Chronic burning pain/weakness/stiffness and muscle twitches all over the body HELP !!!

Brain and nerves
1

Hello patient community,

​This is my first time writting in this forum, i came here in a hope to find someone who has similar symptoms, or know what's the cause of what i'm about to share.

​I used to be very strong, athletic and pain free and after accutane 3years ago my performance dropped to -10000 and since then i'm in a progressive chronic pain and weakness that made me loose the ability to do weightlifting/running/ long walk/ work and prolonged sitting/ standing for more than 10 minute also cause pain and burning.

​i can't tolerate a long day of continuous activities and i must lay down very often.

​I suffer from a burning pain in midback and upper back that travel down both my fourarms, muscles in those area are sensitive to touch and feel so stiff and contracted.

and i have the same problem in both hips, i have this dull burning pain Inside my hips that travel down my hamstring to my andkle and calve, my hamstrings are always stiff and can't squeez them othewise they cramp badly.

​along with all that, my shoulders/writs/knee/ankles makes popping noises all the time and are very weak compared to how they use to be.

​lately i'm experiencing muscle twitches on over my body and face everyday nonstop, and sometimes even involuntary leg jerks.

i'm In pain almost all day everyday on a scale of 1 to 10 i would give it 6 sometimes 8 at it worse, over the past 12months i managed to get moving again and do very low intensity activitys like yoga or moderate bodyweight workouts how ever i feel that my condition is getting worse over years.

​i saw many docters and none of them seemed to give me a proper diagnosis, and I don't work because my pain gets seriously worse with stress and prolonged sitting and taking public transportations to get to work... so i don't have money to go see more docters.

​I'm so confused and sad about this because it seems that it will never stop.

​i would really apreciate your comments.

2

Did you have any tests to find out the cause? Burning pain suggests a neuropathic problem.  If you have neuropathy, there isn’t really anything they can do.  I have neuropathy and all I can do is put up with it.

3

Sorry you are in so much pain. Have you gotten any bloodwork or xrays or MRI s done? Blood tests can tell alot of what is going on in your body. Yes, not all doctors know everything. It's a matter of finding the right one. I have had chronic nerve pain in my arms for 3 years. The cause for me was a herniated disc in my neck , pinching my nerves. That might be what is happening to you. I had a disc replacement surgery, which was a mistake for me. I got worse. I had a spinal cord stimulator put in last year , near my neck. It has significantly reduced my pain. Good luck and keep us updated on your progress. I wish you well.

4

I saw 3 rheumatologist and 2 osteopath and one internal medicine doctor I did lot of blood test but it showed that I don't have inflamations so all of them said I. Don't have anything and they said it's just stress, but one osteopath said that my body and nerves are in a lot of pain and that I'm out of alignment also, she said there's no permanent solution.

5

I'm sorry to hear your in pain too.

How did it impact your daily life ?

I did blood test but according to docters I don't have arthritis or other inflamatorry diseases or any other condition that might cause pain.

I didn't do any imaging because those docters said I will just waste my money because there's no solution for musculoskeletal and nerve pain even if I found out the exact cause.

They even think that my pain might not be real and that makes me so desasperate.

6

sorry about your suffering too, and my previous post tells what i have tried to get rid of my pain.  There is no definitive test for nerve pain and really goes by symptoms.  I may have a nevro  spinal cord stimulator tried in the next month oir so, and had boston scientific  one last month, but didnt help.   My doc said the nevro is more sofisticated for the pain and uses a different algorithem, but am still researching it more before i give it a try, and seems like most of the studies are funded by the company, and supposedly would help my nerve and low back pain.  Big "promises" and its hard to decide to live with the pain, or take a chance on help, or making it worse too.  Any of your docs suggest spinal cord stimulator?   cbd oil?   medical mariuana?  and good luck to you too

7

Yes, pain has impacted my daily life, it is frustrating not being able to use my arms as much as I would like. Being in pain daily is exhausting. The best thing you can do is take care of yourself and manage the pain, the best way you can. I had a nerve test done before and it didn't show anything even though my nerves are shot. Test are not always accurate. It is frustrating when nobody believes you or think it is in your head. The pain is real and I know it's difficult when there are no answers. Do you take a multivitamin? It might help. Also, drink alot of fluids and get enough sleep each night.

8

Having imaging done would help you a lot because it may show what you are dealing with and give you a diagnosis even though there is no real solution for nerve pain.  I would see a different specalist and push for imaging.

9

check for fibromayalgia if you have not done so yet. imaging can't usually detect this disease. only the symptoms profile and doctor clinical diagnosis would confirm it.

I hope you feel better I can imagine how hard your situation is!!

