Fibromyalgia Medication and treatment

Hi Sundance! Nice to meet you! And so glad that you were finally connected with a rheumatologist that seems to be addressing some of your health issues. Its so unfortunate that the other 10 docs didn't. okay, I know this joke is bad for a support group, but I've said this many times "what do you call a Dr who gets all C's in medical school? Doctor. What do you call a doctor who gets all A's in medical school? Doctor. I have empathy for what you went through, the time, energy, money, explaining yourself over and over to each doctor and from my own experience beginning to feel a bit crazy (at one time fibro fog was putting it mildly!)

I've also taken Lyrica and Neurotin (Gabepentin). And both of those just don't work well for me. They basically have the same pharmakinetics (this is how a dr described it to me), except the Lyrica metabolizes differently in your body. I feel pretty bad every day, but when I get a flare up, it feels like my entire body is on fire from the inside out. And when I take the lyrica, etc. I wake up every day with horrible neuropathy in my hands and arms. Sometimes down my entire right leg from my hip to my toes.

I do feel that they will figure out what exactly fibromyalgia is; they just need more studies. For me, I have injections throughout my spine for the pain and I had an epidural in 2008 when they thought I might have Meningitis. And I have severe iron in my brain, which would be indicative of an early onset neurodegnerative disease. However I also found out that when I saw a Hematologist I tested positive for a rare hemachromatosis gene from both parents. And interestingly enough these injections I've gotten over the years for the horrible back pain can cause some Rare Autoimmune Disorder (I read about that on NORD). So, I guess my rather long answer is keep on keeping on! Maybe check on the NORD website and something may jog your memory about a time in your life or maybe they just haven't figured it out yet. I hope you have a great weekend! Sending positive thoughts your way! And to all!!

Butterfly how true with what you say! You throw Lyme Disease, Fibromyalgia, and Chronic fatigue and maybe Lupus all under one blanket and to me shows treating these diseases was not taught in Med School!
I've given up trying to explain them to others who have not experienced them. Just as I don't talk about what drugs I take to try and have somewhat of a normal life!
In my case I know I am older and with that comes certain things I can't do anymore! But with the above diseases it takes it a step further.
But in saying all of that, I AM STILL A BELIVER THAT EVERYTHING HAPPENS FOR A REASON! Accept what you are given and go with the flow.
One Great thing that has come from all of this is this site, Mayo Connect! I have met so many WONDERFUL people who have given guidance and support to myself and others!
Thanks,
Sundance(RB)

Hello Sundance ,
Reading your post took me a long way back where I’ve come from. This thing hit me like a ton of bricks, no one knew anything about this and was very misdiagnosed for many years. Let me begin to tell you what I experienced at-least 20 years ago.
I went through many many doctors, all said the same thing “it was in my mind” , my elbows my inner arms my inner thighs neck , i hurt so bad I just wanted to crawl somewhere and just die, no-one understood and no one could help me.
This one day I was at the doctors getting a B-12 short which was the only thing I could take at the time because I was allergic to norcarttics , so pain meds was out the the question for me. I went temporarily blind, totally bed ridden and could not stand up enough to take myself yo the bathroom . Finally !! I was diagnosed with Fibromyalgia. Which again no one knew anything about .
On my way home, I heard a doctor on the radio speaking on all the different auto immune issues people are suffering with., my attention was totally focused on him.
He said something that never my mine, it all starts in the colon, I was shocked at that time , I never thought about toxics chemical or food etc could affect our muscles or tissues., I just did not worry about that as a person growing up.
I found this doctor and my best friend took me and the first thing was said, your eyes tell me everything that is wrong with you., wow!!! I had a list in my purse and my friend checked the list as he talked.
He put me on a “an incurable plan. Which was cleanseing
And herbs .
I got worse , oh my I said , I'm going to die, I called him on the weekend as an emergency to tell him that, he laughed and said “no” you’re live....it’s all that bad stuff coming out of you, just wait and see, you’re be better in two weeks! I almost hated that doctor. But something on the inside just kept telling me “this is right” you can do this. He was a “holistic” doctor which if had never believed in, after two or three week I start seeing the light!! I thank my god for him, I truly believe that day that moment was meant for me. I followed every step and broke no rules. It took about six months before I could get out of bed and to the bathroom on my own , and it continued to get better . It’s been hard through out the years, but I always say finding this holistic doctor and changing my diet and lots of pampering myself had healed me in do many ways. If I slip for a day, especially the sugar, reminds me how important it is to stay discipline .
I hope this has helped you or someone to look further , do your research, learn your body, and always love life!!

