Need some advice from someone with fibromyalgia

[AuntieM1957]

About 6 years ago, for want of better, more clear diagnosis - my rheumatologist said she "suspected" fibro.

But, I've been doing pretty well since. I had some food allergies, and exercise regularly, take good care of myself. Most people are surprised there is anything "wrong" with me.

Lately, however, I am so tired. I am sleeping at night. But still about 2PM everyday I feel like I'm going to fall asleep wherever I am. The rest of the day is an absolute battle to stay awake.

I don't want to start crashing too early. Well, I can't on days I work. But even when I'm home, it's not a good idea to sleep during the day. When I break my sleep routine, then I develop insomnia.

I know chronic fatigue is an element of the "syndrome", but I've never had it like this. I'm not someone who sleeps in a chair or is likely to fall asleep at the drop of a hat. It hasn't happened yet, but I've almost fallen asleep in meetings.


Does anyone else suffer from something like this with fibro? I'm beginning to wonder if I've got something different going on - since this is a new element for me. Takes month to get back in to see the rheumatologist, and my internists says my tests results show actual improvement.

By the way, the pain is actually improved - physically I feel "OK" - just exhausted.

[REP]

1. I Don't Have FM BUT...

I do have severe sleep apnea. When I first started having the symptoms, mainly excessive daytime sleepiness, exhaustion and troubled sleep, I was told I was "too young, too thin and too female" to have sleep apnea - so don't think it's only older, heavier men who have it; it's underdiagnosed in women. Mine's quite severe, but milder sleep apnea can cause profound symptoms of excessive daytime sleepiness.

You might want to ask your doctor about this the next time you see him/her. An overnight stay at a sleep lab isn't alwasy necessary for diagnosis; I was diagnosed easily with a home oximetry unit, which is a little box with the a monitor that's worn on the finger overnight, then taken back and the results read by the technician. The oximeter will detect apnea (not breathing) and hypoxia (low oxygen) and if a diagnosis of apnea is made, it can be treated with a CPAP (continuous positive airway pressure) or BiPAP (same thing, only the pressure lessens when you're breathing out).

Sleep apnea is a very serious condition; untreated, it can cause permanent damage to short term memory, stroke, heart attack and/or death and can contribute to automobile accidents.

[mopinko]

2. read my threads about sleep, and

get thee to a sleep doctor if at all possible. sleep is a wonder drug. lack of sleep is a persistant poison. you often are not aware of your sleep troubles. do you have restless leg? are your blankets on the floor in the morning? do you have a bed partner? if so, what do they say?

[AuntieM1957]

3. I went to a sleep clinic, but they didn't give me a report

orally, they told me I reached REM sleep.

The clinic staff was a bit flaky - and messed up my second visit.

Because the first one had been such a fiasco, I blew it off.

Beginning to think I should try it again.

Thanks to you both for the suggestion. I'll mention it to my doctor - and see if I can get a referral so my insurance will cover it.

[mopinko]

4. a study is not everything

they are a kind of crude tool, anyway. and i would recommend a sleep doc, either way. i find little understanding of sleep among other docs, even shrinks, for the importance of sleep. i also find other docs to feel there is not much that can be done, while the sleep doc told me that almost everyone's sleep can at least be improved.
and you don't need any doc to improve your sleep hygiene. dark windows, low temps, raise the head of the bed if you snore, and try those nose strips, and maybe a contour pillow, no pets if they disturb you, all those things add up to better sleep for anyone.
what are you taking/doing for your fibro now?

[u4ic]

5. It's not just REM sleep

specifically, it's stage 4 sleep - the deepest - which is often disturbed, and someone suffering from Fibro may not stay in that stage for long enough.

When I was at a stage similar to yours (but the pain was increasing, as was other symptoms - I have CFIDS too) I went on sleep meds. It may be a last resort for you. I take zopiclone (imovane) and tryptophan.

I also practice the good sleep hygiene thingE...I wear earplugs, a sleep mask and have the room cool at night, which improves it for me. I get a terrible sleep if I have ear problems and can't wear the plugs.

[Ayesha]

6. Chronic fatigue

My partner has fibromyalgia and CFS, and the fatigue is far more debilitating than the pain. She is no longer able to work at her old job as a preschool teacher - not due to pain, but because she needs frequent naps and physical exertion exhausts her. She is napping at 4pm as I write this. She takes a medication called Provigil which helps with the fatigue, but it stops working if she takes it several days in a row. Still, using it a few days a week has been a lifesaver for her.

