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I need some feedback....
5 Replies
OneDayataTime - August 14

Hello all, this is my first post... I've mainly been reading thus far.. Forgve the lack of info, my hands are too bad today to do too much typing..
I suffer from what I KNOW to be fibromyalgia, have yet to get an actual diagnosis on paper... but three specialists "agree" that i fit the description of fibro. I also 'believe' that my illness had been caused by lfelong Ehlers-Danlos syndrome, which developed into chronic myofascial pain, and then into fibro... Seven years on the poision birth control, Depro Provera(years 14-21)destroyed my body further, and I blamed my chronic pain on the Depo.. I work 40+ hours a week, in a physically and mentally involved job and six months ago, I redid my kitchen by hand, by myself, and all hell broke loose... I'm happily married, no kids(happily).

I just want to know how many of you are at a steady level 3 or 4, maybe 5 during most of your days, and then as soon as you stop, BAM! levels 8, 9, 10... beyond... no sleep. 3 hours maybe... (amitrityline made me gain so much wieght.. after losing 50 last year, I'm not doing it to my body...)

anyone else feel like this? don't get me wrong, I have some flares that last for days, weeks on end, but say the other 70% of the time is as previously described...

feedback please and thank you!!!!
gentle hugs to all!
[3 [3 [3 [3


Fantod - August 14

OneDayataTime - Welcome to the board!

Unfortunately, everyone's experience with Fibromyalgia (FMS) is pretty much completely different. Hence, making it difficult to treat.
I'm completely disabled as a result of FMS and some underlying issues. My pain levels are consistently all over the map on a day to day basis. For example, earlier this week I was completely incapacitated as a result of pain and no sleep. Today, I've actually had a decent day. Makes it impossible to plan anything...

I hope that you are taking something else for sleep if Amitriptyline is out of the picture. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep to recover from the days activities. No deep sleep means higher levels of pain which becomes a vicious circle. You could try using Melatonin and Calms Forte which you can find at any decent health food store or even the Vitamin Shop. I use both as recommended by my doctor and it does help as long as I am not suffering from whirring brain (stress).

Also, for breakthrough pain you might want to try Curamin which is a spice (seriously). I use it everyday and it really does help a lot. You can find it at the health food store in capsule form. The brand I use is made by Terry Naturally. I really do notice a difference if I make the fatal mistake of running out temporarily. I take a capsule in the morning and one at night.

I'm not sure if my answers to your question about pain were helpful or not. I'm sure some of the other members will contribute as well. I hope that you will continue to participate. Take care and enjoy the rest of the weekend.


OneDayataTime - August 15

thanks fantod! i have tried melatonin, and I have yet to get more than a few hours sleep... it was pretty sad when I had to describe to my rheumetolgist all of the things you just said about brain


axxie - August 15

Hello ONeDayata Time, Welcome to our board!

Yes, fibro is different with everyone but does have it's cycles, one time you are feeling good and the next WAM it hits you hard. I find the weather also contributes on how I feel. As for sleep, my dear friend, I would love to sleep only finding it when my body relaxes enough. Sometimes like Fantod, my brain goes into a vicious cycle of high intensity then no sleep.

There are medication that could help you with the pain and your sleep. The first thing to address is to sleep. Amitriptyline is of no use as far as I'm concern. The better would be a medication such as Cymbalta or prefer your choice of others and a sleeping aid.

A good sleeping aid, that you can try over the counter is Benadryle, I often resort to this. I have taken Desirel that helps with sleeping and also calms you down, in short theory it suppose to help with you feeling less pain, because you sleep and thus your body should have rested.

I find that a good green tea after your last meal of the day will help you cleanse the toxins in your body. It's not a miracle worker, but it helps.

You should follow up with your doctor and see what they can give you to help you cope with fibro.

I wish you good luck and do write back and let us know how you are doing.



Noca - August 15

Good sleep aids IMO are Imovane, Lunesta, Ambien CR, Trazodone, Xanax, and Temazepam. None of those sleep aids I listed have weight gain as a side effect. I personally use Xanax every night, 1-2mg. It has worked every night since March.


OneDayataTime - August 15

thanks everyone! I do have a follow up with my rhuemie, my bone/joint doc, and I have an appt with a neurologist all coming up within then next months... hope you're all having a low pain day [3



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