Sleep problems

[Guest guest]

Thanks for the info! I take Tramadol at night, per rheumys

insistence. But that is not helping at all with the waking problem.

I've tried melatonin to no avail - now I see why. I really hate to

add another drug - don't we all feel like we take too many already?

I'm not sure which is worse at this point - being fatigued or taking

more meds. I will definitely speak to my rheumy next month.

thanks again,

sherry z

[Guest guest]

Sherry,

I have the same problems with sleep. I don't think I have had a good nights

sleep in years(literally). You sound as though you are describing me. My rheumy

prescribed amitryptaline to help me sleep. I absolutely hate it. I feel horrible

the next day. When I told her how it makes me feel she suggested taking half a

pill. I still didn't like it. I have often wondered whether the fatigue is an

actual symptom of PA or if the fatigue comes from the lack of sleep. Anyway, my

ramblings don't help you a bit....sorry. I just felt I identified with you.

Ronda

[Guest guest]

Have you thought about sleep apnea? I was waking up regularly and was so

exhausted. At first, I attributed it to the pain.

But when I went in for knee surgery last September, they canceled it

because I had some swelling in the back on my throat.

It turned out I had a severe case of sleep apnea (I went in for an overnight

test). Now I'm being treated and I'm finally able to get a good night's

rest.

I still wake up in pain from PA, but at least I'm not as exhausted as I was.

It turns out that some people get inflammation in the back of their throat

-- and I had a smaller windpipe as well.

The combination caused the sleep apnea.

Might be worth checking out...

Patty

[Guest guest]

Ronda, my fatigue lessened greatly when I went on Humira, so for me

it's PA that caused it and not the lack of sleep. I'll let you know

if I find something that gets me at least 4 hours uninterrupted sleep.

thanks,

sherry z

[Guest guest]

Patty, I =have= thought of that but I haven't spoken to a doctor

about it. I snore terribly. Do they think the inflammation in your

throat is part of the generalized inflammation due to PA? How are

they treating your sleep apnea - with CPAP?

thanks,

sherry z

[Guest guest]

Hi All,

For 2 to 3 years ( I really can't remember how long) I suffered with terrible

fatigue. I'd go to work for 8 hours, not remember how I got home (scary!) and

sleep for 1 to 2 hours, then be a veg on the couch as I never really " woke up "

from my nap. I'd eat dinner and fall asleep. Get up the next day and do it all

again. My wife was upset as she felt work was getting me and she wasn't. Our

together time was non existent. As time went on I got worse, forgetting people

I'd worked with for 10 plus years, couldn't remember places, people, names,

where I was going, what I was doing. I was scary.

I was seeing my rheumy and GP, and they were running tests and more tests

trying to find a reason. " Did I sleep well? " Like a log, head hit the pillow and

I was out till the alarm went off. " Did I snore? " On occasion, not every night.

One day the Rheumy says " you're going to do a sleep study " . Why I sleep like a

log. The answer was " Because " & So we can rule it out "

It was the best thing I ever did! I wasn't " sleeping " I was resting, only

getting 4 minutes of REM sleep a night! They put me on a CPAP machine which I've

used every night for 10 days so far. After 4 days I noticed a difference, I wake

up ready to face the day, I come home from work and take the dogs for a walk

with my wife. I worked on my antique car for 6 hours straight. I mowed the lawn

last night at 8p.m. after working a 9 1/2 hour day!!

It is wonderful! I feel SO much better, I'm alive, an active participant in my

life and I love it!

Something to consider, I never did, yet it's made such a wonderful difference.

Job in CT.

[Guest guest]

Dear Sherry Z,

I could have easily written your email. I’ve had a sleep disorder now for

years and it first started about the time I was first diagnosed with Fibro,

around 25 years ago. It has only gotten worse with time. For a while,

before I developed PA I took Elavil, which does let you sleep through the

whole night without waking up. But like all these drugs they have side

effects and weight gain was the major one for me at that time. I finally

stopped it because of the weight gain and even though I didn’t lose much, I

didn’t’ gain anymore either.

Right now I take a Xanax and two Benedryl at bedtime. Those will normally

put me asleep for at least 3-4 hours. I always wake up at least twice and I

normally use the bathroom, and then read for a short while. If I’m not

asleep in an hour I take two more Benedryl and that will usually help. I’ve

tried so many of the sleeping pills and they all have side effects. Ambien,

made me walk in my sleep and you can really get into trouble on that drug,

plus you constantly need more of it to keep it working, several others left

me with a horrible taste in my mouth the next day, or a hung over feeling.

So far this is the best combination I can find. It doesn’t work perfectly,

but it’s better than being up all night and then cat napping all day.

I have do doubt that sleep disorders go with PA. I also have sleep apnea

and I remember when I mentioned it in this group once, many people responded

to it. So it must be linked together. I just read yesterday where diabetes

gets worse with a sleep disorder and that explains why I’ve been having

trouble controlling diabetes. I developed it from being on predinsone for

so long, but I’m at the point now where I can’t go without predinsone

completely. Predinsone also disturbs your sleep. I’ve also noticed my pain

level really increases without a good nights sleep and sometimes even just a

hour nap during the day will help that a little. I also use a sound machine

to drown out the sound of my husband’s snoring, since he wakes me up way too

many times a night. So there are things that help, but I haven’t found

a cure that works perfectly yet.

