Re: To Fran and Marti-RE:Pa and Fibro

[Guest guest]

Dear Pat, I just hate to hear that you are in this much pain, from PA or

from Fibro. Both can be just devastating alone, but together they can be a

real nightmare. I started thinking of some of my " tricks " or things I've

done in the past to help with Fibro when it's really bad and thought maybe

some of these might help you. They are only some things that have helped me

and I cant' verify that they have helped anyone else. Even my daughter and

I are very different on how we respond to treatment. Anyway, they can't

hurt, as far as I'm concerned.

1. I sleep with tons of pillows. My husband accuses me of building a fort

every night (to keep him out...no boys allowed I guess...lol). Basically I

arrange them in a upside down V shape. I've found that this gives my neck,

shoulders and arms a lot of support. I also use pillows on my sides with

helps with the rib pain. It's a pain to arrange them every night, but it

makes such a big difference to me. The Princess and the Pea story really

does apply to me where Fibro is concerned.

2. When the pain is really bad, I try to take a nap. Sometimes just a small

amount of sleep will relax the muscles enough to stop the pain.

3. One drug that has probably helped me the most, is Xanax. Doctors hate to

prescribe it since it's so addicting. I probably would have a hard time not

taking it now since I " ve been on it for almost 10 years. I do go from 1

pill a day to sometimes 3, so the amount all depends on the pain. I've

found it relaxes me without knocking me out, unless I take 2 at a time. If

you can get your doctor to write even a low dose for a short time, it might

be worth it just to see if it does help you. Some doctors realize how

important staying calm can be with fibro, and others just worry about the

addicting factor. All I know is it has made a huge difference in my life.

4. When I have a really bad knot or pain trigger spot... I use my thumb, if

they aren't hurting too much from PA..lol, and apply pressure. You start

out slowly and build up until you are pushing as hard as you can stand it.

Sometimes when you let go or even before, you can feel the knot just break

up. I've found that even if it doesn't break, the pain is less after the

" painful pushing " . Why it works I have no idea, maybe it just feels better

because I'm not pushing on the sore spot anymore, but all in all it really

does seem to stop the burning pain for awhile.

5. I go from heat to ice to heat to ice. I do that for about 30 minutes

also when a spot is really bad.

6. One spot that is really hard to treat with my daughter and myself is the

area right below or over you knees. It just seems to ache like crazy and

nothing really seems to work. We found that if you can put a tight knee

brace or ace bandage on, it helps tremendously with the pain. I think it

either supports the muscle, or again does something with applying pressure

to the whole area. I couldn't tell you how many nights my daughter and I

would see who could find the knee pads first..lol. You want the tight ones,

as long as you are comfortable. Right now they don't help me too much

because of the edema in my legs, from the PA. But my daughter used to wear

them to school under her jeans all the time.

7. Meditation or visualization really helps too. It might just be you are

finally relaxing for a few minutes, but I've found 15 minutes of quiet time,

lying down or in the recliner can really help make a difference.

8. Avoid using your arms too far from your body. I know that sounds

strange, but say cleaning out a tall cabinet will just kill you in the long

run. Sometimes just holding the hair dryer is way too much. You just learn

to work with your arms close to your body, or you support them all the time

while you are doing something..

9. Getting a good night's sleep is really important. One thing I've found

is most fibro people have a sleep disorder of some type. The muscles never

completely relax and you wake up feeling worse than when you went to bed. I

was doing pretty well in this area until I went on prednisone and now Arava.

As much as Arava has helped me with PA, and the prednisone with the

inflammation, they both cause really bad insomnia. Now I'm lucky to get 4-5

hours a night, but before that I always tried to get at least 8 and 10 was

even better.

Well Pat, that's all I can think of right now. I hope one of these helps

you deal with your pain today. Just remember it can get better. When it's

bad day after day, you start to lose hope and think the pain will never end.

