Re: Sleep Apnea Diagnosis, was: could be the reason I have been feeling yick..

[Guest guest]

That's amazing. I had no idea sleep apnea could be a cause of joint pain. I

was diagnosed with sleep apnea about 4 years ago; I wear the cpap every night,

though often take it off in the early morning hours. If I don't wear it, I can

barely function during the day. The UC diagnosis came about three years after

the sleep apnea diagnosis and the joint pain about 6 months after that.

Maralyn, does the pulse oximeter measure whether you are getting enough oxygen

while sleeping? As I said, I do wear the CPAP regularly, but I wonder whether

it is working to its full capability.

[Guest guest]

That's amazing. I had no idea sleep apnea could be a cause of joint pain. I

was diagnosed with sleep apnea about 4 years ago; I wear the cpap every night,

though often take it off in the early morning hours. If I don't wear it, I can

barely function during the day. The UC diagnosis came about three years after

the sleep apnea diagnosis and the joint pain about 6 months after that.

Maralyn, does the pulse oximeter measure whether you are getting enough oxygen

while sleeping? As I said, I do wear the CPAP regularly, but I wonder whether

it is working to its full capability.

[Guest guest]

At 03:34 PM 8/13/2009, you wrote:

That's amazing. I had no idea

sleep apnea could be a cause of joint pain. I was diagnosed with sleep

apnea about 4 years ago; I wear the cpap every night, though often take

it off in the early morning hours. If I don't wear it, I can barely

function during the day. The UC diagnosis came about three years after

the sleep apnea diagnosis and the joint pain about 6 months after that.

Maralyn, does the pulse oximeter measure whether you are getting enough

oxygen while sleeping? As I said, I do wear the CPAP regularly, but I

wonder whether it is working to its full capability.

Taking the mask off park way through the night isn't uncommon in CPAPers.

<g> Kind of like SCDers craving ch-c-l-t- <g>. I highly

recommend CPAPTalk.com as a place to find out more about your therapy.

The folks there are as heretical about CPAP as we SCDers are about diet

for gut issues. IOW, my kind of folks.

Yes, the oximeter records both pulse and blood oxygen levels, and you can

look at them and see if your therapy is effective.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 03:34 PM 8/13/2009, you wrote:

That's amazing. I had no idea

sleep apnea could be a cause of joint pain. I was diagnosed with sleep

apnea about 4 years ago; I wear the cpap every night, though often take

it off in the early morning hours. If I don't wear it, I can barely

function during the day. The UC diagnosis came about three years after

the sleep apnea diagnosis and the joint pain about 6 months after that.

Maralyn, does the pulse oximeter measure whether you are getting enough

oxygen while sleeping? As I said, I do wear the CPAP regularly, but I

wonder whether it is working to its full capability.

Taking the mask off park way through the night isn't uncommon in CPAPers.

<g> Kind of like SCDers craving ch-c-l-t- <g>. I highly

recommend CPAPTalk.com as a place to find out more about your therapy.

The folks there are as heretical about CPAP as we SCDers are about diet

for gut issues. IOW, my kind of folks.

Yes, the oximeter records both pulse and blood oxygen levels, and you can

look at them and see if your therapy is effective.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hey Marilyn,

Thanks for your response!

I'm gonna trim as much as I can while still trying to remind you of the

subject.. So if I quote too much.. forgive me.

> >How long did the whole process take you?

> The result of this was that I ended up with a

> super-fancy machine to cope with this, the Bipap Auto SV.

Your whole story seems kind of rare for Sleep Apnea sufferers that there were a

couple of issues going on..

Is my thinking correct? Just reading how you figured out and the steps you had

to take to do this exhausts me LOL.

> >How does Sleep Apnea cause more pain issues?

>

> If the oxygen in your tissues goes below what it

> ought to be, it can cause pain. The pain

> management doctor told me that any time she sees

> chronic pain for which there is no overt cause,

> she has a sleep study done first, and then

> considers more esoteric issues only if the sleep study comes back negative.

How interesting. I wonder if some of this applies to me?

Do some people ever need to do a couple of sleep studies or is one usually

enough to figure out if one has it or not. Knowing me I would probably be fine

that night- or does it not work like that?

> Interestingly enough, when in the hospital after

> my surgery, I had more pain in my hips than I did

> from that huge incision! The oximeter kept going

> off, too. I did not know enough then to

> understand that what was probably happening was

> that the pain meds were worsening my apnea --

> they worked fine on the incision, but could not

> touch the oxygen deprivation related hip pain.

> They actually made that pain worse.

This happens to me on pain killers.

I was on so much stuff post surgery between a duragesic patch and Dilaudid.. My

kneck and back (sacrum) were killing me.

> >Were you able to try different types on?

>

> I called the sleep lab where my titration was to

> be held and asked for an appointment with their

> mask specialist, to try on masks, explaining that

> I had very bad claustrophobia, and had to find a

> mask that would work for me, or the titration

> would be hopeless. The specialist was amazingly

> helpful -- he spent around three hours with me,

> trying on different masks under light pressure.

> Specifically, I tried them on lying down (well

> that's the position you're going to be using it

> in, right?) and with positive pressure. That was

> when I also found I couldn't handle single

> pressure -- it was very light, but I could not breathe out against it.

