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I'm having a problem believing that FM is a real disease.
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suzeb0606 posted:
Now before everyone wants to scalp me, let me explain. I am 57yrs old, diagnosed with lupus when I was 13, went through kidney biopsy, every kind of med known to man, been on despised Prednisone for 11 yrs (10 mg/day). Now my nephrologist says after menopause that "lupus fades away" and I am dealing w/FM. Wish there was a blood test that could show neg or positive. I'm coming to the realization this must be FM.

I have constant pain, especially across my shoulders, up back of my head and down my back. It is throbbing, gets to a point where I think I can't tolerate it, then subsides. The fatigue is greatly affecting my quality of life. Sleep doesn't relieve it.

Just had a left knee revision on 7/01/10 of a knee replacement done May 2008. Doing well with that, but the surgery seems to have caused the "FM" to flare up. I have had 6 surgeries since Jan 2008. I cannot take anti-inflammatory meds because I have stage IV kidney disease. My kidneys apparently cannot tolerate ingredients in those meds. Ibuprofen helps, but whenever I take it, it causes my kidneys to act up.

I just want to get to a place where I can get up every morning & know I am going to feel at least decent that day. Sometimes just dealing with the "foggy" feeling in my head drives me nutty (short drive).

I'd like to plan something a week ahead and know that I probably will feel well enough to go. I can't count the appointments that I have cancelled because there is no possible way I could go.

I've dealt w/pain since I was just 13, so that's not new to me. The fatigue, thats the part that makes me crazy. I have no appetite, thus, I've lost over 60 pounds in a year. I know I must eat, but food...yuck!

I am an outgoing person, was always on the go, worked 2 jobs, my husband & I raised a daughter, life was good w/a few little setbacks. Now I rarely go out, if I do, it is to.....THE DOCTOR'S OFFICE!!!

Thanks for listening...misery loves company unfortunately. I am determined to beat this disease...

Suzie
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KatieCarr1962 responded:
Hi - I was diagnosed with fibrositis 20 years ago due to significant back pain and inability to move/get out of bed in the a.m. without my husband actually physically having to lift my upper body to a sitting position, and then standing on knee and ankle joints that just throbbed with intense pain when standing & walking. My sleep at night was constantly interrupted by the pain of turning position in bed, etc. I had daily severe headaches, and still went to work as much as I could as a traveling speech therapist. I went through every blood test known to man at that time (late 1980s), X-rays, you name it. And NOTHING abnormal was revealed, so the dr called it fibrositis.....about 5 or so years later, the name fibrositis was changed to become fibromyalgia and a new medical "condition" emerged. For many years, most drs I saw for the chronic pain, tender points, headaches, sleep disruptions, etc. tried the "it's all in your head" or "just think positive thoughts and your pain will disappear" strategy. Finally after all these years FM is a legitimate diagnosis. I'm only speculating here, and I'm not trying to tear you down in your opinion since we are all entitled to our opinion, but why after all you've been through medically are you against the diagnosis of FM? Is it because you think of it as a disease? It's not a "disease" which can lead to organ/tissue/body part damage, such as lupus, which you were diagnosed with. FM is a viable, true, medical "condition" or also called a "syndrome", not disease. If you're looking at FM as a "disease" that you can "beat" with meds, or positive thoughts or exercise, etc. I wish you well. I haven't found my "cure" in the 24 yrs since I was diagnosed and continue to deal with chronic pain, fatigue, IBS, etc to this day which are all part of the FM syndrome, not disease. There is no blood test, X-ray, etc. that can specifically say you have FM; it's more often diagnosed with a process of eliminating other medical conditions/diagnoses with similar symptoms. The best any of us with FM can do is "manage" it and try to find what lessens our most pertinent symptoms that affect us. FM is a chronic, incurable condition and affects a person in a unique, individualized manner; it is NOT a disease.