Once you get the medications and a routine down, it will improve. Just hang

in there. Let me know if I can help in anyway. Take care. Love, Fran

[ ] To Fran and Marti-RE:Pa and Fibro

Thanks Fran and Marti for responding so quickly to my question on PA

and Fibro. I will check out all the websites you listed and if I find

out anything new I will let you know. My last Rhumey appt got my

husband and I wondering alot more about connections between the two

diseases. You can normally find a lot of info on fibro or Pa but not

the combination. My Rhuemy is concerned about the fibro right now. He

is trying to get me on Remicaide for the PA because the enbrel has

stopped working for me. He said the PA is severe. But his main focus

is the Fibro because the pain is getting worse and he feels it is

mostly soft tissue pain. I asked him about cortisone shots for my

thumbs because the osteo is so bad in my thumbs. His response was

that the thumbs are degenerative like my spine and is just one local

place,and that the pain I am having is so widespread that a shot in

my thumb won't do a thing for pain. I am on a antidepressant for

sleep and ambien and vicodin, I am also on Mobic and enbrel until the

remicaide gets approved.

I know fibro isn't supposed to cause permenant damage to the muscles,

but we can't help but wonder since the two diseases have progressed

so rapidly whether one effect the other and how much. I agree with

you Fran, despite the medical authorties saying fibro doesn't get

worse I have to say that it most definitely can. My pain is steady. I

think the times I just can't move are due to the PA flaring more.

They say fibro pain waxes and wanes but I haven't experienced the

waning part at all.

I know I am rambling on here, I am sorry about that. It is just all

so confusing and your feedback was very helpful. Like I said if I

find out anything new I will let you know. I think the medical

community still doesn't know that much about fibro, therefore really

doesn't know much about PA and Fibro. Fran, I am sorry that you got

the disease when there was even less info on it. It must have been

extremely frustrating. I am also sad that your daughter has it so

bad.She is lucky to have you on her side though.

Thanks again

Pat

[Guest guest]

Hi Fran:

Gee, I thought I was the only one that built a fort every night.

I definitely know what you mean how much it helps.

Bye

Barb in Snowy, windy, Michigan

[Guest guest]

Thank you Fran,

yes, the knee pain that just won't go away. I will try the tight

bandage. Does it sometimes go right into your hip. Thank you for all

the advice. We are trying to get the sleep controlled, and I will try

more pillows. Right now he only has me on the vicodin but when I see

him I will ask about the xanex. I do sometimes give into the nap but

not often because I am afraid that it intfers with nighttime sleep.

Sometimes I just can't help it and 30 minutes makes me feel

better.you have been so supportive.

Thanks again

Pat

>

> Dear Pat, I just hate to hear that you are in this much pain, from

PA or

> from Fibro. Both can be just devastating alone, but together they

can be a

> real nightmare. I started thinking of some of my " tricks " or

things I've

> done in the past to help with Fibro when it's really bad and

thought maybe

> some of these might help you. They are only some things that have

helped me

> and I cant' verify that they have helped anyone else. Even my

daughter and

> I are very different on how we respond to treatment. Anyway, they

can't

> hurt, as far as I'm concerned.

>

> 1. I sleep with tons of pillows. My husband accuses me of building

a fort

> every night (to keep him out...no boys allowed I guess...lol).

Basically I

> arrange them in a upside down V shape. I've found that this gives

my neck,

> shoulders and arms a lot of support. I also use pillows on my

sides with

> helps with the rib pain. It's a pain to arrange them every night,

but it

> makes such a big difference to me. The Princess and the Pea story

really

> does apply to me where Fibro is concerned.

> 2. When the pain is really bad, I try to take a nap. Sometimes

just a small

> amount of sleep will relax the muscles enough to stop the pain.

> 3. One drug that has probably helped me the most, is Xanax.

Doctors hate to

> prescribe it since it's so addicting. I probably would have a hard

time not

> taking it now since I " ve been on it for almost 10 years. I do go

from 1

> pill a day to sometimes 3, so the amount all depends on the pain.

