Teen with fibromyalgia? and apnea - help needed

[Cat's mom]

My 16 yo daughter was diagnosed/started therapy for apnea at the end of June. She was referred to a sleep study because of widespread pain and a disabling level of fatigue which was diagnosed as fibromyalgia. She's been really compliant with therapy and has seen progress with both the fatigue and pain, but only a little progress (if she rated both at a 10 before CPAP therapy it's an 8 now.) She's also taking Cymbalta & Neurontin, she was in physical therapy for 3 months none of these have helped.
I'm starting to doubt the fibromyalgia diagnosis. (I've got a form of arthritis/auto-immune disorder called ankyolosing spondylitis - her rheumatoligist doesn't think she has this but I'm not sure, just to complicate things further.)
So my question is has anyone else started CPAP therapy via a fibromyalgia diagnosis, and what was the result? I'm not doubting the apnea diagnosis, or her need for CPAP, I'm just not sure it's the cause of the fibromyalgia as the docs seem to believe, and I'm also doubting whether she has fibromyalgia at all.
Any thoughts would be appreciated,
Heather.

[nanwilson]

I have had both..but no longer seem to have fibro. It seems once I got good restorative sleep, the fibro kinda went away, betcha I never had it in the first place .
good luck
Nan

[BlackSpinner]

Some people have had success by removing gluten from their diet too.
Ask about having her tested for gluten intolerance and Celiacs. It doesn't always present as IBS.

[kaiasgram]

Cat's Mom -- If you're interested I can retrieve a couple of links to an explanation of why doctors are now starting to attribute fibromyalgia to sleep apnea (it has to do with a unique EEG pattern that they see during what is supposed to be delta sleep). This may not be the case with your daughter which is what you are suspecting, right?

I have a couple of other thoughts. One is that she may need more time on cpap therapy to show better remission of the fibromyalgia -- or fibromyalgia type pain. Second, are you getting good data from her cpap machine -- do you use software to monitor her therapy so you know if her AHI is improving and her pressure settings are optimized? If the cpap is not yet fully treating her apnea then I would not expect to see a significant reduction of pain.

As a mom and grammie I know how hard it is to see your babies suffering -- I hope you get the answers you need and your daughter gets the relief she needs soon. Kudos to her for being a teen who is accepting this diagnosis and treatment with such apparent grace.

[archangle]

Well apnea screws up everything with your body. It's a lot like accelerated aging.

I don't know about the link with fibromyalgia. I think fibromyalgia is still pretty much a mystery in terms of what causes it. Or diagnosing it for that matter. I think there's no definitive test, just lists of symptoms.

[Julie]

Watch her for a while when she's asleep - if her mouth opens even a little bit she's going to lose therapy air, so may need a 'full face' mask.

[purple]

There was a study in a Nordic country where the researchers would wake up the test study subjects whenever they entered REM Sleep. A large percentage of them developed arthritis pain. At the end of the study, the study subjects slept for a few nights. Arthritis pain gone.

Here, in the US, where I live, all health care is directed to make someone money, not necessarily to solve health issues. I believer doctors really want to do what is best for the quality of life of the patient, but the tools they have, and thereby the doctor's training is based upon products to make money for someone. When the government gets involved they try to control costs by restraining prices, like flu shots. Flu shots have a good effect on the population as a whole, but government pricing can actually cause shortages, and then later, - I suspect that government has agreed to accept the losses of flu shot manufacturers if the shots are not used. New patent drugs are created more for the goal of reaping huge profits for drug companies than they are more effective with less side effects. For decades the drug companies chose not to make new, designer antibiotics because they felt the cost of investment versus the payback was not to their best bottom line. We now have a new strain of antibiotic resistant of TB as drug companies are certain that the government will set pricing on the product. If drug companies could have charged thousands of dollars a month for treatment, then we would have the currently needed antibiotic.

