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Living With Fibromyalgia - Online Support Group

Anyone not taking medications for their Fibro?

#1

I don't get a chance to get on the site much because of the extreme fatigue etc. etc. since we all know about the lovely symptoms :)

Anyway....Is there anyone out there that doesn't take any medications for their Fibro? I am just wondering because I have been on Amitryptlyine, 20 mg at night for my sleep and Elavil 75mg 2x daily and I don't think they are working. I have noticed that my depression has become extremely worse, my pain is constant and severe nine times out of ten and I am still waking up at night and unrefreshed in the morning.

So based on how I feel taking my medications I was thinking of weaning myself off of them since they don't work and all they do is cause side effects...such as a thirty pound weight gain!

I do take Tramodol 50 mg for pain but they don't work.

Any thoughts?

Thanks a bunch! I appreciate that I have found a group that knows exactly what this is even though we "don't look sick"!

Thanks again everyone!

#2

Hi Gina,

I'm not on any of the FDA FM approved treatments. I have just started an antidepressant this week, Wellbutrin. It's only been 5 days so I can't report anything yet but I opted not to take any of the other meds because of the side effects. I'm newly diagnosed so attempting diet change, exercise (when I can), and a lot of supplements. I'm also doing trigger point injections, just had my second round this week and it has helped somewhat. Hang in there, but definitely talk to your doctor about discontinuing because I know some can be dangerous to just stop completely. I'm still out on short term disability, hoping to be able to find some relief so I can return to work. Hang in there and keep us posted on what you decide.

Hugs

#3

Hi Gina,

I take zero Rx for FM. I do take a homeopathic OTC called Fibromyalgia Relief as well as a couple of other supplements and such. I still have some pain but much less than when I don’t take the FM Relief. I still have insomnia, brain fog, and other related symptoms but I guess they don’t frustrate me as much as they would if I were taking Rx meds that didn’t help. I just have higher expectations for Rx and if they don’t meet my expectations of relief I get really angry at the pharma cos.

Wishing you health and comfort.
Jamie

#4

I'm not taking anything for my FIbro or depression. I'm allergic to so many.. I use heat for the pain.

#5

I take 75mg of Zoloft. Before I went on it last spring I could not sleep because of severe pain and extremely high levels of anxiety. Shortly after I began taking it my panic attacks ceased and I started sleeping through the night for 8 hours. We need serotonin to sleep and since I was so low on it I couldn't. Zoloft has not taken all of my anxiety away. I still battle it daily and have to take a Clonopin about once a week when my anxiety gets out of control and starts making me feel really sick. I should probably try a new kind but I tried several before I got to Zoloft and the side effects from them were bizarre and scary, so I really don't want to go through that again. The Zoloft has enabled me to go back to work and function much better. I also take Zantac and Tums for acid reflux. Those are the 4 medicines I take plus several supplements. Still haven't found anything to take away all of the pain on a consistent basis:(

#6

Hi Gina

You state that you are taking amitryptline and Elavil. It I am not mistaken, these are the same (brand name vs. generic). Do you have two prescriptions? Elavil is know to cause extreme weight gain. I gained 50 pounds in six months on it and became depressed. For the most part, I have tried to stay away from drugs. They increase the fatigue. I take Lunesta because that is the only way I can get two to three hours of sleep and occasionally hydrocodone for pain (but not every day). I try to manage with mild stretching, diet, light exercise, supplements, alternative therapies, hot baths, and anything I can think of for relaxation. Some people do well on medication, but I am not one of them. Good luck to you in your journey to better pain control.

#7

Hi

I have fibro,Cervical and lumbar degenerative disc disease and Bi-polar. I am immune to all medications. I have taken the medication but became very quickly immune to them. I have read many profile and have taken everything that other people have. My daily pain level is 7-8 on a scale of 0-10.

I am not taking any kind of medication for some time.. I just have to live with the pain.

#8

I feel the same way. Medical world doesn't have much to offer us and I feel sicker on the meds than without. I take some supplements, but no meds for fibro. I take meds for lupus problems though.

#9

Although I am on a dozen medications for assorted ailments, I have never been placed on any of the drugs specific for FMS. The closest drug that may be helping me is perhaps the Nortriptyline that I have been on for the last 5 years. It was prescribed back then to help with the inflammation of the inner lining of my nerve jacket if I recall correctly.

