Fibromyalgia Medication and treatment

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.

Jump to this post

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?

Jump to this post

Google LDN with fibromyalgia and Lyme disease

Jump to this post

Idramjet, How true you words on the drugs. Although my experience has only been a year, I have been treated with most of those drugs. As you also say Opiods have been criminalized. They over many a life without constant pain. I probably not be alive had it not been for them. Not because of the pain per say, but I didn't want to live like that anymore!
When I finally shook off what the dr. were saying about them, and then had a heart to heart with my Primary Care I came out of it! I am so Lucky to have someone like him. Although he would never diagnose me with Lyme, even when I came in with several papers showing all the symptoms I had were right there.
Probably if the truth be known the hospital organization he works for won't let them confirm various diseases. Same thing happened 6 years ago and had Adult Whooping Cough that took then three months to confirm. Then the NP did diagnose it she was run out of the organiztion for unknown reasons.
I will try and find some time first thing in the AM, Friday, and do some research on the test and the other suggestions everyon has had.
Thank You All for the Feedback!
Sundance (RB)

Jump to this post

Lioness, It's so sad that illness or lack of a fishing buddy we have to give up things we have enjoyed throughout our lives. My daughter says that " Fly fishing on a river is the closest her father gets to a religious experience." Partly true! This past year has been very hard not being out on a river. On a river is a time when I can get away from all the issues I think are Major and Overwhelming. Somehow when you come back to them they have either solved themselves or you find the answer to them right in front of you.
We all need to do that once in while! Go outside the box! That maybe part of my feeling better for the first time in a year! Week before this my daughter called and said that there were some car races in the little town in Northern New Mexico where she lives. My grandson said he wanted to go. (He and I went once last year.) She asked if I would come up and take him. Even though I was not feeling really well I said yes and made the three hour trip. (My grandsons father has very little to do with him.)
He and I ate diner and headed for the track, a mile away. He is 8 and it reminded me of the first time my dad took me to the races, I was also 8.
Anyway we laughed, joked, watched people and had a "BOYS NIGHT OUT" that he could not have had with my daughter. It was a two race weekend and I thought he woouldn't want to go the second night. I was wrong! He talked about the night before all day! So we went back and had more fun than the night before!
When I came back home I woke up Monday AM feeling like I hadn't felt in over a year!
Twenty years ago I beat Stage IV colon cancer. How? Because at the time my work took me from the Mexican boarder to the Canadian boarder. I was traveling in a RV, so home was where I parked every night. I was on a river all or part of 150+ days that year. It was the Best year bisiness wise I have ever had! I have been cancer free since then!
I guess my point in relating all of this on the board is to maybe help others to go out and do something out of the box that has limited us because of our disabilities or disease!
Our mind and spirit control so much of us and our life.
Thinking last night after I posted my plans, I got thinking. I was conditictory. Yes I have felt amazing, but it has only been a week! All of us with Fibromyalgia, Lyme, and Chronic Fatigue know that this can happen. You feel so good all of a suden you want to go out and do everything. So I changed my mind, Instead I am going to start the YMCA Silver Sneakers Yoga class this week. I need to build my self back up to where I am safe being on a river by myself!
Plenty of time left in the summer to go fishing! I want to be strong enough to enjoy myself and not make it an ordeal!
As I have done before I want to Thank Everyone who has read this and hopefully you can take away something that may help you.
I'm sure I am not alone when I say How Much of a Life Saver Mayo Connect has been to me!
It's a place where you can talk to people who will listen and not be judgemental and who understand what you are going through!
You all are such Great Spirits!
My Love, Thanks, and Blessings go out to all of you for your help and understanding!
Sundance (RB)

Jump to this post

Lioness, It's so sad that illness or lack of a fishing buddy we have to give up things we have enjoyed throughout our lives. My daughter says that " Fly fishing on a river is the closest her father gets to a religious experience." Partly true! This past year has been very hard not being out on a river. On a river is a time when I can get away from all the issues I think are Major and Overwhelming. Somehow when you come back to them they have either solved themselves or you find the answer to them right in front of you.
We all need to do that once in while! Go outside the box! That maybe part of my feeling better for the first time in a year! Week before this my daughter called and said that there were some car races in the little town in Northern New Mexico where she lives. My grandson said he wanted to go. (He and I went once last year.) She asked if I would come up and take him. Even though I was not feeling really well I said yes and made the three hour trip. (My grandsons father has very little to do with him.)
He and I ate diner and headed for the track, a mile away. He is 8 and it reminded me of the first time my dad took me to the races, I was also 8.
Anyway we laughed, joked, watched people and had a "BOYS NIGHT OUT" that he could not have had with my daughter. It was a two race weekend and I thought he woouldn't want to go the second night. I was wrong! He talked about the night before all day! So we went back and had more fun than the night before!
When I came back home I woke up Monday AM feeling like I hadn't felt in over a year!
Twenty years ago I beat Stage IV colon cancer. How? Because at the time my work took me from the Mexican boarder to the Canadian boarder. I was traveling in a RV, so home was where I parked every night. I was on a river all or part of 150+ days that year. It was the Best year bisiness wise I have ever had! I have been cancer free since then!
I guess my point in relating all of this on the board is to maybe help others to go out and do something out of the box that has limited us because of our disabilities or disease!
Our mind and spirit control so much of us and our life.
Thinking last night after I posted my plans, I got thinking. I was conditictory. Yes I have felt amazing, but it has only been a week! All of us with Fibromyalgia, Lyme, and Chronic Fatigue know that this can happen. You feel so good all of a suden you want to go out and do everything. So I changed my mind, Instead I am going to start the YMCA Silver Sneakers Yoga class this week. I need to build my self back up to where I am safe being on a river by myself!
Plenty of time left in the summer to go fishing! I want to be strong enough to enjoy myself and not make it an ordeal!
As I have done before I want to Thank Everyone who has read this and hopefully you can take away something that may help you.
I'm sure I am not alone when I say How Much of a Life Saver Mayo Connect has been to me!
It's a place where you can talk to people who will listen and not be judgemental and who understand what you are going through!
You all are such Great Spirits!
My Love, Thanks, and Blessings go out to all of you for your help and understanding!
Sundance (RB)

Jump to this post