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Old 08-21-2006, 10:49 PM   #1
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is fibromyalgia a real disease???

I'm going to open a can of worms here ,but my chiropracter doesn't believe that fibromyalgia is a real disease ,but just a label that Dr.s give you when they can't figure out what the real problem is. In my case ..I saw an M.D who did tests for Rheumatoid Arthrirtis. when they came back neg twice ,(but i still had lots of muscle and joint pain ),he just dismissed me with no answers. I then went to a chiropracter who said i had lots of adhesions and scar tissue in my muscles. She is using a technique on me called Active Release Technigue. . Basically this involves my chiropracter putting me through motions that takes the muscle from a shortened position to a lengthened one while she provides tension along the muscle to break up the adhesions. It really is working. Most of my pain is in my hips ,along my outer thighs to my knees,along my forearms,and shouders. The aching was so bad sometimes I could barely walk without hip pain . She can actually pinpoint my pain just by how large the adhesion is in that area,and it always surprises me when she goes right to my trigger point without me saying a thing.
you can check out Active Release Technique on the internet and also see if anyone practices it in your area. I highly recommend it.

 
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Old 08-22-2006, 04:38 AM   #2
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Re: is fibromyalgia a real disease???

yes i believe it is. i am still in the ruling out other diseases stage. have ruled out MS, RA, Lupus. have an enlarged thyroid with nodules but blood work is normal. have all 18 trigger points for fibro. alot of pain everywhere. extreme fatigue at times i can't get out of bed and other days i have to take a nap by 3:00. i have many injured joints BUT my rheumatologist seems to know exactly where to do an injection to give me refiel from the pain. have been seeing a PM dr. and am in physical therapy and that makes me worse. the only treatment i have gotten that helps is from my rheumi so i ahve to believe fibro is real and can be treated.

 
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Old 08-22-2006, 06:37 AM   #3
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Re: is fibromyalgia a real disease???

hi kathryn,
atascadero, oh my. i was born there about a hundred years ago. when it was tiny and quiet.
the debate on fibro being real or not real will go on and on. every doctor just like every human is entitled to their own thinking. if this works for you then keep it up. we all find our own balance and treatment. what's in a name? call it fibro or whatever you please. the pain is real and must be dealt with.
you keep doing what works for you and find your way to the healthiest you.
it is a pleasure to meet you.
peace,
bluelakelady
ps. giving a name to illness allows a person to anchor themselves and face a specific direction in their healing.

 
Old 08-22-2006, 09:46 AM   #4
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Re: is fibromyalgia a real disease???

Kathryn I am sure the 'is fibro a real disease' debate will go on forever. What I think is for sure is the pain is real and fibro is not a psychological illness. My husband has a disease called dermatomyositis, which is an inflammation of his muscles and skin and has caused scar tissue to form in his muscles and made them painful and weak but he does not have joint pain. He does however have lots of fatigue. His disease is one that can be seen through bloodtests and microscopes and has a cause and a cure. Fibromyalgia has not reached this stage yet, so the controversy will continue.

Like blue has stated, if your treatment is working for you stick with it. Always do what works best for you.

Glojer

 
Old 08-22-2006, 12:11 PM   #5
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Re: is fibromyalgia a real disease???

you're right "bluelake lady" ...Atascadero is not the sleepy little town it once once. We've lived here 30yrs ,and we've seen lots of changes.

Thanks for clearing up some confusion on my part. I can see where you would want to "put a name" to what you are feeling. I know when my Dr. dismissed my aches and pains after my R.A tests came back neg .that I was pretty depressed about it. I will keep on doing what i'm doing ,which also includes a fairly strict diet ,and reg.exercise. (no processed ,or white foods,quite a few suppliments)... swimming is my exercise of choice. Since i've started on this regimin I am feeling a lot better. Good luck to all of you . Thanks for not "jumping" all over me for questioning

Last edited by kathryn+2; 08-22-2006 at 12:13 PM.

 
Old 08-23-2006, 06:25 AM   #6
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Re: is fibromyalgia a real disease???

hi kat,
attacking is not our style here. we listen without judgment. we all know how we got here. same as you. the hard way. every one of us is glad to finally have a name to go with what our bodies are doing.
i also love to swim and live on a lake. i kayak too. and dance. love to dance.
i went thru atascadero about 6 years ago. did not know the place. there is a shopping mall where i was born. bizarre. i left in 1958. tell the old place this child of hers sends her love.
i stick with a vegetarian diet, except for my candy. giggle. some things i am not giving up! joy of life counts too. and i joy in my chocolate. my weight is good so i indulge, oh, say, every day? giggle.
peace,
bluelakelady

 
Old 08-23-2006, 11:04 PM   #7
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Re: is fibromyalgia a real disease???

