Living with Fibromyalgia: Introduce yourself & meet others

How long did you need to concil with the Dr before he let you try them ?
I deal with alot of nerve pain in my face, Fibro pain, myositis, cervical, lower back, & now scoliosis, awful fatigue. Do you feel it would help relieve some of that pain?

My name is Gloria , I am 75 and have had Fibro for 28 years, I also have numerous other health issues eg heart and lung serious problems. I tried everything to ease the pain of fibro and the extreme tiredness that goes with it. My salvation was hydrotherapy, the walking and exercising in warm water is amazing, take it steady at first, do not overdo it. Initially I was so very tired after doing it but as time went by my pain eased and now I function well enough to cope with my other problems, ha I could be called a walking medical question mark! Do try hydro

Hello all, I guess I posted on the wrong page before. I was diagnosed in 1999 after giving birth to a set of multiples. I have been on all type and manner of medication. I've been bounced around from specialist to specialist. I have markers for Rheumatoid Arthritis, MS, and Lupus. I started having those weird auras and the accompanying migraines. I was a HS and college athlete. I know pain. I had a problematic pregnancy and after care, I know pain. This, is another level and kind of pain. Every follicle of hair has pain. Every flake of skin hurts. However, I thank G-d each and every morning for my blessings. No matter what, I am so very glad to be alive.

I’m 29 years old and was recently diagnosed with Fibromyalgia after 4 months of unbearable pain. Spent thousands of dollars on diagnostics until they came to this diagnosis. My pain is in my abdomen, back, shoulders, neck and chest. I also have horrible fatigue. I’m struggling to find a doctor who is willing to help me manage my condition. I’ve been suffering on a daily basis. I only have brief periods of pain free times, but it doesn’t last. I’m not sure how I’m going to manage this. It’s put me in so much debt and has messed up everything in my life. Lyrica and Cymbalta help a little bit, but don’t stop the fatigue and I still have unbearable pain that only opiates help. I’m doing my best to deal with this but it all seems so unfair. I have to act like I’m okay all the time when most of the time, I’m not.

I'm sorry that you've gone through all of that. I understand completely.

How do you manage it?

Because I was taking care of quadruplet infants, whatever medication they gave me I just took. I went to whatever specialist and did whatever I they said. People simply judged me and said you can't be in pain and have take care of your kids. I'm not wealthy. I have no nanny, or help. I must do this pain be damned. Women are built differently than men. I'm 65 and tired of being in pain. I have had enough. Lyrica, all of medications that you have listed I have tried over 27 years. My feet, buzz, tingle, and throb. My joints burn and ache. Here's the thing though for over 30 years I led a very, very athletic life. I gave birth to 4 of the most amazing people that other people tell me are respectful and gracious. They are kind, polite and good people and worthy of knowing. I don't regret anything I have ever done. To answer your question, Medical Marijuana as prescribed by my Neurologist.

@christinedm96 What you are experiencing sound just awful! I’m going to give you some links to groups that should be able to help.
https://autoimmune.org/resource-center/finding-a-physician/. Autoimmune Association
https://https://rarediseases.info.nih.gov/. GARD genetic and rare diseases
https://rarediseases.org/. NORD. National organization for rare diseases
These organizations have information on autoimmune diseases and the doctors who can help.
Please contact these groups and then let the group know how you did!

Hi- I’m 51 and I was diagnosed with Fibromyalgia about 32 years ago. Back then it wasn’t something most doctors had even heard of. I’ve tried lots of supplements and different protocols, all with some degree of success, but lately it’s become quite challenging. I know it isn’t a progressive disease, but I think my ability to cope with the pain and other symptoms along with the onset of menopause and a side order of long covid has made it so much harder to live with. I feel like every day is a huge battle. I just found the app More Good Days and I’m hoping to find something that will help there. The only thing I take that is related to fibromyalgia is Zoloft. I don’t react well to Lyrica or gabapentin. I’m not sure if I should see a rheumatologist or if there is a different type of doctor who can help. My GP is lovely, but we may have reached the end of her knowledge. If anyone has suggestions for questions to ask my doctor or requests for testing or treatments I should discuss with her, I’m all ears.

I am trying low-dose Naltrexone and I think it's helping a little. It's hard to tell with Fibro though, because the symptoms come and go like they do, with flares etc. The good thing is no side effects, although some people have sleep issues, and it doesn't help everyone. If you have questions about it, you can find lots of into on-line. It pills must come from a compounding pharmacy because the that aren't sold in the low doses required.