Sanai, So Sorry to hear what you have gone through. I know what is is like as do millions of othere.
I WOULD LIKE TO ADD SOMETHING FOR EVERYONE WHO READS THIS THREAD!
LAST NIGHT WHILE DOING ERRANDS I WAS LISTENING TO SIRIUS RADIO. MIGHT HAVE BEEN ONE OF THE NEW STATIONS. ANYWAY THEY HAD AN ADD ON FOR FIBROMYALIA SUFFERERS.
IT SAID THERE WAS NOW A TEST FOR IT. THEY GAVE THE SITE http://www.FMTEST.com. I HAD NEVER HEARD IT BEFORE. ANYWAY I BREIFLY SCANNED THROUGH IT LAST NIGHT. I DON'T KNOW IF IT IS A COMON OR ACTULLY TRUE! I DIDN'T COMPLETE THE SURVEY BECAUSE IT ASKED FOR SOME PERSONAL INFO LIKE MY POLICY # FOR MY INSURANCE.
JOHN AND SOME OF THE REST OF YOU, HAVE YOU HEARD OF THIS BEFORE. THEY ALSO HAVE INFO ABOUT GETTING MALE VOLUNTEERS FOR A VACINE FOR A MENS TRAIL.
I HAVE TO BE OUT THIS AM SO I DON'T HAVE TIME TO RESEARCH PLUS A BUSY BUSINESS DAY OR I WOULD RESEARCH!
(AS YOU CAN SEE I DID THIS ALL IN CAPS BECAUSE OF THE IMPORTANCE OF IT.)
IF SOMEONE COULD DIG INTO IT THAT WOULD BE GREAT!
AGAIN LET US ALL KNOW WHAT YOU FIND!
THANKS,
SUNDANCE (RB)

About 3 or 4 years ago when reading a fibromyalgia journal, I saw that there was research into finding a blood test for fibromyalgia at the University of Illinois (Champaign). It said that the test would be very expensive. I have not found any more on this topic. Did anyone else hear about this?

I have tried it all - the medications, the massages, the physical therapy, surgeries, the entire gambit. Over a million dollars spent on my body between chronic pain management, surgeries, alternative therapies (lots and lots of massages, acupuncture, etc.).

Gapapentin and psychotropics are the worst things I ever took. Some helped, most made me tired and stupid. But this is my body - not everyone is me, so they might help you. I have had the rheumatologist put me on medications that make me so sick that I couldn’t move. I agree with the person who posted on here that it is all in the gut. Cleaning up one’s diet, getting rid of inflammation causing foods including sugar, and eating fresh, healthy foods is key. I recently went to a naturopath who is treating me for Lyme, which I was finally diagnosed with after being told it looked like I had it by my orthopedic surgeon 25 years ago. Getting a Lyme diagnosis is difficult unless u walk into the doctor’s office with a bullseyes rash with a tick hanging in the middle of it. Pardon my pessimism, but like I said, I have been through it. When I first started Lyme treatment I thought I was going to die. But now I’m over the initial die off and I have energy for the first time in years. I don’t know if it will last because I also have Behçet’s Disease (a rare vasculitis) - I don’t know if it will ultimately cure me - but I’m going to keep working with my naturopath and PCP. Also, CNN posted an article yesterday where the pentagon has requested records from the military, saying they found information that the US military weaponized ticks to carry diseases between 1950 and 1977 in New York. Interesting that is where the majority of Lyme cases are. We are seeing them in Oregon now. I will be watching this closely since this is such a hot spot topic for the cdc.

Also, I have seen the ads for the new test for fibromyalgia. I always question new things until they are tested tried and true because there is a lot of money to be made for the companies who have a “94% totally accurate test”. Are there false positives, negatives, do they know? I’m taking a wait and see for that test before I take it. I was diagnosed with fibromyalgia in 1992, when it was all in my head, they said. That’s when I started five years of physical therapy, massage, Rolfing and other treatments five times a week, which kept me moving, until I couldn’t afford them and all the pain came back.

The horrible thing is that the only drug that has ever really helped has been opioids. And they are being criminalized now, as we all know.

I have been struggling with these issues for so long - I get hope, I get worse, there’s a new drug, there’s this and that - but I personally find diet, exercise, and non-western medicine help the most. When I can afford them! Pessimism is me as so many of these treatments have ruined my life.

@sundance6 I have heard they link Fibromyalgia and Lyme disease noe and there is a website that says it is coming from out gut its called now leaky gut . A Dr. in Palm Springs who use to be a cardiosurgeon on pediactric patient doesn't practice anymore and has developed a medicine that has several herbs in it. On the website fedupwithfatigue.com they talk about this blood test . I was diagnosed by trigger points that was all the rheumatologis new back in the 90,s I have started taking some of the herbs mentioned by the Dr. but of course the fibro malic Ive been on for years does help relieve the pain.

There is a test called the FM/a Test , the websight is myfmtest.com some insurances cover it now .I am going to talk to my primary care physician about it

Google LDN with fibromyalgia and Lyme disease

My naturopath wants to put me on LDN next.