Fibromyalgia

[Yellow Sprinkles]

Anybody else dealing with Fibromyalgia? Do you have any "tricks" or treatments that are working well for you? Do you know of a local support group(s)? What caused the onset... or do you even know? Have you experienced pregnancy since the onset?

[binky11]

I also have fibromyalgia, got diagnosed about 7 years ago but had it long before that. It is better now than it ever has been, but the past 3 days remind me I still have it! Anyhow I will private message you in a bit, when I'm fully awake unless there are others that are interested in the disease, then hollar at me to post in public!

[ferri]

post it here bLinky...there might be people out there that aren't members that could use the info too. ;)

[hevvonly]

Here's a link to the Canadian Arthritis Society about fibromyalgia:

http://www.arthritis.ca/types%20of%20ar ... romyalgia/

And another link to the (support) programs available here in Kelowna:

http://www.arthritis.ca/types%20of%20ar ... romyalgia/

Fibromyalgia is a really difficult disease to deal with. The widespread aches and pains can be so severe that you feel disinclined to exercise, which is a Catch-22 situation because according to the Arthritis Society, exercise helps but sufferers are in too much pain to do so. A vicious circle for sure. I was diagnosed with fibromyalgia about 8 years ago and since then have been diagnosed with lupus...A real "double whammy"...I find I have to deal with the pain on a day-to-day basis because you never know how you're going to feel from one day to the next, or even from one hour to the next. Support from my family and friends really helps me cope with my health issues.

Feel free to PM me if you would like to talk.

[binky11]

unless there are others that are interested in the disease, then hollar at me to post in public!

Leave it to ferri to do the hollaring!

Fair enough. Although I tend to get a bit long winded on this topic as it robbed me of a few years and I have researched it to death.

Twenty years ago fibromyalgia was virtually unheard of. Today is it the
the second most commonly diagnosed musculoskeletal disorder.

A few years ago most doctors did not even believe this disorder existed, and many still don't know. Rumour has it, it's because they don't have a clue how to treat it so it's an easy out for them. It is however getting much more difficult for doctors to shrug it off as it has been proved over & over again in recent years.

Most people don't get diagnosed until years after "knowing there is something wrong" When asked what the symptoms are you feel like a hypochondriac because your list is a mile long and your better off listing symptoms you "don't" have!!

Fibromyalgia has been knicknamed the invisible disease as we don't "look" sick. Trying to even get friends & family to understand is a challenge, if the doctors can't understand it, I guess we can't blame others for not getting it. It's symptoms certainly do mimick hypochondria & many have been accused by doctors of drug seeking.

Most common symtpoms include: muscle ache,recurrent flu like illness, sensitivity to hot & cold temperatures, severe & debilitating fatigue, depression, sleep apnea & other sleep disorders, irritable bowel syndrome, exessive sweating, headaches, sore throat, tender trigger points, heart palpitations, severe PMS, (ask me about this today lol), weight gain, cold hands & feet, dry eyes & mouth, painful swelling in hands, legs, feet & neck, GERDS, memory distubance (known as fibro fog), communication difficulties, severe mucsle weakness, intolerance to alcohol (unfortunalty me), intolerance to to sound, intolerance to bright lights & sun, insomnia, restless leg syndrome, MORNING STIFFNESS ect ect.

There are actually many, many more symtpoms!!!

There is no cure for fms, and treatment plans can really vary. What works for one person won't work for the next. I don't think there is anything I have not tried. There is acupunture, meds, heat therapy, holistic medicines, diet control, plenty & of rest & sleep & much more I can't even remeber.

Flare ups are common & can be caused by STRESS, sudden temp change, travel, illness, lack of sleep, over stimulation, menstrual period, holidays, even a very loud noise and can do it!

I think the most important factor in gaining control of it isfinding the right doctor, and boy is that easier said than done! I am very, very lucky in that area, without him (my 5 years in the usa) I suffered pretty bad. Since returning to him 3 1/2 years ago, I have been much better! I also think it is very important to learn all you can about the disease. Get stress under control a biggie too.