I've

> found it relaxes me without knocking me out, unless I take 2 at a

time. If

> you can get your doctor to write even a low dose for a short time,

it might

> be worth it just to see if it does help you. Some doctors realize

how

> important staying calm can be with fibro, and others just worry

about the

> addicting factor. All I know is it has made a huge difference in

my life.

> 4. When I have a really bad knot or pain trigger spot... I use my

thumb, if

> they aren't hurting too much from PA..lol, and apply pressure. You

start

> out slowly and build up until you are pushing as hard as you can

stand it.

> Sometimes when you let go or even before, you can feel the knot

just break

> up. I've found that even if it doesn't break, the pain is less

after the

> " painful pushing " . Why it works I have no idea, maybe it just

feels better

> because I'm not pushing on the sore spot anymore, but all in all it

really

> does seem to stop the burning pain for awhile.

> 5. I go from heat to ice to heat to ice. I do that for about 30

minutes

> also when a spot is really bad.

> 6. One spot that is really hard to treat with my daughter and

myself is the

> area right below or over you knees. It just seems to ache like

crazy and

> nothing really seems to work. We found that if you can put a tight

knee

> brace or ace bandage on, it helps tremendously with the pain. I

think it

> either supports the muscle, or again does something with applying

pressure

> to the whole area. I couldn't tell you how many nights my daughter

and I

> would see who could find the knee pads first..lol. You want the

tight ones,

> as long as you are comfortable. Right now they don't help me too

much

> because of the edema in my legs, from the PA. But my daughter used

to wear

> them to school under her jeans all the time.

> 7. Meditation or visualization really helps too. It might just be

you are

> finally relaxing for a few minutes, but I've found 15 minutes of

quiet time,

> lying down or in the recliner can really help make a difference.

> 8. Avoid using your arms too far from your body. I know that sounds

> strange, but say cleaning out a tall cabinet will just kill you in

the long

> run. Sometimes just holding the hair dryer is way too much. You

just learn

> to work with your arms close to your body, or you support them all

the time

> while you are doing something..

> 9. Getting a good night's sleep is really important. One thing

I've found

> is most fibro people have a sleep disorder of some type. The

muscles never

> completely relax and you wake up feeling worse than when you went

to bed. I

> was doing pretty well in this area until I went on prednisone and

now Arava.

> As much as Arava has helped me with PA, and the prednisone with the

> inflammation, they both cause really bad insomnia. Now I'm lucky

to get 4-5

> hours a night, but before that I always tried to get at least 8 and

10 was

> even better.

>

>

> Well Pat, that's all I can think of right now. I hope one of these

helps

> you deal with your pain today. Just remember it can get better.

When it's

> bad day after day, you start to lose hope and think the pain will

never end.

> Once you get the medications and a routine down, it will improve.

Just hang

> in there. Let me know if I can help in anyway. Take care. Love,

Fran

[Guest guest]

Pat and Fran,

I have been in pt for fibro particularly in my upper back. My pt uses her

thumbs or elbows

where the triggers are. My used to cause headaches since the triggers are

mostly around

my shoulders. She told me to put two tennis balls in a sock (not a thick one I

later found

out) and lie on them so that they hit the trigger points and cause them to break

up. each

time you ddo it it should take less time. She also did myofacial release a lot

because she

felt too much deep tissue work in too short a time wouldn't be good. I also

found a ball

with points on it that does the same type of thing. If (and I am giving my age

away here)

you remember Bonnie Pruden she has a good book on trigger point therapy that I

got at

Amazon

Good luck

Jerre

PS Fran the punch line to that story didn't show up in the posting I read.

>

> Dear Pat, I just hate to hear that you are in this much pain, from PA or

> from Fibro. Both can be just devastating alone, but together they can be a

> real nightmare. I started thinking of some of my " tricks " or things I've

> done in the past to help with Fibro when it's really bad and thought maybe

> some of these might help you. They are only some things that have helped me

> and I cant' verify that they have helped anyone else. Even my daughter and

> I are very different on how we respond to treatment. Anyway, they can't

> hurt, as far as I'm concerned.

