RE: AS question

[Guest guest]

, I have trouble rolling over ( I make noises from the pain all night

long), getting out of bed is especially hard. Sleeping on tummy and sleeping

on back is very hard, but I try to do it...as they say that you should do this

as an exercise everyday. I use a down pillow (which squishes to nothing) or

no pillow, because my neck starts hurting worse if I sleep with a normal

pillow,In some of the literature it says to sleep without a pillow. I've found

that you do this because you learn that it causes more neck/and back pain.

Sleeping with legs drawn up help lesson the strain on your back. I'm

experiencing breathing problems for the first time. I've had ribs that hurt in

the front

of the chest, but the last couple of weeks, I've had trouble taking deep

breaths as my rib cage.... coming from the back and around to the front hurts

on expansion. Lately, I've been waking up in pain levels that I would call a

8+ and having to get up and take an ultram at about 4/5 o'clock. All this

because I had to go off most of my medications. I don't know if I can wait

until

Spring to get back on Humira or Enbrel. It is getting pretty bad.

Walking, sitting or laying flat for any length of time causes my back to

spasm. I liked what Dave+ said. He said that sometimes it is a dull constant

pain and other times it is a ROAR. That so describes AS in its later stages.

I haven't joined a Seniors Rx group yet. I think the dead line is May 15. I

may decide to get on the Enbrel before then.....as it will put me into another

plan. This is why this new drug plan sticks. I haven't looked into it

yet....has anyone here found a plan that will take in the anti-TNFs? I've been

reading that there is a lot of problems with the new plans....so many that were

on Medicaid....had to go over to Medicare and they aren't getting their meds.

Seems many were turned away at the pharmacy...going without their necessary

drugs. Hope they get this done before people start dying.

Best regards to all and a welcome to all the new members. Connie

[Guest guest]

I seem to only be able to sleep on my back. The recommended way is to sleep on

our stomachs but that just doesn't work for me any more. I try to sleep any way

I can get some sleep.

Not much help for you hunh?, but it''s the best I can do for now.

May you have better sleeping than I do.

GA

--------------------

Discover Pasty.net - http://www.pasty.net

[Guest guest]

My sincere sympathy to all of you on these care/insurance plans. thae one

consolation of having all this to deal with is that in the UK we have the NHS

and its all 'free' nobody goes without drugs............

I have a huge supply of lots of things that i dont use any longer as things

get changed of an on. If anyone is needy of anything please do get in touch . i

may be able to help and send redundant meds to those that could use them.

Adam

London

Moderator's note

Hi Adam:

please cut out the old message that you are answering as it can clog up archive

searches. Other than that, post away kind sir.

+Dave

[Guest guest]

I've tried to stay away from the oral prednisone, as it is something we

can't take forever. It has dreadful side effects under long term use. Yes, it

will help for awhile. But, this is where the side effects will out weigh its

benefits over the long term use. I've had shots to the affected area and if you

don't get them too often, it is very effective. I've had them in shoulders,

knees, and SI joints. If you get them too often, it will do more harm to the

joints. I've even had the dreadful eye steroid shots...it isn't as bad as it

sounds. It is not given in the eye ball....but the area around the eye ball. I

think my doctor was more scared than I was! That's what scared me the most.

:-(

Connie

[Guest guest]

Jim, Mike Z can tell you about sleeping with a heating pad. He has permanent

scars from sleeping with it on too high. I've used heating pads

before....but now I seem to get more use of those large ones that you stick in

the

microwave 6 X 12 inches. You can freeze them, too. I have several sizes....one

that

straps on knee, elbow, wrist, or neck and then the larger size which is

good for back and larger areas. I've used those tapes on ones (charcoal) you

get

a drug store, too. They can become a little expensive when you have to

change them every 24 hours and have a long running flare up of AS. I've often

wondered how they activate when they hit the air. I've tried to save them by

cutting them in half....it doesn't work! I guess if you take them out of the

package....that's it, you can't save them for later on. My daughter (who is a

nurse) taught me how to do a moist pad. Soak a small hand towel, wring it out,

and cover it with saran wrap, tape edges, etc. so no moisture can escape. Put

it in microwave to temp you can stand. It lasts a long time and can be

reheated, etc. Moist heat is best for us as it penetrates better.

