Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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deleted_user 04/14/2007

Hi everyone. Its been a while since ive been here. Im to the point that it literally hurts my hands, neck and shoulders to even type. I have been taking ms contin, but have been on it for about 8 months, after im on a med. for so long my body becomes imnune to it and it quits working. My rheumo switched me from ms contin(30 mg 12 hr release) to oxycontin (20 mg 12 hr release) the oxy is not working. This is the worst pain ive been in since starting narcotics. Before the ms contin i was on the duragesic patch but it wouldnt stay stuck to my skin for more than a day. I have also taken darvocet and vicodin of which doesnt work for me. Those r the narcotics ive been on, the other meds ive taken over the last few years for me that also has not worked is
mirapax
flexeril
ultram
cymbalta
lyrica
soma
trazadone
neurontin
xanax(is working, 4 about an hour after i take it relaxes me)

i am becoming extremely frustrated with my rheumo, at my last visit he said there isnt much else he can do for me, i know hes got a few patients worse than me, i do work, have no choice but its part time and not stressful. My rheumo is very skeptical of giving me anything really strong, he would not up my ms contin over 30 mg, and wont give me anything stronger than 500 mg vicodin. Ive never had a problem with addiction, if the med doesnt work i do not continue taking it. I have cut out most all bad foods, i was walking and doing a few light exercises but im in so much pain im doing nothing, im not even cooking dinner. Thank god for hubby. I need some info and some advice on meds that works for chronic pain to take with to my apt. on monday. If he tells me there is nothing more he can do for me there are no other rheumo's on our insurance that i can see, ive already seen the pain managment doc on our plan but hes more of the surgical exercise therapy doc, i saw him for 2 years, and after 5 injections im worse now that i was before i saw him. My reg family doc cant do anything else for me as hes not familiar with fibro to treat me. I just know that i cannot continue to function daily in this much pain. Ive see my chiro once a month, massage and accupuncture makes my pain worse. I tried yoga but dont like it. In the last few weeks i wake up a dozen or so times a night with my muscles and joints tense and so tight i just wanna scream. If its below zero and you go outside and shrug your shoulders together, thats how my entire body is when i wake up during the night. I also have lost all strength in my arms and legs over the last 6 months which is a sign of fibro progression according to my rheumo.
Anyone got any good info i can take to my apt. monday about any narcotics or meds that will help me to be able to at least function during the day? I at least want to be able to function during the day, im forcing myself to get out of bed, i push myself to get ready for work, and i have to push myself thru work from being in such pain.
Sorry this is so long, if uve made it this far i thank u.

deleted_user 04/14/2007

If you are using duragesic (and not the generic fentanyl) the drug maker will supply cover patches at no cost.I use fentanyl and when I have trouble with them coming off I apply water-proof first aid tape around the patch. Hope this helps you.K

deleted_user 04/14/2007

I havent been on the duragesic patch for a year, while i was on it i used the tegaderm patches over the pain patch, still wouldnt stick, if and when id get it to stick the patch only worked for about the first 24 hours. that is y he switched me to the ms contin.
i will not go back to the patch.

deleted_user 04/14/2007

I just wanted to let you know what I take for a combo of meds. This is what is working great for me. The key to my success is aqua therapy. You do light upper and lower body exercises in a pool of 94 degrees. I started at 15 min each session and am now at 45 min each session twice a week. It did hurt for about 3 or 4 sessions, but after that I gradually starting feeling great, as great as you can feel with fibro. I am currently being weaned off of celexa and being put on wellbrutin. The list of meds I currently take are:
Morning:

Celexa, naproxen, B12, glucosimine Chongrotin, magnesium, and I take a vicoden-750- for pain while I am at work.

Evening:
Naproxen, elavil, and equate brand sleep/pain pm before I go to bed.
I have had great sucess with these combos of meds. Everyones body is different but this is what is working for me. Good luck to you and take care! Huggs!!

deleted_user 05/08/2007

Instead of massage or acupuncture I recommend reflexology. Reflexologists work with the nerve endings in the feet and (depending on the practitioners) the hands and base of the neck. I've used reflexology for years. It does wonders. My body cannot (even now that I am not usually symptomatic) handle massage, because of the pressure on the pressure points. I feel worse the next day, because it is too intense for my body. Working with the nerve endings helps the whole body normalize, so its not just your feet or hands that feel better but the whole body, without the rebound reaction, since the pressure points were avoided.

