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Old 05-31-2008, 01:11 PM   #1
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What do you take for your fibro?

This morning I saw a show for education credit for healthcare professionals on fibro and heard some interesting conclusions related to pain medications. These three doctors, 2 psychiatrists and a rheumatologist, all said that opiod pain meds do not get rid of the fibro pain and they don't recommend them, ever, for fibro. I have interstitial cystitis so I MUST take pain meds or my life is a living he**. But I have noticed that they don't help the nerve pain from the fibro.

Currently I am taking 200mg Lyrica 2x a day, and working up on my dose. I am on methadone 10mg 4x a day and I also take Soma and Zanaflex for muscle spasms and find that without these I am in a ball of pain. I also have MPS and conclude that this is why I can't live without the muscle relaxers. I am also doing regular acupuncture treatments that seem to be doing some good, at least short term.

What are your opinions on narcotic pain meds for fibro? Do they help you? What else do you take and what kind of relief do you get from the unrelenting pain and fatigue?
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I'm on SSDI with 3 kids, a great man, and several dogs and cats. I have a myriad of pain causing medical problems.

Last edited by sandy0224; 05-31-2008 at 01:14 PM.

 
Old 05-31-2008, 07:01 PM   #2
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Re: What do you take for your fibro?

Hello sandy
I was just recently diagnosed with fibromyalgia so I haven't taken alot of different medicines the only thing I'm taking is the Lyrica and it does a wonderful job for me but it does make me alittle drowsy but I'm fine if I get at around 9 hours sleep. I only have had some tighting of the chest and a little sore throat here and there but nothing I can't handle. I can put up with that but the pain I cannot. I'm not much help but I'm sure someone else on here that has had it for a long time can be more of help on answering your questions. Good luck I hope you find the answers your looking for.

 
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Old 06-01-2008, 04:04 AM   #3
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Re: What do you take for your fibro?

hi sandy...i take 10 mg percosett and 10 mg flexerill as needed for pain, along with heat. percosett is an opiate, and it does help take the edge off my pain..nothing really takes pain away. i have found that out during my 30 yrs of fibro, degenerative joint and spine disease.
these we prescribed by a rheumatologist that specializes in fibro.

take care...bevann

 
Old 06-01-2008, 07:36 AM   #4
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Re: What do you take for your fibro?

Hi Sandy. I'd be interested in hearing who made/developed/sponsored that show you saw. I read the other post too about the docs in the film that say opiates are not for FM. That makes me very afraid! Did they talk about any research that indicated that? How they tested opiates? Seriously - I wd like to know more about that film so I can talk about it w my doc.

Anyway, I'd be lost without my oxycontin extended release. I take 20 mg three times daily. At night I take 30 mg amytriptiline to help me sleep. I take a preventative med for migraine that has been very successful - haven't had a 'trip-to-emerg-vomiting-all-the-way' migraine for 4 years now. It is a calcium channel blocker for BP called Verapamil. I also have been on 20 mg Paxil per day for 10+ years for major panic attacks - it too is very successful. B6 and B12, and Vitamine D. So that's the best "mix" we've come up with to deal with the FM, sero-negative arthritis, possible lupus, for the time being is okayl Oh, and 3 coarses of oral Prednisone in emergency flares with high sed rate.

What has not been successful that I've tried? Tramadol; Lyrica (caused severe edema - so may have worked if I could work up to the high dose but was taken off it); Neurontin - generic name: Gabapentin, a relative of Lyrica (caused extreme dizziness at very low early dose); Naproxen/Aleve (caused bad stomach upset but worked for pain); Plaquenil for 1 year - no help plus some eye disturbances); steroid injections in joints (stopped working when the freezing wore off). Think that's it.
So with today's meds, I am still only just managing. Haven't been to water therapy/aquafit for 4 months, limited to walking. I wear braces on my hands to keep down the inflammation of repetitive activities (such as typing this ). However, when this flare works down, gentle exercise in the warm water, the steady meds, and the best I can do on sleep and good diet, and I can get by.

Hope this helps Sandy.
Wishing you peace and comfort,
Paddy

 
Old 06-01-2008, 08:42 AM   #5
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Re: What do you take for your fibro?

Sandy, I do exercises for my fibro and I take 30mg Baclofen and AmbienCr 12.5. I also have a CTD and MP and almost lupus so I take 4mg prednisone and 75mgs Diclofenac for that and more prednisone when flaring. A lot of us with fibro have thyroid problems and 50mcg of Cytomel help that and greatly helps the fatigue. If my IBS flares I take Hyoscyamine. The thing that helps the most is the exercise, staying off as much sugar as possible and eating a healthy diet. I also have worked out a vitamin regimen that I like and think helps me. For my fibro sleep is the big thing, staying on a routine for exercise and sleep is very helpful but not always possible. Staying away from as much sugar as possible and eating a healthy diet is also very helpful.

