Nerve damage and pain that isn’t neuropathy but feels like it.

So my PCP Dr called me to let me know what the pain mgt Dr said to her. Waste of time. So my next thing I want to do go back to PT wouldn't hurt to do that. Time is running out. I don't like taking all these different meds alot of them makes my stomach hurt and then I don't want to eat anything I am fading away. Continue to pray 🙏.

I will pray for you Sheila. Don’t lose hope. PT helps a lot of people. If he gives you a referral please follow up with them and let us know how you are managing with it.

I will. Going back to PT will not help me with sweating for no reason throughout the day and night. All these meds are having adverse effects on me. Can't stand it either. My eyes disease B something , cataracts, floaters, fatigue and pain Ugh its enough to make anyone cry. With limited money I am loosing the battle.

Loosing this battle.

Hi Sheila,
One possibility that could explain peripheral neuropathy in legs/feet and eyes could be a genetic mutation in a mitochondrial gene. I have two mutant genes (SDHB and FBXL4) that directly affect mitochondrial function, and mitochondrial dysfunction can cause neuropathy depending on its severity. Mitochondria are the "power plants" of your cells, and their depletion can cause cell death. You would need to get your DNA sequenced, and the cost of this may or may not be covered by insurance. Ideally, you should get your whole genome (all your chromosomes) sequenced, or you can get smaller 'panels' of genes, i.e., those identified thus far to be implicated in peripheral neuropathy. If you don't already have one, you should get yourself a neuromuscular neurologist preferably one listed on the Charcot-Marie-Tooth Association (CMTA) website (in their 'Excellence Centers'). CMTA also puts on free webinars for patients and professionals about the latest in diagnosis and treatment. To be honest, they are just beginning to conduct clinical trials for gene therapy, so there is no magic bullet that will instantly cure your problem. However, if it turned out for example, that you have a mutant MFN2 gene, this is the most common cause of CMT disease type 2, which means that researchers are making advances. In the interim, though, it sounds like you need to get effective pain control medication and to get off drugs that aren't working and are giving you loads of side effects. Tricyclic antidepressants are supposed to help with neuropathy pain and feelings of hopelessness. (I can't take them because I have epilepsy and they trigger seizures.) Unfortunately, medical science is not very advanced in this area, so soldiering on is necessary. Keep up the PT if you can. Remember there are a lot of people seeking answers and pushing the researchers.

Thxs for your information.

As always I wish all of you a great day ❤️

Hi to nemo1.
Yes there’s some help in an area no Drs check.
Nutrition.
Integrated or Functional Medicine to start.
Look at thyroid testing panel because deficiency is rampant in th US at least.
I’m Poly Neuropathy ( we think) 23 yrs. All following a spine surgery n then a fusion break. Miserably, excruciating pain 24/7.
Increase all minerals, reverse osmosis water filtration. Stop PUFA veg oils n all toxins. Personal use items, lotions, supplements must b looked at because cheap oils are used that make our detox systems fail.
Look at adrenal support n anti inflammatory diet n lifestyle too. Alternative support has brought me back some , at least I cook again.
Vertigo is severe fr me too so I’m slow now.
Fr pain;
Horizant, Lyrica, Savella, Nucynta have all helped to some extent.
Look at holistic n homeopathic pain control ( no side effects).
Arnica salve, on Etsy is wonderful w/ a few add in like cramp bark🙂
Get th gut healthy-medical grade probiotics has been best response.
NAC
ALA
L-Glutamine to increase glutathione levels
Whole food only vitamins, not man made.
Also, if related to injury or surgery like me could b central nervous system syndrome. ( post injury neuropathy).
It continues to get worse so blood sugar is key also. This is why thyroid n liver are so important. Functional med Drs gave me great info online n my thyroid is working now ( 13 yrs down).
Best of luck in this nightmare. I here IvIG work good but no one gets a Dr who will give out or test appropriately 😓
Neuropathy websites are full of things that work too. 5 yrs of reading n study have helped me n actually helped my diabetic husband too👍🏻
I’m sorry for this nightmare. My Drs had no clue ( civilian n military). Told me I was lying , or mistaken.
Follow what your body tells you.
Meditation n specific healing behaviors are very important too.
Prayers for u, I feel so for anyone in this group because u have to heal yourself.
Acupuncture also works.
Don’t hesitate to go into group or 1on 1 fr counseling because it’s a huge life changing event.
💕🙏🏻😓

