I have suffered from extreme muscle pain for 2 years, a herniated disc and so many other symptoms.

Hi Valerie! I was misdianosed with fibromyalgia. I have just found out that i have a carnitine deficiency which is something you can check for with a blood test! Now i have started taking 990 mg per day of carnitine "levocarnatine 340mg" and i am starting to feel better! It is so amazing to see a change after 2 years. A normal liver and kidneys profuce carnitine which break down fats on your muscles and turn them into energy. It explains my muscle pain and fatigue, etc!

Hi Megan,

Can I ask if you only had symptoms for 2years? Only because the info I can find on carnitine deficiency says symptoms start from infancy. My probs started about 6yrs ago and I was fairly healthy before that.

Also what were ur symptoms.

Thanks

Yes definately! Everythig i have found has also been since infancy but i have only had symptons for 2 years and my rheumatologist said that in can actually happen anytime in life! I have a herniated L4-L5, chronic muscle pain, joint pain, bone pain... Sometimes it has been hard to even tell where the pain is coming from. Diarrhea, headaches, stomache pain, chest pain and chronic fatigue that is so awful that i can not explain, just the most discomfort possible where all you can do is move around every second! I have been in tears from pain so many times! I havr survived on oxycodone for those 2 years and definately could not live without it. I am a mother so i have limited myself to a half oxy each night so i dont become addicted to it. When my daughter is gone i do take more because it helps so much. I have only been on the carnitine for 5 days but i feel better so i tried not to take an oxy last night. I woke up at 5 am after 5 hours of sleep and couldnt get back. I may have to go to a quarter pill to ween myself off of that eventually.

Thanks Megan, I'm really pleased they have found the hidden answer for you. Great to hear.

I also have a 6yr old son so I don't take any meds except cocodomal and diazepam when desperate. I have tried the anticonvulsants etc but when they started affecting my thinking I just didn't want to carry on as I didn't not want to be myself for my son and partners sake!! Did you get muscle tightness? A lot of days my muscles just seize up, I crack and click and make very odd sounds not to mention the acid feeling, like bones are leaking acid into surrounding areas, my fatigue used to be horrendous but it's not as bad these days, comes in waves. I get a fair bit of numbness and tingling, I don't know if I have 2 separate things or 1 thing but I also get a lot of facial pain and nerve pain. Do the supplements help with pain or just fatigue? Did the Dr prescribe them or do you get them from health food shops?

Thanks for the info.

Hi Megan :

That is Awesome ...& such a blessing. How did ur Dr decide to look for that?? So interesting. Did Dr suggestion those things to take or a nutritionist? Please tell...

Can't wait to hear about it...

Valerie826

I just visited this young rheumatologist because I couldn't get into mine. She is in the same office as him. She said she had taken a course in Michigan about carnitine and thought she'd give it a try. I was only woth her for about a 5 minute appt!