Re: PA and fibromyalgia -- is this a common mixture?

[Guest guest]

Hi Gayle and Welcome,

I am pretty new here too and I also suffer from both the fibro and the PA. I

went in to my rheumatologist last Monday and he is only treating me for the

PA ( I don't think he is a big believer in fibromyalgia) so I will be going

back to my regular doctor for that now...very frustrating. I know what you

mean about the lack of sleep. I would like to sleep more but I can't seem to

fall asleep and stay that way. I was previously given pamelor to help with

that but I think it had the opposite effect on me and I was awake til the wee

hours of the morning. So until I go back to my other doctor, I am stuck too.

I hope things improve for you!

Take care,

D in Minnesota

[Guest guest]

Greetings Gayle, one of the first things I noticed when I joined this

group was that it seemed that a lot of people on here had

fibromyalgia. I agree that there appears to be a link. Just

yesterday I was shocked by an " article " i read in the new york

times. The sponsers have a web site, www.fromcausetocure.com

Follow the page to the supplement on arthritis. i didn't research

the site too deeply yet but according to the article, fibro is now

the 2nd most common diagnosis made inrheumatolgy clinics. Who would

have thought?? I was " relieved " to find out I had fibro. It

explained a lot. I really couldn't imagine what was wrong with me

and not knowing made things much worse. good luck and welcome to the

group.

> Hi everybody.

>

> For those of you who haven't seen my name before, I recently

> subscribed to this group and I thinks it's great. I enjoy reading

all

> of your emails and seeing how you encourage each other. It's nice

to

> have support.

>

> As I wrote in my first posting, I'm in quite a bit of pain most of

> the time but the real killer for me is the lack of sleep. I used to

> get by quite well on six to eight hours but now I get between ten

and

> fourteen hours a night and I still don't feel rested.

>

> On Friday I found out that my exhaustion can be explained by the

fact

> that in addition to PA, I also have fibromyalgia. This is a fact

that

> my reumatologist has apparently known for a while but he didn't

feel

> it was necessary to share it with me. (Jerk!)

>

> Anyway, I'm wondering if anyone knows whether it is common to have

> both PA and fibromyalgia.

>

> Also, my understanding is that the meds that I'm already taking for

> PA are supposed to help with the FMS. Of course exercise is

> recommended for people with FMS but a herniated disc prevents me

from

> do anything too rigorous. I plan to look into aqua-fitness and

yoga.

> If anyone wants to recommend any other types of non-strenuous

> exercise, I'm open to suggestions.

>

> Staying positive,

> Gayle

>

> PS. I recently saw a saying that I've decided to adopt as my new

> motto. " Everything is okay in the end. If it's not okay, then it's

> not the end. "

[Guest guest]

For those of you with fibromyalgia--I think it is also closely related to

hypothyroidism. I know I had classic fibromyalgia symptoms before I started

taking synthroid--the insomnia was terrible and went away after. Something

to look into.

[Guest guest]

I have both PA & Fibro. Apparently there really isn't that much you can do

about the fibro other than anti-depressents which relax the nerve endings.

I'm toldd fibro is nerve endings that are over firing and that is why you

have constant pain everywhere and don't sleep. A friend who has it takes a

sleeping tablet every once and a while to get a decent night sleep. I'm

find that yoga and meditation is really helping. It is a real illness and

if your doctor doesn't think so then you should change.

Kate

Re: [ ] PA and fibromyalgia -- is this a common

mixture?

> Hi Gayle and Welcome,

> I am pretty new here too and I also suffer from both the fibro and the PA.

I

> went in to my rheumatologist last Monday and he is only treating me for

the

> PA ( I don't think he is a big believer in fibromyalgia) so I will be

going

> back to my regular doctor for that now...very frustrating. I know what

you

> mean about the lack of sleep. I would like to sleep more but I can't seem

to

> fall asleep and stay that way. I was previously given pamelor to help

with

> that but I think it had the opposite effect on me and I was awake til the

wee

> hours of the morning. So until I go back to my other doctor, I am stuck

too.

> I hope things improve for you!