I have been on M-Eslon for a few years, was on 500mg a day but now down to 90mg. I take tylonal 3 and fiorinol for breakthrough and am darn lucky to get that from my dr. But the problem is we become tolerant to the amounts taken so quickly and are always in a position to increase the meds which I have been very careful not to let happen. I was taking ritalin to help me stay awake during the day but had heart palpitations from it so I went off that.

I believe I am in a flare up right now but don't have many thank God!!!
I also have sleep apnea (very common) and chronic fatigue. There more but I wont get into all of MY symtpoms lol

There is no support group going right now. There was a group of ladies that started one up but it fizzled as no one was up to leading it & organizing it, and it was mostly a social only anyway. They invited me as a guest speaker to one of their meetings and this is how I met them. They have begged me to get a group going again, and maybe, just maybe I will think about it after the new year. Although I havn't told them that hehe
I have a list of some names of people with fms in Kelowna (far from the real numbers) and most of them show an interest in a support group. I will see what the new year brings, I still don't really think I would be good at doing this.

What causes it? Nobody still knows but there is speculation that it could be from some trauma in earlier life. Such as a car accident, abuse ect.

Have I ranted enough? I have tons of material here and the best book on fms ever written and your welcome to borrow any/all of it!! Maybe we could get together sometime? Other than occasional babysitting, I am home alot ( am on disability) so feel free to contact me if you wish.

Hope I answered some fo your questions anyway. I could have went on & on ya know!! If you read this book I have you will no longer have any questions, covers it all. Nobody can understand how horrific this can be unless they have it, its impossible to explain as it's aches and pains are so extensive and widespread. Some are unfortunate & are almost bedridden, some are lucky enough to be able to still work outside the home. Oh one more thing lol I did dicover that there is a lot of truth to not giving into it and getting too sedate. It is very important to keep moving, I found this out firsthand. Even if it is just mild stretching movements, keep moving! Easier said than done some day eh? Ok, ok, Im done, I promise lol

Let me know where you are at with this disease please, would love to help you out if I can.

[Yellow Sprinkles]

binky... I would like to say a huge thanks for your kind reply and information! I have done some research since being diagnosed, but I'll take all the information I can get! And I must admit that I didn't know much, if anything, about fibromyalgia before this January when my doctor let me know I had it.

I was fortunate with my diagnosis in that it took only months from the onset of symptoms for my doctor to recognize that it was fibromyalgia. It was triggered by a car accident, and has really flipped my world upside down - I was in nursing school, and was also excited about my upcoming wedding. I had to take a leave from school and am still unable to return (still got married, though it has definitely changed things!). I have also not managed to be employed - I tried this summer and worked for a couple of good weeks until a flare up prevented me from continuing on. It has been very difficult for me to not be doing anything.

I have seen a couple of specialists since my diagnosis early this year, both have confirmed I have FMS - but neither has been able to offer much advice. I've tried various medications so far, but right now I am on a high dose gabapentin with tramacet for breakthrough pain and emtec for particularly difficult nights. These prescriptions are relatively new to me, as I am just recovering from the worst flare-up I've had thus far. I could not have imagined being in more pain.

I agree with your advice to keep moving, I've already seen what can happen if you don't - I'll admit that it can be extremely difficult. I have been exercising in the pool and walking outside, though winter's coming and the cold is making it not worth it. I was doing physiotherapy leading to my diagnosis - probably the worst thing I could have done for pain management (if I'd only known).

I would really like to talk more about this with you, and if you do start up a group in the new year then you can count me in for sure!! My family and friends have been supportive for the most part, and for that I am grateful, though they really don't understand what I am going through. I think the most difficult thing for me right now, aside from the pain, is the loss of control I feel. "Mind over matter" has always meant so much to me, and I'm having a real hard time letting go of that. Anymore insight you, or anyone, could share would be very appreciated!!

