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what has worked for u?
10 Replies
fibronurse - March 30

hi friends. i am 38 y.o. nurse/wife mom of three. i was dx in 2007 after years of sx. i liv in northern mich. last week was 80deg. today it is snowing. so i am flared up. i also hav interstital cystitis, sciatica, migraines, fevers. currently under care for drug toxicity to cymbalta. i use norco 10/325 3x/day. i hav worked w/doctors who "get it" and some i wanted to drop kick. they wld talk about pain patients in front of me..and be very deragatory. they are only human and some are better than others. am not currently working. was doing 40/50 hrs/wk and had no life. only slept between shifts. didnt make dinner..or play w/kids or talk to husband. norco has provided some relief. but have been taking for very long time. do not want lyrica. and obviously can not do cymbalta. have been educating self as part of battle...and sometimes the physicians as well. wink wink. let me kno


Jocelyn - April 2


Read you post, but I am not sure what you are asking?


January - April 2

fibronurse - if you're new to the site, you can find out what has worked for lots of people by reading the old threads on here - just scroll down through the discussions and pick a topic that interests you.

If your question was about the FDA-approved drugs, I agree with you. I had a bad time with antidepressants and, based on what I've seen and read, I'm not willing to go on Lyrica. Everyone gains weight on it, and I think that is a health risk in itself.

I don't know if you're on Savella - but I've heard of people on Savella having trouble with cystitis - it was caused by the drug, and went away when they stopped.

You state you get pain relief from Norco. Are the doctors trying to make you switch over to Lyrica? Or one of the other "newer" drugs?

Would you mind sharing what happened to you with the Cymbalta, and how it affected you? Did it damage your liver? Are you going through withdrawals?


fibronurse - April 4

i was on cymbalta for 4 yrs. i hav had symptoms that hard to pin down. flashes..sweats...hand tremors..svts...myoclonus..nausea. recently my heart rate has been elevated. 120s at rest and temp is elevated. internal med/doc believes i hav drug toxicity and the two meds that cld cause wld b cymbalta or concerta. i hav also had mouth ulcers for eight months. look like craters and do not hurt. hepatic profile was fine. i went off the cymbalta and have noticed some relief. i need to see neurologist for symptoms to r/o comorbidities. however i do not have insurance at this point. im frustrated. and tired.


January - April 4

Since you're a nurse, you might want to google the drugs you are taking and read the information at drugs (dot) com. It's a good site. They have a section for the general public, but if you keep scrolling down, they also have information for health professionals.

I know Cymbalta can cause the symptoms you mention - and withdrawals are awful and lengthy. Concerta can also cause some of the symptoms you note. The site mentions that Concerta should NOT be taken with a number of antidepressants. If it's drug toxicity, all you can do is wait it out and let the drugs clear from your system. I hope that you will get better with time. There is a site called theroadback (dot) org - with helpful information for people who are coming off antidepressants. This can be a very difficult process - I don't think most doctors understand how severe withdrawals can be, or how long it takes.

Have you considered that Norco may be masking the pain of the mouth ulcers…? A lot of people here have them. You can plug the term into the blue search box at the right and search for those discussions.

Hope you feel better.


bluesbrrd - April 10

Cymbalta was an absolute nightmare for me. For some reason I let my doctor talk me into trying it a second time, but I hated it, and the withdrawals were the worst of anything, including Oxycontin!!! Both times I took it, it took away my emotions - I felt "dead" in the head. It also gave me back spasms both times, which I thought was a bizarre thing for a drug for fibro!! Lyrica made me way too hungry, and people gain as much as 30 lbs in a MONTH taking it. It made me REALLY depressed, so I stopped that, too.
I recently tried Wellbutrin, hoping it would help me sleep - BIG MISTAKE! After 2 weeks it was like having a fistful of caffeine pills. I got very agitated and my anxiety was off the charts. No more experiments for a while!

I first took Pamelor (nortriptiline) when I first tried to get better 25 years ago, and it worked for me then. I tried to take it again a few years ago, because I was desperate for better sleep. I could feel it relax my muscles, but it made me very sluggish, which was why I stopped taking it the first time (after 3 years). I was very sick all last year, with some kind of bowel/obstruction/constant severe abdominal cramps, which were terrible! I stopped taking the Pamelor about 3 months ago, and started getting better! I have no idea how it could do that to me, but it disrupted my normal bowel function. I will NEVER take it again. I am doing so much better, because that was just destroying me.

I've been going to a good massage therapist for about 6 months now, and she helped work out the abdominal thing. I'm sure I have adhesions and scar tissue from 4 abdominal surgeries for endometriosis. What's terrible is you can go through all of these severe complications, and no doctor can tell you anything. Six months ago I started with the massage, and with a chronic pain therapist, which was discounted through Medicare to about $40 a visit. My chronic pain nurse therapist in VA cost me $135 a visit!!!