> Take care,

> D in Minnesota

>

>

>

>

[Guest guest]

Gayle,

I have just posted another message saying I have fibro and PA.

Firstly, change doctors - it is bad enough being ill withoutt having to put

up with lack of support and respect from your doctor.

Secondly, yoga has really helped me. Four weeks ago I was in incredible

pain. I couldn't believe that my PA could be causing it has I had no

specific joint issues at the time. I went to my rheumy who did the pressure

point tests on me and diagnosed fibro....what a relief to know I had

something - I thought I was going insane. She recommended exercise,

relaxtion and pain management. So I have been walking, doing yoga and

meditation and seeing a phycitrist (spelling - I'm a hopeless speller).

I've been feeling amazingly better, needless to say though I had a relapse

yesterday and felt terrible.

Anyway with your back problem perhaps you should also look into

hyrotherapy - as floating in a really warm pool and doing light exercise

where there might help.

Good luck.

Kate

[ ] PA and fibromyalgia -- is this a common

mixture?

> Hi everybody.

>

> For those of you who haven't seen my name before, I recently

> subscribed to this group and I thinks it's great. I enjoy reading all

> of your emails and seeing how you encourage each other. It's nice to

> have support.

>

> As I wrote in my first posting, I'm in quite a bit of pain most of

> the time but the real killer for me is the lack of sleep. I used to

> get by quite well on six to eight hours but now I get between ten and

> fourteen hours a night and I still don't feel rested.

>

> On Friday I found out that my exhaustion can be explained by the fact

> that in addition to PA, I also have fibromyalgia. This is a fact that

> my reumatologist has apparently known for a while but he didn't feel

> it was necessary to share it with me. (Jerk!)

>

> Anyway, I'm wondering if anyone knows whether it is common to have

> both PA and fibromyalgia.

>

> Also, my understanding is that the meds that I'm already taking for

> PA are supposed to help with the FMS. Of course exercise is

> recommended for people with FMS but a herniated disc prevents me from

> do anything too rigorous. I plan to look into aqua-fitness and yoga.

> If anyone wants to recommend any other types of non-strenuous

> exercise, I'm open to suggestions.

>

> Staying positive,

> Gayle

>

> PS. I recently saw a saying that I've decided to adopt as my new

> motto. " Everything is okay in the end. If it's not okay, then it's

> not the end. "

>

>

>

>

>

[Guest guest]

> Hi Gayle and Welcome,

> I am pretty new here too and I also suffer from both the fibro and

> the PA. I went in to my rheumatologist last Monday and he is only

> treating me for the PA ( I don't think he is a big believer in

> fibromyalgia) so I will be going back to my regular doctor for that

> now...very frustrating. I know what you mean about the lack of

> sleep. I would like to sleep more but I can't seem to

> fall asleep and stay that way. I was previously given pamelor to

> help with that but I think it had the opposite effect on me and I

> was awake til the wee hours of the morning. So until I go back to

> my other doctor, I am stuck too.

> I hope things improve for you!

> Take care,

> D in Minnesota

Thanks for the reply .

Don't forget to check the possible side-effects of your medication.

Often the very meds that are supposed to help us end up doing more

harm than good. I was recently given Celebrex for the PA and ended up

with major insomnia (in addition to the dizzy spells, depression,

irregular menstrual cycle and a handful of other cute little

surprises). Once I went off the Celebrex, the insomnia went away

within a few days.

My doctor prescribed Elavil to help me sleep and it helps a bit with

the depression too. I still don't sleep all that well but I fall

asleep pretty quickly and I no longer wake up countless times during

the night. I take the pills a couple of hours before bedtime

because they take a bit of time to kick in. Once they kick in though,

I barely have time to count three sheep!

Sweet dreams,

Gayle

[Guest guest]

> Greetings Gayle, one of the first things I noticed when I joined

> this group was that it seemed that a lot of people on here had

> fibromyalgia. I agree that there appears to be a link. Just

> yesterday I was shocked by an " article " i read in the new york

> times. The sponsers have a web site, www.fromcausetocure.com

> Follow the page to the supplement on arthritis. i didn't research

> the site too deeply yet but according to the article, fibro is now

> the 2nd most common diagnosis made inrheumatolgy clinics. Who

> would have thought?? I was " relieved " to find out I had fibro. It

> explained a lot. I really couldn't imagine what was wrong with me

> and not knowing made things much worse. good luck and welcome to

> the group.