>

[Guest guest]

Dear Pat, I did have a lot of hip problems along with my knee. Sometimes

along the side of my legs would just throb and hurt like crazy. Lately my

left leg has felt twice as heavy as my right leg, and I found out I had a

bad case of bursitis in my hip. I got a injection of prednisone from pain

doctor into the hip joint and that really did help. I still have swelling,

too much if you ask me, but at least the hip pain has let up. I know a lot

of people with fibro who have bad hips, so I think it's pretty common. One

tip on hip pain...(I should write a book I think..lol) if you sleep with a

pillow between your knees it really does take the pressure off your hip

joint.

Take care Pat. I also think massage therapy is great for fibro too. It

takes time to find a good therapist, but once you do they become your best

friend. I hope it lets up soon. Love, Fran

---Original Message-----

From: pfried520 [mailto:Pfried520@...]

Sent: Sunday, December 12, 2004 1:45 PM

Subject: [ ] Re: To Fran and Marti-RE:Pa and Fibro

Thank you Fran,

yes, the knee pain that just won't go away. I will try the tight

bandage. Does it sometimes go right into your hip. Thank you for all

the advice. We are trying to get the sleep controlled, and I will try

more pillows. Right now he only has me on the vicodin but when I see

him I will ask about the xanex. I do sometimes give into the nap but

not often because I am afraid that it intfers with nighttime sleep.

Sometimes I just can't help it and 30 minutes makes me feel

better.you have been so supportive.

Thanks again

Pat

[Guest guest]

Dear Barb, I'm glad I'm not alone in the pillow forts...lol. Take care,

Fran----Original Message-----

From: NITTYG@... [mailto:NITTYG@...]

Sent: Sunday, December 12, 2004 2:27 PM

Subject: Re: [ ] To Fran and Marti-RE:Pa and Fibro

Hi Fran:

Gee, I thought I was the only one that built a fort every night.

I definitely know what you mean how much it helps.

Bye

Barb in Snowy, windy, Michigan

[Guest guest]

Dear Jerre, I used to get massages regularly before my PA got so bad and I

though they really did help the fibro problems. I've tried the tennis ball

in a sock therapy but I have a hard time lying on them since they are so

blasted hard...lol. They might help someone else though.

If it was the one joke I think I posted, I'll do it again. I hope this

doesn't offend anyone. I had seen the first part several times but never

the second part. Thought it might make some of you smile. Love, Fran

What would have happened if it had been the three Wise Women instead of

three Wise Men?

1. They would have asked for directions.

2. They would have arrived on time.

3. helped deliver the baby

4. cleaned the stable

5. brought practical gifts.

6. and made a casserole.

But what would they have said as they left?

" Did you see those sandals was wearing with that gown? "

" Did you see that drummer boy? He can beat my drum anytime! "

" I heard that ph isn't even working right now. "

" And that donkey they are riding has seen better days too. "

" Wanta bet on how long it will take for you to get that casserole dish

back? "

" That baby doesn't look anything like ph. "

" Virgin my @X% & S, I knew her in school! "

[ ] Re: To Fran and Marti-RE:Pa and Fibro

Pat and Fran,

I have been in pt for fibro particularly in my upper back. My pt uses her

thumbs or elbows

where the triggers are. My used to cause headaches since the triggers are

mostly around

my shoulders. She told me to put two tennis balls in a sock (not a thick

one I later found

out) and lie on them so that they hit the trigger points and cause them to

break up. each

time you ddo it it should take less time. She also did myofacial release

a lot because she

felt too much deep tissue work in too short a time wouldn't be good. I

also found a ball

with points on it that does the same type of thing. If (and I am giving

my age away here)

you remember Bonnie Pruden she has a good book on trigger point therapy

that I got at

Amazon

Good luck

Jerre

PS Fran the punch line to that story didn't show up in the posting I

read.

