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 AUTHOR
 Rythmn
Joined: 1/21/2006
Msg: 26
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FibromyalgiaPage 2 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
i am looking at about two years worth of posts here re "fibromyalgia". so, i would like to add a little bit of info as well. take what you want and leave the rest:
1) fibromyalgia is a description of many symptoms that group together a la "syndrome". nonetheless it needs to be addressed as just that. if you had a stomach ache wouldn't you want to know if it was gas or cancer? well the same goes for a syndrome. so, what causes it?

2) there is a lot of overlap in diagnosis with fibro, chronic fatigue, gulf war syndrome, hashimoto thyroiditis and often with ms, als, lupis and other autoimmune disorders. often a person will get more than one of these diagnoses. 3) many people are given steroids which can be absolutely devastating IF, in fact, your fibro is caused by lyme disease or one of the other tick co-infections such as babesia , ehrlichioses, et al. only recently has a form of micoplasma which is a contributing factor of gulf war syndrome been also linked to the tick as a carrier.

3) most doctors are totally ignorant about lyme disease, most tests are not sensitive to detecting it and many hmo tests are cheap and will show negative results as this is a highly sophisticated little spirochete that scientists have documented to avoid detection in many ways. after a prolonged time it leaves the blood stream, has many forms that hide and often enters heart and brain tissue undetected. sometimes spinal taps are needed, but less painful approaches require spec scans and then again, only "lyme literate" doctors and practitioners understand the selection, administration and interpetation of these findings. for example the babesia test was until only a couple of years ago limited to the east coast strain. only recently was a west coast strain discovered and those testing negative until that point, suddenly tested postive.

4)further most chronic, long term lyme sufferers require very long term doses of antibiotics which the average doc knows nothing about or is afraid to treat for fear of retaliation from his group practice peers and insurors who need to keep the costs down. advocates currently are passing legislation in the US, state by state, to curb this attack on lyme literate physicians.

5) children are severely affected by lymes. in my own neighborhood a young teen tri-atheloner was diagnosed with lupis and confined to a wheel chair. fortunately her coach knew me and she went to a lymes literate doctor. she now walks, but still copes with cognitive issues and will be on antibiotics a long while.

6) many lymes patients develop allergies and chemical insensitivies and share a number of strange symptoms, some of which come from the lymes, some from the coinfections and some from the required meds themselves. also for some, the immune system breaks down and other viruses , bacteria, fungal infections can invade.

7)for some, there are psychiatric like symptoms ranging from secondary depression and anxiety about the illness to actual psychotic behavior. research by brian fallon at nyc columbia university is addressing this as well as long term antibiotic use and is funded by the nih.

8) the good new is that there is hope for this, but you need to get educated and be willing to make your own decisions. sometimes you need to pay for the tests and treatment or get involved with the advocacy groups so you can get help. the longer you wait, the worse it gets. my good friend and her little girl after six years are symptom free but still take antibiotics. my other friend just had a baby which many said was impossible. she had the umbilical cord tested and the infant is lymes free.

anyone wanting more info after searching the web for the more appropriate references, can fell free to contact me and i can forward to more appropriate references. i wasn't prepared enough to bring them to this particular response as i didn't expect to see the posts, but with a little preparation, i hope to be of any assistance if needed.

i might add that in my "past life" i researched and addressed a lot of health issues and i can only see that natural remedies only go so far. if you had cancer or AID or syphilis would you only use natural remedies? no. but that's not to say they don't assist in rebuilding immunity.

good luck to all of you and i hope you find this post.

namaste.
 marita_b
Joined: 6/15/2005
Msg: 27
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History
Fibromyalgia
Posted: 4/14/2006 5:11:37 AM
One thing that reassured me of the fact that I have a good doctor is what she told me at my last meeting with her,...that being,...for a long time we were looking for something to find,..

Now we are looking for something not to find,...by that she said having made this diagnosis,..we have to have you tested to make shure that it's nothing else but this,...

