View Full Version : Does anyone here have fibro and not take meds for it?
CherylSLP
02-25-2010, 03:24 PM
Just wondering. Seems like a lot of posts surrounding meds. I take as little meds as possible, side effects are often worse than effects. Anyone else out there have fibro that is not taking prescriptions for it? (Yes, I take prescriptions for other things).
icgennifer
02-26-2010, 06:49 AM
Hi Cheryl,
Yes, I have fibromyalgia and do not take medication.. do you have any other questions I could help to (hopefully) answer?
sailawaygrl
02-26-2010, 07:46 AM
How do you manage your Fibro without meds. I just recently started Cymbalta. I had not wanted to add more meds to the mix but the Fibro began to cause me so much pain and fatigue that I really felt I had no choice. It has helped me to become more active, so my hope is that I will be able to get into a fitness routine that will help with the fibro and I can wean off of the Cymbalta. Any thoughts or suggestions as to how to manage without meds?
Sandra
Charisse
02-26-2010, 10:28 AM
I take Ambien for my fibro which is not a mainline treatment. Also the occasional Ativan in the evenings to help my muscles relax. I have not been able to tolerate any of the antidepressant meds they prescribe but have yet to try Lyrica or Savella. I just about drs experimenting with Naltrexone for fibro and I thought that sounded interesting since it's not an antidepressant or a nerve pain med but aimed more at inflammation.
asIshallbe
02-26-2010, 04:21 PM
I take klonopin, but it helps moreso for sleep and it eases my neveres, which in turn I guess may help the fibro a bit. I also take gabapentin. It does not help so much for the fibro, but again moreso for the sleep, and I also take pain meds. Those I take for the IC. Nothing seems to help the fibro. I guess in my mind the meds I take are mainly for the excruciating IC pain and being able to sleep because I still hold a stressful FT job (somehow) as a paralegal.
Kirs10
03-03-2010, 02:30 PM
I don't take any meds that just for Fibro. I have tried a few but they have not really helped me. So I try to manage it with just the meds I take for my IC. It doesn't really help but I am already taking so many different meds I really don't want to take anymore.
Chellethinques
03-13-2010, 04:54 AM
No meds here, but I'm pretty mild when you look at the whole spectrum. My rheumy referred me to the sleep clinic first, and offered PT if I couldn't get a mild exercise program going on my own. What has actually helped me the most is getting some of my urinary symptoms under control so that I'm sleeping deeply at night without getting up with pain or to pee. That has drastically improved the aches and fatigue and memory issues I was having. (I didn't go to the sleep clinic ... all they would see is a girl who pees 6 times a night!)
I hate to exercise, but as my bladder pain is good right now, I've been trying. Interesting books on audio, or podcasts about my hobbies, or good movies help while walking on the treadmill. DH bought me a workout program for the Wii that can be set for no bouncing-around exercises, just easy toning with a resistance band. I do like that (and the boxing is a good stress reliever!) Plus, I have the feeling of "good" body aches from exercising, which is a nice reminder of how my body is supposed to work.
I also take extremely hot showers right at bedtime, which are relaxing and help me get to sleep fast. (My skin, however, looks like an alligator!)
I don't know if any of that helps, but I do understand the desire to take fewer meds. I'm off of everything but antibiotics right now, and a few things that I thought were age-related (heartburn, nausea, headaches) have disappeared.
Melanie526
03-13-2010, 06:36 AM
Has your doctor prescribed Lyrica? I know it's FDA approved for fibro...I don't have fibro, but I take it for IC pain/abdominal adhesions/endometriosis and it really helps...I don't even take it every day...just take it when I'm hurting bad (I'm stubborn and don't like to take meds...something I wish I could get over). As far as side effects with Lyrica, at first it would make me a little sleeping and I might get a headache (but just took Tylenol and the headaches would go away)....now I have no side effects...and like I said, I don't take it every day...I might go a week without it, and then I might go a few days where I take one or more...just depends.
Also...a lady I teach with has fibro, and she refused to take the Lyrica her doctor prescribed...but she walks like crazy...she says the more she moves/exercises, the better her symptoms seem to be.
Hope everything works out for you!
KathiB
06-22-2010, 10:36 AM
The only medication I truly take for the fibro is Trazadone - it's an antidepressant (my dosage is not a high enough dose to help true depression). One of the side effects is instant, dramatic sleepiness. I take it right before bed, and most nights sleep through the night.
This medication helps my fibro - I am getting a good nights sleep, and my general achiness is drastically reduced. It also helps my bladder - unless I'm in a terrible flare (like now...) I sleep through the night. Before this medication, my bladder would wake me 3-4 times a night to urinate, then I would lay there forever in pain trying to fall back asleep. My fibro would be so bad, it hurt to move.
This medication, by helping me sleep, has been a godsend. When I sleep good, I feel good.
mela414
08-21-2010, 01:45 PM
The only medication I take for fibro is a nghtly ativan which helps me to get a good nights sleep. I rarely take pain meds but have had to resort to some recently for horrible IC pain. Unfortunately, I have not been able to tolerate many meds especially antidepressants which I could really use. Lately my fibro and fatigue have been really bad. It seems that when I am under more stress or pain the fibro flares up. I get really bad flu-like symptoms which will keep me in bed for days. I know I get viral flare ups during these times too because if they draw my bloods when I'm feeling like this it always shows elevated mono.