I'm no good about recommending meds. No meds ever really worked for me. So I gave up on meds and handled my fibro naturally. I feel better than I ever thought was possible. Hope you are able to get relief. Try reflexology... it works.

starflower 05/08/2007

Dreamweever, I know you said you wouldn't got back to the patch, but I wanted others to know if they are having trouble getting it to stick try rubbing the skin with alcohol and letting it dry before applying. Have you ever tried Klonopin? It is often give for restless leg syndrome and can help with pain as well. Also, I have found in my area Richmond, VA that rheumatolgists (rheumy) that they don't like to prescribe pain meds. Your best bet for pain control is a pain clinic, pain doctor (anesthesiologist,) or a physiatrist (not psychiatrist) otherwise known as a physical medicine specialist. These doctors are known to treat pain patients and are less likely to be hounded for writing narcotic prescriptions.

KPTOO 05/08/2007

How long did you take the Cymbalta? After taking it for about 5-6 months for depression, I noticed one day that my FM pain was reduced by about 90%. I recently had a drug interaction with a new med and the Cymbalta (stopped taking the new one immediately) and it reversed all of the good that the Cymbalta did. Waiting for it to be effective again. I take restoril at night and for me, there is no drug hangover in the morning. If you can get a good night's sleep and some rest, alot of time that will help too.
There is a pain care bill of rights website: http://www.fibrocop.org/paincarebillofrights.htm

If your Dr. is not treating you to your satisfaction, change Drs. I know it's difficult, I stayed with the same Dr for 15 years and she refused to give me anything stronger that anti-inflams (which we all know don't work for FM). My Dr now is working with me on dosages and different meds, and is willing to increase either based on my flairs and my pain level. So they are out there, just hard to find.

TexasSusan 05/22/2007

I have learned thru decades of trial and error with doctors that it takes too long to find "the" doctor that can and will take the time required to work out the combination of meds needed for a complex illness such as fibro and other autoimmune diseases along with chronic pain, chronic fatigue and depression from many origins. It has been a month since you posted so would you pls give us an update on your condition and your meds. After several surgeries, total body casts, two comas, I now utilize the duragesic patch or fentanyl patch 25 mg ev 48 hours. I also take Zandaflex which is an excellent muscle relaxant for fibro. My pain specialist does not treat fibro (as a primary illness) but treats chronic pain resulting from failed back surgeries and she noted from a seminar that it had been shown that zandaflex was working well for fibro so we tried it and it does help. Doseage is 2 pills 4 times a day. I also take elavil and effexor for depression and pain management and xanax to calm the anxiety and panic attacks. I can't take anti-inflammatories; and about 6 months ago I learned that M. D. Anderson, the famous cancer hospital in the Texas Medical Center was utilizing a natural herb called turmeric which is a spice used for canning pickles, etc., and derived from the root of ginger as an anti-inflammatory and also was using it for memory purposes for patients with alzheimers. It took awhile to get this into my system but I am deriving some benefit from the turmeric. I also do meditation and mind imaging for relaxation and inspirational encouragement. In order for me to finally have a "team" to care for me, I am fortunate enough to have a therapist that is willing to speak with any of my doctors that wish to call him. So any time I see a new doctor, I ask them to call my therapist. As a result, each doctor I have sends a report to my primary doctor and she writes the majority of my meds with the exception of the pain meds. Also, my pain doctor has prescribed a patch more me that I have not seen mentioned on any forum. It is a patch with lidocaine in it which has a numbing effect on the shoulders, neck and my feet. I have severe foot problems requiring use of a cane, walker, crutches, wheelchair, etc., depending on the pain for the day. So I literally tape my feet to be able to walk. I also use them on my back. I would not be able to walk without them. So that may be something you want to ask about. Sure can't hurt; and it sure can help. Let us know how you are. We have walked your path and we do care. (((texas size)))hugs, susan

deleted_user 05/23/2007

Hi, Texas Susan,

I threw out my back and went to my GP who put me on Celebrex and Skelatin. I woke up today and could barely walk so I got in with my pain doc and she gave me trigger point injections and the put lidocaine patches over my lower back. It really saved my day! I feel a lot better. You also mentioned Tumeric caps and I was told at the herbal store it is being used for fibro so I may give it a whirl. Thanks for the info.

DreamWeaver, My pain doctor told me that any pain med I took if taken every day would stop working. Luckily I have good days and so far the Vicodin still works when I take it. I know of one person that is on a pump. I think he goes to get it filled weekly. He was maxed out on meds and this was his last option. You may want to see if you have a clinic that does the pain pump. Best of luck, Keleee :)

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