Sometimes heat and then cold packs are good. If you can get someone to do

deep massage...it really makes a change for me. It hurts like the dickens when

you begin, but after 10 minutes, your muscles begin to loosen and the pain is

tolerable again. Many times it is just the stiffening up of muscles that

causes pain and that can cause even more pain...not just the inflammation.

Double whammy! My husband learned technique from a daughter who went to massage

school She lives in Miami.....so isn't much help to me unless she visits. I

could do with a massage everyday of my life now....but I only wait until I'm

screaming/crying before I ask or most of them...by that point, he offers.

[Guest guest]

Yes, there are times I have pain when trying to turn over. I'm not

able to sleep on my back because of AS and a herniated disc. I can't

sleep on my stomach either. When I sleep on my side, I use a small

pillow between my legs. I know it sounds funny, but it helps take

pressure off my hips/back.

When I first herniated my disc, I had to use my arms to help me change

positions in my bed. Now it only hurts if I roll/turn the wrong way as

I'm waking up.

Betty J in OKC

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> I'm wondering for those of you with AS, do you have troubles rolling

> over at night or sleeping on your belly or back?

>

>

[Guest guest]

I also had trouble sleeping on my back before I broke my neck. I slept on my

sides using a pillow between my knees. After breaking my neck I can't sleep on

my side yet. I want to at times but my body goes numb. With all the MRI's they

found out that my back is all fused thanks to my AS so I'm sure that's the

reason. I sleep with two pillows now laying on my back again. A heating pad

helps at times to relax.

Jim

[Guest guest]

HI Connie,

Yes, that is exactly it. I " ve been sleeping with no pillow for

quite some time now. Say about a year and I didn't even know why. It

just wasnt comfortable. Sometimes I do have a squishy one that I can

squish under my head and neck and that's ok for a while.

When I roll over, sometimes I have to sit up and then turn becuase

it's like my hips are glued down. I sometimes used my hand to help

push them over. Here I thought I was just making this all up in my

head. Thank goodness I'm not and finally are getting some ideas of why

the pain is.

Can I ask, is prednisone helpful for this?

in MI

[Guest guest]

WOW this is exactly what I am going through now and I have a stiff neck I

have had now for over two months, I do have a pillow though, I have to sleep

on one side because the other one hurts too much, and trying to get

comfortable on my back just isnt an option I am beginning to think I would

be better off in a recliner at night....

Also has anyone here had numbness in BOTH hands at one time? It seems to

come from my neck ..... It comes and goes and if I sit on the edge of the

bed, hang my head and arms straight down it will go away......

Lin

MASS. REPRESENTATIVE

DRNA, NEPR, HWS, IHA

CGC evaluator/ instructor

Southbridge Home for Wayward Weenies

http://www.petfinder.com/shelters/MA162.html

[Guest guest]

I would suggest you look into it a little further Lin. I had the same problems

and still do. The left side if my neck started hurting until i could hardly turn

it, that's when I got more active, playing tennis, walking and hiking, and then

riding a bike.

I was doing alot better after eight months and then I had my accident.

Afterwards is when they finally found out what was wrong , from all the x-rays,

scans, and MRI's. The arthritis slowly fused all my vertabres in my back except

between # 2 and #3, where i broke my neck. After laying still for so long, I

think that is what finally did it. So i strongly suggest anyone with neck and

back problems have the doctor look a little closer.

Jim

[Guest guest]

Hi ,

Yes I have trouble rolling over at night. My husband said I half sit up and

then turn over when I am fast asleep.

I think my sub-consious has learnt, it saves visit to the Chirop.

I am not very comforatable lying on my back.

When I went to rehab. they suggested that you lie on your side, put a pillow

between your legs and one pillow under your hip. I do find it does take the

pressure off.

Bye Lyn

[Guest guest]

Sounds like you have found your own form of ttaction. I used an over the

door traction unit at one time and it was a great help to me.

Yeah I have numbness in both hands but with a bad neck, shoulders, elbows

and wrists, I can't expect much better. It comes and goes, and sometimes is

better on one side than the other, but there are times when both are about

equal.

GA