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nancy re:fibromyalgia

Posted by kay on 5/03/02 at 10:32 (082299)

i read the post below and as you can see there are a wide range of opinions on fibro. i was in a car wreck 7 years ago and had one spot on my back that just hurt so bad. no amount of therapy would help. it seemed to spread. i was finally diagnosed with fibro two years later. i have had trouble sleeping since the birth of my firstborn and when my children were old enough i went to work in a factory. i always seemed to be in pain in the arms and wrist. but no carpal tunnel showed when i had the test. when i had the accident years later eveything came to a head. feet got worse, back and arms got worse. my poditrist sent me to a rhumatologist and i was diagnosed with the fibro. what will a definite diagnosis do for you? not a lot. some people it only gives them another reason to sit around and whine and feel sorry for themselves. i went through that stage. i now try to keep positive. when i am hurting i go to the bathroom and have a good pity party for myself. then i wash my face and go on with life. the pain i have experienced with fibro is nothing compared to the pain of plantar fasciitis. i never thought with fibro i couldn't go on. but with the plantar fasciitis the pain has been so bad i just felt so over whelmingly depressed.
with fibro the only treatment is elavil at night. thats a antidepressant that will help you sleep but screw up your sex life. so i don't take it. i take a NSAID drug every day and ultram which is a non narcotic pain killer. i couldn't function on narcotics as i want a life. also tylenoh can be taken with these others to help. and every once in a while if i start having muscle spasm i take a flexril at night before bed for 3-5 nights.
i have found that your attitude is everything. right now my upper back is burning badly so that means i need to get up and move around. not easy with this boot on my foot. but i could sit here and feel sorry for myself but that would be nonproductive.
as for people not believing in fibro. well where did it come from? why are so many being diagnosed with it? this is just my opinion. you never heard of it 50 years ago. i believe it, like many other illnesses is enviormental. think of all our food additives, all the chemicals we use to clean with, and manufacturing poisins we breathe. its a sign of the times. we are killing ours selves.
a fibro test is merely a doctor pressing on 18 different spots on your body and saying does this hurt. if you get so many yes answers then you have a diagnosis.
good luck and keep a positive attitude. i know its hard. especially with bad feet.
kay

Re: nancy re:fibromyalgia

Lisa G on 5/03/02 at 11:21 (082301)

hi kay...
you are right...sitting still and feeling sorry for yourself is not the answer...but i do want to say that elavil at night isn't the only thing for fibro...i take remeron to sleep...and it doesn't mess up my sex life ;)

any kind of anti inflammatory for fibro won't work...fibro is a non-inflammatory condition...a NSAID for feet pain is different...

they do think that fibro was around even 50 years ago...was just not being diagnosed...

people can be affected at different levels...for me i have it fairly severely...i have had to quit my job because of it...some people have it and can run marathons...

i am sorry to be going on and on about it...but it is so misunderstood...and i have done a lot of research...and i just want people to understand how it can severely limit this person...but not this person...a lot of it is attitude...and yes...all the 'poisons' in our environment and food may be part of the culprit...i think i could write a book...

anyway...take care
and gentle huggggs to all of us who are hurting
lisa

Re: Why not?

Sharon W on 5/03/02 at 14:59 (082329)

Lisa,

You seem too be good with words -- and you've already done a lot of the necessary research -- why NOT write a book?

-- Sharon

Re: nancy re:fibromyalgia

nancy s. on 5/04/02 at 21:14 (082452)

thank you again to everyone who responded constructively to my concerns and questions, including kay and kathy and carole, and of course lisa -- you have all been very helpful. and to each of you dealing with fibromyalgia, you have my heartfelt sympathy and i hope life gets better for you. i don't know yet that i have fibro, but i plan to see my doc this week and get started on figuring out what's going on here.

i feel very determined, whatever it is, not to let it drag me down as my foot problems once did. easier said than done -- but thanks to experience and to several people here, i think i know a bit more now about dealing with mental outlook when it comes to chronic pain.

i'll post when i learn something more.

thanks again!
nancy

Re: nancy re:fibromyalgia

Suzanne D on 5/04/02 at 21:27 (082454)

Dear Nancy,

I don't know anything about fibromyalgia, and that is why I didn't respond initially to your post. But I WOULD like to take this opportunity to send good wishes your way - and also to those who wrote who suffer from this! Armed with more information about the disease, I hope that your determination will help you combat whatever the problem might be.

I am interested and care about you!