So the list you mentioned above has to be ruled out and since many of those on the list already are,...ruled out I mean,...we are working throught the remaining list of possibillities,..

Although many of us live in a part of the world where some of those things are as rare as hen's teeth,...ie lime disease,...in as much as the carrier of this is a tick ,...

the truth is we are a global comunity,...and we do tend to take our pets with us far more than ever before,(they no longer need to be isolated for 6 months,...a simple set of needles and they are good to go)..I myself spent 6 months living with my dog in mexico only last year,...god knows what I picked off of him nightly and what might have escaped my notice,...

and I too was bitten by things that made me very ill,...but I went to mexico with most of the problems I have today,....this however doesn't mean I may not inadvertently have brought something unexpected back for someone else,...

checking,...just in case,..is never a bad thing,...and checking a whole bunsh of things,...even better,..because you never know,....until it's been confirmed,...either in the positive,..or sometimes by exclusion,....
 datingsucks43
Joined: 2/28/2006
Msg: 28
Fibromyalgia
Posted: 4/14/2006 12:43:38 PM
I just got diagnosed with fibro. What can you do to help the aches and pains and get a good nites sleep?

~beach
 marita_b
Joined: 6/15/2005
Msg: 29
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History
Fibromyalgia
Posted: 4/14/2006 1:06:05 PM
well that depends on what your particular diagnosis and syptoms are but if you have been diagnosed I suspect the doctor that made the diagnosis would be the one to go to for meds and treastment options but if you don't get satisfaction there check out some of the sites I and others quoted in earlier posts,..lots of good help there,...

mine has started my on anti depressants which also help in getting the much needed sleep I,...and there are many different ones for them to try,...

problem is after the diagnosis comes a long time of trial and error with what works for every individual,...and what doesn't,....and in that way the cure is as variable and different as the disorder and it's signs and symptoms,....sorry but that's it I'm afraid,...
 marita_b
Joined: 6/15/2005
Msg: 30
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History
Fibromyalgia
Posted: 4/25/2006 11:28:08 PM
Turns out,...serenitycw,..that lyme diseade is as difficult to diagnose as fibro is and actually you were very right fibro can be caused by lyme disease,....

I did look into it and pertaining to me it's actually reasonable for my doctor to rule me in/out in this case because I spent 6 months living in Puerto Vallarta,....with 2 dogs,...whom I nightly had to de-tick,...and every time I had a shower I had to check myself for moled and freckles that moved,...those suckers can be sooooo tiny,...anyhoo turns out Puerto Vallarta is a known area for not only a tick problem but for lyme disease,....

and as luck would have it,..my doctor is in a multy physician office and one of her collegues, had the oportunity to have a patient with this disease,...it took them over 2 years to diagnose,....and after many useless tests found the one that told them what the problem was,....

Even a spinal tap which is often used to diagnose according to the informational site on lyme disease,....is accurale only about 20% of the time,.....so it helps for them to know what tests NOT to send you on too,....

so thanks for the info,..serenitycw,..and I'll keep you posted one way or the other,....
 marita_b
Joined: 6/15/2005
Msg: 31
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History
Fibromyalgia
Posted: 4/26/2006 2:52:10 PM
first,..who is the "HER" you are referring to???

and what exactly is this (meridia) drug for and what does it do?

you have to be carefull when recomending drugs to anyone,....because every fibro patient suffers differently and has different signs and symptoms,...and there is no one drug panasea as I understand it,...to cure all,.....

this is not to say any one drug or treatment should be excluded off hand but neither should it or anyother drug be used without the direction of your physicians especially since I as well as others (I assume) are taking a variety of drugs already and no one really knows what the interaction of what meds can create,...

nothing in "my opinion only",...should be done on our own without discussing it with our primarry care giver first,....it's only prudent,....and safer,....
 marita_b
Joined: 6/15/2005
Msg: 32
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History
Fibromyalgia
Posted: 4/27/2006 8:11:12 AM
there are of course the standard pain meds,...that go from regular over the counter tylenols to T-3's and even T-4's and then there is demerol and well a whole bunsh of them,...but

My doctor has me on the waiting list for the Pain clinic and since you are Cape Breton,..you too can be sent to the VG hospital here in halifax for it,..there is a long waiting list but better than nothing and,...