Would love to hear how others manage their lives with both IC/Fibro/fatigue/ I am so debilitated at times that I find it extremely difficult to do the simplest things. :(
Chellethinques
08-21-2010, 03:08 PM
It's so interesting to go back and read my post from March, when 20 minutes on the treadmill induced an hour long nap, LOL. I don't know now if I really have/had fibro. I've been slowly training for a 5K, and am up to running 3-4 miles every day, plus Pilates class twice a week, and a muscle toning class once a week. (Note that this process has taken half a year!) I no longer have the fibro "burning" pain in my upper torso and along the trigger points. I've tried to research exercise-induced endorphins and pain management, but am unclear. It is good to note that the Dr. said my fibro was pretty mild, and that she felt exercise was the best way to keep on top of it.
The bladder pain I had is down to whenever I am having bowel issues (sorry!) or cramps or have done a particularly hard workout. No UTIs since Jan. when I quit the "don't gotta go right now" meds that may have been causing retention. I agree (finally) that my main bladder issue is some PFD, which causes a burning-type pain localized below my bladder. I probably could benefit from some physical therapy for this, but as it has been improving the more weight I lose and the more I get in shape, I plan to wait and see how things shake out.
mouse
08-21-2010, 03:41 PM
I take meds on and off for fibro but for the most part go with out them. I have found that daily stretching, staying active and hot baths plus valium was for the most part all I needed to keep the fibro under control. However, anything aerobic exhausts me the next day since I have chronic fatigue and both aerobic and anerobic exercises with lights weights can really bother my bladder. Not sure what the solution is??? I too try to stay on as little meds as possible.
bladderpain451
01-13-2011, 12:09 PM
Mind as well not be taking any medications for it, they are all gay, except my plaquenil. :(((((
mouse
01-14-2011, 02:16 AM
I tried ALOT of meds for fibro & IC and none of them worked so I would systematically one by one go off them. But then it got to the point that the fibro pain was so bad that pain meds couldn't touch the pain & I had absolutely no quality of life. I realized I had to go on something. So I decided to try Savella. It had been sitting in my night stand for a year because I was to afraid to try it because of all the side affects. Finally, I just resolved that if I wasn't willing to try "EVERYTHING" then I needed to shut up and stop complaining to my family about the pain. I'm sure they were sick of listening to me!! My doctor didn't hold much hope for Savela, since Lyrica didn't do a thing and the pain kept breaking through after a week but to my suprise within two - three weeks I had little to no pain!!! And the best part was it completely got rid of my bladder pain and even decreased frequency:woohoo: However, the threads are correct it's a tough med to take in the begining. There are alot of side affects and if I hadn't listened to others advice I may have given up....I'm so glad I didn't:smile tee
bladderpain451
01-14-2011, 04:01 AM
I think all antidepressants have horrible side effects. I'm so jealous. lol. I could only take it one day and had to quit. Glad it works for you though. I wish I could have gotten so lucky. :)))
Briza
01-14-2011, 04:08 AM
For those who developed fibro symptoms while taking a benzodiazepene (ativan, valium, xanax, klonopin, etc.), please be aware that this class of medications can cause muscle and joint pain, sometimes severe. It is not uncommon for patients taking benzos to be misdiagnosd with fibro, only to find once they stop the medication the muscle and joint pain goes away.
This happened to me when while I was on xanax. I almost mistakenly received a diagnosis of fibro. When I discontinued xanax a few months later the pain completely went away and has never returned. It wasn't until after I was off of the med that I discovered the connection. My doctor didn't make the connection either. Apparently as an IC patient, it was easier for it to be written off as fibro rather than take a look at my medications as being suspect.
mouse
01-14-2011, 05:00 AM
Oh bladderpain I'm so sorry....I wish it would have worked for you too!! The side affects were tough in the beginning but I'm glad I hung in. I don't generally have a side affects with anti-depressents but this one "Oh boy". It's a tough drug but atleast it works. I survived the side affects of many, many, drugs that didn't do a thing!! It's funny we are all so different. Even my doctor didn't hold much hope for this working and it has the best!! I hope you find something that works for you soon...*Hugs*
bladderpain451
01-14-2011, 05:34 AM
I took valium after my diagnosis of fibromyalgia for 4 years for anxiety, it helped with the muscle pain, when my doctor decided no more valium, I thought I would die, my pain got worse after I stopped taking valium. Muscle relaxants can also help muscle pain. I'd do no good on it now, I take zanaflex and all it does is help me sleep, doesn't phase the pain. I have anxiety bad, I think it was best though, that they did take it from me, at the time I had depression pretty bad. These medications can cause depression with long term use. There are plenty of better choices out there if you need a muscle relaxant other than something addictive like valium or klonopin. I got high taking Savella, not on purpose, lol. That's the only reason I couldn't keep taking it. I'd be tempted to try it again though if it works that well. Shoot, I'd try about anything, I'm hurting so bad. Thanks.. When that strain in my back heals, the rest of my muscle pain probably won't feel so bad. I see my doctor at the end of febuary, I'll get something then. I don't want something like prednisone but that is what they typically use for autoimmune disease, but I'm fat enough as is. I lost 12 lbs last month, but my doctor said to lose more to get my blood pressure down. Taking prednisone unfortunetly causes weight gain. I think I'm going to ask for a narcotic, it's the only type of pill I think is strong enough to really knock pain. If they can give it to the next patient, they can give some to me.
mouse
01-14-2011, 07:39 AM
I had that "high" feeling for one or two days after I increased my dosage, I think from 25 to 50mg. It was very short lived. The "high" feeling lasted much longer and was far worse when I took lyrica. All of these drugs have such awful side affects...You really can't win. I found with time, Savella's side affects really do go away...You just have to get there and for some people its more difficult then others:( I have been on valium now for 3 years. While it helps me sleep and quiets the bladder, it did nothing for the muscle pain. I swear it felt like I had bone cancer....It was so deep!!!:evilsmile
I wish you all the best. Even now, if I have an off day, the fear sets in and I think "Oh no it's stoped working!!!" Luckily, I don't have that many off days and it never lasts that long:pray:
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