It is different for all of us, you just have to find the right combination of meds and activity that helps you the most. It is a matter of trial and error and sometimes even after you have found something that works you have to tweak it a little. One of the best things though you can do for yourself is have a positive attitude that is what puts us all over the top no matter what drugs we take.

By the way, I agree muscle relaxers are wonderful for my fibro.
Glojer

 
Old 06-01-2008, 12:52 PM   #6
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Re: What do you take for your fibro?

Lets see if I can address everyone here.

Thyroid--I'm hypothyroid and take Armour for it. It's keeping my levels normal but you sure couldn't prove it by me as I'm exhausted ALL the time!


This show was put on by the Discovery Health Channel early Sunday morning. I was quite unhappy with their conclusions. Only a person who doesn't live in this he**ish pain can tell me opiods don't have a place in fibro. It doesn't cut the nerve pain, but it does take the edge off and I have to take my methadone to function. There are days even with the meds I still am unable to get off the couch except to do the bare minimum that has to be done that day.

It really is quite scary that these doctors say opiods have no place in our lives because there were certainly healthcare workers watching this who have now decided that we are a bunch of drug seekers who would simply be cured by a couple doses of Elavil and some Lyrica! I can just imagine the damage this show has done for us.

I've tried oxycontin, oxy IR, fentanyl patach, MS Contin, and have now wound up on methadone. I've been on every muscle relaxer known to man and now have my combo of soma during the day, zanaflex at night. I take Restoril to sleep because without it I have no normal sleep pattern..another symptom of fibro they didn't address!

I took neurontin with no results so decided to try Lyrica and have seen some relief from that never ending nerve pain. It's not gone, but it's certainly better than it was. I also take advil, aleve, etc because nothing gets rid of those "aches" in the joints but a NSAID. It's terrible for my stomach as I have GERD, IBS and Crohn's Disease....which leads me to another point.

They never mentioned that fibro might be autoimmune. I take issue with that because EVERY problem I have is autoimmune. Interstitial Cystitis, Crohn's Disease, etc.....it simply fits. And, when you think of all the people with RA, Lupus, etc who also have fibro. UGH!!! I wish they'd asked MY opinion before they put on that show because I'd have given them a completely different viewpoint of it!

Ok, done venting. I really just wanted to know how many people like me do rely on opiods to get through their daily lives. I know, and so do you all, that they give us at least a PART of our lives back and I pray nobody decides that we do not need them anymore. I have a great pain doc who has been seeing me for over 5 years now. I'm relying on this man to maintain my quality of life and THAT is scary to put your life in one person's hands like that. I trust him, but I hate the dependency I have on this one man. I don't see that in my entire lifetime I will come off my narcotic pain meds...not unless they find a cure, a REAL cure for fibro!
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Old 06-01-2008, 04:44 PM   #7
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Re: What do you take for your fibro?

Sandy -thx for the update. I'm going to see if I can get a transcript.
Talk about putting your comfort & salvation in 1 doc....... My doc of 22 years is retiring. I had my 1st appt w his replacement 3 wks ago. Young guy -- about 30. I was just in for my reg appt to extend my prescriptions per usual. He asked me what I needed re-written & I explained "oxycntn & amitriptaline." His response? "Narcotics are not indicated for fibromyalgia" !!!!!! Blank stare. Well, needless to say, I've had a few mtgs w my old doc (he's not quite gone) about my future care. Still quite nervous about it, but will request a mtg w both of them together before he finally goes.
And about FM not being inflammatory? I'm w you Sandy - Pshawwwww.
Thx for the group rant. Pardon my 1 hand typing - the other's in a brace. Just temporary I hope.
Wishing you peace and comfort.
Paddy

 
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Old 06-01-2008, 06:23 PM   #8
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Re: What do you take for your fibro?

I am currently taking 75mg of Lyrica in the am, 7.5 of Mobic, mainly for my headaches, and 1mg of Klonopin at nite. It seems to work wonders for me......awsome! it took me awhile to get to these medications, been a long road, diagmosed about 2 years ago, so i've tried a few different medications.
I also have deg. disc disease and cervical spondilytis and RLS. so i feel better in general. i am actually able to function in everyday life, housework, work, and single mom. I was off these meds for a few months, and OMG!!! i was dreading life, it took all i had to get out of bed, and work all day, 12 hour shifts. and on my days off, i wanted to lay on the couch all day, after i got the kids to school, so i would be rested up in the afternoon after they got home.
But i have to say KUDOS to what i'm taking now.

 
Old 06-02-2008, 02:07 AM   #9
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Re: What do you take for your fibro?

Quote:
Originally Posted by sandy0224 View Post
Currently I am taking 200mg Lyrica 2x a day, and working up on my dose. I am on methadone 10mg 4x a day and I also take Soma and Zanaflex for muscle spasms and find that without these I am in a ball of pain. I also have MPS and conclude that this is why I can't live without the muscle relaxers. I am also doing regular acupuncture treatments that seem to be doing some good, at least short term.

