Fibromyalgia Community

This would be a good one for Dr. P. Maybe he'll pipe in with a response. And Thanks for posting this Pixe5.

Interesting. And it does make sense that the reason we are not like other pain sufferers in that fibro patients receptors don't let the meds bind and help us. Fibro messes us up every which a way.

As interesting as this was I shuttered when I saw this research was looking for answers in the brain. That takes me back years and years to all the " It's all in your head" statements. Ugrr Doctors were so sure I was making it up that I had to go to a psychiatrist for over a year when 1ST DX'd with fibro because the thinking was it was all in my head. I am not happy when I see any thinking on fibro might go back to that again. Ugh.

Thanks again for posting the link.. Dr. P what do you think about this new research study. I say: " Not enough ladies in the study. They didn't have a wide age group.. young to old and they didn't study it long enough." Just saying.

Soft hugs going out to you.

Linda R

Thanks for the link, this may help people who think they are going crazy???? Those who don't understand why they can't feel better.

I remember neurology in the beginning telling me, short of anesthesia Nan I can't get it right*. I was also looking for painfree.........I was still in the ICU and trying to lift patients and do all I did. The toolbox hadn't been invented yet.

So many years of honing all those tools.

Thanks so much for this, for those to come, the link should be put in the toolbox? I htink a newbie need to read this, so expectations are lowered in that arm of medicine. What do you think? Take care, Nancy B

I am newly dignosed in the last few weeks and that was an article i'd found and read on my own as well as some other info from that same site. I found it worried me, gave me less hope that this pain cant be curred. Again i'm new to fm but have been living with pains for almost 20ys and i'm only 32. I've been told i'm a woose to toughen up so many times i cant count them. and have a dr tell me no there is a reason you feel this pain and tirednness was a releif and stress. I wanted a magic pill to make it better once we knew what it was. Sadly i've come to learn pain meds are not really the way to resolve this issue. now that i re read this article a few weeks and a lot or research later it does make sense and help me understand why meds may not work so good. Thanks for sharing this with us.

Keep trying different things, you will find the combo that best helps you.

Always look for the number of participants in any study. This one had 17 with FMS and 17 without FMS, sorry but a study of a total of 34 patients is not enough for anything but further study. It is not enough to say anything is true or not true about FMS.

I like the site at http://www.myalgia.com , it has lots of interesting articles by professionals who know about FMS. Dr. Bennett, MD, a rheumatologist, says that he has found a subset of folks with FMS do respond to opioid therapy, if nothing else works, give it a try.

I don't believe that our FMS symptoms can be "cured", but they can certainly be managed so we have decent lives. I have had FMS for 18-20 years now, and I have found what works for me, and continue to use opioids along with other treatment modalities. I have been on basically the same treatment plan for about 15 years, with occasional tweaking with flares. I don't take large doses of any drugs, but I don't expect to be pain free either. There is no magic pill yet, maybe some day.

I really believe that by using several different tools to manage my FMS symptoms, my life is good.

Take care, Annette

This was a very small study, only 34 participants. It might lead to more interesting studies down the road, but it is too small a sampling to be statistically relevant.

Thanks for posting the link.

Take care, Annette

Hi Linda R,

This article was actually published in September of 2007 so it's not recent info. Our understanding of fibro continues to evolve because of reputable publications like this one. Our pain processing systems, including our central abilities to block pain, are impaired because of fibro. Some respond to opioids but a number of us don't seem to benefit from this class of drugs. Perhaps there is a receptor problem (genetics?) or a desensitization process has occurred or a combination of factors.

We all hope for additional enlightenment and solutions soon!

Dr. P

I have a question for you. Before the onset of my FB, I had an incredibly high pain tolerance for 45 years. I then had a two w/C accidents (both not my fault) then got Histoplasmosis and biopsy caused my lung to collapse three times with tubing issues. Then, like a giant oak tree fell on me, FB hit. How does this study relate to me?

Hi Annette,

I am recently diagnosed with FM, have had pain for years, but after many, many months of extreme stress, body went CRAZY. Went to my rheumatologist, (for follow uw. i see her for Lupus), my blood count had gone up 15 points (in 3 months). I could barely let her examine me, i was in so much pain. She finally got through the exam and delclared "you are having a Fibromyalgia Attack". Prescribed med, that I works on your nervess "to prevent further pain", which I could not take.

Anyway, after talking to a new friend, also has FM, told me the first attack was the worst. Only way she could get swelling to go down was with acupuncture. I have been using ginger, cilantro, relafin, vicodin, ice, ice, ice, elavation of legs, hips, anything that i can. And, this really is helping, slowly, getting better. Even had lumps under my eyes.

Is is true "first attack the worst"? Going to check out the article you recommend. Thanks for reading my rambling. Looking forward to your response and any recommendations. This was so scary - but I am so glad i did not take that medication. I think i would be worse if i would have.

Thanks.

