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Posted 7/13/2011 3:35 PM (GMT 0)
Welcome Neeters: (FYI) I took Darvoset for almost 8 yrs / 3 x a day and it helped me really well. There isn't a drug that will
take 100% of our pain away(4 me anyway)but when they jerked the Darvoset off the market; it turned my life upside down!
So I think your Dr. is wrong.It "did" help me.But as we say on the Fibro forum; we r all different.Right? Anyway; it has taken
me over 9 months & 5 different drs. but I think I have found one who listens 2 what I have 2 say.I go back n August for a
follow-up so we'll see.But I had 2 go out of my county to find a new Dr. 2 treat me.I won't go to anymore Drs. that r connected
with CMC other than my Ob-Gyn. So I hope u can find someone.You may have 2 search like I did in order 2 find a Dr. u trust. I
almost gave up.But keep searching even if u have 2 go "outside" your county like I did. Good luck!
Posted 7/14/2011 3:14 PM (GMT 0)
HI Neeters,

I have been seeing a chronic pain doctor and with his help and of course my family doctor I am finding some relief. I take cymbalta, and targin and oxycodene for break through, and amytripoline??, and zopiclone for sleeping. I also have a few other health concerns so with the help of meds and exercise I am able to function daily. I still have occasional bad days but they are not everyday anymore.

I searched and tried other ways to deal with the pain, we all have to do what is right for us.

Take care
Posted 7/14/2011 6:15 PM (GMT 0)

Hello Pain Gang!

I'm new to this site but not to fibro.  I have a long, colorful story but I won't bore you with the details.  What I want to share is that after years of misdiagnosis & then more years of mistreatment, meaning unsuccessful treatment, I went to a pain clinic.  They saved my life.  More precisely, they gave me my life back.  They don't actually prescribe meds, but recommend them to your own doctor.  That seemed to take all the  pressure off of my PCP & he has graciously written pain meds Rx for me every month since.  It's been years now & I am always, always in some pain, but with narcotic pain meds I am able to live a relatively normal life.  I'm not happy to depend on any pill, but I thank God for them every day because I'm stuck with this body.  Who are these meds for if not for people in pain every day?  Sadly, we need to overcome the suspicion that other people have raised in the medical community.  If you even hint at needing or wanting pain meds you're looked at with mistrust.  That's not fair.  But there are docs & clinics that are mature enough & informed enough to know the difference betwee junkies & pain patients.  It is my sincere wish for all of you who hurt like I do that you are fortunate enough to find one. 

Posted 7/14/2011 6:37 PM (GMT 0)
Greetings Dotkom: I just wanted to comment on the variety of posts about our "loving" or "hating" pain clinics. I live in
N.C. and my first initial experience was great.Was put on darvoset & there I stayed till last year when I had to have my
PCP take over my pain management.He was fine till they pulled it off the market.So he sent me back to the pain clinic.It'd
been almost 2 yrs. since I'd been there.Soooooooo: I went back.And are you kidding me? We don't prescribe pain meds for
Fibro here anymore they said.Try Cymbalta or Lyricia or Sevella. I have I told them.Can't take any of them.The pain clinics
in our area are not like those in the larger cities apparently.However, I am soooooo happy for all of you who have had good
luck with them.But for me; they were a nightmare. God bless! :)
Posted 7/15/2011 12:41 PM (GMT 0)

Wow, I'm really sorry to hear what happened to you.  Do you mind my asking why you can't take the new fibro 'wonder' drugs?  The reason I ask is because I can't take them either.  After a short time, 3 days with Lyrica, I get what I call brain zaps.  They're the most awful things.  They're like, and I suspect quite literally are, electric shocks in my head!  It's as bad as it sounds, trust me.  It took 2 months but I developed the same symptom from Paxil too.  Why?  Who knows, but I will never again take any of those meds.

What I think is happening here is that these newish drugs have become another place for reluctant doctors to hide.  Guarenteed, if they or their spouse lived with the high levels of pain we do, obtaining serious pain meds would not be so difficult.  It's just so unfair.  Why oh why isn't there some difinitive test that can quantify pain levels?  I just kept telling my doc & whatever specialist I was seeing that this or that did NOT work.  I didn't ask for anything else, but I kept them in the loop so they knew I was still NOT being treated & I refused to just go away & suffer quietly.  Don't give up.  It seems like a lame thing to say, but I'm at a loss as to what else to encourage you with.  I really hope you find a solution soon.  *gentle hugs*  Dot  

Posted 7/15/2011 5:30 PM (GMT 0)
Hi, Dotkom!  I didn't know you were here!  Your posts are hidden in other threads.  But, welcome!  I'm glad you have popped over here.