There is a sleep disorder associated with fibromyalgia. Getting a sleep study done would help with diagnosis, and rule sleep apnea in or out as well.

I'm really sorry to hear that you're dealing with this type of fatigue. It sucks, there's no way around it. :(

[radfringe]

7. after 12 years

I was diagnosed with fibromyalgia too... and am looking for a new primary care doctor. My current one just wants to write me out prescriptions for drugs that don't do anything

most meds haven't helped - except for the mega-la-la's that just knock me out. been through chiropractors, pain management, etc. etc. etc.

mainly seems to kick in when rain/snow is coming - worse it hurts the bigger the storm (I usually start aching about 3 days prior to a storm event -- started aching yesterday, so I'm keeping an eye on weather reports for precipitation moving into my area)

I hear you about being tired... 2-3 in the afternoon I'm ready to curl up under my desk at work and take a nap....

Then there are the other times where I feel like I've been dragged through a knot hole backwards and beaten with a baseball bat

One thing I found that helps with some of the pain, some of the time is the blue emu lotion/cream or some new stuff out there called Blue Goo (cheaper than blue emu)

Do you get the restless leg syndrome? It's not all that "bad" for me at the moment, usually a couple of motrin/IBU's help cool it out.

[hyphenate]

8. You have a number of things going on at the same time,

it seems.

First, both Chronic Fatigue and Fibro are essentially two different manifestations of the same illness. Doctors lately have found that usually a patient with one will eventually have the other. Sleep difficulty is actually part of the illness itself--not being able to get to the level of sleep where the body heals the tiny tears and rips in the muscles and tendons--the continual injuries to the muscles, tendons and other parts of the body keep a patient in pain and no healing occurs. Eventually, the body wears itself out as a result.

The CFS will be more prevalent in some people, while the fibro symptoms will be more pronounced in others. Two sides, one coin.

However, there are others factors to take into consideration. One--is there a chance that you might be diabetic or borderline? Being diabetic and not being in good or even adequate control of your glucose level can run you into the feeling of utter exhaustion on a continual basis. Recently, when my glucose levels were out of this world, I could barely move I was so exhausted. I didn't even associate the fatigue with the diabetes, but once my glucose levels once again reached a more manageable place, the overwhelming exhuastion was somewhat relieved, and I started to have more energy. It's still a long way off from being great, but I'm doing better. So if you aren't sure, check with your new doctor when you get one, and see if you are in that grey area if you don't know already.

Another possibility is depression. A clinical depression will wipe you out quickly. A patient will find themself sleeping during the day and be unable to stay awake when they need to, and find that sleeping through the night is impossible. This is more due to the depression than the fibro. On the other hand, either Elavil (amitriptyline) or Flexeril (cyclobenzaprine) can be prescribed to take at bedtime and will help you sleep through the night. Elavil is one of the proven medications for FMS and CFS right from the very beginning. Flexeril is in the same class as Elavil, and will achieve the same effect.

One cardiologist that I saw wanted me to walk 3 miles a day. I told him that I had fibro and could not walk that far. He told me he didn't believe in fibromyalgia. Guess what? It was the last time I ever saw him. NO ONE can not believe in something that has now been proven to exist. I was diagnosed early in the game--in 1993--because I did research and knew more about it. When a doctor tells you he doesn't bellieve in an illness, or when he treats it lightly, it is definitely time to get another doctor.

You might want to check out a couple of websites, including www.webmd.com, which will give you a lot of material on the illness and the other symptoms will will often be present at the same time. Everything from IBS, GERD, memory lapses (famous "fibro fog"), and more are now attributed to fibro. You might also want to check out the National Institute of Health for their pages on fibro and CFS. I might be wrong, but I believe the main address is www.nih.gov.

Hope that helps. And good luck.

[BlueStorm]

9. I suffer from fibromyalgia

just got diagnosed last year.

And yes, I suffer from the fatique more so than the pain. I often go to bed at around 2am and fall asleep an hour or so more. I get up around 2 or 3 pm in the afternoon and still feel tired. It always seems that I never get a good night's sleep. I have had a sleep study done and I have sleep hyponea so I am supposed to use a breathing machine. (Haven't been using it lately because I haven't been able to go to the clinic and get it fixed.

I try not to exert myself and take it easy or otherwise I will be very tired.

[hyphenate]

10. self-delete