Wow 1958 ..that WAS a long time ago! We moved here in 1978. i don't know if you remember it very well ,but we live on a couple of acres on the west side of town on the road that goes to Morro Bay. ( along with our rescue horse and 2 very rambunctious Irish Setters!) I've always wanted to kayak on the bay ,but haven't gotten to it yet ...someday.....

So back to the subject. I don't know if this is what I have or not. A while back I was sure I had R.A because i was so fatigued all the time and everything just ached. I meanI was really, really tired..... but since seeing this chiropracter ,eating right and exercising i'm feeling better. I still have the aches ,but the fatigue has lessened. My chiropracter did tell me that eventually I probably would have been diagnosed with fibro,since all my tests came back neg for other things. But of course I also mentioned that she thinks that diagnosis is a cop out. And I don't mean to say that she thinks it's "all in your head "..but that sometimes some Dr's will use that diagnosis to just dismiss you without getting to the root of your problem...
So ..what exactly is fibromyalgia? I'm still confused as to what it is. Guess I need to be educated.

 
Old 08-24-2006, 07:11 AM   #8
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Re: is fibromyalgia a real disease???

hi kath,
yes i remember the road well. we used to go to morro bay to play on hot days. it is a lovely area. of course my memory of it is from 58, giggle. farms, rolling hills, houses here and there. there were no stop lights then. this was befor the wheel was invented, giggle! my, i suddenly feel ancient.
okay, what is fibro. my personal take on it is that my body sends a message to my brain saying this or that is in such pain. my brain tells my mind of the pain. now is where i step in. i tell my central nervous system it is mismessaging again. there really is nothing wrong. see? there is my leg, or whatever, and it looks just fine.
again this is my take on my body after all this time. my nervous system and my immune system are deeply confused. they truly believe there is an emergency within to report. i must tell you i went thru believing i had everything and the doctors must be missing something. i was wrong.
once i understood that this pain, tho real as anything, was falsely reporting an injury or illness, i could breath. i do have r.a. also had a stroke in march and knee surgery in may. reality is there may be a real problem so i report it to my doc and we check it out. my body is eating my bones. fortunatly they stopped the eating of my knee. now i must have all my little joints checked out. one day my mouth will open and not close. the day that my jaw joints finally are eaten up. nothing to do for that. cope. adapt. eat thru a straw, giggle. mmm, liquid lasagna. yuck!
fibro mimics other illnesses. i have noticed an increase in infections the past couple of years. focused on my bladder and kidneys. i have a scope in a week or two to check that out.
reason fibro is so hard to diagnose is there is no set blood test or mri or whatever to prove it is within. in a way, most of us just know this word fibro fits our reality. i know it does for me. does not mean i don't check out new aches and pains.
i once had a doctor tell me all i needed was a good shrink. after a year of chewing angrily on that i got it. he was not saying it would "cure" me. he was saying lady, you need to get a grip on your reality and you can do that more easily with the new coping skills you can learn from a good shrink. so i did that, and you know what? he was right. i can do this and i can do it with style. 9 years in therapy and i graduated with honors.
while fibro is not "in our heads" it does affect our thinking. drastically. we learn fear of our own bodies and that is never a good thing. we lose that inate trust we have with our body.
it is time for you to really read up on fibro. time to get to know your new partner in life. fibrofreddie is not so bad. you will read about all sorts of "cures". be cautious. fibro is custom made for each individual so you will not be exactly like say, me. i find it facinating. the ability of fibro to create itself based on the history of the body it comes to. old injuries are a favorite place to hang out. i have fibro in my eyes for instance. why? because i had cataract replacment surgery on both eyes. created an injury site for fibro to feed on. fibro attacked and my healing process was altered. now i am unable to drive at night due to refractions caused by scar tissue. it's cool tho. that is where friends come in handy.
you have alot of self educating to do. use your common sense as you read. you do not have to have all of the symptoms to have it. what you read may not be your future so don't freak out. some of us have it mildly, others are bedbound by it. and everything inbetween.
i did not bother going into the symptoms bit with you. you can find that all over the web. i wanted to share the individual aspect of fibro because it is tailor made for each of us.
take care my new friend from the place of my birth. horses. love them. so kind they are to allow us to ride them. do you ride?
peace,
bluelakelady

 
Old 08-24-2006, 12:50 PM   #9
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Re: is fibromyalgia a real disease???

