Hi All:

As much as I HATE using prescription meds, I finally have to throw in the towel and consistently use something to deal with my Fibro flare. Even WITH the drugs I can't sleep b/c my hormones are so messed up.

Does anyone have any suggestions for 'scripts in Canada that increase stage 3/4 sleep? I've used Imovane but it gives me hives and muscle spasms. Desyrel also gives me insomnia.

As far as I can see, Ambien and Sonata aren't available in Canada. There's a non-pharmaceutical, natural product called Xyrem that's "controlled" and very difficult to get in Canada unless it's life-threatening. I'm not really sure what to get now. Anyone in Canada get Ambien?

Thanks,
Wanda

My husband has had fibro for the past 5 years, he is on Elavil for sleep (it's and antidepressant but it helps level 3/4 sleep), and when he wakes up during the night/early morning, he takes an Atavan to get back to sleep. He's been on this since almost the beginning, but his Elavil dosage has decreased dramatically, I think he takes 10mg or something like that now -- very low doe.

Sorry, I can't help but tell you that Ambien does work. I do the early morninig awakening thing, and it helps.

But, since I didn't/don't like being on that all the time, what I do if I am really having a problem is take two benadryl and one 3mg melatonin. Puts me out and I get a good night's sleep usually.

Thanks brpssm and quietone.

Brpssm, I'm sorry your DH has Fibro. I was lucky to have gone into remission for so long until recently. I'm scared to take the Elavil b/c it can cause weight gain and something else I can't remember. Darn brain fog. Grrrrr......

Quietone, I hear you about not wanting to be on these things all the time. Unfortunately, even the heavy duty stuff isn't working and my sensitivities to medications are really complicating things.

Is the Ambien stronger than Benadryl? I can't take antihistamines. I take the natural remedies like Melatonin, magnesium and 5-HTP (etc.) but they don't get the job done for me right now. Also, too much 5-HTP gives me nightmares. Higher doses of melatonin worries me b/c my estrogen levels are bottoming out right now for some reason.

I got a hold of some Sonata (fast acting for AM awakenings) and I've asked my Pharmacy to look into why I can't get Ambien in Canada.

I really wish I didn't have to go this route.

Thanks again ladies,
Wanda

Ambien is different. I don't ever wake up with that hung over feeling when I take it and I feel like I always get into the deep sleep phase with it.

Benadryl seems to promote my snoring, whereas Ambien doesn't. And Ambien seems to stop the restlessness I seem to get during the night sometimes.

When I have taken Ambien, I don't just wake up feeling refreshed because I slept, I also wake up feeling happy and content. Kind of like when you were a kid. Maybe that is from the refreshed sleep, I don't know. But I don't get that feeling from the benadryl/melatonin combination.

My sleep problem is early morning awakening, as is my DH's. For us it helps tremendously, but we just don't like the idea of "needing" it. My daughter has trouble getting to sleep, she seems to have a circadian rhythym problem, and she has to take more of it to help her then we do. It takes care of our problem with just 5 mg and my DH would sometimes cut that in half and it would still help.

I guess what it feels like is that the Ambien stops the Alpha waves intrusions, but none of the other stuff does that.

Wow quietone, that's sounds really good. The one I'm taking is zopiclone (Imovane) which also helps increase Stage 3/4 sleep, but I sure don't wake up feeling refreshed. For the first time, it's really not helping me and it always used to be my last resort. I hate the side effects; hives, brain fog, rebound insomnia.....

Yuck! Those are bad side effects. I don't blame you for not wanting them!

Yeah, it is good stuff. That's why it is so easy to get to liking it. There is no real addictive quality to it, except you like the way you sleep when you take it and you start thinking you will never sleep as good again if you don't.

Can you not order it only from a pharmacy in the states?

I'm looking into it through a local pharmacy to find out if there's any way it's available in Canada. I don't really want to deal with Customs if I don't have to, but I will if push comes to shove.

LOL, that's the kind of med I need right now. Are you sensitive to meds as well?

Very sensitive. Always have been. it's why I can't believe I find myself in this situation now where I need them. Frustrating part. My whole life, I hardly ever even took an aspirin, much less any other stuff. Now, it's rediculous. It seems like so long since I just was normal.

Hi Wanda. Thanks for the kind words. It has been really hard (as you well know), but we're getting through it. He is a lot better than the first years, but he has done/tried everything possible to try to change the situation. His current symptoms are localized aching pain/stiffness, but thankfully he doesn't suffer from the fibro fog, CFS-type symptoms, nor the stomach/nausea problems anymore.