My doctor has made arangements for me to get my own tens mashine,....
if you have ever been to phisio,...which I suspect most of us have been then you know how much help tens mashines can be in cutting off the pain message to the brain,....and no adverse side effects,....

I don't know if your doctor has you on anti depressants,..which I see on most sights is the first thing they put you on,....as mine did me and it does help me sleep,...still not the whole night through,..but as many as 3-4 hrs at a time,...which is pretty darn good for me,...

also I went out and got myself one of those pads you can get from Can tire or several different stores,....that are the torso length,..heating/message pads ,...they can help too,...

you can also get information on bio feedback and self hypnosis,...(either through your doctor,...or a physio clinic or the library,...or just google it)...
http://www.medicomm.net/Consumer%20Site/am/bio.htm
http://www.futurehealth.org/BFfaq.htm
http://www.bcx.net/hypnosis/induct.htm
http://www.hypnosisdownloads.com/

you might even try accupuncture or accupressure,...

all of these may help you help yourself,......at least they can't hurt you anymore than you already do,...
this particular page will get you to a hypnotherapy page exclusively for hip pain
http://www.hypnosisdownloads.com/downloads/pain-relief/hip.html

I just love the computer,...with just a mouseclick anything you need is right there,...including support from the many nice people here,....to which I say thanks,....
 marita_b
Joined: 6/15/2005
Msg: 33
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History
Fibromyalgia
Posted: 4/27/2006 8:33:13 AM
http://wendi.com/html/free_scripts-mp3s.html?type=GoogleAdWordsContent&gclid=CLrrvOGzzYQCFR6ISAodMCXkLw

this site is a site for self hypnosis,..one that helps you without having to buy any tapes,..because if you follow the script on this page you should be able to do it,....

maybe not the first time or even the second but eventually,...

good luck,...
 ~softEDGE~
Joined: 6/12/2005
Msg: 34
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History
Fibromyalgia
Posted: 6/7/2006 11:17:24 AM
two visits to my regular doc and a specialist in the past two days, kenalog shots both times.
pain sucks.
 ~softEDGE~
Joined: 6/12/2005
Msg: 35
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History
Fibromyalgia
Posted: 6/12/2006 7:27:26 PM
such a bittersweet and heartfelt post above mine, here. thanks for so thoroughly understanding so much because of the love you shared with your mother!
(i lost mine last year on st patty's day, and still a bit raw over having lost her though she had lived a full and long life, i still miss her every day.)
the steroid shots and just 2 doses of flexeril pulled me out of the awful burning flare i had for the past few weeks, so i am grateful for that. the damn flares sure do kick my ass when they arrive, each time i am still suprised at their velocity and strength, even after being diagnosed fifteen years ago. the above poster IS right about everyone maintaining the most positive outlook possible, yes, sometimes kinda tough; especially in the midst of a flare. the diagnosis is such a strange one, acting so insiduosly in so many different ways, but it ISN'T a death sentence.
i'll never forget a doctor from the past who said to me, "the bad news is you have a painful condition named fibromyalgia and sometimes it may feel like it's killing you; defeating you; but the good news is it ISN'T." please remember this.
 marita_b
Joined: 6/15/2005
Msg: 36
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History
Fibromyalgia
Posted: 6/13/2006 3:08:00 AM
No one but yourselves truly knows what you are going through....(shaunamarie78)

==============================================================

Your wrong about 2 things Shauna,...