Well,that's a lot to digest. Sounds like you've really been through it and then some .I admire your positive attitude. Guess i'll start reading up on it. Still don't know if i would label what i have as fibro. I did have IBS for about 20yrs ,and then it just seemed to go away. Of courses I totally watch my diet and stay away from the foods I know will trigger it. For the longest time i was scared to eat out ,and when i did I would have to go to a familiar restaurant,and order the same thing every time. And yeah...it was a real bummer not to trust your body. Now i just have the fatigue and muscle aches,which as I said is getting better with diet and exercise. Guess i'll have to look up the 18 trigger points that I've heard mentioned. I do have a few trigger points ,but doubt very much i have 18. I don't know ...i'm 54 ...so maybe some of this is just the normal aging process. Well whatever it is i've made up my mind to be positive and stay as active as possible. You are sure an inspiration.... girl!!!! and ....H E L L O ....chocolate is a must have no matter how healthy i'm trying to eat theses days. I actually found something that at least sounds healthy. It's choc covered cystalized ginger form the health food store. The choc is dark ,organic, and the ginger helps the digestion ...or so i keep telling myself
p.s. Our rescue horse has a problem with her legs and can't be ridden. I used to ride occasionally when my daughter had a horse and still lived at home.

 
Old 08-24-2006, 11:52 PM   #10
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Re: is fibromyalgia a real disease???

I have always wondered if all I have is fibromyalgia. I haven't been diagnosed with anything else (well up to now at least) and have been suffering from fibro for the past 4 years approx. From reading a lot of material, I always fear that fibro could be only the beginning of a more serious condition which is taking some time to develop (like for example some type of spondyloarthropathy, i.e. inflammation of the spine which causes peripheral pain, fatigue, etc,etc). I opened a thread long time ago asking people in this forum, about who has fibromyalgia ONLY. Very few people came with this diagnosis only. Now, bluelake's reply above is pretty interesting. She suffers from rheumatoid arthritis (a.r.). I am quoting the symptoms of rheumatoid arthritis herebelow. Notice how fibromyalgia mimics r.a. If I had r.a. I would definitely think that aches and pains come from r.a. rather than fibro really. If someone has positive diagnosis for other illnesses, then fibro loses its place. Fibromyalgia does not cause inflammation anywhere in the body, nor does it harm the joints as r.a. and arthritis. It's a non degenerative disease.

Quote
The symptoms of rheumatoid arthritis come and go, depending on the degree of tissue inflammation. When body tissues are inflamed, the disease is active. When tissue inflammation subsides, the disease is inactive (in remission). Remissions can occur spontaneously or with treatment, and can last weeks, months, or years. During remissions, symptoms of the disease disappear, and patients generally feel well. When the disease becomes active again (relapse), symptoms return. The return of disease activity and symptoms is called a flare. The course of rheumatoid arthritis varies from patient to patient, and periods of flares and remissions are typical.
When the disease is active, symptoms can include fatigue, lack of appetite, low grade fever, muscle and joint aches, and stiffness. Muscle and joint stiffness are usually most notable in the morning and after periods of inactivity. Arthritis is common during disease flares. During flares, joints frequently become red, swollen, painful, and tender. This occurs because the lining tissue of the joint (synovium) becomes inflamed, resulting in the production of excessive joint fluid (synovial fluid). The synovium also thickens with inflammation (synovitis).
Unquote

Finally I hope that you are only a bit tired and that your minor symptoms will go away with the diet and exercise. Be well and best rgds

 
Old 08-25-2006, 12:47 PM   #11
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Re: is fibromyalgia a real disease???

