On CPAP since June, chest muscles just too tired

Intunejune · Post by **Intunejune** » Tue Sep 18, 2007 11:00 pm

My CPAP machine was on a setting of 10 initially. Titration study a month later showed the setting would be sufficieint at 6.

I called the doc's office after a week of not hearing from them, requesting the pressure be reset. Over the course of the next five to six weeks, left three voice mail messages, and also left two messages with the RT.

Finally last week, the pressure was reset at 6. However, my chest muscles are just too tired and hurt too much.

I have fibromyalgia and work with a physical therapist who also noted on my last treatment how tight, spasm-like all my muscles of respiration were, everywhere he touched.

I was hoping with the setting turned down, I would do better, but being compromised already, the lower pressure seems too much for the muscles of respiration. I am having a hard time exhaling completely.

This is discouraging, I am worse off now than without the fool machine.

I did adapt well to the mask, have no trouble falling asleep. But at sometime during the night would pull it off without waking up.

Any suggestions besides throwing the thing out the window.

June

kteague · Post by **kteague** » Wed Sep 19, 2007 12:32 am

Hi June. Welcome to the forum.

If you're having trouble exhaling, you may need a machine that has exhalation relief. And one that gives you access to data could help you determine how effective your treatment is. If you had a responsive doctor or RT I'd suggest telling them that things aren't working for you. Even if not, maybe leave one message for all parties involved. I'd give them one day to return the call.

While you shouldn't have to do this, you may have to become the squeaky wheel. Let them know their response time is unacceptable, and that you don't expect their patient load or staffing issues to interfere with your needed health care. If they don't rise to the occasion then, you may need to look at changing providers.

Hope you find answers and find some relief from your sore muscles.

Kathy

Intunejune · Post by **Intunejune** » Wed Sep 19, 2007 5:14 am

Thank you Kathy.

I do suspect it was the doctor's office who dropped the ball. On my visit recently to his office, about ten days ago, I brought the subject up with the doctor, the lack of response and the RT to come to turn the pressure down.

Also explained to him the five-six week delay had played havoc with my chest muscles which now were in considerable pain.

He checked my chart and found his order to have my cpap readjusted.

The question is did his office manager call the home care company?? or did the home care company drop the ball.

One is blaming the other.

I cannot change pulmonologists at this time as he picked up significant problems my PCP did not. And, I am about to embark on IVIG therapy by his order.

So I am unable to make changes at this time.

I do see my PT today. When he worked on these muscles the last time, they did feel better. But it is now two weeks later.

Last night, I set up the CPAP and had it on fifteen minutes, I cannot get a full exhale and those poor tired muscles just refuse to do more.

What are the repercussions of not getting a full exhale?

Thanks June

Intunejune · Post by **Intunejune** » Wed Sep 19, 2007 5:23 am

You mentioned a machine with exhalation relief?

I read on this forum about C-Flex machines, is that the machine you are referring to. I am so new to this and was overwhelmed with some of the posts here. Lots of terms I am not familiar with.

I don't know if I should call the RT today.... or, wait for the PT to have another go at the muscles and see if I improve over time with the decreased pressure.

I will only be leaving voice mail messages at both offices as both have today off.

June

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX

cflame1 · Post by **cflame1** » Wed Sep 19, 2007 5:44 am

CFLEX is a type of exhalation relief... and is available on Respirionics machines, as long as you get a machine that has it.

for a fully data capable machine... you'll need to get at least a Pro2 in order to use your current humidifier, though an auto would be even better. If they insist on setting you up with an M series, you want to get at least a Pro or an auto. The best without getting into a bipap would be an M series auto with aflex (another type of pressure relief).

Intunejune · Post by **Intunejune** » Wed Sep 19, 2007 5:59 am

Thanks.

I need to understand more.

But all of this brings to mind...

Why aren't ALL patients put on a machine with exhalation relief? It is not natural to force all exhalations and to do that all night long is exhausting in and of itself!

The technology apparently is out there (first I knew -- learning here at this forum) why is it not used on all patients?

Sleep is supposed to be restful and a time for muscles to repair. Why not put all patients on "exhalation relief.?"

June

cflame1 · Post by **cflame1** » Wed Sep 19, 2007 6:03 am

probably the DME would say that it's a difference in cost... or they'd say that the DR didn't prescribe it.

drummergirl410 · Post by **drummergirl410** » Wed Sep 19, 2007 7:04 pm

I'm sorry to hear that you've had so much trouble. I also think that a machine with exhalation relief might really make a difference for you. A machine with auto might be even better, depending on your particular circumstance. My machine is effortless to breathe against in auto mode, and not significantly more difficult using EPR, which is another type of exhalation reief, such as c-flex or a-flex. My target pressure is 7, so not much different from yours.

elliejose · Post by **elliejose** » Wed Sep 19, 2007 8:22 pm

I had this same problem. In my case, the auto bipap was the answer, and a very good one at that. Since getting auto bipap, I rest MUCH better -no aerophagia, no sore chest, no more struggling to exhale. It feels nearer to normal breathing than anything else I have tried. Good luck to you! Keep us posted as to your progress.