-the first is,...we are NOT the only ones who know what we are going through,...
our families know and suffer along with us,... no matter how stoic we would like to think we are,...
and thanks for reminding me of that,....

- all those "other things" you say your MOM suffered with as well,..were actually part of the same thing,...fibro,..in fact from all I have read,...The first symptom most doctors address is depression,...(me included)

IT IS THEE MOST COMMON SYMPTOM,..and the one that needs to be dealt with first because if you have been suffering for years (as many of us have,..prior to diagnosis)
You can't see the light at the end of the tunnel of hope,...if you are living in a fog of pain, doubt and hopelessness so thick, you can't even see the tunnel,...

I am just now coming out of the fog,....and I can truly tell you every single day had been a struggle just to get through,...and I did so only by saying well I made it today,..if it gets worse I can always take steps to do something tomorrow,....

I am so sad to hear that your MOM,..never had the chance to see that in retrospect,....
hindsight truly is 20/20,....and sadly so are diagnosis sometimes,....
but if you read my earlier post,...you would have read that my doctor didn't diagnose me either,..I did,...and I gave her all the informational web sites,..sites to help the patient and to help the doctors confirm the diagnosis,.....

Doctors are only humans too,....they can't know everything,...and in the usual 10 minutes alloted per visit,..they don't have time to deal with anything but the immediate complaint, that brought you in that day,....In a perfect world they would keep on top of all your complaints over the years,...but,...they have too many patients to make that reality,...each of us however,...is the only patient we have,...so for us it's more manageble,...

That's not to suggest or promote self diagnosis,...but when I tallied a list of complaints over the years and asked her,..is there a disorder that would encompass all of this list????
Then she saw the light too,...and we set out to elliminate all other possibilities,...we are almost at the end of that process too,...and with each ellimination comes something that I never knew I needed,.....VALIDATION,....because your right,..we aren't nuts,...and this is NOT in our collective heads,....and medicine may not be able to cure,...but it can make things easier to live with,....

It's only been since my diagnosis,..that I have learned of a surprising number of friends who have been dealing with this,...or have had someone with fibro,..in their life,...thank God for the easy access to thje sheer voluminous information available to us who have computer's at our disposal,....

so in conclusion,...
THANK YOU,...shaunamarie78,....AND TO MY SON,..AND ALL OF OUR FRIENDS AND FAMILY WHO ARE THERE FOR US,....

ps,..I HOPE YOU DON'T LAY GUILT AT YOUR FEET FOR NOT HAVING "known" EARLIER,....

The loss of your father may have been hard on your MOM,...but you have now lost them both and my heart goes out to you

if you want to read more check this site out,...
http://www.arthritis.ca/types%20of%20arthritis/fibromyalgia/default.asp?s=1

http://www.sover.net/~devstar/
 marita_b
Joined: 6/15/2005
Msg: 37
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History
Fibromyalgia
Posted: 6/13/2006 11:40:03 PM
I'm very sorry if you got the impression that your comment was unwelcomed or pertinent,...shaunamarie78

especially since I believe the very opposite to be true,...
you have a right to be angry,..(we all are I think) and to voice it,...
especially in this thread,..

***( I got to the point where I didn't believe her)**
this comment especially hits home because I have felt this from others
some have just said it to me,..but even worse,...

there have been times when I believed this must be true,...
I wonder but doubt that I am alone,..

Do you feel guilty for thinking this???? because if you do,..don't
( tough call,.I know ) but honestly give yourself a break because the reaction is normal,...

I feel your pain,...and wish I could help,...my thoughts are with you
======================================================================
My muscle and joint pain and my fog were reduced by cutting out MSG and all phosphates. The phosphates build-up in my cells and also attract calcium which it loves to bond with. This causes MY pains and the unintentional popping of my joints. I can reach up to shampoo my hair and my shoulders and elbows all go pop.

I am sorry to burden this thread with so much of my self. I have plenty to say but most of you know most of these symptoms already.