[binky11]

Good to hear from you yellow sprinkles!

You were very fortunate to get diagnosed that quickly!
I have been talking a lot with Hevvonly via email and her doctor won't even refer her to specialist, how frustrating for her! And to know what caused it is somewhat rare too, I really don't know what caused mine, have had a couple traumatic events in my life so who knows. I am sure I had it at least 10 years before getting diagnosed however. I knew something was very wrong but just thought I was being a baby or hypochondriac!

I am not familiar with gabapentin but I also take emtec (well tylonal #3, I like the caffiene to keep me awake lol). I have a small amount of fiorinol & T'3's that I take for breakthrough pain but when your in pain all the time, what's breakthrough eh? I try to save them for when I go out. So sorry to hear about your recent flare -up. Symptoms of fms mimick that of cold & flu that when I start getting symtpoms I have no idea if it is fms or the flu ect.

Loss of control, you bet. This book I have tells it like it is and was such an eye opener for me. I have promised it to Hevvonly but your welcome to borrow it when she is done. In fact, we are planning on meeting here at my place (Capri area) this coming Thursday or Friday and we would love it if you could join us! I have so much material and hand outs here, including resource links for things you probably are not even aware you are entitled too! We could have our own little support group with the 3 of us for now lol Please pm me for my number & address if your interested in coming. I wouldn''t wish this on my worst enemy and it's always so heartbreaking to me to hear of more & more people with fms.

5 years ago I was almost bedridden. Since I moved from Missouri back to Kelowna I started improving fast. I think the humidity has to be brutal for fms and the decrease in stress & getting back to my terrific doctor contributed too. My memory is still bad however, the fibro fog can be severe. Like I'll be in the middle of a sentence and won't be able to think of the word I was looking for..........that word can be chair, dog or teacher. Just will go blank. It can be sooooo embaressing.

Well I won't ramble on anymore but I sure hope you will consider meeting with us next week! Take care of yourself!

[hevvonly]

If anyone has a great doctor who understands fibromyalgia and is accepting new patients, can you please post it here? Thanks!

[clefairy47_]

and it sucks. Had it for about ten years after getting hurt at work. No compo, no disability pension etc., but i am fortunate to have a wonderful husband that tries to understand it all. We moved to Kelowna from the coast two years ago and found the difference in my flairs to be a little better up here.
I have done research too and it sounds like we have researched from the same places.
I have a very good dr here and when i first saw him he sent me for every bit of testing that he could think of and the first specialist i saw didnt believe in fms and said if i excersized more my symptoms would go away. Needless to say this put me back to the old days before i got rx'd with this disease, and of course I started doubting myself again. Its good to know that there are people up here that have it too, cause now I can believe I have it again!!!!
Thanks

[organiclean]

Edited

[binky11]

Thanks for the info Bonnie!! Will do some research on it!

[eyepop]

unless there are others that are interested in the disease, then hollar at me to post in public!

Leave it to ferri to do the hollaring!

Fair enough. Although I tend to get a bit long winded on this topic as it robbed me of a few years and I have researched it to death.

Twenty years ago fibromyalgia was virtually unheard of. Today is it the
the second most commonly diagnosed musculoskeletal disorder.

A few years ago most doctors did not even believe this disorder existed, and many still don't know. Rumour has it, it's because they don't have a clue how to treat it so it's an easy out for them. It is however getting much more difficult for doctors to shrug it off as it has been proved over & over again in recent years.

Most people don't get diagnosed until years after "knowing there is something wrong" When asked what the symptoms are you feel like a hypochondriac because your list is a mile long and your better off listing symptoms you "don't" have!!

Fibromyalgia has been knicknamed the invisible disease as we don't "look" sick. Trying to even get friends & family to understand is a challenge, if the doctors can't understand it, I guess we can't blame others for not getting it. It's symptoms certainly do mimick hypochondria & many have been accused by doctors of drug seeking.