you know ...from the way i was feeling I was sure I had R.A ...but I took all the tests twice and came up negative. I'm not diagnosing myself with fibro. Personally I don't want to put a name to what i'm feeling. I'm sticking with aches and pains and fatigue for now. Fibromyalgia does seem like a very vague diagnosis to me. Guess that's why my chiropracter won't use it. My pain in my hips ,lower back ,along my forearms,my hands ,and my shoulders is constant ,but not something that will keep me from doing anything. The fatigue on the other hand has resticted my life on occasion,but i think reg exercise and a healthier diet is helping with that. And at 54 ..even though I'm not overweight,eat right and exercise ..I guess I still can't expect to feel like I did at 25. so anyway...the reason i went on this site in the first place was because my chiropracter told me that eventually if i kept going to reg Dr's ,that i would probably get a diagnosis of fibromyalgia. For now i'm tending to go with my chiropracter, who practices the Active Release Technigue on me. It makes sense to me that your muscles can have small tears from normal use that turns into scar tissue and adhesions and restricts the blood flow and oxygen through the muscle. Still it sounds like there are some people on here who are in terrible constant pain and can't find a reason or any relief... I feel very badly for them.

Last edited by kathryn+2; 08-25-2006 at 12:49 PM.

 
Old 08-27-2006, 01:06 PM   #12
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Re: is fibromyalgia a real disease???

Kathryn you are an inspiration to us all.....thanks for letting us know how well diet and exercise is helping you. Blue is a big advocate of diet and exercise and I also try to advocate for exercise. I do try a better diet but I am not quite there yet.

What your chiropractor says does make sense, I have had plantar fasciitis (which is the scar tissue and the restriction of blood flow in the foot) and also a frozen shoulder which is scar tissue in the joint. When the scar tissue is removed the pain goes away. As a matter of fact my treated shoulder has more mobility than the other one.

Stick with what helps you, sounds like you have a handle on things.

Glojer

 
Old 08-28-2006, 01:27 PM   #13
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Angry Re: is fibromyalgia a real disease???

Unfortuenely there are still some out there that refuse to believe that its real because there are not test to back it up.
but thats where there wrong!!!
there are things that show up on certain test that do not show up on those who dont have fms.
If its not real then why are all the phamicuitcal companies trying despratley to find something to help us...

I would like one person who thinks its not real to walk in my shoes for a week.
then i'll ask them what they think.
I never ever heard of the word before i got sick.......
I guess they think i was just willing to give up my great life of traveling and being very active and having everything i needed, so i could spend the rest of my life going to doctors takeing medications and laying on the couch all day.. Pleaseeeeeeeeee!!!!
I'd give anything in the world to go back to how it use to be...
I wish i never went on that cruise back in 97 where i got the virus that started this whole thing.
I will never get over how one day you can be fine and the next day your whole life is turned upside down.

Judy L

 
Old 08-28-2006, 07:30 PM   #14
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Re: is fibromyalgia a real disease???

I'm so sorry Judy that you are in such pain. I'm not discounting the diagnosis of fibromyalgia. It's just that my chiropracter thinks it is used too much as a "catch all" diagnosis ,and sometimes Dr's will use it and tell you that you have to live with it,and give out pain killers etc, instead of getting to the root of your problem Yours sounds like a virus that attacted your body. My problem is scar tissue and adhesions on my muscles,also fatigue from giving in becoming inactive. It's sort of a vicious cycle. The more inactive you are the worse you feel and the less you want to exercise. Once you break that cycle by doing even moderate exercise, the easier it will be to start healing. Sometimes I get so tired and ache so much that I can easily talk myself out of exercising. You should go back and reread "bluelakelady's posts. Now she really has a lot of physical problems ,yet she stiil makes herself swim and kayak,and dance etc. ,and she has such a positive attitude. I don't walk in your shoes true ..but I'm only posting what works for me. I still think that a positive attitude ,reg exercise ,healthy eating habits,and reg chiropractic appts with an Active Release Practioner,will do wonders for most people with the diagnosis of Fibro. Maybe i'm naive.....
I truly hope that you will find something that will help with your pain.,besides pain meds....my thoughts are with you.....

 
Old 09-04-2006, 05:51 AM   #15
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Re: is fibromyalgia a real disease???

katherine----i have to agree. i don't need a name on anything i have i just need help in feeling better. that's what my rheumi gives me. he learned withthe first presciption that i am med sensitive so he doesn't even bother anymore. i'm grateful for that since it gets pretty pricey to fill a prescription, take 3 and realize you can't take it and just throw it out. i know that no matter what we call this there are ways of helping ourselves. my PT told me the other day not to even call it fibro since sometimes the mind than works overtime and you will feel worse. i have taken his advise and am trying different things to see what works and what doesn't. these boards are a true inspiration.

 
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