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Very confused
8 Replies
sleepingin91 - August 30

Hey guys!
I'm 19, got diagnosed with fibro a couple of months ago but my rheumy says I've probably had it since I was about 11. Luckily mine is quite mild, I am in pain most days but it isn't debilitating, more just annoying. I'm on Mobic (antiinflammatory), Nexium (proton pump inhibitor), the pill (Juliet) and Tramadol and Panadiene Extra for pain.

I've always had trouble with sleep but in the last two weeks it has gotten much much worse, to the point where I am getting barely 3 hours a night. Now this is very inconvenient as I have a bucket load of assignments and mid-semester exams currently. My mum got me Dozile (an over-the-counter sleeping aid) and it helps, but I can't take it more than 2 times a week (pharmacist said so), and then I went to the gp because it was getting worse. She prescribed me some temazapam 10mg and it did NOTHING! I couldn't believe it!

I finally got onto my rheumy today (he was on holiday previously) and he said that he didn't feel it was related to fibro and therefore couldn't really do anything.

Now I am confused because looking at other threads it seems like everyone is on some form of sleeping pill and all the information I have read seems to say that sleeping issues are directly related to fibro! My rheumy is nice and helpful, he doesn't want to put me on Cymbalta until I want to, which I don't at this point, so I don't feel as if I need to see a different one, but basically I am unsure of what to do about it!? Why is he saying it is unrelated?


Noca - August 30

Maybe your rhemuy is misinformed. I know I struggle with sleep every night for the past 5 years. Sleep aids leave much to be desired anyways. 10mg of Temazepam isnt that much. Doses usually range between 15-30mg. Ask your doctor for some Lunesta, that should knock you out and keep you asleep for 7-8 hours.


sleepingin91 - August 30

I've decided that I am going to see someone else to see what they say. I don't wanna be stuck with a dr that doesn't understand the condition.


mm30 - August 30

hi sleepingin91,
I am sorry your having trouble and not getting some relief. i feel your pain.:( do you think your ability to sleep might be affected by all your assignments and stress with work load?

not to take from you but i myself have terrible trouble sleeping. Even when going to bed shattered i would lie there for hours. xanax x 2 (250 mcg each) usually knock me out.
was supposed to start back teaching today but got a call last minute and ive been made redundant. i was MEGA stressed and upset going to bed last night. xanax was not working and still lay there till four in the morning ( time difference is five hours ahead here in ireland) in the end four (low dose) xanax knocked me out.

very frustrating.
i hope you find something to help you.
just had a thought, are you studying right up to sleeping time. i know when i was in college there was no getting to sleep if i was too active up until that. my mind was raching. i definately needed a bath or some wind down time in between.

best of luck



toots2889 - August 30

I agree with mm. I think your drs. think this is because of school exams, and thats why you cant sleep right now. When reading your post, it was the first thing i thought of. That being said, they probably want to wait to see what happens after your exams are done, to see if you fall back to a normal sleep cycle. If you dont, then im sure they would give you something. Good luck.


Stacey373 - August 30

Hi Sleepingin - I have to agree with Noca. Sleeping problems are one of the major symptoms of Fibro and I don't necessarily believe it is because of your school stuff. Unless you can directly relate not sleeping with studying...I would think it's more likely a fibro problem. And if your doctor knows anything about fibromyalgia...he should know that we suffer from sleeping problems. If he doesn't know this, maybe you should look into seeing a new doctor who understands all the symptoms of Fibro and who is willing to give you the meds you need.

You need to talk to your doctor and maybe even print out some information about this and take it in with you to show him. Sometimes they need to see the information in "black and white" to understand that this is a real problem or symptom of Fibromyalgia. Not all doctors understand Fibro and we need to "teach" them!

If nothing else, try buying an over the counter sleeping pill that you CAN take every night (not just twice a week) And if you can buy it where you live (I might be wrong, but it sounds like you're not in the US)...try taking a shot of Nyquil Cough along with the OTC sleeping meds. Just make sure it's the cough formula because it doesn't have any tylenol (acetaminophen) in it like the regular Nyquil cold and flu formula.

I hope this info helps. let us know how you are doing. Take Care, Stacey :o)


Fantod - August 30

sleepingin91 - You definitely need a new rheumotologist. There are still plenty of doctors out there who are not up to date on the current treatment protocols or think Fibromyalgia (FMS) is a figment of our collective imaginations.

First of all, why are you are Mobic? There is absolutely nothing inflammatory about FMS. Unless you have an underlying condition like osteoarthitis, you should not be on it.

Secondly, FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Deep sleep is required to allow your muscles to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. The fact that your rheumy thinks sleep issues are not related to FMS is very telling. Obviously, the doctor knows nothing about it. Treating sleep issues is a basic and crucial part of managing FMS. You should be on Amitriptyline or another sleep aid. Until you can get into see another doctor go and buy some Melatonin and/or Calms Forte at a health food store. I use both together to help me sleep.

Only certain classes of prescribed medication work for the pain associated with FMS. OTC remedies do not. You should be on a low dose of Lyrica, Cymbalata or Savella. However, Lyrica would not be my first choice as weight gain seems to be very common. I've used Cymbalata for three years with pretty decent success. Savella is new to the US market but it has been used in Europe for decades.

The key thing to remember is that the longer a chronic pain cycle continues, the harder it is to stop or manage. That is why I am recommending that you get on daily medication even though your symptoms are mild. FMS is variable and your symptoms may worsen over time. Better to address it now before things really get out of hand.

You can find a list of fibro-friendly doctors in your area by going to the National Fibromyalgia Association website. You could also call your local hospital physician referral service and ask them for a recommendation to a rheumy that has an interest in FMS.

Good luck and let us know how you do with a new doctor. Take care.


sleepingin91 - August 31

Thanks for all the info guys, you don't know how helpful you all are!!!

-Firstly I personally don't think the sleeplessness is stress related because I'm really not that stressed at all. I normally get super-stressed over tiny things, but big things like assignments don't seem to worry me, at least not yet!

-Fantod - I was put on Mobic before I was diagnosed, and then my Rhuemy just kept me on it. I never noticed a change in my pain when on it so yeah, I don't really understand why he kept me on it.

And also unfortunately I am Australian and therefore that site doesn't really help :( I've tried to find something similar for Aus but no success. I am trying to get an appointment at a Pain Management & Rehabilitation centre which I already have a referral to because they apparently have Fibro specialists so hopefully that'll all work out.

Thanks again guys!


Fantod - August 31

Go on Google and type in the name of your city and fibromyalgia and see what pops up.

Also, the drug "Milnacipran" should be available in Australia. It is called "Savella" in the USA and is used to treat Fibromyalgia pain. Milnacipran has been used in Europe for decades so your doctor should be familiar with it. Take care.



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