DH was always the type of guy who had problems keeping weight on, if he didn't eat a lot of extra foods during the week, he would lose weight (He is 6'1" and was always around 180, but could slide back to 170 very easily). Now, he is at about 200, but he is much more muscular since he works out religiously every day since 1 year after getting FMS. Still, we've noticed recently that he is carrying a bit of flab around his belly and love handles and we don't know if that is age (33) catching up with him, or the Elavil. He wants to lose about 10 lbs and be at 190, which with his musle tone, would be ideal. Since being diagnosed DH also follows The Zone strictly (he's a Type A like many FMS sufferers so he does everything religiously no questions asked).

Weight gain is listed as a side effect of the Elavil, so it is very likely that a combination of the age and Elavil is giving him that extra layer around the middle.

Elavil also can cause dry mouth, but I don't know of any other serious side effects aside from the weight issue. That said, DH is on a VERY LOW dose of Elavil, others are on much higher dose. If you struggle with your weight, I wouldn't recommend it judging from what is going on with DH...

Good luck to you finding something that works!

Can I ask you what you did to get into remission from FMS? Do you have any advice for us? We've tried so much and read so much but we are always looking for ANYTHING new to try...

His current 'protocol' is:
Elavil and Atavan for sleep
Chiropractic asjustments every 3 - 4 wks
Guaifenesin protocol per Dr. St. Armand
Exercise every day (cardio + free weights)
Nightly meditation before bed

Hi Quietone & brpssm:

I hear ya Quietone. I feel like such a hypocrite sometimes. I hate medications, but I have to take them to sleep.

brpssm, hell if I know, I wish I could get it back. hehe Actually, I think I initially got it from a reaction to a cortisone injection that gave me RSD. Chronic pain for 2 years pretty much set it off. Eventually I went to an alternative doctor who straightened out my diet and put me on supplements. Things got better until recently.

This time around, hard workouts trying to make up for a thyroid that went kaput. I had to start thyroid therapy which caused huge problems with my adrenals since your adrenals have to be healthy before starting thyroid replacement. Tests showed normal adrenals, which obviously were incorrect. That's when the Fibro flared.

DH's protocol looks pretty good. I've just finished Dr. Teitelbaum's book and found it fascinating. He's a CFIDS/FMS survivor himself. The reason I read it is b/c my latest tests are showing hypothalamus suppression (low normal thyroid (FT3/FT4), cortisol, estrogen, progesterone, testosterone, and LH, low FSH). This happens from stress and the hypothalamus isn't able to reset itself. Of course, sleep is also controlled by the hypothalamus. It becomes a viscious circle of stress.

Has DH had his hormone levels tested? One thing Dr. T mentions is that Fibros tend to have low hormones even though they don't show up on tests. Thyroid replacement is almost a given on his protocol and TSH is a useless test BECAUSE OF the hypothalamus suppression. Lots of Fibros probably go undiagnosed for thyroid problems for this reason. The book made so much sense to me based on what I'm going through right now.

If he's doing everything right, then maybe it's time to find someone to help him with his hormone levels??

Ask away if you have any questions. It's great to learn from one another.

Wanda

Hi Wanda,



Not that I can recall...he has had so many damn tests over the past 6 years, it is insane, but again, I know you must know about that. Thank you for the tip, we will explore that with our GP (FMS supportive GP -- he is fantastic) at our yearly in April, and I will buy the book you mentioned as well -- thanks!

The last testing he had done was genetic testing and also some tests looking a rare form of basically food poisoning that sets in and causes symptoms similar to FMS. We were so optomistic that this new rheumotologist would find something, but alas, again, everything came back "you are a perfectly healthy person according to the tests." However, this rheumatologist did confirm/believe DH has FMS or some phantom disease like it, but he also said DH was already doing everything right, so there wasn't much more he could offer that we didn't already know. We learned a long time ago to try everything, but not get our hopes up too high about anything because it is such a let down when all the tests consistently come back as "congratulations, you are in perfect health." I know that sounds INSANE -- most people would be happy at those types of tests, but I also know you probably understand that feeling!

