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Living With Fibromyalgia - Online Support Group

No help from fibro “expert”

#1

I’ve been seeing a doc who is “supposed” to be the leading fribro expert in the area. I started on Lyrica & Melaxicam. I had severe depression with the Lyrica & the pain med wasn’t cutting it so switched to Cymbalta & Diclophenac. The pain is still not managed at all—some days I can barely walk. When I talked to my doctor about it, he said this combo works for most people so I should stay on it. It’s been over 2 years now on it & no improvement.

I’m incredibly frustrated and depressed at the lack of progress or empathy from my doctor. To be honest, I think he won’t try anything else because he sees my weight as the problem.

Years ago, before moving to my current residence, I had a doctor who put me on Vioxx. Of course, that ended when it was pulled from the market. It was the only thing I’ve ever tried that really worked for me. I was able to walk & exercise regularly with few side effects.

Is there anything similar to Vioxx? Any suggestions for dealing with this doctor? It takes 9-12 months to get in to see decent doctors in the area so I’d rather not start over.

#2

I don’t know about the medications, but I would say it is time to go to a new doctor. I found out when I was first diagnosed that just because a doctor says they know fibro and in my case also autoimmune; they may not. If you know more than the doc time to try a new doc.

#3

I use Savella 100mg 2x a day and it’s been a dramatic change for me.

#4

Before I respond please consider the fact that we all handle our fibromyalgia differently and that varies according to so many different factors and this is simply my way of handling things. I tried the medication road only resulting in the doctors saying I was seriously depressed and sent me to a psychiatrist who put me on more horrible medications and sent me to a psychologist. Those people are nuttier than I am, so I woke up, threw my medications away, and now I carry only Tramadol, take 100mg only when I am unable to function (which isn’t often), and only once. I am a 73 year old man and have had this fibromyalgia and severe osteoarthritis for over 20 years. When I stepped out of the truck on my last day of work fifteen years ago I was unable to move; my body was frozen in place and two fellows had to drag me into the shop. From there on I found that medications only create more problems for me. So I listened to the wisdom of the wise ones. I apply mindfulness and presence all the time and spend time with my creator. I eat a gluten free diet and not the gluten free processed foods (too much sugar and chemicals. I eat the foods that mother nature gives us,) I take long walks in the woods with my wife every other day and carry a camera, looking for everything and anything to photograph (we take many breaks. One day we were in the woods for four hours and walked only one mile.) Art is my primary hobby. Pain and tiredness are my constant companions but life is for the living so I keep busy but also have my quiet times because they are needed for regeneration before the next thing. I also have noticed that a good nights sleep makes my days better. If I get up two to three times a night to use the bathroom in 6 hours then that is a good night. During the day I nap for an hour. One night, at bed time, I will take one benadryl tablet. Another night I will take two tylenol arthritis. Another night I take one ativan. Another night I will try to meditate to sleep and take the medicine only when the meditation doesn’t work. I do an hour of stretching exercises daily. This is what works for me. Yes, I have memory problems and foot and leg pain so bad sometimes my wife thinks she might not get me out of the forest, (but I carry my Tramadol and a small cushion to sit on until the medication kicks in). These are some of the things that work for me. Just something to think about. Find a way to live that works for you. And another thing. I stopped all physical labor. It’s feels funny to ask someone to do something for me but that is necessary and my pride must be swallowed. I talk too much so good day and God Bless.

#5

I take Cymbalta. It only helps with the emotions. Not the pain. Doctors haven’t figured out the pain part of Fibromyalgia.

#6

iwa0331itmc, thank you so much! I have been flaring since Thanksgiving. Now with weather warming and a new doctor who listens, light at the end of a long tunnel. I appreciate your thoughts as I try to work out some sort of routine/system/plan. Your thoughts will go into my folder of inspiration. :turtle:

#7

Fibromyalgia by itself is extremely painful. As you get older and arthritic, you have double trouble. Having fibromyalgia since my 20’s and now I am in my 60’s you can imagine how long I have been searching for pain relief and knowledgeable doctors. The answer is, there is no answer or magical drug that can be taken safely to relieve fibromyalgia pain. Narcotics usually work the best, but long term use is not healthy. Anything that does relieve pain is usually very strong medicine with bad side effects. I just came off of prednisone which I was on for 9 years. Refused to take them anymore and came off of them. My muscles feel better, but my joints were very painful. I have to be careful not to do too much to cause myself a lot of pain, so I pace myself. I am now down to 1 Celelbex 50 mg during the day then I take 15mg of medical marijuana at night to relax muscle, tendons and joints and to help with severe insomnia. The marijuana has helped my joints feel so much better. All I can say is you have to be your own advocate if you want to feel better. Right now the doctors don’t have the answers, they can only offer drugs that they feel might help since fibromyalgia has such a vast pain difference from one person to another. Some day in the future there will be answers and those answers are going to be what we tell the doctors on what works and what doesn’t, so don’t give up and keep on searching for doctors who will listen, because they will find the cure.

#9

Celebrex maybe? Same drug category