Any FMS People Having Trouble With CPAP?

[Mytigodess]

Last year I was diagnosed with fibromyalgia by my Internist. I suffer from chronic pain. There are some days when the pain flares get intense. I also had my first seizure in Feb 2010 which caused me to sprain my ankle that is still not completely healed. That brought me to the ER where they said it was a seizure from what I described and referred me to see a neurologist. My neurologist sent me for the study because he believes a lack of sleep was the cause of the "fibromyalgia" and "seizures" (putting quotes around them because he does not believe the diagnosis given by my Internist or the ER visit).

I have severe OSA (90+ events in the sleep study) and my oxygen sat rates go down below 90%. Before the study, I knew I had issues with sleep. I don't fall asleep quickly and when I wake up I can't get back to sleep quickly...but at least I am able to get some sleep in...at least I was before CPAP.

I have never been comfortable with being touched in my sleep. It wakes me up. I have been married for 19 years and my husband and I have been sleeping with a few pillows in between us so he doesn't wake me up when he rolls over and accidently hit/elbow me, wrap his arms/legs around me, or in any other way touch me. That wakes me up and then I have a hard time going back to sleep.

I have been using this since May of 2010. For the first 3 months I have been consistent in using it everyday, but it has been interfering with me going to sleep and staying asleep. I even find it hard to sleep taking the Ambien when the mask is on my face. I am going on to my fourth mask change next week which will have a mouthpiece/nose pillow feature. I have been trying to make it work including making a CPAP cozy to put something more comfortable between my face and artificial plastic/rubber. However, when my face really hurts or I need sleep like when I take my final exams at school, I don't use the mask at all just so I can get some sleep.

For about 2 weeks I stopped using CPAP while preparing for finals. I had not felt that rested in a long time. I was also switched to Gabapentin that helped with the seizures and some of the FMS symptoms and made great improvement. I have not had a seizure since and the FMS symptoms are greatly reduced. Then I started to use the mask again and I am back to square one. I can't sleep with it and now the pain has intensified.

Is this a common thing with FMS that getting use to the mask might be harder or impossible?

[Bons]

Try using the mask and machine while you are awake, calm, and away from your bed. Sit in the living room with it on and read a book or watch tv to distract you. Perhaps that will help you become more comfortable with it at night.

[Mytigodess]

Try using the mask and machine while you are awake, calm, and away from your bed. Sit in the living room with it on and read a book or watch tv to distract you. Perhaps that will help you become more comfortable with it at night.

Thanks for the reply. Actually, I have tried that, consistently for the first month. I didn't help.

[brazospearl]

Welcome to the forum, Mytigodess!

I'm sorry to hear you're having trouble with your cpap therapy. It would help us provide better suggestions if you listed your equipment in your profile. What machine are you using? Do you have access to your data? Which masks have you tried? Have you tried any of the lab rat fixes? We can help you make this work, but we need more info!

I, too, have chronic pain, and it is HUGELY reduced since I started cpap. While I've never had an actual diagnosis of fibromyalgia--didn't think a diagnosis of another condition that can't be fixed would make much difference--I certainly had most of the symptoms of that condition. Since I began getting effective cpap therapy the difference is astounding. My sensitivity to touch is greatly reduced; even my massage therapist commented on how the change in my skin/muscle reactions. Your situation sounds more complicated, especially with the seizure problem, but once you get your therapy under control you can expect improvement in all those matters.

If you therapy isn't working you probably have the wrong machine, wrong settings, wrong mask, or need to adjust the other associated stuff like your pillow and hose management. We'd love to help, so please give us more information.

[Mytigodess]

Thanks for the feedback, brazospearl.

Right now I am between masks; will be fitted for a new one later next week if they actually get back to me...an ongoing problem with the supplier has been them not returning calls, but it is the only one my insurance deals with locally.

Machine: REMstar Pro 2 C-Flex CPAP Machine
Humidifier: REMstar Heated Humidifier
Software: DataRest Compliance Software Kit

The pressure setting is on 12. I have tried it with the humidifier (on all levels) and with the humidifier off/detached.

I have been on the full face mask with a both soft-gel and comfort-gel seals and the nasal pillows without a chin strap. The one I am supposed to be fitted for next has the nasal pillow (soft-gel) with a mouthpiece.

My AHI range with the full mask has been between 4.5-8.5. The air leak with the full mask is significant when I fit it so it does not hurt my face (over 5%).

With the nasal pillow the AHI is under 2.5 and the air leak is over 5% when it is fit to not hurt my face, over 10% when it is fit because my mouth often opens and it hurts, too.

I don't have a problem with the noise it makes; actually I like the white-noise effect. I don't have a problem with the pressure setting as it seems it is doing its job of keeping my airway open in my throat; although sometimes it feels like I can't breathe when my allergies or asthma are in active states. The machine and the setting seem fine. I think the problem is more of a mask/strap one.