Dear "Survive..."
I have had FM/CMPS for over ten years now. Along with Arthritis, disc degeneration, etc... The only medications that have worked for me are Pain meds. I have tried EVERY medication out there for Fibro, pain, etc...and the only thing that has ever worked for me, with the least amount of side effects, is opioid pain meds. Each person is different. Just because an article says pain meds don't work, doesn't mean they don't work for anyone. It is by trial and error that we find what works best for us. Good luck to you.

The only relief I've been able to get is w/my pain meds! Unless of course I want to lay in an Epsom salt bath 24/7.... Unfortunately (fortunately actually!) I have a full time job, 2 kids and a household to take care of & I can't and don't want to just suffer! I've tried everything; PT 3 times a week for nearly a year strait, TENS, Swim in a heated pool 3xs a week, Ultrasound treatments, massages, Acupuncture, Injections (Steroids and lidoderm), every anti depressant known to man, Lyrica (HORRIBLE CRAP!), Savella, Anti inflammatorys (Voltern gel actually works great on my hands - But lovely insurance won't cover it now !)....
I do recommend upper cervical chiropractor thou! I used to have a headache 24/7 now I NEVER get them! *If your in Detroit, MI area I highly recommend Dr. Scolari in Shelby Township!
Anyway that's my 2 cents!

I think the link should be put somewhere for safe-keeping. I had a terrible time getting help for my FMS pain.....I kept ending up seeing doctors who thought I was one of those despicable drug abusers! Plus I have a naturally high (lifelong) tolerance for opiates, PLUS I have needed to take them for a lot of yrs. so I am opoid tolerant from that as well. And now I see where it is suspected that we don't make good use of opiates when we do take them?

I tried a lot of different meds trying to relive my pain before taking oxycodone.....everything from Tylenol to morphine.....and I didn't get much relief, if any, from any of them until I tried the oxycodone. What a difference! The oxycodone keeps my normal everyday pain level (as opposed to a bad flare up) down around a 2......without the med it's steady 7-8. I can manage just fine with a 2! AND there seems to be a little extra bonus for me with the oxycodone, which I didn't feel with the other meds, and that's that it boosts my energy level! Is it maybe possible that the increased energy is simply the result of having my pain level down?

One other comment I want to make. My mouth/teeth had been giving me a lot of grief.....I finally got them all pulled and dentures earlier this year, but in the meantime I was in a lot of pain from my mouth because the oxycodone did not do a thing for the mouth pain! There were 2 or 3 times I had to stop the oxycodone and take codiene for a couple of days to get through it. What's up with that? My dentist didn't know. Neither did the oral surgeon apparently.....he sent me home after pulling all my teeth with a small pain med script that ended up being a low dose oxycodone....lol!

Take care all, and keep on putting one foot in front of the other.....there ARE ways to fight back and manage this disease, we just have to find out what they are. As is often repeated here....we are all different so it's up to US to find what works.

The teeth pain might be the same as mine. I am constantly clenching my teeth and sometimes when I wake up I've held my teeth so tightly together that I have to eat soft foods for that day and sometimes the next. I got a mouthgard to prevent it, but sometimes I fall asleep and forget to put it in. I also found out that the lines inside my mouth (inside my cheeks) are from clenching--I thought it was the lousy water in our town.
My doc won't give me oxy and says it's too strong for me. Taking vicodin now and my level is probably a 6-7 not in a flareup. I have taken everything under the sun both eastern, western and homeopathic, all the treatments, blah blah blah. It really sucks! Trying to make the best of my life and enjoy the good parts of a day and my family. Waiting for a cure instead of bandaids.

Hi, I'm a 23 yr. Fibro sufferer, so there's nothing out there that I haven't tried. Currently, I have a morphine pain pump implanted into my abdoman, with a catheter routed around to my spinal cord (internally), where the meds go straight.This hasn't taken away all pain, but has taken away the rough edge of pains. You mentioned clenching...When my Fibro started, so did the clenching...which added the worse of pain in my head, neck and face. After crying and suffering with it, and with the wrong docs, I was sent to the best TMJ Dr. in Houston, and after 8 mos. my TMJ was well on it's way out ! I wouldn't be living it had had that AND Fibro to deal with. Tell me more about you and your journey please. Maybe I can help or support.

I don't agree. I do take pain meds and they do help me. I've gone without when I've been late refilling. And, I was in much worse pain about a 8. With my pain meds I can be at a 5 or 6 Big difference. I've been diagnosed since 2006. And, I've tried everything. Acupuncture, chiropractic, therapy. Nothing works. I will not take Lyica because I don't like the side effects. I'm on 2 anti-depressents, klonapin for my panic attacks, trazadone for sleep. But I still only sleep maybe 2-3 hrs at a time. And, for my pain I'm on a duragesic patch. Which has helped me alot. Trust me I've tried all other non narcotic pain relievers with no luck. My fibro is 16 out of 18 points. So it is severe.