Chuck

Boy oh boy can I relate to this too,....I am sorry to burden this thread with so much of my self. ,...Chuck

It seems to be a common personality trait that comes with this GD disorder,...
Our need to always appologize,...we seem to all do it,...comes from years of being tested and finding nothing,..( I think) and in the medical world,...

IF WE CAN'T FIND IT,..YOU DON'T HAVE IT,...well if we don't share,...here,..then where can we unburden all this emotional baggage that also comes with this disorder?

I sure hope I am not alone in saying this but isn't this the absolute right place to vent all of this,..in a place where other actuallDO know what we have endured for so very long?
 marita_b
Joined: 6/15/2005
Msg: 38
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History
Fibromyalgia
Posted: 6/17/2006 8:55:44 PM
I just wanted to tell you and others,...(and you all probably already know thing yourselves)

If you read these forums and agree, disagree or have knowledge of something peryaining to this thread,...please don't hesitate and share herein for all to read,...

I say this only because time and time again I get e-mails from people who tell me their story,...
or their experiences,...their symptons,...and what has been helpfull in dealing with same,..
I appreciate all those letters,..and am always glad to help,...and be helped in return,...

But,...you would be surprised just how many folks read what has been shared herein but never add a comment....

PS,...icequeen73,...thank you for that kind comment,...
 marita_b
Joined: 6/15/2005
Msg: 39
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History
Fibromyalgia
Posted: 6/19/2006 9:08:15 PM
As it turns out there is no support group specific to fibro in my comunity,....
kind of sad when you consider that this is the capital city of the province,....

but I did find a web page as a support web site specific amd exclusive to fibro,...
a forum type,..but one that has information as well as a place to share

http://www.efibro.com/forums/?utm_source=adwords&utm_medium=ppc&utm_sponsored=fibromyalgia_group_support&utm_campaign=fibromyalgia_support

Fibromyalgia Forums,.....these are some of the topics discussed

Fibromyalgia Symptoms
Discussion regarding the waxing and waning symptoms of Fibromyalgia

Fibromyalgia Treatments
Discussion revolving around different treatment and outcomes for Fibromyalgia

Fibromyalgia Doctors
Experiences and outcomes with MDs/DOs treating Fibromyalgia

Others who help people with Fibromyalgia
Experiences and outcomes with other alternative health care professionals treating Fibromyalgia

Non Fibromyalgia-related
Please use this message board for all personal matters not related to Fibromyalgia discussion

Products and Services

General Discussion
Discussion regarding products and services used in the care of Fibromyalgia

Archives
Archived eFibro.com Forums
Archived forums from the old efibro.com site

There is also a resource page that can link you to just about anything you would ever want to know,....sometimes being cooped up at home gives you (and by you I mean me) plenty of time to surf the net,....

I just love living in the computer age because everything is right there at the tip of your fingers,...and doing research makes me feel I am not passively letting this happen to me,....
Something I haven't felt in very many years,....and to my surprise,...when I bring in informations or suggestions to my doctor,..she doesn't treat me as if I were a hypocondriac out of my element,..instead she treats me as a partner in this journey for relief,....not all doctors react like that,....

Thank you all for your kind words,....and appreciation,....but who better to help us than those of us walking down the same path,....and it is easier than walking it alone
I hope this forum doesn't get lost in obscurety,.....it is up to all of us to keep it alive,....for those that need it tomorrow

there is another good site,...
The Fibromyalgia & Fatigue Centers, Inc. (FFC)

http://www.fibroandfatigue.com/
 marita_b
Joined: 6/15/2005
Msg: 40
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History
Fibromyalgia
Posted: 6/27/2006 3:03:40 PM
Hey Chuck,..it's been a while,..how are you keeping,....

The problem with this disorder is the very nature of it affecting virtually any and all parts of the body to varrying degrees,...

I too have been told that perhaps my problem is MS,...