What are your opinions on narcotic pain meds for fibro? Do they help you? What else do you take and what kind of relief do you get from the unrelenting pain and fatigue?
I was also on 200 mg Lyrica 2 times a day. ohhh the side effects the side effects.

Last edited by Irry88; 06-02-2008 at 02:19 AM.

 
Old 06-02-2008, 09:51 AM   #10
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Re: What do you take for your fibro?

What side effects are you having? So far the only one I've had is fatigue. Otherwise it's been fine. When I say fatigue, I mean it used to knock me on my butt and I'd be out for a couple hours, now I can take the 200 mg at a time and I'm fine on it...knock on wood!
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Old 06-03-2008, 08:29 AM   #11
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Re: What do you take for your fibro?

My question.....how do the docs know what is indicated or needed to treat fibro when they don't even know what causes it. My opinion.....a good doc is one that treats the patient and the symptoms not what is the 'standard' for that illness.

Glojer

 
Old 06-03-2008, 06:49 PM   #12
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Re: What do you take for your fibro?

I take guafenesin which has eliminated most of the symptoms. You can find out about it on the internet.

Blessings,
Kirstee

 
Old 06-03-2008, 07:12 PM   #13
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Re: What do you take for your fibro?

Hi, Sandy! I am a 22 year old female, and I was diagnosed about three years ago after a bought with mono. I have tried different medicines, but the ones I am on now seem to be working the best. In general, I feel better more of the time than I have ever felt before. I've started exercising, which is hard, but I push through the pain and fatigue. I try to eat fairly well. Anyway, this is what I take: 150mg of Lyrica twice per day, Chlorzoxazone (a muscle relaxer), Tramadol (for pain), Celebrex (an anti-inflammatory), Lexapro, Diphenhydramine (OTC Benadryl to sleep), Zyrtec-D (for allergies), Vitamin B Complex (for energy), Ginkgo Biloba (to fight memory issues and fibro fog), Korean Ginseng (for energy), Viactiv Multivitamin, and Viactiv Calcium. I do not take narcotics unless I absolutely have too. If I am completely flared up to the point I cannot function, I will take Hydrocodone, and, yes, it absolutely does help...ENORMOUSLY! When I take it, I am almost pain free. I have only taken it twice this year. I went to the E.R. once for pain and they gave me a shot of Dilaudid (sp?), and gave me the prescription for ten. Then I had my appendix out and a root canal and they gave me more that I didn't use so I saved it. I still have a ton left, just in case. Oh, and I also get shots of Cortisone in several joints. Without those shots in my knee and wrist, in particular, I don't know what I'd do. I just switched to a new rheumy who's more into Fibro, and in the two visits I've had, he's had me feeling better than my last Rheumy did in years. I also do 10-day courses of prednisone for really bad flare-ups. I'm trying to get my medications down to the least amount possible without compromising how I feel. I don't like that I have to take all these synthetic medicines, but what can you do? Life dealt me these cards, so I have to play them. Sorry to ramble, guess I needed to talk.

Good luck to you, Sandy!

 
Old 06-03-2008, 07:21 PM   #14
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Re: What do you take for your fibro?

Karen, talking is what we are all about. Welcome aboard. You said you take prednisone for flares. I also take prednisone every day and increase the dosage for flares. It has helped my joint pain considerably, don't know how I would make it without it.

Glojer

 
Old 06-03-2008, 07:47 PM   #15
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Re: What do you take for your fibro?

Wow, the variations in our treatments are incredible. One common thing I see in everyone's posts, though, is that we all have other ailments in addition to our fibro. Whether it is an additional injury, sleep problems, digestive disorders, migraines, etc., we all seem to have something more than just our fibromyalgia. I am convinced that there is some cause and effect there. Our bodies react to the injury and/or illness, perhaps in addition to extreme stress, and the fibromyalgia sets in. It's a theory, and some ask, what comes first, the fibro or the ______ (fill in the blank of your other ailment).

I took Lyrica for 3 months, but the side effects were brutal. I have also tried Topamax, Elavil (aka amitryptiline), Effexor, Celebrex, Ultram, Daypro, Relafen, Paxil, Prozac and countless OTC meds and supplements. I have also tried accupuncture, hypnosis, massage therapy, chiropractic, etc.

What I take now: Neurontin, Flexeril, Xanax, Mirapex (for Restless Legs Syndrome), Ambien CR and Promethazine (Phenergan) for sleep, and for breakthru pain, Vicodin. I pop Tylenol or Aleve on a pretty regular basis as well. I have a doctor's appointment on Thursday and hope to get something else for pain as I am not getting much relief from my current regimen.

Hope this is helpful.

Blessings,
TexMom

 
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