Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
There are some supplements than can help, kava, valerian, passion flower, 5htp and/or tryptophan. Make sure none of these things might cause problems with other things you are taking. I also use the homeopathic remedy Quietude. It particularly helps me get back to sleep if I wake up.
Hope you find something that works.
I am trying Lunesta now. I was doing better at first, getting six hours a night, but then it dropped back to the 4-4.5 that I was getting with ambien which is just a bit more than I get with nothing. I also take 1mg klonopin and my 150 lyrica at the same time right before bed and still nothing that is that deep restorative sleep.
But Lunesta I think is the one drug that is approved for long term use, though the others can be in certain situations (like ours). See if your doctor will prescribe you that since that shouldn't have side effects.
meditation breathing
no tv or computer one hour before bed to help my mind calm down
easy puzzles to keep me off my worries
Herbal tea (lemon balm or chamomile)---and check all herbals for side effects with an MD b/c some do play heck with meds
soothing scents (I can't stand lavender, but I find vanilla soothing, also a very very single tiny drop of jasmine essential oil at the other end of the bedroom---it's very strong)
and if I still can't sleep or stay asleep, I give myself an hour to get up, do stuff, and return to bed---sort of "break the no-sleep anxiety" pattern....
I do takea med that helps me sleep but it's really or prevention of PTSD nightmares, so....
No sleep is by far the worst thing I know. Been there, done that. BUt with my epilepsy meds, not much I can take. (argh)
Wish I had more than good iwshes, but that's what I've got...
I'm sorry, but a dark, fibro, place in my mind laughs at your doctor wanting to take you off Ambien because it MIGHT cause side effects! Good grief! has this person read the long lists of possible side effects of every drug we take?! I know, when I hear the cautions for drugs on TV ads, I wonder what daring person is willing to take something that could kill them. I think your doctor needs an education in FMS/ME. We HAVE to have sleep, even the wonky experience that passes for sleep in my life. It's better than nothing. Good grief!
Other than that I don't know why your doctor would want to change what's working.
Is this the same Doctor that originally prescribed it you you?
I would ask the Doctor what specifically is her reason for just taking you off of it cold turkey. Also does she have another sleep Medication that she can recommend or prescribe to you? Definitely talk to your Doctor and ask her reasoning behind her decision. Did you tell her that it helps you and that you have not had any negative side effects? I hope she can help you. Good luck.
I tried Melatonin and it put me right to sleep but I had really bad nightmares. (I have a problem with nightmares anyway, but the Melatonin made them worse.) It works very well for most people and was recommended by my physician and a sleep study I attended. Now I only use it for jet lag, but it did help.
My Mom, who also has Fibromyalgia, has been on Ambien for many years with success. She also takes Elavil for sleep. I think the side effect that your doctor is probably concerned about is sleep walking. My mom did have an episode where she went out to her car in the middle of the night with just a nightgown on (she lives in an apartment complex so her neighbor witnessed her) and she got a six pack of coca cola out of her trunk. When she woke up there were empty soda cans and she had no recollection. However, she is still on the Ambien and swears by it.
I also tried melatonin but it also did not work for me. Luckily since I went on HRT, the sleep has come back.
I take Cymbalta but found that I have to take it in the morning. If I take it in the afternoon, I cannot go to sleep.
I would just explain to your doctor how important the sleep is for you and if he can prescribe something else. I wish you luck.