The only thing all the proffesionals seem to agree on is that first you need to go on anti-depressants,...from there,...it's all hit and miss,...
 marita_b
Joined: 6/15/2005
Msg: 41
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History
Fibromyalgia
Posted: 10/19/2006 5:40:23 AM
venting is good for the soul,....icecapqueen,....

and I dare say all of us can identify with what you have said because we too have gone through this,....the best advice I can give you can be found on this web site,....

this Doctor is what many agree with,...the leading authority,....her information isn't restricted to patients but is there to help educate many doctors to help their patients,....

http://www.sover.net/~devstar/index.htm

and my personal advice is there are many medications for a multitude os signs and symptoms,....if some don't help try something else,...and something else until you find what works best for you and your particular troubles,....

this is where I am still at,...and I go in everymonth and we either up/down the dose or go onto something else,.....the best way you can help your doctor in determening what meds to try or keep is to write down in a journal,...(I hate journals but I do it) what you took when you took it what effect it had for how long and what adverse effect,...it also helps to keep track of how much relief you have gotten by tracking it on a 1-10 kind of grading system,....

The better you keep track the better your doctor is able to know what to do,...FOR YOU!!

so you can not be a passive patient if you want to get any better,....and you have to insist sometimes for what you deserve,....

I am also working with non medical aids like an at home tens mashine,...the wearing of braces etc,....which isn't that expensive anymore,....hynnotherapy,...and accupuncture,...

currently I am also in an in hospital (which is kept way hotter than a normal) pool,...hydrotherapy,...something that I wish I could do forever,....

and one more thing I recently discovered is that on those rare days that you feel "almost normal" give yourself permission to feel that way,...I discovered on those days I was hiding out at home because I felt guilty for feeling better,....and that's just dumb,....
 andiedandie
Joined: 9/24/2005
Msg: 42
Fibromyalgia
Posted: 3/17/2007 1:27:29 PM
Hey all... I have FM & ME... and have been a volunteer for the MEFM Society of BC... I see the leading doctor in all of Canada, Dr. Carruthers, who has been instrumental in writting the new consensus documents for diagnoisng FM & ME/CFS. They are available for viewing on the national site for Canada @ www.mefmaction.net Please go to this site as there is a lot of helpful information for support etc.

Dr. Carruthers is also probably one of the leading doctors in all of North America and travels the world extensively in educating Drs & the medical industry about FM & ME/CFS. Here is the link to review the consensus documents for FM & ME/CFS... please note these documents/books can also be purchsed and there is now a summarized version availabe which was written for Doctors use as well as an informational guide for people suffering from these conditions.
Link: http://mefmaction.net/Patients/ConsensusDocuments/ConsensusDocuments/tabid/118/Default.aspx


For Frequently Asked Questions about FM go to: http://www.mefmaction.net/Patients/FMSQA/tabid/108/Default.aspx
For Frequently Asked Questions about ME/CFS go to: http://www.mefmaction.net/Patients/MECFSQA/tabid/107/Default.aspx

My father also has FM... at this time "they" the doctors believe that this is not necessarily inherited however we can have a predispostion for it...given the right situations/trauma/viral infections etc to our central nervous system & spinal chord. As you all know this is a very difficult thing to diagnose in part because so many of our physicians do not believe these conditions exhist or simply are not up to date with the latest research and info.

Please feel free to pm me if you require further information etc...particularily if you have just been diagnosed and are overwhelmed initially as so many of us have been!