I wish you well in your quest for relief. Just getting through each day is a blessing to me and some days are better than others. A "flare" can put me out of work for 2-4 days depending on severity. I have tried the "new" drugs for FM, such as Lyrica, Savella, Ultram, Effexor, and have not yet found what works for me. I use Elavil to sleep at night and have had great success with improved, deep sleep on this drug for the last 20 years. I also have additional painful conditions that exacerbate my FM symptoms and am working with a pain clinic to find the right med combos, exercise/activities, and massage therapy to cope with the chronicity of my pain.

You might want to read the book "Just Fine" by Carol Sveilich, MA which is loaded with information and personal stories about "unmasking concealed chronic illness & pain", e.g. fibro, lupus, crohn's disease, arthritis, etc.

If you don't believe in FM, what would you classify your current symtpoms as? Part of lupus? Kidney disease? They sound very much like fibromyalgia to me; but I am not a medical expert, only one who has lived many, many years with FM and recognize many of your symptoms to be similar to someone with FMS, not the "diease" of fibromyalgia.

Take care of yourself and good luck,
Katie
 
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Grampa_Bear replied to KatieCarr1962's response:
34 years in the crosshairs here...some relief with my Chiropractor and hot soaks....but the ouchies and fatigue still keep returning...bummer, eh?

Jim
Bringing Faith to the Doubtful, Doubt to the Faithful, Comfort to the Afflicted, Affliction to the Comfortable and Funk to the Funkless.
 
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karenrugs responded:
Suzeb,

FM is hard to dx and to understand. But, once you do educate yourself on fm and how to handle the flares, your day, do's and don't's, you'll find it's more manageable. You'll still have flares, wish we didn't, but you'll know more about how to handlde them.

Good luck with all your going through.

Hugz,

Karen
A strong positive mental attitude will create more miracles than any wonder drug.
 
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karenrugs replied to KatieCarr1962's response:

Well said, Katie.. I hope you find the right pain management for your pain and discomfort.

Take care of yourself and and good luck with your pain. One of these days, hopefully, there will be something for all of us to control our pain.

Hugz,

Karen
A strong positive mental attitude will create more miracles than any wonder drug.
 
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karenrugs replied to Grampa_Bear's response:
Face it. We're all sick and tired of being sick and tired. :-)

Karen
A strong positive mental attitude will create more miracles than any wonder drug.
 
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Dollbug replied to KatieCarr1962's response:
Hello Susie and Katie.....and welcome....MiMi in NC....I do not think I have "talked" to you.....pardon me, if I have and just can not remember....as this is a growing and fast paced exchange.....I would encourage you both to ask your doctor to check your Vitamin D level, if you have not already done this...it is a simple blood test....low Vitamin D can cause some of us FMers additional pain.....and it can be a real important part of how we feel....

I am glad that you have found this unique FM support group....but sorry that you are dealing with the wrath of the dragon....I am sure though that both of you can find something that will help you both to cope better with FM.....I urge you to review the info under Tips and Resources which you can find to the right of this page....be sure and read the member toolbox and nutrition and vitamins....

I am one of the FMers who have tried several different medicines but have been able to find something that really helped me without a lot of other side effects...and I do not need anything else to deal with....but after a long time of doing my own research....I have learned how to "control my FM pain" by taking vitamins and supplements....

I take magnesium and malate combination supplement, (found at vitamin stores) Omegas, (I take Fish Oil, Salmon Oil and Krill Oil) Super B complex, Vitamin D, and Calcium plus others....as I have multiple health issues....

As I am sure you both already know....we are all different and what helps one may or may not help another...and only you will know what helps you.....it does take a trial and error process to find the right combination of things though to help you cope better....I also use heating pad, Stopain spray, hot shower at night with lavender bath salts to help relax my body...gentle stretching and exercises....and I have to sleep in a recliner....since I can no longer sleep in bed....

There are no overnight or quick fixes though....so anything that you try....will take time and effort....you have to allow at least 6-8 weeks before you will know if something is indeed helping you or not....

I hope you both will post often, ask questions, make comments or suggestions....

I would like to tell you also...that I consider FM an illness, not a disease.....since most of the time....my body just feels like I am getting the flu....