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  In there are links to a journal and also pain charts...the type that hospitals use to help you describe your pain to your doctor.  You might try keeping a journal showing the activity and your level of pain at the time.  This will help your doctor truly understand what you are going through. 

 

My guess about the brain zaps is that there drugs change the brain chemicals some.  Lyrica was originally used for seizures.  Naturally the antidepressants do this too.  This is the main reason I don't take these.  I've learned how to control the pain without using these meds.  Some people have great success with them and others don't.  Some have success at first and then it stops working, too. 

 

Doctors are really finally looking at fibro and I do think we'll get some answers and help soon.  Until then, we'll just keep on keeping on!

Sherrine 

 

Posted 7/15/2011 6:27 PM (GMT 0)
Dear Dotkom; Thanks for your post! I couldn't take Lyricia because I about ate myself to death & my feet and legs
swelled so bad I couldn't hardly walk.The Cymbalta made me dizzy & made my head hurt really bad.And the Savella
made me throw up.Sooooooo: with all those side effects I thought; I already feel bad enough.Why would I take a med
that's gonna make me feel even worse? The Drs. don't care about us.All they care about is the almighty dollar.Now I
realize there are some out there that are the exception to the rule.And to those I say"God will bless you"! I have found
a Dr.I think I'm really gonna like who gave me my pain medicine on a first visit w/o treating me like a drug seeker.I go
back on August 2nd. But I had to go outside my county to get the help I needed. So you may have to do the same. I
hope you can find someone to help you out so keep looking. Take care!
Posted 7/15/2011 7:42 PM (GMT 0)
bsjaguar said: "I couldn't take the side effects of lyrica but do use gabapentin (generic of ultram) and my body tolerates it well. Gabapentin is for nerve pain and is an older form of lyrica."

Actually, gabapentin is not the generic of Ultram. Tramadol HCL is the generic for Ultram. Gabapentin is the generic for Neurontin. :)
Posted 7/18/2011 7:01 AM (GMT 0)
I use the tramadol/Ultram. I had to play with it to see what works for me. One in the morning, one at night, and on bad days I take it every 6 hrs. Some days I have a good day and as evening starts to set in, I'll start feeling bad again, so then I'll take an extra tramadol and it seems to pull me out of it. If it's a bad flareup, like the others say, it doesnt do much, so then I rely heavily on the lidoderm patches. Because I lived with fibro for many years before I was diagnosed I had plenty of time to know what works and what doesn't for me in regards to natural pain relief.

I know that if I can stop pain during the night, so that I don't wake up feeling like I was hit by a train, I have a much better day than if I wake up with pain. So I concentrate on relieving my night pain really hard. I take 1-2 tramadol, I use the pain patches, and I use a weighted blanket when I can take the extra heat. I usually take a bath right before bed as well, and if I sit and watch tv, I use a heated blanket when it hurts.

But what helps for one doesn't seem to help for others.

My big thing lately is the fibro fog. I'm on the computer 14 hrs a day and realized that today I'm dropping words - so sentences don't make sense. Doesn't help much when part of my "other life" is as an author. Yikes. My editor would hate that. Oh and forgot to turn the stove on today. Made for dinner being a tad late.

BTW - I also take cymbalta.
Posted 7/28/2011 4:26 PM (GMT 0)
Hi again everyone! All of this is very insightful information.

I did wind up coming off of the Lyrica since my doctor felt it wasn't helping me. I was afraid that it was the cause of some weight gain I have experienced over the last 2 years....but never knew and still don't for sure. I gained 40 lbs. in a year and a half. But, I have been off Lyrica now for nearly 2 weeks and lost 10 lbs! So, I am hoping that it was the culprit and I can get back down to a healthy weight. Nothing is worse than having to deal with the pain of fibro which causes depression and then getting further depressed because you can't look at yourself in the mirror without being disgusted.

I also decided to see a Pain Management Specialist. He did not want to prescribe me pain meds like Tramadol though because I am Bipolar and have suicidal thoughts at times. Nothing I have EVER acted upon though in the 14 years that I have had these tendencies but, I guess I understand his hesitation to give me a narcotic. He suggested we try epidural steroid injections and I did go ahead and give it a try. I had my first set for my left side on Tuesday the 26th. I go back to have the right side injections on August 9th. At this point I am willing to try anything because I am just tired of hurting.

It almost seems that dealing with Fibro and how to manage it changes all the time. What works for awhile seems to stop working all of a sudden and you have to change the dynamics. I was diagnosed 2 years ago so I am still new to it compared to so many of you.

Thank you all for your help.
Posted 7/28/2011 9:36 PM (GMT 0)
I hope that the shots work for you. I hate needles myself so I know it would be hard for me to do.

Wishing you the best.

Hugs, Karen
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