Best wishes,
Suzanne :-)

Re: nancy re:fibromyalgia

nancy s. on 5/05/02 at 17:49 (082536)

suzanne, thank you very much for your good wishes and caring. these things seem to sum up your personality, from what i read of you on the board, and you are a special asset here.
thanks again,
nancy

Re: nancy re:fibromyalgia

JudyS on 5/06/02 at 14:59 (082668)

Hi Nancy - one of your remarks here caught my eye today.....the one about not letting possible FM drag you down as your foot problems once did. I've been having some relentless chest pain the last week or so and, as it happens, it's a basic case of muscle strain due to some heavy lifting a couple of weeks ago. However, while waiting for a diagnosis, my husband kept telling me to 'take it easy'. My consistent reply to him has been, no, I'm not an invalid and I won't let this park me in my easy chair the way my feet did. I wonder if a lesson we've learned is to not give in to pain quite so much - or at least not give in to it's nebulous nature so much. I don't know and I'm sure it's different for everyone. But I do know that my PF eventually gave way to a much stronger, 'take-charge' attitude on my part.

Re: Judy

wendyn on 5/06/02 at 20:30 (082725)

Judy - did your doctor call it something like costochondritis? Is it on your breastbone and rib cage?

Re: nancy re:fibromyalgia

Lisa G on 5/06/02 at 20:49 (082729)

what did you do with your 'take charge' attitude? i've had that attitude before...and always end up worse off...

lisa

Re: nancy re:fibromyalgia

nancy s. on 5/06/02 at 20:57 (082730)

hi judy, your 'take-charge' attitude sounds like it must feel good! i don't think i can say i have that, really, but i do feel more determined to focus on what i CAN do rather than on what i can't (which was a recipe for bad depression, as you know). that determination is one good thing that came out of the horrors of pf etc., and i'm grateful for it. i hope it carries through on any further difficult journeys; i think it must help in some way.
are you feeling better now? i hope so.
nancy

Re: Judy

john h on 5/06/02 at 21:57 (082738)

Judy: One time I woke up with a terrible chest pain and thought I was having some sort of heart problem. I then remembered that I had got my little aircraft (Beaver U6A) stuck in the mud on a dirt runway and had to get out and push it out of the mud in order to take off (my passengers had to help). I had strained the muscles (very big ones mind you) in my rib cage.

Re: Judy

JudyS on 5/07/02 at 10:10 (082801)

Yep, Wendy - you hit the nail on the head. Funny how it's eased up now that I know I'm not dying. :)
A word to the wise - the Hoover Upright Steamcleaner for carpet cleaning is very, very, heavy! You think you're going to be able to push it back and forth just like a vacuum cleaner but that's not the case. And I used it for two solid days around here.
And Wendy - there's even a message board for Costochronditis!

Re: nancy re:fibromyalgia

JudyS on 5/07/02 at 10:45 (082806)

That's a good question, Lisa. What did I do with my take-charge attitude? Probably very much as NancyS has described, I focused more on what I could do rather than on the never-ending frustration with PF and it's control over my sense of well-being. After I spent a year expecting it to go away on its own, and resting way too much, I decided to find out what I could about it and go from there. To be sure, I'd been very negligent in following doctor's orders which was a huge mistake. That decision brought me to this website. I started following the advice from Scott's book as well as that of folks who'd posted here regularly and those who'd posted about success with PF. I went to PT, I had two ESWT treatments with Dr. Z and have more recently been seeing a chiropractor regularly.
Deciding to be in charge is one of the two biggest hurdles there are, I think, with PF. The other was in realizing that it wasn't going to go away overnight if it has become chronic (most cases, if treated immediately and consistently, will go away sooner rather than later) One day you find yourself surprisingly on your feet for 30 minutes instead of 5, a couple of months later you're on your feet for an hour and suddenly realize that you have been! There are setbacks, you take them in stride and stay faithful to taking care of your feet.
Again, I think Nancy was accurate with her reference to focus. PF is there, it's not gonna disappear overnight unless you find a miracle orthotic. Even surgery takes a year to heal. So once you come to grips with that, then you focus on five-minute successes that can turn in to 5-hour successes over time.
I suspect, Lisa, that I sound a bit self-righteous here but your question has prompted me to update, with the board, my own progress because I'm nearly pain-free.
I've had PF for over 3 years, at it's most acute stage, I missed the window of opportunity for surgery because I was dead set against surgery.
My PF was as bad as it gets for a year or so with the crawling, depression, frustration, etc. Now, it has taken a long time, but once I decided to take charge, I have progressed consistently. I started with the ibuprofen, stretching, icing, taping, etc and stayed consistent with it. Then I went in to physical therapy with a guy who really knew what he was doing with deep-tissue massage designed to loosen some serious scarring. I did that for three months. Then I stayed with the icing, stretching, etc. Then I had ESWT. Then I stayed with the icing, stretching, etc. Then I had another ESWT. My heels got consistently better - albiet in very small increments! My latest efforts include weight-training, walking, and seeing a chiropractor for a sore Posterior tibial tendon which occured, I think, with the rigidity of casting, bracing and hard orthotics. I think these last three things have put me over the top in terms of over-all foot strength, and I think the ESWT put me over the top, eventually, with the heel pain. These days I can work around the house nearly pain-free for at least one day, sometimes three. I can go for a 30-minute walk and incorporate a 1/4 mile jog in to it. I use clog-style shoes almost exclusively (not for walking/jogging) I start every day with loosening and stretching in bed before I get up. I end every walk, or every day of activity, with icing. My next goal is to get back to the hours-long hikes that I really enjoy.
I think that the one advantage I had was that I didn't have a job that forced me to be on my feet all day. I also didn't have small children (althought the big ones.......).