[Guest guest]

I agree with the pillow between the legs when you are sleeping on one side.

I laughed at the " pillow fort " described in an earlier post. That is me. It

takes four pillows to sleep comfortably: one for my head, one on each side,

and one handly to put under my knees when they start throbbing.

I also completely agree with the massage therapy. I have a weekly one-hour

massage. I think that has been the key to keeping up with my active life.

I know that is not covered my insurance (should be) and is too expensive for

some. I had to convince my husband it was a medical necessity and not a

luxury! In our small town, a one-hour massage is $40. That is much less

expensive than resorts or cities.

My husband makes a good income. My teaching salary barely covers an hour

massage and some cleaning help every week!

Ks Di

RE: [ ] Re: To Fran and Marti-RE:Pa and Fibro

>

>

> Dear Pat, I did have a lot of hip problems along with my knee. Sometimes

> along the side of my legs would just throb and hurt like crazy. Lately my

> left leg has felt twice as heavy as my right leg, and I found out I had a

> bad case of bursitis in my hip. I got a injection of prednisone from pain

> doctor into the hip joint and that really did help. I still have swelling,

> too much if you ask me, but at least the hip pain has let up. I know a

lot

> of people with fibro who have bad hips, so I think it's pretty common.

One

> tip on hip pain...(I should write a book I think..lol) if you sleep with

a

> pillow between your knees it really does take the pressure off your hip

> joint.

>

> Take care Pat. I also think massage therapy is great for fibro too. It

> takes time to find a good therapist, but once you do they become your best

> friend. I hope it lets up soon. Love, Fran

[Guest guest]

Thanks Fran, I can finally send a laugh to my husband instead of the other way

arround!

this is great.

Jerre

>

> Dear Jerre, I used to get massages regularly before my PA got so bad and I

> though they really did help the fibro problems. I've tried the tennis ball

> in a sock therapy but I have a hard time lying on them since they are so

> blasted hard...lol. They might help someone else though.

>

> If it was the one joke I think I posted, I'll do it again. I hope this

> doesn't offend anyone. I had seen the first part several times but never

> the second part. Thought it might make some of you smile. Love, Fran

>

> What would have happened if it had been the three Wise Women instead of

> three Wise Men?

>

> 1. They would have asked for directions.

> 2. They would have arrived on time.

> 3. helped deliver the baby

> 4. cleaned the stable

> 5. brought practical gifts.

> 6. and made a casserole.

>

> But what would they have said as they left?

>

> " Did you see those sandals was wearing with that gown? "

> " Did you see that drummer boy? He can beat my drum anytime! "

> " I heard that ph isn't even working right now. "

> " And that donkey they are riding has seen better days too. "

> " Wanta bet on how long it will take for you to get that casserole dish

> back? "

> " That baby doesn't look anything like ph. "

> " Virgin my @X% & S, I knew her in school! "

>

>

> >

[Guest guest]

In a message dated 12/13/2004 5:34:09 AM Eastern Standard Time,

fran@... writes:

Take care Pat. I also think massage therapy is great for fibro too. It

takes time to find a good therapist, but once you do they become your best

friend. I hope it lets up soon. Love, Fran

That is the best thing that I can recommend for all of you out there with

fibro. If not for my weekly massages, I would be in much worse shape then I

am. I go to the chiropractor weekly who has a therapist familiar with fibro

and she is wonderful. It costs me $25.00 for a half hour and my ins will not

pay but it is well worth it. She works on my knots in the back and neck and

stretches my arm and leg muscles. It is the best. I missed it last week and

can really feel the difference.

Janet

[Guest guest]

In a message dated 12/13/2004 5:37:34 AM Eastern Standard Time,

fran@... writes:

Dear Barb, I'm glad I'm not alone in the pillow forts...lol. Take care,

I am a fort person as well. My husband tells everyone how I build this

around me and my friends joke that this is my way of keeping him away at night.

Janet