May al l of you learn how to live with balance and harmony

Andie Dandie
 Semiramis
Joined: 11/6/2007
Msg: 43
Fibromyalgia
Posted: 11/11/2007 11:34:15 AM
I found Omega 3, taken at 5000 mg a day helps. The ingredients must however contain 900 mg of EPA and 600 mg of ADH, to make it effective.
 NancyvH
Joined: 10/25/2007
Msg: 44
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History
Fibromyalgia
Posted: 11/16/2007 4:48:35 PM
I was diagnosed about 5 years ago with having fibromyalgia. At the time I was a full time self employed gardener. My thoughts were... get fitter, make the muscles stronger. As my condition was diagnosed quite early I was able to, after 2 years of more aerobic excersise, be pain free.
The disaster struck and I manged to get ME! Due to the fact I just couldn't get up, my strength lessened and the fibromyalgia came back.
Due to the lack of understanding from my gp, it took 2 years to get the help I need. I am now officially disabled. Can't take meds as they make me worse. I do find a small joint can help ease the symptoms enough for me to control them and avoidance of stress as much as possible is also beneficial.
I recently started tai chi which after only 5 classes has made some difference. I find as long as I can get to a class I always come out standing up straight, not needing a stick. I even manage to go to the supermarket. I have spoken to quite a few other people who have FMS and are also doing tai chi. They say it has given them a lot of their life back. So I'm going for it. I suggest any of you find yourself a class where you live and join in. I'm hoping it will also help with my ME and osteo arthritis. You never know till you try.
Good luck to you all. and remember, do your best to keep a positive attitude and you will beat this thing. There is a cure out there, you just need to keep looking and not give up.
Lots of love and hugs xx
 MustangGal0820
Joined: 2/6/2008
Msg: 45
Fibromyalgia
Posted: 3/18/2008 10:02:51 AM
I have Myofacia pain -- which is similiar. Mine is an inflammation of the tissue between the skin and the muscle. Mine is all over. Fibromyalgia is more localized.
Instead of just going to the dr. and getting drugs to mask the pain, try a Maximized Living Chiropractor. He, or she, will actually HELP to CURE the issues... Read "One minute Wellness" by Dr. Ben Lerner.
Try, also, an anti-inflammatory diet. The pain is caused by inflammation. We can help this by eatting more alkaline foods. (Avacados, spinach, sweet potatoes, etc.)
I started a forum today about anti-inflammatory diets. SUGAR is POISON and very inflammatory -- so STOP eatting sugar immediately.

My chiropractor has a degree in nutrition. Maximized Living chiropractors use a holistic approach.
 Rythmn
Joined: 1/21/2006
Msg: 46
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History
Fibromyalgia
Posted: 3/18/2008 12:15:22 PM
fibro is a recently "accepted" syndrome which is a pattern of symptoms. if you had one symptom such as a stomach ache, i assume you would go further and want to know if it's caused by gas or cancer?!* then if it's gas, what's causing the gas???

with fibro and chronic fatigue (depending on which dr. you go to first), the syndromes are often left to rest and then all sorts of traditional to holistic remedies are applied. the results depend largely upon your immune system.

orignally many people who went complaining to their doctors, were told they were nuts or hypochondriacs and denied treatment. so when rheumatology (fibro) and immunology (chronic fatigue) took on the burden of giving it all a name--then they could give a diagnosis to the insurance company and get paid and prescribe treatments w/o getting sued for malpractice. but again, why do we have these syndromes?

for me, it was a long journey and along the way i was also told i had "gulf war syndrome". where the he-ll that came from was slowly revealed. also a lot of autoimmune stuff started happening like hashimoto thyroiditis--typically not part of routine thyroid tests.

well, after a referral from someone online in australia (!) i got sent to a dr. to treat the gulf war "mycoplasma" and she in turn was what is called a "lymes literate" physician. i had been tested for lymes with the wrong test and by hmo stat labs. if you were bitten more than 30 days ago, try years for me and probably ongoing bites, results don't show. also there is a lot of contaminiation that occurs in these tests and only a few labs do them well. so, i finally got the right tests and they SCREAMED out lymes disease. also, i had been reporting strange rashes, but they were not bulls eye and half the people with documented lymes will say the same. also, i had a lymes spec scan which revealed the thick blood mentioned above. also i have since found high levels of mercury that was not in the common blood test. mercury interferes with the antibiotic treatment of lymes.