I have alleviated mask marks by washing my face with ivory soap in the morning. Truth is, I am proud of my mask marks and I am glad to tell anyone who asks about the marks about sleep apnea therapy and how it has improved my quality of life. I doubt if a teen age girl will have that attitude. One of our forum member has a business making things to make sleep apnea treatment easier, less painful, and with fewer marks. I have no affiliation with her business, just she is known on the forum as a honest person who makes good products. Her website is http://padacheek.com/

Karen often shows up on the Chat forum every evening. If you want, I believe she would be glad to speak with you on the phone and help you with whatever advice, special products which you might want.

I have multiple health problems, each amplifies the symptoms and negative effects of the others. I have found that I need to tweak each of the treatments to obtain the best overall benefit to my health. Such as, with sleep apnea my doctor was happy when I had an AHI of less than three, their goal is less than five. To obtain restorative sleep I found that I had to get my AHI to .2 or so, with a nearly zero leak rate.

While I have never liked Tylenol (or as I buy it, generic Acetaminophen) as a pain killer, when I was in Boston a doctor said some interesting things about it.

If one takes Tylenol, then in 15 minutes of so, one might have some relief of pain. Yeah I know, for real pain it seems next to nothing, and unacceptable to me as a person to have such little relief. The doc said though, that if one takes Tylenol at its maximum dose for ten days or so, then one gets a blood level. At that point the patient gets a huge improvement in pain control. It was then, in the 1990's used in the chronic pain centers for those dying of cancer in place of Morphine and other narcotic drugs which were always thought to be more effective in pain relief. Since then the maximum dosage level of Tylenol has gone for 4 grams to three. I try to prevent liver damage by taking multi-vitamin multi-mineral supplements. The other good thing about using Tylenol, is that it can often be taken concurrently with other pain meds, with the consent of your doctor. When I had open heart surgery my doc told me that it is easier to keep pain under control than to get it under control. Make list of a specific time of when to take doses of pain killers and stick to it, without consideration for how one feels at the time when the dosage needs to taken.

When I go to sleep at night I take two five hundred Mg. Acetaminophen and sleep about four hours fifteen minutes, when the blood level goes down, I wake up, even though I can not tell you which joint hurts.

Gotta get to the supermarket. Best wishes.

[RandyJ]

Some people have had success by removing gluten from their diet too.
Ask about having her tested for gluten intolerance and Celiacs. It doesn't always present as IBS.

I second this. Actually, IBA (Intestinal Barrier Assessment) testing for the 22 most common foods, gluten included, is quite inexpensive. People describe living with chronic pain that went away when they eliminated gluten. I didn't have pain, but rather a general feeling of heaviness throughout my body. A week after eliminating gluten, my body felt incredibly lighter, as though I had lost 100 lbs. There is also a CRP test that measures inflammation in the body.

A simple blood test. Worth a shot.

[Julie]

If you take Tylenol at a high dose every night you're likely to end up with liver problems and a chronic headache (yes, a 'backlash' headache).

[SleepingUgly]

There is a correlation between SDB and fibromyalgia (google UARS and Avram Gold for that). She may have both, or she may have pain due to nonrestorative sleep or low D3, or any number of reasons. After she is on effective treatment for awhile, you will see what is left over.

[purple]

If you take Tylenol at a high dose every night you're likely to end up with liver problems and a chronic headache (yes, a 'backlash' headache).

Julie you make an excellent point. We are all prone to liver damage from Tylenol. We can add potential kidney damage as well to the list of side effects. My doctor told me that a reasonably healthy liver, (and he was looking at my blood test results when he said that), could dispose of a a lot of the toxic effect of Tylenol. Once the liver is overtaxed, even a little Tylenol will kill a lot of liver, and without discernible symptoms to the individual as the liver is dying.

We all have individual variation in response to drugs/food. Even though I do not have a headache from Tylenol, I have no doubt that if anyone says they do, then they are speaking truth.

No doubt if the only heath problem I had was arthritis, and I took the levels of Tylenol I take that I live long enough, then some day I will lay on a couch doing dialysis. To an MD, Tylenol is less likely to create secondary problems than nearly any other drug doctors have.

Insofar as diet. RA, a popular form of Arthritis often has it's symptoms driven by things like the additives, preservatives in processed meats.