Take care and good luck....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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suzeb0606 replied to KatieCarr1962's response:
Katie, Thank you for your comments. Perhaps using the word "disease" was incorrect on my part. I meant it more as an overall condition. I also should explain that I spent 30 yrs working in the medical field, first as a medical transcriptionist, then front desk in a doc's office, moved to the back office to help as an assistant w/exams, w/o formal training; the doctor I worked for trained me. This was in the late 1970's. I then worked for 2 family practice docs and, by now, this is late 1980's, early 1990's. For about 2 yrs, I worked the front desk & checked patients out, getting ins. co-pays, info, entering charges/diagnoses in computer.

And, Katie, you are absolutely correct; it was then called fibrositis, sometimes myofibrositis. These diagnoses were usually given to what the docs considered "chronic complainers" OR worse yet, hypochondriacs. We saw it over and over and over and, unfortunately, started to believe it....MY fault. Here were these patients, usually women but men also, truly in pain and miserable, but because all their lab work came back negative, the docs treated them with muscle relaxants and told to keep stress levels low (yeah, try that one) & come back in a month. And they did, month after month after month, frustrated but nobody seemed to know how to treat something that didn't show up on lab work.

In 1999, my lupus flared severely, ending up at Ohio State University Hosp with a BP of 220/110, immediately admitted, had a kidney biopsy and started on oral chemo to slow down the progression of the kidney disease. Thank God, it worked, but I had to go back on Prednisone.

In 2000, I gave up my job at the doc's office to assume a elected official position as a township clerk, now called fiscal officers. I worked out of my home. This helped tremendously. In 2004, started having what I thought were flare ups of the lupus, but those tests came back negative. I assumed after all the potent meds I had taken perhaps they were causing problems. Then the nephrologist told me I had FM. PLEASE don't take this wrong. I thought after having lupus for 40 yrs, FM surely wouldn't attack me after all I had been through; and there wasn't much info out yet on FM.

I am slowly accepting that I do, indeed, have FM & wanting to be proved wrong. My lupus has "faded away"; yippee, maybe I can now do the things, travel, etc that my wonderful husband would like to do; he retires next year after being a captain on the fire department for nearly 30 yrs. But I know we are going to have to learn to live w/FM as we did w/lupus our entire married life.

I get the feeling that I insulted you; that was NOT my intent to anyone, anywhere at all and I am truly sorry for that. I should have thought how I would come across & I didn't. Please accept my apology.

I joined this forum to hear others stories, perhaps to disprove mine. I think it is opening my eyes to the fact that I am wrong and as I have for most of my life, I must now find coping mechanisms to deal with the FM in my particular case.

Again, please be patient w/me as I now start another journey with a very unpredictable condition, accept it & learn to live w/it in the best possible way for me & my family. Thanks for listening. Suzie
 
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suzeb0606 replied to Dollbug's response:
MiMi, please read my response to Katie. I hope I explained myself & should have used "condition" rather than "disease".

I probably will not try the new drugs for FM. I would rather manage it w/supplements, etc. Just had my Vitamin D level checked 8/14/2010 and it was normal. I stopped my supplements for Vitamin D for several wks before my appt to get a true reading. I will continue to take vitamin D-3, calcium/magnesium/Vitamin D and an excellent multi-vitamin produced by Melaleuca; it has an oligofructose complex that does not upset my stomach nor do I "taste" it several hours after taking it.

It says it supports energy & overall health. I had to stop it for 2 wks and noticed that I was feeling more down than usual. When I started back on my supplements, my spirits definitely lifted. For that, I am thankful.

God has been very, very good to me and I know He will continue to care for me. I think I was trying to convince myself & everyone around me that now I am well & I can get on w/life. I will get on w/life only w/modifications.

I will continue to follow the forum for info, tips & support. I hope others read my 2nd post w/o wanting to scalp me for being insensitive!

Take care & thanks for responding. Suzie
 
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Socialwrkr replied to suzeb0606's response:
Hi Suzie,

I have a feeling that your issue is more with accepting that you have this condition, one that at one point you saw as invalid, rather than just not thinking it's real. Understandably, as you said, doctors thought we were chronic complainers since all the tests come back negative, and if you worked around that, you surely had the same experience.