You bring up a good point. My doctor is trying to diagnose uncommon autoimmune conditions. I have had things develop rapidly. Over two years I’ve deteriorated. I am beginning to think that because I have autoimmune conditions that the MRNA shots screwed up my immune system and revving it up to attack itself more then before. I happened to have a bad reaction to the last MRNA shot. My pulse shot up really high later that day. I did not have an obvious reaction within the allotted 15 minutes. I did not believe it would cause problems. My sister pled with me not to get the shots. I thought I’d die if I didn’t get it. So this makes me not want to live with all these issues. So If I don’t die from covid i will by complications.

A new development since 4/8/23. My pulse went from usual 80’s-90’s to 100’s at times. It dropped to low to mid 60’s. THis morning I woke up with a pulse of 110 went to sleep it was in mid 60’s. What the heck is causing this now? I called the cardiologist, he said its not bad come in after I’m back from vaca so I see him next week. It’s not normal. When I lay flat, I get SOB and as my pulse drops down to 59 one day I got it then too. I have to take blood pressure meds and one is specific for pulse I held back taking one one day the pulse was low 60’s and it dropped to 59 woke up with pulse of 110. I know anything over 100 is tachycardia. That isn’t good. To fluctuate from one to the other. I have to take the meds to prevent it from going into the 100s. I can’t take furosemide because sodium and another are lower. So that would help the edema in the feet and help relieve that miserable pain.

Have you tried Lidocaine ointment 5% On feet? I use it and applied it the other day to all over bottoms of feet. It was excruciating to apply it with a q tip. I was originally on Gabapentin but new neuro put me on Lyrica instead. Honestly, if it is helping and is curbing pain if even a little, without it I’m sure I’d be wheelchair bound.

New update. Neuro said she wants to wait until labs are back and mri, ct and possible s. Tap is back to diagnose. If it is SPS, she said ativan or Valium. I’m not going near ativan and I have no idea about Valium. We shall see.

Do you ever get swelling? That makes the pain worse in the feet.

I hope you get some relief soon.

Hello again and thank you for your reply and the picture included! It will be most helpful 🙂
Sometimes I feel that the diagnosis of neuropathy causes great stress and confusion to the physicians who are treating us. It’s such a vague area of medicine with no clear definitive answers.
I did have an EMG last year that showed that I have moderate to severe axonal distal polyneuropathy
My neurologist told me at that time that my symptoms wouldn’t worsen or go above my knees, and to put on a pair of high top boots and practice driving in a parking lot with my husband in the car.
Well I did just that, although my driving skills
are not the problem, it’s the loss of being able to feel the pedals!
I have seen two neurosurgeons who both said that surgery would not be advised after reviewing my mri.
My CRP and Sed rate are both normal.
The new joint and muscle pain is a mystery to me .
Came on quickly about a month ago. I still have it along with the constant numbness in my feet and ankles.
I’m sorry for all of your troubles , surgery is no picnic !
And to have this curse on top of everything else just doesn’t seem fair.
I choose not to take any prescription medicine for this as I just think it’s a slippery slope, and from what I’ve read from others experience , it’s not effective anyway.
For me, walking daily
even if only for a short distance , really helps in so many ways.
Being in pain all the time
is no fun, especially when no one can give you a reason for the pain.
I’m going to send you something that I received from a friend . Be well.

You are not alone. There is n o thing that can help me. I hurt so bad.