Very Frustrated
 

I am very frustrated with the med trials.

Here is what I have tried so far:

Plaquenil (extreme personality changes)
Neurontin (depression - however is WAS working for the pain)
Lyrica (sped up my nervous system - made me feel horrible! and don't even get me started on the withdrawal)
Prednisone (extreme agitation)


My doc says I only have a few options left. Morphine sulfate (which I am afraid to become addicted to) or Methotrexate (afraid of the side effects).

Is he right? Are these really my only options? Or do I need to consider finding another doctor? He seems to be getting frustrated with me in that I am having problems with these meds. He doesn't seem to understand that these meds interfere with my Bipolar meds and cause mood changes.

Any ideas you guys might have for me?

are you able to look into alternative care?
non medication types?
like-
acupuncture, reflexology, homeopathy, hypnosis, INF stim, low level laser, etc.
possibly even a chiropractor that might specialize in chronic /myofascial pain

useful links to many of those topics on TOS forum- post #1
http://neurotalk.psychcentral.com/showthread.php?t=84

Hi Rainbow,

Each medical specialty has its own "tool kit," with variation between specialties. Beyond that, there can be considerable variation amongst physicians, even within specialties, in how they practice.

So, if you're uncomfortable with "what's left," according to your doc, perhaps you might consider networking in your community to find a health care provider who may provide further options.

While it appears that you've been treating in the conventional med camp thus far, I have to second jo55's question -- have you considered alternative approaches. There are many of us who successfully use CAM (complementary & alt med) for fibro, either exclusively, or in combo with traditional medicine.

For example, I am 53 yrs. old & have had my fibro dx for 3 yrs. I've never used any of the meds on your list, but I have successfully abandoned my walker & bed-bound days of pain, with CAM alone. My everyday pain is mild now, and my increasingly rare flares are minor in comparison to pre-CAM. There are others with similar stories.

A good resource to introduce you to the world of options in fibro treatment would be one of the books by Jacob Teitelbaum, MD: Pain Free 1 - 2- 3, and From Fatigued to Fantastic. These books cover the gamut of conventional meds, alternative approaches & treatments, as well as self-help options.

Teitelbaum is himself a former fibro sufferer. He specializes in fibro & chronic fatigue, and conducts research into effective treatments. Recently, he was appointed medical director of Fibro & Fatigue Centers, nationwide. His books have been extremely helpful to me, and above all, hope-restoring.

Best wishes.

Your doc is not right, there are plenty of other choices out there. Right now I am on mostly muscle relaxants and anti-depressants because of my depression and anxiety and I am doing okay. Don't know why he would mention Methotrexate because there is NO swelling with FM!!!!! I think that he may be as frustrated as you. Work together to find an answer. There are plenty of drug combos that work and those combos work different for each person.
Good luck!

Hi Rainbow,

I'm guessing from your med list that perhaps your doc thinks there may be an influence of autoimmune /collagen vascular / rheumatological problem in addition to just plain fibro? Plaquenil, Pred, Methotrexate & other cytotoxics are more commonly rxd for those things than they are for garden variety fibro.

Having said that, there are many of us who have "overlaps," more than one potential cause for our pain. I myself have been dxd with OA, RA, lupus, MCTD, Sjogren's and fibro. It can be hard to figure out which label is causing which portion of an everyday affliction.

Best wishes.

Painful burning feet
 

If this is an issue, as in Sjogren, here is an interesting link:

http://tealady-health.blog.co.uk/2006/09/

I found this as I was investigating Benfotiamine, a synthetic variant of vitamin B1 - which appears to be helpful for the small fiber neuropathy that occurs with diabetes.

wasabi

Oooh, goodness no, there are lots of meds and drugs and herbs and vitamins to try! I found a lot of pain reduction when I was taking Lamictil, which is officially an anti-epileptic I think, but has a very nice side effect/off-label use as a pain reliever for neuropathic pain. A bit along the Neurontin theory. It really kicked my FM pain down about 5 points! (naturally there were the usual neurological drug icky-but-tolerable side effects like dry mouth/eyes, wobbly hands). Now I'm taking Topamax instead, which is quite feeble compared to Lamictil's pain relieving strength, but it does dampens the pain down by a point or two (on the 10 point scale...).
Please don't give up. The fact that Neurontin was working for your pain is very encouraging, and I would think about trying a few more drugs in that class. There is a lot of new research showing that anti-epileptics are effective at tough pain like FM, so perhaps your doc could be persuaded to try 1 or 2.