates and Valium post surgery, I never wanted to depend on meds again.

I took two pills. I didn't sleep the first night. I had a headache in my eyebrows (weird). I stopped after two and still had the headaches and insomnia for two more days.

And then it started to fade. The waves are less frequent and while I am still aware of them, they pass quickly. My skin feels like a normal temperature. I feel very close to normal much of the time. I have temperature tolerance, although a few hot flashes have come through. They are more "warm" flashes though, with me not breaking a sweat.

And my big test was my son moving out this weekend. Apparently, anxiety can worsen neuropathy and in the past, any stress, like my late mother's birthday, was enough to trigger a flare. This was a big one. But I think I'm in the clear on this one.

I will likely know sure if this is healing in two weeks. My presentations change every few weeks. If this is the end, I will update.

I have an appointment with Dr. Todd Levine in a few weeks. He's an authority on neuropathy and Charcot Marie Tooth Disease. Hopefully he will have answers for me.

Again, I have multiple potential reasons for neuropathy but my family doctor suspected Mitochondrial Dysfunction due to stress, chronic pain and inflammation, and medication. He recommended a handful of supplements and just to power through. That's because SOME MEDICATIONS FOR NEUROPATHY CAUSE NEUROPATHY. I added multiple other supplements from my own studies and it seems the damage is very slowly reversing.

I keep all sufferers of chronic pain in my prayers.
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Old 07-10-2019, 08:21 PM   #6
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Hi Sass,

Can you elaborate on which medications for neuropathy actually cause neuropathy? I’ve read about this on a few sites but they never name meds.

I am 10 weeks post-op robotic hysterectomy surgery and my nerve pain started in the 3rd week after taking a bacterial antibiotic for an infection. My ulnar nerves in my elbows are most affected but also have nerve pain down my legs. Thought I had tendinitis in my hands, went to see my Ortho and he said it was neuropathy and prescribed Gabapentin. I was unable to use my ring & pinky fingers on both hands. The meds resolved this but the burning pain still remains in my elbows.

My OBGYN stated it’s just nerve inflammation and will resolve itself on its own, it just takes time. There is a condition called “Surgical Induced Nueropathy” that happens to about 50% of individuals who go through surgery. My doc does not believe this is the case. I am highly suspect of the antibiotic though.

Prior to surgery, I was completely normal, no issues with nerves. I had a back injury 2 years ago but that healed nicely. Truly struggling to feel normal again.
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Old 07-11-2019, 10:11 PM   #7
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This is a partial list of mitochondria toxic drugs. I have seen more comprehensive ones online that include Cymbalta, a first line of action for neuropathy.

Cut and paste because I have less than 10 posts.

Meformin, a common diabetes drug, also causes mitochondrial dysfunction, which in turn can create neuropathy.

Last edited by Jo*mar; 07-11-2019 at 10:35 PM. Reason: Per NT guidelines on new memeber linking & circumvention
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Old 07-11-2019, 10:16 PM   #8
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I want to add that I am currently in a flare as of a few hours ago. This is not a linear healing at all. It truly is one step forward, two back. My only comfort that is that the flares only last a few days and the symptoms continue to change and lessen with the months.
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burning, meds, mouth, neuropathy, weeks

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