there is a physician group called ILADS that is international and these docs are all connected on the internet and share lymes related information. there are a number of additonal tick borne illnesses and different regional strains on these crop up. for example i tested no on babesia, until a test for the west coast strain was developed. then i tested positive. also they have since found out that the tick carries gulf war syndrome.

so, it's a long and expensive journey. if you are able to treat with the herbal remedies, you are not "as" immune compromised. i do both and fortunately my local dr. is both an md and a homeopath and recognizes that some lyme patients need aggressive and long term antibiotic treatment---along with the endless array of herbs and his treatment for mercury via chelation. my lymes dr. only checked my blood for mercury. the homeopath drew it out of my organs with the same chelating agents. i'm one of the highest he's seen. so, it all gets very complicated and insurance companies do not want to pay for it as they have claimed until recently experimental.

lymes will hit your own weak areas--for some the brain and some the heart and some the muscles. the spirochetes hide in your own cells, and thus many of the auto immune responses.

just recently they "finally" published the lymes controvery in an infectious disease journal. there is a lot of money at stake here, a lot of egos involved in the diagnosis and which specialty gets to be the expert --not to mention insurance companies sure as heck don't want to pay for IV rocephin for any length of time.

ticks are also not just on deer, around here they are rampant with rats and love to live in oak trees.

so take what you want and leave the rest. i was fortunate to be a health care delivery strategist, so i was able to research and form the opinion which saved my life and kept me from the wheelchair--which i used in the beginning, but no longer.
 Lv2bcre8iv
Joined: 10/1/2007
Msg: 47
Fibromyalgia
Posted: 6/3/2008 2:43:20 PM
I categorize fibromyalgia in the same category as SIDS (Sudden Infant Death Syndrome). It is a diagnosis of, "I have absolutely no idea what is wrong with you so I will call it fibromyalgia and the drug companies that subsidize my practice will be overjoyed at all the new drugs I will prescribe for you."

SIDS will never be cured and neither will fibromyalgia. The reason is that if they know why the infant or toddler died it is no longer SIDS. Fibromyalgia works the same way, if they know what is causing the pain it is no longer fibromyalgia. To me it's an incompetent diagnosis from "doctors" who are too lazy to find out the underlying cause of the patients particular problem. It is far easier and much more lucritive for the doctor to call it fibromyalgia. After all, dicovering the real reason for your ailment costs time and money, both of which most the doctors of our era are too eager to hold on to rather than determine the cause of your illness.
 bearwoman1959
Joined: 8/25/2006
Msg: 48
Fibromyalgia
Posted: 12/18/2008 11:59:10 AM
I've eaten little meat and little processed foods and drink water all the friggin' day and I still hurt like hell, especially with the colder weather being here. Fibro can effect people in different ways and on different levels. Some people have few symptoms while others are practically an invalid from it. They say to try stretching exercises and then I hurt from them, even if I do it every day. Just going to the store and walking around and then carrying the bags tires me out and makes me hurt for a couple of days. I do take Lyrica now and it helps some, but I would love to try acupuncture. It sucks that I feel the way I do now, as I used to hike in the woods for several miles and do yoga and felt fine afterwards.
 Northern^Lady
Joined: 4/19/2007
Msg: 49
view profile
History
Fibromyalgia
Posted: 1/7/2009 6:49:04 PM
You pretty much covered it. I also have had this "condition" for several years. I find reducing or eliminating caffine from your diet helps greatly. A stress free enviroment and knowing your limits are also good things to know. There is a publication that I found to be quite helpful. It is the fibromyalgia network. It can be found on the internet. It has some very helpful views from patients as well as physicians.
Best of Luck,

Northern^Lady
 kpooks
Joined: 12/23/2008
Msg: 50
view profile
History
Fibromyalgia
Posted: 1/13/2009 8:23:57 PM
My mother, and she had an orthobionomic massage therapist work on her. She was pain-free after a few treatments.
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