A number of years ago a Dr. Sherry Rogers wrote books about "Environmental Illness." I doubt if you daughter has EI, but the books have long sections on how to create a diet to isolate which food might be causing the problem. Might be worth a checking out of the library. Dr. Sherry Rogers, is to a lot of doctors a heretic. Today we have far better blood tests to detect problems related to inflammation.

A heretical website is http://www.lef.org/, which has an archive of articles related to nutritional supplements. As others have observed, it is bad idea to accept the recommendation to buy products from a company who is also recommending the products. but they do have enticing articles on a lot of health issues. As they say in the law, "Let the buyer beware."

[ems]

Hi Heather... I'm a mom and a grammie, so I know how difficult this is for you and your daughter. I think I have more aches and pains since starting CPAP also, but then I'm just a bit older than your daughter. I was diagnosed with mild fibro several years ago... could be moderate now. I have no idea if this therapy has made it worse... it's only air, but I don't really know.

I do want to mention that Cymbalta is a heavy duty antidepressant. If she ever decides to stop taking it, it's important she do so very, very slowly. The recommendation on that is 10% of your current dose every 3 - 6 weeks, and sometimes longer holds are advised.

Much good luck to you both!

[Cat's mom]

Thanks for all the replies - they're really helpful (sorry I didn't respond earlier, the teenagers in my house seem to always have the computer, so I don't get it very often!)

I have seen the studies on inducing arthritis like aches and pains by disturbing healthy subject's sleep. It's the one thing that's kept me hopeful that maybe CPAP will hold the key. I'd really be interested, Nan, in how long it took for your fibro symptoms to go away after you started getting effective CPAP therapy.

She does use a full face mask, after some very helpful assists from Karen & Padacheek that finally made her FFM work for her. Also, Pugsy hooked me up with software, so I've kept an eye on her AHI - it's been good right from the start, dropping from 17 during her sleep study to an average of around 2.5 to 3.

The gluten reduction is probably where we're headed, but I feel like I really need to exhaust every other road first. The poor kid has had to quit her job, and isn't able to go to school full time because it would just be too much. Anyway - she handles it pretty well, the one line in the sand she's drawn has been not giving up bread. I've started to lay the groundwork for her to start looking at it as a choice - you can give up gluten and see if you feel better or you can continue to feel miserable and not be able to do the things you want - but she's not there yet. That change, and making those related to the use of chemicals in her environment wouldn't be that hard to make for us - we live in the U.S. too, but we live in Vermont, the co-op 5 minutes from my house has tons of gluten-free stuff, all the beef we eat is grass-fed, raised by a friend - so we're part way they already.


Kaia's gram - I'd love to have those links to the studies on fibro and EEG patterns.

Thanks for the thoughts on the Tylenol, both pro and con. (I didn't mention the trip to the doctor on Friday for migraines that they think could be a backlash from the Tramadol she's been taking for pain.)

(She's on the couch next to me right now... I whacked her leg as she started snoring, "WAKE UP! " "I wasn't asleep." "Were too" "Was not" *sigh*)

Thanks again everyone, and thanks for letting me vent.

[SleepingUgly]

I think if there's a serious possibility of gluten intolerance, you should have her tested for Celiac disease. The test cannot be done while she's on a gluten free diet, so don't go off gluten before you have it done. While some people are sensitive to gluten without having sprue, and may elect not to eat gluten, but that is not the same thing as knowing you have celiac disease and HAVING to avoid all forms of gluten.

[kaiasgram]

Hi Heather, here are two links to a brief informal discussion about fibromyalgia and sleep apnea. The sleep tech in this video is a dedicated professional who's been quite helpful to me in my cpap journey, and he's a nice guy to boot. The first link is a video where he's discussing the subject, and the second is the fibromyalgia page of his website that he refers to in his video. There is scientific research on the relationship between SA and FM, my impression is that the verdict is still out but I think the sleep disorder causing fibromyalgia (and other) pain hypothesis has some merit. I hope you find it interesting.

http://www.youtube.com/watch?v=5be-POhSgEc

http://www.freecpapadvice.com/Fibromyalgia_Sleep.html