Re: Judy

john h on 5/07/02 at 18:41 (082895)

I like my 8 lb Oreck.

Re: Another inspiring post, Judy

Julie on 5/08/02 at 02:00 (082950)

Thanks, my friend! :o) (Cheering you!)

Re: nancy re:fibromyalgia

Lisa G on 5/03/02 at 11:21 (082301)

hi kay...
you are right...sitting still and feeling sorry for yourself is not the answer...but i do want to say that elavil at night isn't the only thing for fibro...i take remeron to sleep...and it doesn't mess up my sex life ;)

any kind of anti inflammatory for fibro won't work...fibro is a non-inflammatory condition...a NSAID for feet pain is different...

they do think that fibro was around even 50 years ago...was just not being diagnosed...

people can be affected at different levels...for me i have it fairly severely...i have had to quit my job because of it...some people have it and can run marathons...

i am sorry to be going on and on about it...but it is so misunderstood...and i have done a lot of research...and i just want people to understand how it can severely limit this person...but not this person...a lot of it is attitude...and yes...all the 'poisons' in our environment and food may be part of the culprit...i think i could write a book...

anyway...take care
and gentle huggggs to all of us who are hurting
lisa

Re: Why not?

Sharon W on 5/03/02 at 14:59 (082329)

Lisa,

You seem too be good with words -- and you've already done a lot of the necessary research -- why NOT write a book?

-- Sharon

Re: nancy re:fibromyalgia

nancy s. on 5/04/02 at 21:14 (082452)

thank you again to everyone who responded constructively to my concerns and questions, including kay and kathy and carole, and of course lisa -- you have all been very helpful. and to each of you dealing with fibromyalgia, you have my heartfelt sympathy and i hope life gets better for you. i don't know yet that i have fibro, but i plan to see my doc this week and get started on figuring out what's going on here.

i feel very determined, whatever it is, not to let it drag me down as my foot problems once did. easier said than done -- but thanks to experience and to several people here, i think i know a bit more now about dealing with mental outlook when it comes to chronic pain.

i'll post when i learn something more.

thanks again!
nancy

Re: nancy re:fibromyalgia

Suzanne D on 5/04/02 at 21:27 (082454)

Dear Nancy,

I don't know anything about fibromyalgia, and that is why I didn't respond initially to your post. But I WOULD like to take this opportunity to send good wishes your way - and also to those who wrote who suffer from this! Armed with more information about the disease, I hope that your determination will help you combat whatever the problem might be.

I am interested and care about you!

Best wishes,
Suzanne :-)

Re: nancy re:fibromyalgia

nancy s. on 5/05/02 at 17:49 (082536)

suzanne, thank you very much for your good wishes and caring. these things seem to sum up your personality, from what i read of you on the board, and you are a special asset here.
thanks again,
nancy

Re: nancy re:fibromyalgia

JudyS on 5/06/02 at 14:59 (082668)

Hi Nancy - one of your remarks here caught my eye today.....the one about not letting possible FM drag you down as your foot problems once did. I've been having some relentless chest pain the last week or so and, as it happens, it's a basic case of muscle strain due to some heavy lifting a couple of weeks ago. However, while waiting for a diagnosis, my husband kept telling me to 'take it easy'. My consistent reply to him has been, no, I'm not an invalid and I won't let this park me in my easy chair the way my feet did. I wonder if a lesson we've learned is to not give in to pain quite so much - or at least not give in to it's nebulous nature so much. I don't know and I'm sure it's different for everyone. But I do know that my PF eventually gave way to a much stronger, 'take-charge' attitude on my part.

Re: Judy

wendyn on 5/06/02 at 20:30 (082725)

Judy - did your doctor call it something like costochondritis? Is it on your breastbone and rib cage?