The problem is the sensation of being touched, especially by anything plastic. By loosening the straps, the air leak rates go up and it seems to lessen the pressure going down my throat and the beeper goes off to notify me of the air leak. By adjusting the straps where the mask fits: full mask hurts my face, nasal pillow feel like it is tearing my nose...both feel like the plastic part is burning my face, a feeling like the pain is more intense than it should be for what it is, and a sharp and tingling sensastion (allodynia, hyperalgesia and paresthsias pains). On days when the pain flares are especially over the top, I am in tears when touched.

So I was wondering if anyone with FMS has found a workaround solution to dealing with the pain of wearing a mask/pillow. So far, I have tried making a CPAP cozy around the plastic straps and trying to put a cotton cloth between the gel and my face. The problem with those methods is they need constant adjustments throughout the night and tend to get wet with rainout (I have also made a hose cover to deal with most of that and elevated the hose which eliminates most of that problem, but I still get wet).

The nasal pillows at least have less plastic to face ratio than the full mask, so I think the full mask won't work. With the nasal pillow, my mouth tends to open, so I will be trying this with a mouthpiece instead of a chinstrap so there will be less plastic touching my face. I am hoping this solution will work in keeping my mouth closed while the straps are secure enough to keep it in place, but there is still the issue of the plastic straps which secure it that touch my face. Are there any places which make a cloth and padded cover for these straps?

[nanwilson]

HI THERE
Sorry to hear you are having so many problems. My fms has gone since using cpap,
so hopefully yours will at least lessen once you have caught up on your lost sleep.
If you search padcheeks you will see their mask liner and strap covers, if you are at all handy you can make your own strap covers out of fleece. There are also mask liners called Remzzz, just do a search. Depending again how crafty you are you can make your own. I use (cough-cough) old well washed cotton undies they make perfect liners, you can also use old white t-shirts. I use them 2 or 3 nights then toss them into a wash bag then into the machine. As a matter of fact I just made up a bunch of them this morning now I'm good for another couple of months.
I wish you good luck on your journey, it takes mega patience and persistance to get there, but get there you will.
Cheers
Nan

[Mytigodess]

HI THERE
Sorry to hear you are having so many problems. My fms has gone since using cpap,
so hopefully yours will at least lessen once you have caught up on your lost sleep.
If you search padcheeks you will see their mask liner and strap covers, if you are at all handy you can make your own strap covers out of fleece. There are also mask liners called Remzzz, just do a search. Depending again how crafty you are you can make your own. I use (cough-cough) old well washed cotton undies they make perfect liners, you can also use old white t-shirts. I use them 2 or 3 nights then toss them into a wash bag then into the machine. As a matter of fact I just made up a bunch of them this morning now I'm good for another couple of months.
I wish you good luck on your journey, it takes mega patience and persistance to get there, but get there you will.
Cheers
Nan

Thank you so much Nan. This is exactly what I was looking for. I went to the web site for padacheeks.com and found some covers which might work with the one I'm getting. I'm not too handy with sewing. The cover I made was crochted and it itches like crazy and moves all over the place.

[OutaSync]

[quote="Mytigodess"]
I have never been comfortable with being touched in my sleep. It wakes me up. I have been married for 19 years and my husband and I have been sleeping with a few pillows in between us so he doesn't wake me up when he rolls over and accidently hit/elbow me, wrap his arms/legs around me, or in any other way touch me. That wakes me up and then I have a hard time going back to sleep.


You are the only person I have heard express exactly how I feel. I can't even get to sleep with someone touching me. How do you make a man understand that? If I did fall asleep, every time he moved I would wake up. He didn't even have to touch me, just move!

You will find the padacheeks products soft and comfortable. I'm using the liner now and liking it alot.

Bev

[justerry]

I have FMS also, and my sleep doctor thinks it was caused by lack of sleep when I hurt my back. My (old) GP wouldn't prescribe anything and this set off everything. I'm in pain most day like yourself. I've been trying the cpap, and I tell you, I sleep worse with it on. I sleep very light, constantly messing with it. I have to take it off to get some sleep. I have a nose and full face mask. So far I like the full face mask, it stays in place better and seals better for me. Nevertheless, I couldn't hardly sleep. With pain issues, I'm scared of losing much.

Best of luck,

[issie]

I have FMS amongst other issues. I have found that the Opus 360 is the best headgear for me and I've tried about 5 different ones. It seals real well and is more comfortable than anything else I have tried. I don't sleep well either and at times absolutly hate the CPAP. I've found that if I take a muscle relaxer and an Advil or Tramadol it helps my pain and my body to relax and I can go to sleep. Sometimes not even turning over. Hope you find some relief soon. It's terrible to not sleep.