Good luck and I would discuss it with your doctor. He might be able to come

up with something that works for you or at least helps some. Take care.

Fran in Florida

[Guest guest]

Sherry: thanks for the info on skin cracking. I could never figure out what it

was and kept thinking it was an allergic reaction to something I was coming in

contact with.

Re: tramadol. It helps if you don't sleep because of pain but it's not a

" sleep " med. For what it's worth, my daughter has to take a bi-polar drug that

is sometimes used as a sleep medicine because it really knocks you out (though I

think you'd be crazy to take it as such); and she has to take provigil in the AM

to " wake up " .

Again, as I've said a couple of times recently (because I'm so in 7th heaven

about it), I don't know if I have fibro or not but Lyrica is giving me the best

sleep I've had in years and I've taken almost everything!!!!!!!!! As a

result, I have more energy than I've had in a long time. I don't think I

realized the extent to which my lack of sleep was really affecting the rest of

my life.

Joanna Hoelscher

[Guest guest]

Fran: if you have fibro, you might want to try Lyrica. I've had no

recognizable side effects (though it's thought to cause hunger and weight gain)

but it certainly has helped me sleep . . . . .

Joanna Hoelscher

[Guest guest]

Sherry,

You should request a sleep study. It may be nothing to worry about, but it

can't hurt to do one anyway.

A lot of us have fibro and lack of REM sleep is one the the symptoms. I still

have sleeping problems

even with my CPAP, but not as bad as before. I was hoping for a miracle of

energy, but of course was

disappointed. I usually sleep at least 4 hour stretches now though.

Janet in Ca

[Guest guest]

If you think about it, PA causes inflammation -- and inflammation of the

throat can cause sleep apnea.

So it makes sense that sleep apnea might be linked to PA.

Patty

[Guest guest]

This sounds exactly like my story! Thank goodness for the CPAP machine!

I'm glad to hear you're doing so much better!

Patty

[Guest guest]

Hi Sherry,

Yes, I do -- and so did my doctors. Apparently, inflammation can strike you

anywhere when you have PA -- and in my case, the inflammation hit the back

of my throat.

On top of that, I have a smaller windpipe and there was some residual

inflammation from sinuses. So the three combined and essentially caused the

sleep apnea.

I did snore as well -- as a result of the inflammation.

I went in for the overnight sleep test (very easy, by the way) and they woke

me up in the middle of the night to tell me that I definitely had sleep

apnea. So they tried the CPAP machine on me for the rest of the night and

adjusted it until they got the right setting. I found out from my doctor

later that I had a severe case -- and probably hadn't gotten much REM sleep

for at least a year (thus the exhaustion). I was waking up (not fully but

just enough to keep me out of REM sleep) about 30 times in an hour.

They said that what happens when you sleep is that your throat relaxes as

you go into REM sleep. If you have inflammation and your throat relaxes, it

closes up your throat. You can't breathe and your body startles you awake

so that you don't die from lack of oxygen. Thus you never fully fall

asleep. It can be dangerous as well if untreated.

The CPAP machine is a life saver! At first, I was worried about using the

mask. But it's comfortable (they have different masks you can try until you

find the best one). And the difference in my energy level is fabulous! The

only time I have problems is if I wake up early in the morning for some

reason and take the mask off - and forget to put it back on when I go back

to sleep. Those hours are definitely less restful.

My CPAP machine is used every night now!!

And another bonus -- I just found out that since the machine is a medical

necessity, PG & E (California power company) will give me the lowest

gas/electric rates because the machine is something I need.

I filled out a form and now they keep my rates at the lowest level. Nice,

huh?

If you're having snoring and PA and are exhausted, I would definitely have

it checked out.

Patty

[Guest guest]

Sherry,

One other thought. The Humira/MTX did help my inflammation/flare last year

-- which caused less pain. But I wasn't able to find any medication that

would keep me from waking up.

That's because the pain wasn't the culprit. It was the combination of the

inflammation and the relaxed throat.

It was the CPAP machine that finally completely eliminated the snoring and

allowed me to sleep through the night. So it's worth checking out. What

can it hurt?

Patty

_

[Guest guest]

Ronda --

A thought for you. My rheumatogist is not the one who diagnosed my sleep

apnea. My anesthesiologist actually suspected it before she cancelled my

knee surgery (i.e. sleep apnea can be dangerous if you're having surgery.

Without treatment, it can cause major issues during surgery).

My primary care doctor, after consultation with knee surgeron,

anesthesiologist and my rheumatologist, sent me to a ear, nose and throat

specialist -- who sent me to sleep testing center.

They finalized the diagnosis and confirmed the inflammation in my throat.

Roundabout way to get the diagnosis -- but at least everyone's in the loop

now. Interestingly, my rheumy admitted she rarely thought about sleep

apnea/throat inflammation causing issues for her patients.