Here is my current med list:

.Nortriptyline 40mg (4x 10mg per day)
.Amlodpine 10mg
.Hydrochlorothiazide 25mg
.HydroMorphone 2mg
.Fluoxetine 40mg <-86
.Fenofibrate 54mg
.Venlafaxine ER/Effexor 150mg
.Diazepam 5mg
.Hydrocodone/Acetaminophen 10/325mg
.Diltiazem XR 240mg
.Losartan/Cozaar 50mg

If there is any meds in there specific for FMS, someone please let me know.

:)

#10

I'm currently not on anything for Fibro but that might change because my doc is sending me to a pain specialist. I was taking Lyrica but it did nothing for me. The meds I do take are for blood pressure, depression and a sleep med.

#11

Right now, they took me off cymbalta, because of my side of effects, and off elavil because side effect. The put me on Zoloft, but I am still in pain, and don’t sleep well. So you can say now I don’t take any medication for FM.

#12

All I’m taking right now is 100mg Tramadol ER in the am and 1 mg Klonopin at night. I also take various supplements like vit D, fish oil, magnesium…The Tramadol is not really enough most days for the pain but after having tried every pain med there is (basically) it is the only opiate I can handle, the side effects aren’t nearly as bad as the heavier ones like oxycodone, Methadone, etc…but the pain control is not as good either. It’s a trade off I have to make because I could not live with the side effects of the stronger ones. Lately Klonopin has not been enough to help me sleep…I occasionally take Ambien or Soma for sleep as well.

#13

Wow you don’t hardly take anything! I have my pain down to a 3-4 now all the time. But I go other things to control it too! Epsom salt soaks, Hatha yoga, massage, eating clean and tons of supplements and pharmaceuticals! Everyone’s symptoms are different! I would recommend finding a Dr. That is more knowledable in Fibro! I take 2 different pain pills a muscle relaxer, and Savella! Good Luck!!!

#14

Everyone is different, but no med has ever helped me. They just made things worse. I stopped taking all meds. I take vitamins. Even for the depression, St John's Wort has given me no side effects and it works for me. I'm a basket case without it. I just can't deal with the side effects of the meds and all docs want to do is dope you up. They don't want to run test to find out what fibro really is or if you have something else going on. I start water PT tomorrow. So, I'll see how that goes.

#15

Water therapy should help a lot if the water is warm!!!

#16

Years ago I started taking amitryptline 25 mg at night to help with sleep. Helped minimally for about 2 years and later put on lunesta 3 mg. helped me get about 4-5 hours a night, enough to go to work but pain increased. The only pain meds I have been given were for the 8 surgeries I had since 1998.

I have tried tramadol, cymbalta gabapentin, savella and lyrica, and Botox with increased pain and horrific side affects. One neurologist gave me 50 mg fentynal patches which nearly killed me.

I currently take 100 mg trazadone, 3 mg lunesta and 3.8 ml of naltrexone at night for sleep - which has really helped me get anywhere from 5-11 hours of sleep. I still don’t wake up feeling refreshed but on days where I get at least 9 hours are much better days.

I take cyclobenzaprine 10 mg (muscle relaxer) when muscles in my neck start tightening up. In my county they won’t prescribe any opiates unless it’s for surgery. I do have some left from my last surgery in October, which I take as a last resort and then it only takes the edge off.

The naltrexone has helped me immensely for the depression. I used to cry daily for no reason and this works for me, with no side affects. It also helps the burning, buzzy feelings in my legs, feet and hands.

Make sure if you go off your medication you do so under your doctors supervision. I wish you the best!

#17

i take gabapentin, cymbalta, tramadol, muscle relaxers, vicodine, and am bien. it helps me function.. but doesn't work all the time.. I'm going to be working with someone who will get me into a Paleo diet. get rid of all processed foods. only eat whole foods. will see if that helps!

#18

Hi Gina,

Whoever pointed out that Elavil and amitryptyline are the same was correct. Are you sure you're taking them both?

I've had fibro for 25 years, started on generic ambien (zolpidem) for sleep a decade ago. It has declined in effectiveness, unfortunately, but is better than nothing.I don't wake up rested and do not look forward to bed time. I have 4/10 level pain all of the time, have been at 11/10 at times, LOL. I have come close to a Cymbalta trial several times (like an alcoholic, I take out the pills and look at them) but retired from a mental health profession and decided to tolerate pain, sometimes a bad choice, rather than deal with serotonin-uptake meds. Lyrica would mean I could never have another glass of wine and might not work for me anyway. The leaders in the field who treat FM pretty much say that treatments are modest, though some work for some people.

I complain of pain a lot to my wife, which is not a recommended treatment, especially by her.

#19

Ah, Capefibro, I was wondering where your sage advice and wonderful humor have been! Don't be such a stranger!

#20

(:<)