This is very good to know to lay down and try on.

Are masks usually covered by insurance?

I have a decent insurance plan.. actually it's really good comparing to plans I

have had in the past!

> >So sorry about mom. How is she doing these day? How is dad holding up?

>

> Dad is very, very tired. Have I mentioned he's a

> stubborn German? He's concerned about finances,

> and so is continuing to try to take care of Mom

> 24/7 instead of hiring someone. And it's

> depressing to see someone you love slipping

> slowly away. He was prepared for the physical

> aspect. But not for the mental one. Mom is now on

> an anti-anxiety drug and an anti-depressant,

> which seem to be leveling out her moods a bit.

> AND: Dad has to have surgery for skin cancer in a couple weeks.

Wow.. that doesn't sound easy at all.

They get very stubborn with age and they just don't feel like they should spend

money on these things. My grandparents are like this and it is very hard on my

dad and brother and I. My grandma always tells me she is one foot out the door

so there is no point. I just want to hug her and squeeze her at the same time.

> >Is sleep apnea genetic at all?

>

> I think that it is not so much that sleep apnea

> is genetic, as the physical structures which

> predispose one to apnea can be inherited --

> things like a small jaw, or a tendency to weak

> musculature in the throat. If you happen to

> play a didgeridoo, it's said to help with apnea.

I actually have a friend that gave me a didgeridoo!! LOL.

> >It is amazing what kind of lasting imprint a

> >terrible doc can have on us. I remember having a

> >-horrible- and traumatic pelvic exam by a GI

> >when I was in late teens. Later I learned GI's

> >shouldn't even be giving pelvics.

>

> Actually, one of the things I have learned from

> the physical therapist who is helping me to work

> on the urinary incontinence issues which

> developed after the surgery (not to mention the

> lymphedema issues) is that Crohn's, UC, and IBS-D

> can all cause weakening of the pelvic floor

> because those of us with those issues don't have

> to push the feces out, so our muscles get weak

> and lazy. She did do a pelvic exam, but she

> stated up front that she was not a gynecologist,

> and therefore was only testing the condition of

> the pelvic floor muscles, not doing an actual examination.

Huh.. I pee so much more post surgery. I actually feel like my urinary tract is

like weaker on the brink of a UTI but I am fine.

Do you think the surgery I had can cause urinary issues like this that I have to

pee all the time (I thought it was bad pre-surgery.. Boy was I wrong. Taking

probiotics always make me pee more!)

What are good ways to strengthen the pelvic floor muscles?

> >Did they do the whole Thyroid panel? Important to get RT3 tested too.

>

> RT3? I know of T3. I'd have to go get my labs...

> they did the T3 uptake, the total T4, and the TSH.

So you want RT3, Free T3, T3, Free T4, T4, TSH

Also check Thyroid antibodies like Thyrogobulin

Some people don't come up clearly as having a Thyroid issue but the RT3 is high

meaning the T3 is not converting from the T4 properly and is being dumped in

RT3. The ratio can be calculated to see if you have an issue as well.

Sometimes it is good to have a 24 urine cortisol test along with a saliva

cortisol test with this.

http://en.wikipedia.org/wiki/Reverse_T3

Here is a great book that has extensive info on Thyroid;

It's available on Amazon.

http://www.thyroiduk.org.uk/tuk/pages/forms/peatfield_order.html

> Something which the physical therapist I am

> working with said kind of resonated with me. She

> said that surgeons may be incredibly skilled in

> their area of expertise. She herself had the same

> surgery -- EXACT SAME SURGERY -- I had eight

> years ago, with the same oncologist. And she

> comments that as much as she admires her, she

> does not think the oncologist thinks about after

> the surgery effects until they crop up. Some

> people sail through it without issues. Others

> have problems. She noted that part of it is

> because they do not want to bring up things which

> may not happen. Why scare the patient more than they already are?

I understand. Still it would of been nice for them to tell me it would be

difficult to get out of bed a couple of weeks/months post surgery..

> The problem, then, is dealing with issues when

> they arise. And this, regrettably, is not where surgeons shine.

Very true..

> I don't know if it is the surgery itself which

> has made me more inclined to being down, or if

> it's the waiting. Tests every four months,

> waiting for the results, hoping that (unlike an

> acquaintance of mine) they will be negative

> again. Dealing with the up and down of the fluid

> retention -- and the fact that although I am

> trying to lose weight, I cannot tell if I've had

> any success because the fluid retention changes

> both weight and measurements. That's pretty

> depressing, in and of itself. Add to the fact

> that I was out of work for eleven months due to

> the prejudice of a manager, Mom's illness, and

> the fact that I'm not making the progress on my

> writing that I would like to, and it all adds up.

Yea.. that's a lot to deal with..

Are you having any weight loss now? What a bummer Marilyn.

I wish there was a good handbook that all of innately come into this world with

when it comes to dealing with stress and life circumstance.

I realized the other day.. the process of having plans and needing to get ready

(like in general) even it is just to cook or meet a friend causes me stress that

I internalize. No one would ever see it on me but it is there. How crazy is

that? My husband told me that many experience this kind of stress.. I wonder

if this is the case?

Jodi