>

Thanks for the link Ari. I spent a few minutes checking it out but I

plan to go back later when I have more time.

Like you, I was also quite relieved to find out that I had

fibromyalgia. I kept trying to figure out why I was so exhausted all

the time. That's why I was hugely disappointed (pronounced: peeved)

that my reumatologist chose to keep this information from me.

When I sat in his office, crying and telling him how exhausted I was,

all he did was write me a prescription and send me on my way. When I

finally asked him point-blank if he knew anything else that he wasn't

telling me, he told me about the fibromyalgia. He said it doesn't

make any difference since the treatments for PA and fibromyalgia are

the same. Aargh! The difference is that one way I keep wondering

what's wrong with me and the other way I know! (Thanks for letting me

get that off my chest. ;-)

If there's one thing that I've learned over the past few years it's

that we are each entirely responsible for our own healthcare (at

least here in Montreal). If you want to know the answers, you've got

to ask the right questions. If you want to try out alternatives,

you've got to find them yourself. I don't try anything new without

telling my doctors but I actively search out the information on my

own. That's why I really appreciate this group.

Thanks again,

Gayle

Moderator note: Where does your RD get the idea that the treatments for PA and

FMS are the same? My FMS was exacerbated by the PA, but the two conditions were

treated completely differently, and by completely different doctors, in my case.

PHDRWD@...

[Guest guest]

> Gayle,

>

> I have just posted another message saying I have fibro and PA.

>

> Firstly, change doctors - it is bad enough being ill withoutt

> having to put up with lack of support and respect from your

> doctor. Secondly, yoga has really helped me. Four weeks ago I was

> in incredible pain. I couldn't believe that my PA could be

> causing it has I had no specific joint issues at the time. I went

> to my rheumy who did the pressure point tests on me and diagnosed

> fibro....what a relief to know I had something - I thought I was

> going insane. She recommended exercise, relaxtion and pain

> management. So I have been walking, doing yoga and meditation

> and seeing a phycitrist (spelling - I'm a hopeless speller).

> I've been feeling amazingly better, needless to say though I had

> a relapse yesterday and felt terrible.

>

> Anyway with your back problem perhaps you should also look into

> hyrotherapy - as floating in a really warm pool and doing light

> exercise where there might help.

>

> Good luck.

>

> Kate

Thanks Kate.

I don't plan to go back to that reumatologist again for a while but

unfortunately, I may not be able to find another one to treat me.

Most of the doctors in Montreal are overworked and underpaid and

they've closed their practices to new patients. Even when doctors

will accept new patients, the waiting lists are unbelievably long.

It's really quite ridiculous. I only managed to get in to see this

guy because he was my grandmother's doctor. (Most doctors make a

special effort to keep families together.)

Anyway, luckily I just started seeing a fabulous G.P. (who only

agreed to see me because he's my mom's doctor) and he more than

makes up for that other quack. This guy actually listens as much as

he speaks! He even gave me his personal email address so that I can

keep him up to date on my condition. I already sent him two emails

and both times he replied to me the very next morning!

Anyway, I really appreciate your suggestions. I'll look into them.

Hydrotherapy in particular sounds interesting since hot baths have

really helped me when I've been at my worst.

Side note:

It's amazing what a little hope and a little sleep can

accomplish. I know I'm certainly not out of the woods yet but

I feel so much better just knowing why I've been so tired. This

combined with the fact that 50 mg of Elavil are doing wonders

to help me fall asleep and I feel like a new person.

It's hard to believe that only a few days ago my first waking

thought every day was: " Oh Lord I wish I was dead " . I'm

starting to feel stronger again and though I'm still in a lot

of pain, I don't care. At least the uncontrollable fits of

crying have finally stopped. It was getting to the point where

I couldn't function at work. Now I'm feeling human again.

Never underestimate the power of hope...

Gayle