Those things helped me more than any meds. I can't afford Oxycontin, and had a bad situation where I moved in with another person who started STEALING it from me! She even PICKED THE LOCK on my lockbox, and could open it AND LOCK IT BACK AGAIN!! I thought I was going crazy there for a while - why were my meds disappearing!?

So my doctor put me on methodone, which has a lot less "street" value! I like it, because it doesn't mess my thinking up but relaxes me a bit and takes the edge off the pain. I have found I can go without it in the daytime now. I have always had problems with pain meds worsening my depression, messing up my bowel function, and clouding my thinking, so I put up with more pain. It's a trade-off. I am hypersensitive to almost every medication I take. I've never even been able to drink coffee!!

I also hate the stigman of being on pain meds, but with fibro you have no choice. I have alcoholism in my family, but I have never had problems with addiction. I have never, ever increased my meds or taken more than I should. It doesn't make much difference, anyway. The average chronic pain patient only gets about a 30% reduction in their pain, regardless of what they take. The only time I'm pain-free is when I'm asleep! This is something most people don't get, because they associate taking pain meds with feeling no pain.

I hate the stigma, and I hate that it made me a target for theft! I live alone now, not going to go through that again. Most people with chronic pain don't become addicted, so doctors should not worry about it so much when severe pain is a problem. There are a certain percentage of people with addiction problems, it's a brain disorder they are born with, and those people will abuse their drug of choice. They give the rest of us a bad name. I have a very good rheumatologist, thankfully, who's not willing to let his patients suffer!

As far as HOUSEKEEPING goes, I had to stop worrrying about that a LONG time ago! Do what makes you happy, and what makes you feel good. My boyfriend left me because the house got so messy, but to a certain degree, that was his fault. He made the mistake one day of giving me an ultimatum, which was a crappy thing for him to do. He wanted me to let him THROW AWAY ANYTHING HE DECIDED TO, without my having a say in it!! Can you imagine? I thought he was being mean, and he was! He could have worked with me, but he left. It wasn't the only issue, but I really loved him and still don't understand how he could do that. But I'm over it now - that was six years ago!

It's hard enough getting to your own chores when you have fibro, I sure wouldn't volunteer to do anyone else's!!! I live with a certain amount os squalor many wouldn't tolerate, but if i don't do it, no oone else is going to! If anyone judges me for it, that's their problem!! I'm not going to make myself miserable over something so superficial.

There is really some good help and ideas on this board, i'm finding out!


bluesbrrd - April 10


Spacy today, that's for sure!


Jocelyn - April 10


I am so glad to hear you are working on things every way you can. I am a lot like you, I cannot take the meds. I am having many flares, but am taking them on step at a time and working with a physical therapist. I am going find out if my insurance will pay for any message work because I really need it. The stress from work just inflames my hips and back. By the end of the week I am in bad condition. On most nights I sleep pain free which is great. At least if you can sleep, things don't look so bad in the morning, even though it takes time to get going. I can't wait to retire. I have 6 more years to go. I hate the cold weather and having to get to work for 7:45 every day. I really need time to get moving. Any way...for some reason tonight my legs and back are killing me. I worked from at home today because I had an appointment in Boston with an hearing specialist. Of course, my hearing is not bad, but I have some kind of ostosclerosis, which means the muscle in my inner right ear doesn't move because of some kine of extra bone growth, so, my hearing has a little problems. However, the constant ringing in my ears is due to hearing loss as there is no cure, but some things one can do to make them no sound so bad. I was already doing that,sooo..that was that. Add the hearing into the other problems. Oh well.

Everyone stay well.


fibronurse - April 10

alwayys be pro active and research your meds. that said. i will not win housekeeping awards. leave the dishes in the sink. they will still b there when u feel little better. it is difficult for husbands/lovd ones to understand. my husband has his moments. other times i feel alone. his way of helping is to do ALL the laundry..and then dump it in the livingroom and walk away. sigh. he is grieving too. i am not the same active person he married. we struggle daily for balance. usually evry few months we have a big fight..and then we are on the same page again. we both just want to be understood. when i can give more..i do. BUT he has learned that usually means i am trying to recover for the next few days. children suffer too. mine are 14, 11, and 5. "mom you never feel good". and they are right. i am off cymbalta now. no more mouth CRATERS. no more nausea. still anxious. fatigue is terrible. i lay in bed at 530 am...and ask they REALLY have to go to school today?! hang in there. its all we can do sometimes.


annarnusa - April 13



kvc33 - April 15

Cueball, I have found some information that I would like you to read. Please go to ehow dot com and type in What causes a burning sensation in the body? in the search box and then click on the link. I think your answer may be there.



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