Re: nancy re:fibromyalgia

Lisa G on 5/06/02 at 20:49 (082729)

what did you do with your 'take charge' attitude? i've had that attitude before...and always end up worse off...

lisa

Re: nancy re:fibromyalgia

nancy s. on 5/06/02 at 20:57 (082730)

hi judy, your 'take-charge' attitude sounds like it must feel good! i don't think i can say i have that, really, but i do feel more determined to focus on what i CAN do rather than on what i can't (which was a recipe for bad depression, as you know). that determination is one good thing that came out of the horrors of pf etc., and i'm grateful for it. i hope it carries through on any further difficult journeys; i think it must help in some way.
are you feeling better now? i hope so.
nancy

Re: Judy

john h on 5/06/02 at 21:57 (082738)

Judy: One time I woke up with a terrible chest pain and thought I was having some sort of heart problem. I then remembered that I had got my little aircraft (Beaver U6A) stuck in the mud on a dirt runway and had to get out and push it out of the mud in order to take off (my passengers had to help). I had strained the muscles (very big ones mind you) in my rib cage.

Re: Judy

JudyS on 5/07/02 at 10:10 (082801)

Yep, Wendy - you hit the nail on the head. Funny how it's eased up now that I know I'm not dying. :)
A word to the wise - the Hoover Upright Steamcleaner for carpet cleaning is very, very, heavy! You think you're going to be able to push it back and forth just like a vacuum cleaner but that's not the case. And I used it for two solid days around here.
And Wendy - there's even a message board for Costochronditis!

Re: nancy re:fibromyalgia

JudyS on 5/07/02 at 10:45 (082806)

That's a good question, Lisa. What did I do with my take-charge attitude? Probably very much as NancyS has described, I focused more on what I could do rather than on the never-ending frustration with PF and it's control over my sense of well-being. After I spent a year expecting it to go away on its own, and resting way too much, I decided to find out what I could about it and go from there. To be sure, I'd been very negligent in following doctor's orders which was a huge mistake. That decision brought me to this website. I started following the advice from Scott's book as well as that of folks who'd posted here regularly and those who'd posted about success with PF. I went to PT, I had two ESWT treatments with Dr. Z and have more recently been seeing a chiropractor regularly.
Deciding to be in charge is one of the two biggest hurdles there are, I think, with PF. The other was in realizing that it wasn't going to go away overnight if it has become chronic (most cases, if treated immediately and consistently, will go away sooner rather than later) One day you find yourself surprisingly on your feet for 30 minutes instead of 5, a couple of months later you're on your feet for an hour and suddenly realize that you have been! There are setbacks, you take them in stride and stay faithful to taking care of your feet.
Again, I think Nancy was accurate with her reference to focus. PF is there, it's not gonna disappear overnight unless you find a miracle orthotic. Even surgery takes a year to heal. So once you come to grips with that, then you focus on five-minute successes that can turn in to 5-hour successes over time.
I suspect, Lisa, that I sound a bit self-righteous here but your question has prompted me to update, with the board, my own progress because I'm nearly pain-free.
I've had PF for over 3 years, at it's most acute stage, I missed the window of opportunity for surgery because I was dead set against surgery.
My PF was as bad as it gets for a year or so with the crawling, depression, frustration, etc. Now, it has taken a long time, but once I decided to take charge, I have progressed consistently. I started with the ibuprofen, stretching, icing, taping, etc and stayed consistent with it. Then I went in to physical therapy with a guy who really knew what he was doing with deep-tissue massage designed to loosen some serious scarring. I did that for three months. Then I stayed with the icing, stretching, etc. Then I had ESWT. Then I stayed with the icing, stretching, etc. Then I had another ESWT. My heels got consistently better - albiet in very small increments! My latest efforts include weight-training, walking, and seeing a chiropractor for a sore Posterior tibial tendon which occured, I think, with the rigidity of casting, bracing and hard orthotics. I think these last three things have put me over the top in terms of over-all foot strength, and I think the ESWT put me over the top, eventually, with the heel pain. These days I can work around the house nearly pain-free for at least one day, sometimes three. I can go for a 30-minute walk and incorporate a 1/4 mile jog in to it. I use clog-style shoes almost exclusively (not for walking/jogging) I start every day with loosening and stretching in bed before I get up. I end every walk, or every day of activity, with icing. My next goal is to get back to the hours-long hikes that I really enjoy.
I think that the one advantage I had was that I didn't have a job that forced me to be on my feet all day. I also didn't have small children (althought the big ones.......).

Re: Judy

john h on 5/07/02 at 18:41 (082895)

I like my 8 lb Oreck.

Re: Another inspiring post, Judy

Julie on 5/08/02 at 02:00 (082950)

Thanks, my friend! :o) (Cheering you!)