Most patients told her that they ASSUMED it was pain that was waking them up

and making them tired. So as a rheumatologist, she never considered that

inflammation in the throat could be related to their sleep issues. Now

she's aware that it can be a problem -- and that's going to affect how she

diagnoses other patients.

That's why I'm really glad I have a good team of doctors. They can cover

the bases across the board.

Patty

[Guest guest]

Hi,

I was just about to write in and suggest Benedryl and then I saw Fran had

suggested it. I used to work at a pharmacy several years ago and the pharmacist

used to suggest Benedryl to elderly patients who had trouble sleeping because it

has such a low instance of side effects and drug interactions. You still need

to check with you doctor first but it's pretty safe for nearly anyone to take.

I am one of the people who it REALLY puts to sleep. I was supposed to be taking

it for allergies but I would have been sleeping standing up if I had. Haha!

Night was the only safe time for me to take it!

Might be worth checking out anyway.

Deanna

[Guest guest]

Patty, thanks so much for all the info. I'm going to bring it up

when I see the rheumy in July.

regards,

sherry z

[Guest guest]

Hey Sherry,

Sleeping....what is that? I haven't slept well in years. My Rheumy just asked

me when was the last time you woke refreshed. I laughed at him. He gave me a

pain med for night that also happens to be an anti depressant. I've only taken

two so my body hasn't adapted and I am still waiting for the miracle of a good

night sleep. He also said that this is more likely the culprit of fibromyalgia,

which he believes I have.

I also am right there with you on the side sleeping/pain thing. I've slept with

a body pillow since I was pregnant with my some 10 years ago. Putting this

between my arms and legs does take some of the pressure off, not all, but enough

that I can fall asleep.

Maybe it's time to go back to the old standbys of a warm bath and warm glass of

milk before bed......lol

Good luck.

Penkoff <girlfriendgeneration@...>

[Guest guest]

I almost forgot about the sleep apnea. My rheumy wants me to go for the testing

as well. I snore badly myself (only over the last few years) and have woken

myself with the loudness of it.

Penkoff <girlfriendgeneration@...>

[Guest guest]

, actually a warm bath with lavender bath salts really does

relax me and soothe the aches! But it doesn't help me sleep any

longer. Oh, well...

I am going to try taking Benadryl, per the suggestion of several

folks here. Thanks to all those who suggested it! If that doesn't

help, I'll speak to the rheumy in July.

regards,

sherry z

[Guest guest]

Sherry,

I know I'm late reading messages but I still had to respond to your

post. I could have written it! I used to wake up many times during

the night because which ever side I was sleeping on was hurting

terribly. Then I had trouble turning over and would even have to sit

up sometimes just to be able to switch sides. My rheumy likes to use

muscles relaxers at night rather than sleep aides so he gave me 10 mg

Flexoril. I hated it! I felt so drugged the next day. Rheumy told

me to cut it in half and take it. I resisted and would only take

half if I'd had a rather painful day. My GP will give me Ambien (not

the CR, he prefers to stay away from things to keep you asleep) but

after a few hours I would still wake up with pain. When I kept

talking to my rheumy and explaining my pain, we figured out that my

PA was not under control and I needed more meds. For example, I

realized that my ribs, hips, etc didn't just hurt at night. If I

pressed on them gently it really hurt. When I found a drug combo

that worked for me, I started sleeping better and not waking up with

one side killing me. I also realized the headaches I was having were

coming from my neck and back. My muscles would get so tight when

inflammation would flare up in my spine. I decided to actually

follow the docs instructions and take half of a Flexoril at night.

It took a couple weeks but the side effects the next morning wore off

and taking it really does help with the back pain and headaches I was

having.

Angie

[Guest guest]

Angie, thanks for the info about Flexaril. I do suspect the Humira

might be slowly losing its effectiveness for me. That, for sure, may

explain why I'm having more pain. I'm trying good old Benadryl

tonight to see what happens. If that doesn't help, I'm bringing it

up to the rheumy.

thanks,

sherry z

[Guest guest]

Hi, everyone! Good news to report, and I hope it's not just a

coincidence. I took Benadryl last night and slept from 11 p.m. until

5:30 a.m. without waking up. I feel like a new woman today!!! I

hope benadryl turns out to be the answer for me - I trust it as a

relatively safe drug and it will help my allergies, too.

best regards,

sherry z

[Guest guest]

Great news, Sherry! Benadryl is a miracle drug, IMO. LOL I had

forgotten about taking it before bed. Hope you have the same results

tonight.

Angie

[Guest guest]

Just me " chiming in " again!

I thought I should also mention that before I was diagnosed with PA I had the

worst case of bronchitis ever. I suspect it also had something to do with the

PA although I can't intelligently discuss that because I don't know a lot about

that part of this disease. Anyway, they gave me Zithromax and it did nothing-

it seemed to make it mad! hahahaha! I was sick for a whole month and even

separated my ribs I coughed so hard. It wasn't pneumonia because they did

x-rays. A therapist in training at the hospital where I worked told me to take

Benedryl. I was desperate and tried it. Within three days I was cured! I'm

not kidding- took it right away! Anyone who has a similar problem might want to

try it for this as well as the sleep problems.

Deanna