10

You are really in a battle for your health. Your lack of financial support is impacting you so much. If you are able I think you need to see a neurologist. All of your symptoms sound like nerve issues. To make matters worst living with this kind of pain and change in your abilities just plain knocks your emotions and life to pieces. Your are in mourning for the loss of you and now you need to accept the new you. This takes a lot of acceptance and it just hurts so much. Learning to live in the truth of the new you takes time and much soul searching. Ask for hugs and pity parties from your friends and family. The truth eventually will help you be comfortable in your new life, exsistance. Are there any government programs in your country that can offer assistance and true help, try to find out. Be informed if your activities are making your health issues worse. More damage will make your injuries worse. You need to know what you are dealing with. A neurologist and a nerve conduction test might be the best way to pursue your diagnosis! I am so very sorry for this profound challenge you face, but please know my best wishes are with you. Hugs are on the way! 🍀🍀🍀☘️☘️☘️🕊🕊🕊

11

Sadly there is no permanent solution.  I was offtered low dose antideprssants for my neuropathy which I refused because I felt that I would putting toxic substances into my body that can cause side effects and make the problem worse.  Hot weather helps my pain and with time I have learned to accept it.

12

I have a spinal cord stimulator and it has significantly reduced my pain by 75 percent. I have a better quality of life. I got the St. Jude one. I recommend it. From what I hear, everybody is unique and respond differently, for some it works, for others it doesn't. I also think it's a matter of finding a good surgeon to do the surgery. Good luck.

13

Thanx jenn.   I had the Boston one and felt the impulses but no luck and pain doc suggested me to.   Try nevro.    Feel old can’t stay like this with the pain.  But no guarantee it won’t make it worse.  Still on the fence about it. And what sort of post recovery did u have

14

Hi. I know what you're talking about. Not the cause of your symptoms, but the battle for getting help.

I have severe nerve pain, mainly in my feet, but also in lower back and face since 3 years now. And I've gone through 4 neurological investigations, been to 30+ doctors and a pain management clinic. But nothing showed up on the tests and no one did seem to have a reasonable explanation for my symptoms. I've heard everything from anxiety to MS..

Whatever you do, don't accept a diagnosis of psychogenic pain. That is not a diagnosis and not a real explanation! Apart maybe from some rare cases of psychosis, when you can hallucinate pain.

Keep searching, get all neurological tests done to exclude nerve damage, MS and so on. But after neurologists have made their tests, go to other professions. For example ortopedic surgeons, sport doctors and so on.

Keep terrorising the medical care system as much as your pain terrorises you. The more doctors you meet, the higher the chance of meeting someone who knows. Don't give up.

I finally got a surgery in my right foot, and when they opened they saw real and objective evidence of nerve compression. This doesn't explain all of my symptoms, but now they are at least taking me seriously.

There are no unexplainable medical symptoms, but there are many ignorant doctors. Keep on searching, keep on fighting. And don't give up.

All the best.

15

sorry to hear about your trouble...Im like everyone else here, suffering from peripheral neuropathy that started about 8 years ago as a tiny numb patch on the underside of my toes.It was so numb, but so tiny I didnt really care and figured I was in my 50s, over weight and probably had a pinched nerve.{I was caring for an Alzheimers mom at the time for 10 years so my issues were not a priority back then}

Long story short...it got a LOT worse very suddenly. Last September I was biking for 7 miles, by March I could barely walk across the parking lot . Extreme numbness, tingling, pain, fatigue, exhaustion, sleepiness.My husband had to bring the car up to the front of the store and I started needing a walker for balance and to relieve the pressure on my feet. My legs felt as if they were encased in cement.I was diagnosed with Lymes disease, eventually and given a dose of doxycycline but the symptoms, the post lyme damage was done.Apparently I had had it for years and never known it.

Well, I needed to TRY to grow back those damaged nerve endings so although Im not into vitamins or holistic medicine I figured, what do I have to lose?

The doc had me on Gabapentum for the pain, I take 600 MG before I go to bed at night. It helps a lot, but it only masks pain, its not going to grow nerve endings back.

So, I take TWICE a day, evening and mornning,

Alpha Lipoic Acid,

Fish Oil,

Tumeric,

and MetaNX, a  medical food supplememt thats a super duper version of Vitamins B 6 and 12.

Im not a health nut and wasnt sure this would work but like everyone here, Im desperate.

Well, I started this in early April and in two months I can honestly say theres been a Big difference.Not cured, but the improvements have been so positive I really think this is working.

I no longer wake up so stiff I barely get out of bed.I no longer have to go down the steps holding onto the rails with two hands. I no longer peg out after walking 1000 feet. Im no longer so weak and tired I need to lie down at  2 in the afternoon and dose in a brain fog til 7pm. I have energy, Im stronger and can last much much longer doing all  sorts of physical activities,Of course exercise is important too as you need to feed those nerves and get them to grow by using them. Rest =atrophy.And being the right weight  is important too, once  you can start moving around agin make it a priority.

Allt these things {except MetaNX} are over the counter, not expensive and have no side effects, so they are worth trying. Everyone is different and there are no guanartees but wow, I just have to say Im starting to bike again and alhtough its not 100% its fantastic compared to the way I felt 2 months ago.

Good luck every body!!!

PS MetaNX is not a medication, its a "medical food product" that insurance companies are not thrilled to pay for. You need a prescription from your doc.But 2 months supply was like 175 dollars. I personally think it was worth it.

Of course making sure you eat foods high in thiamine and the B vitamins.