Most common symtpoms include: muscle ache,recurrent flu like illness, sensitivity to hot & cold temperatures, severe & debilitating fatigue, depression, sleep apnea & other sleep disorders, irritable bowel syndrome, exessive sweating, headaches, sore throat, tender trigger points, heart palpitations, severe PMS, (ask me about this today lol), weight gain, cold hands & feet, dry eyes & mouth, painful swelling in hands, legs, feet & neck, GERDS, memory distubance (known as fibro fog), communication difficulties, severe mucsle weakness, intolerance to alcohol (unfortunalty me), intolerance to to sound, intolerance to bright lights & sun, insomnia, restless leg syndrome, MORNING STIFFNESS ect ect.

There are actually many, many more symtpoms!!!

There is no cure for fms, and treatment plans can really vary. What works for one person won't work for the next. I don't think there is anything I have not tried. There is acupunture, meds, heat therapy, holistic medicines, diet control, plenty & of rest & sleep & much more I can't even remeber.

Flare ups are common & can be caused by STRESS, sudden temp change, travel, illness, lack of sleep, over stimulation, menstrual period, holidays, even a very loud noise and can do it!

I think the most important factor in gaining control of it isfinding the right doctor, and boy is that easier said than done! I am very, very lucky in that area, without him (my 5 years in the usa) I suffered pretty bad. Since returning to him 3 1/2 years ago, I have been much better! I also think it is very important to learn all you can about the disease. Get stress under control a biggie too.

I have been on M-Eslon for a few years, was on 500mg a day but now down to 90mg. I take tylonal 3 and fiorinol for breakthrough and am darn lucky to get that from my dr. But the problem is we become tolerant to the amounts taken so quickly and are always in a position to increase the meds which I have been very careful not to let happen. I was taking ritalin to help me stay awake during the day but had heart palpitations from it so I went off that.

I believe I am in a flare up right now but don't have many thank God!!!
I also have sleep apnea (very common) and chronic fatigue. There more but I wont get into all of MY symtpoms lol

There is no support group going right now. There was a group of ladies that started one up but it fizzled as no one was up to leading it & organizing it, and it was mostly a social only anyway. They invited me as a guest speaker to one of their meetings and this is how I met them. They have begged me to get a group going again, and maybe, just maybe I will think about it after the new year. Although I havn't told them that hehe
I have a list of some names of people with fms in Kelowna (far from the real numbers) and most of them show an interest in a support group. I will see what the new year brings, I still don't really think I would be good at doing this.

What causes it? Nobody still knows but there is speculation that it could be from some trauma in earlier life. Such as a car accident, abuse ect.

Have I ranted enough? I have tons of material here and the best book on fms ever written and your welcome to borrow any/all of it!! Maybe we could get together sometime? Other than occasional babysitting, I am home alot ( am on disability) so feel free to contact me if you wish.

Hope I answered some fo your questions anyway. I could have went on & on ya know!! If you read this book I have you will no longer have any questions, covers it all. Nobody can understand how horrific this can be unless they have it, its impossible to explain as it's aches and pains are so extensive and widespread. Some are unfortunate & are almost bedridden, some are lucky enough to be able to still work outside the home. Oh one more thing lol I did dicover that there is a lot of truth to not giving into it and getting too sedate. It is very important to keep moving, I found this out firsthand. Even if it is just mild stretching movements, keep moving! Easier said than done some day eh? Ok, ok, Im done, I promise lol

Let me know where you are at with this disease please, would love to help you out if I can.

MORNING STIFFNESS !!

i have fibromyalgia?

[Piecemaker]

EYEPOP----->

[binky11]

Other peoples chronic illness's should not be at the brunt of jokes.

[organiclean]

Hi Sprinkles,

Have you had any immunizations? The reason I ask is because they use a preservative in many immunizations called Thimerisol. It is basically mercury. Yes, they know what it is and still use it today. Google Thimerisol and you will be shocked!!!