JZ · Post by JZ » Wed Sep 19, 2007 9:32 pm

June,

Here is some information about exhalation relief on cpap machines:

Exhalation relief
Some people find exhalation relief makes therapy more comfortable because it matches their natural breathing patterns and they don’t have to fight pressure to exhale. It increases their compliance. Others don’t need pressure relief. Some Respironics models (both CPAP and APAP) have C-Flex with three settings. The machine senses exhalation and lets the pressure drop slightly and briefly, making it easier to exhale. Setting 3 provides the most exhalation relief. See
C-Flex technology http://cflex.respironics.com/How.htm#
C-Flex literature http://cflex.respironics.com/Literature.htm
C-Flex research http://cflex.respironics.com/Proof.htm

RedMed has EPR (expiratory pressure relief) available only in its straight CPAP machine. See http://resmed.com/portal/

People who need a lot of exhalation relief may need a BiPAP machine.

I found this information by clicking on the yellow lightbulb at the top of this forum. Look under Selecting Your CPAP Equipment, then CPAP Machine Choices.

I'm no expert, but in my opinion you should talk with your doctors about a BiPAP machine. At the very least, you need a machine that offers C-Flex, A-Flex, or EPR.

Good luck and let us know how you are doing.

Janna

RosemaryB · Post by **RosemaryB** » Thu Sep 20, 2007 3:35 am

From what I've read here, a machine with A-flex seems to give the best exhalation relief, except for bipap, which is a different type of machine, that I don't understand too well.

Let's face it, these doctor's offices and DME's are usually understaffed (part of the "doing more with less" crazieness). This leaves it up to the patient to continually check them if they are not responding as they should be.

You may want to choose a machine before you talk with the doctor and then suggest that he write a script for that specific machine. Then make sure that they give you that exact machine. The A-Flex machine is only available in the Respironics REMSTAR M-series Auto with A-Flex. They make the auto machine in C-Flex as well, so don't let them give you that one if what you need is A-flex. They are somewhat likely to do this because they may have the older C-Flex machines in stock and want to turn them over.

It must be the Auto machine to have A-Flex.

Read through some of the posts on A-Flex and you will get more info. It does sound like pressure relief is something you might benefit from. Or even a bipap, but I don't know much about those.

Good luck.

Julie · Post by **Julie** » Thu Sep 20, 2007 6:40 am

A-flex is not for exhalation relief, but inhalation 'smoothing' - it is C-flex that you want June.

Intunejune · Post by **Intunejune** » Thu Sep 20, 2007 5:34 pm

Cflame
Drummergirl
Elliejose
Jz
RosemaryB
Julie

OK folks, you need to come with me to my next appointment!!!

When I explained the pain in my chest, the doctor said it was due to stress at work.

I work in the same hospital he is affliated with..... and yes right now we are under a lot of stress.

HOWEVER, I have worked with a PT for seven years, and when he worked on my chest, shoulders, and neck a few weeks ago..... HE brought up the fact my muscles of RESPIRATION were compromised.

My doctor offered no other type of CPAP.... I told him I felt I was not exhaling all the way and it was an effort to exhale over teh pressure.

The home care company listened to my tale of woe and never told me there were ALTERNATIVES!!

So are you all coming to my next appointment??????????????

Thank you, June

raybur · Post by **raybur** » Thu Sep 20, 2007 6:08 pm

I am a newbie here, only 1 month today! I have the APAP machine. What I experience is a lessening of the air pressure at the height of my inhalation, creating a nice way to exhale, but almost at the bottom of my exhalation, the pressure goes back up to my maximum again. I am assuming this is to prevent an obstruction. My husband says I don't snore anymore.

JZ · Post by JZ » Thu Sep 20, 2007 7:29 pm

June,

I am very frustrated on your behalf. Certainly there are many cpap users who do not need or want exhalation relief. But, based on what I have read over the months on this forum, many, perhaps most of us like, want or need machines with exhalation relief. For many of us it is just more comfortable.

Your pressure setting of 6 is quite low. In my humble opinion, if you have difficulty or pain exhaling with a pressure of 6, your doctor ought to take note and consider options. I can't think why a doctor would not consider a switch to a machine with exhalation relief in a situation like yours. A machine with exhalation relief will certainly not compromise your sleep apnea therapy. But it looks like not having exhalation relief very well may compromise your sleep apnea therapy because you will find it hard to be compliant.

Your question about whether we would come with you to your next appointment actually contains a serious idea. I have seen suggestions here that when a patient is not getting what they need from their physician, they consider taking an assertive family member or friend. If you have someone like that who would go with you, maybe it would help.

My suggestion -- remember I am not a health care professional, just a layperson with an opinion, is that if you don't get relief from the sore chest muscles in the next few days, have another conversation with the doctor about the potential that you are going to fail on cpap treatment and experience the consequences of that failure. I would also suggest that you keep trying the cpap if even for short periods of time to see if you body will begin adjusting.

Let us know how you are doing.

Janna

On CPAP since June, chest muscles just too tired

On CPAP since June, chest muscles just too tired

Sore chest muscles

Sore muscles

Kathy on exhaling

Cflame1 relief for exhalation

Thanks everyone / chest pain