We were so optomistic about the genetics testing because DH got FMS from wicked food poisoning. He has come so far from his worst point so we try to stay optomistic about that fact. Things that did work for him were:

An osteopath/homeopath early on helped get rid of the nausea and gastro issues he had from the beginning. She did a history and was the one who pointed to the food poisoning as the root cause, so she used some arsenicum album to get rid of the "toxins". This worked well and really got rid of a lot of his issues to the point where his pain instead of being widespread and very, very acute became localizee in the left shoulder/neck and more like a dull pain and stiffness generally on the left side. This was a major improvement.

The Elavil/Atavan combination has helped immensely with his sleep. He is on very low dosages as he is not a person who likes to take drugs, so from day 1 his goal was to get off of them. He hasn't been successfull in getting off of them yet, but from where he started, the doses are the closest he can get to 0.

The chiropractic adjustments have really helped him with the pain and stiffness, but it comes back so the adjustments are a constant thing. Luckily, I have excellent insurance which covers all of the treatments -- that is a major relief for us since his chiro bills before we were married were 1500+ per year.

Exercise has helped a lot as well with the tiredness, stiffness and pain. He has never missed ONE DAY in 6 YEARS!!!! If that isn't discipline, I don't know what is -- not matter how tired he feels or how much pain he is in, he does it. I admire him so much.

We purchased a triggerizer and thera-cane to try to relieve the pressure points (there was a book on myofascial pain syndrom and FMS that recommended that). I rub his shoulders and neck each night for 30 - 40 minutes on the trigger points he points out to me to help releive the pressure. He says this helps a lot so we do it each night, but it is difficult on both of us. Thankfully he is working from home now, when he was working out of the house the "rubs" (as we call them) were lasting about 90 minutes each night, which took a major toll on me, him and our relationship for about a year. We are so lucky that he can work from home now, and that I have a very good job that if he could not work, we would still be able to live with some very minor cutbacks.

The Guai, the jury is still out for us on that one, he has been taking it for 2+ years, we do see improvements and changes and cycling, and we have noticed some general improvements in his "bounce back" abilities (i.e. if we have a rough day physically for him like a wedding or something, it used to take him weeks to bounce back to the level he was at before, but now it takes a day or two).

The meditation helps with sleep and calming the mind, he also does that every day.

There is a graveyard full of things that didn't work for him, but that's basically the list of things that he has had success on so far, but it's a daily struggle.

Thank you so much for being so supportive and helpful. It is difficult to talk about this with many people because they just don't understand what he goes through on a daily basis, and what we go through as a couple (we've been together since 18, so we've had 8 FMS-free years, and 6 FMS-full ones). With FMS, you can't take a normal activity like loading the dishwasher for granted and so many people don't get that, especially since DH is still young and looks like the picture of good health.

Sorry for the ramble, I guess I let it all spill out, eh??!!

Wanda-
I asked my Dr. for Ambien, and he actually went to his computer for 5 min. + came back saying that "Zopiclone" was the Canadian equivilant to Ambien. So - I have been taking Zopiclone.They are 7.5mg, but I only take 1/2. He said I could take up to 2 per night. No weight gain,constipation, or nightmares etc. I am never tired - no hang over affect in the AM. When I first started it has a rotten sour taste that you get after you take it, but I just brushed my teeth right after taking it. Now- I no longer get that horrid taste. I have tried so many kinds of sleeping pills, and these are the best, for me. I hope this helps you.

Hi Sunneywey:

I'm currently taking the Zopiclone (Imovane), but it gives me side effects like hives, constipation (as if it isn't bad enough), muscle spasms (took me years to figure that one out) and worsens my brain fog if I have to increase the dose from 2.5 mg. Taking half of the 7.5 mg gives me a hangover.

The Ambien is Zolpidem, which is the same family, but not identical. I'm hoping the Ambien won't give me the side effects that the Imovane does. When I lived in the US I took it and don't remember any problems, but who knows anymore with my brain fog. LOL

Brpssm, I so feel for your husband (and you). I think you'll find Dr. T's book very enlightening. It's an aggressive treatment though, be forewarned. But he's one of the good guys, so he knows what he's doing. Interesting thing about illness is that it suppresses the hypothalamus. I'll bet his levels are low normal and the doctors are saying he's a vision of health where his hormones are concerned. Low normal hormones are not healthy, I don't care what those tests say!!! I'll believe that when the labs figure out a way to only test hormonally healthy people for their reference ranges.

I hear his frustration. You live healthy and clean for years, you'd think you were the vision of health inside that you look like on the outside. Jeez!