And that's ok. Now you are on this end of it though, which I'm sorry for. Research is finding ways to definitively diagnose fibro through PET scans, although I suspect it will be a while before those are done routinely. But, the scans show that our brains are misfiring, misunderstanding signals, and all kinds of other stuff.

As for lupus fading away, I'm not sure how I would take that. You may be in a state of remission, which we're thankful for, but I have never heard of it fading away. However, what isn't unusual is for someone to develop fibro after dealing with lupus. It's considered secondary fibro then.

I'm going to check out that multi vitamin you are taking. I'm so frustrated with the ones I'm getting, huge horse pills and then tasting them as you said!

I hope you'll find the board a great place to learn about fibro and gain some understanding. It is possibly some folks will respond without having read your second post, so be prepared. We've had a few little tousles here lately, but that's not the norm. We are really a caring and helpful group!

Best wishes to you!
Be Gentle on Yourself!!! ~~Aimee http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee http://www.lumigrate.com/ Fibromyalgia forum writer, Aimee
 
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alispazz responded:
Suzie,

Hi there, its okay if you don't want to believe in it, I spent years in the denial stage....I have multiple issues...and believe it or not I thought it was lupus....that runs in the family. I prayed every day that some one would figure it out and make it go away.

I have to say that the first two years of this syndrome...which is what my Dr.'s call it....were probably the hardest, trying not to take drugs and keep my job....but eventually the Chronic Fatigue caught up and I just could not do it anymore.

As i sit here today I can honestly say that I now believe, this crap is real and I hate it.

I have had so many medical problems in my life and to go into old age with all of this hanging over my head is not a pleasant thought. My Dr.'s bless them do their best to make me comfortable....Don't I like all the pills no, but I am finally to a point where I sort of function...and to me that is better than the being in a chair all day and never leaving home...

As MiMi pointed out it takes time to find what works for you.....I hope this happens sooner than later.

Hugs

Ali
Follow your heart and not your dreams..the dreams are from your mind and can lead you astray, the heart never can..SMOLOL Hugs Ali
 
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pocotaz responded:
Suzie,

I do not take offense to why you didn't and do not want to believe in FM...

I had issues myself in believeing...because i didn't want to believe there is no cure and not much out there to help ...i fought it for the first couple of years and then i found that the more i fought the less i was helping myself.

Then i came across this site and knew there were others like me...and they had lived longer than i with FM ...so many helpful ideas were given to me and i use quite a few of them and i am so very grateful for all the help i have been given by others here.

So nowthat you are beginning to see this in a different light..you can also begin to use some of the things that helps others to ee if they will help you...and you can come here and ask questions as they pop up ...some one always has an idea...

Good for you in being able to say how you have felt about it...and i am sorry you now have to see what those woman went through.. so unfortunate but this is what happens to alot of others who go to doctors only to leave crying because they know the doc doesn't believe either....

It's hard when you haven't gone through it to understand it.. so i would like to sa welcome and i hope yo can learn how to manage your life with FM..

Big hugs to you...

Linda
 
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mischelle360 responded:
Hi Suzie,
I am 41 and coming to realize that I have lived with FM for most, if not all of my life. Although I will admit I haven't been to the Dr with 98% of my problems for fear of not being "believed"... until recently.

I also truly feared I had cancer and that Must be the reason I Hurt All over All the time and was why I stayed so exhausted as well. I also deal with IBS (which I didn't even know there was a name for that as well), but I didn't realize the extent of it until I had my gallbladder removed a little over a year ago.

Since then I keep diarrhea, I cannot eat without having to find a bathroom quickly! I researched IBS and know now that I suffer with it and have even before the gallbladder removal, although in a different way.

I have an online friend who has fibro and am ashamed to admit that even that wasn't enough to send me to searching about it. It wasn't until I seen a commercial on tv about FM that I knew I suffered with it.

I am not one to go to the Dr often, even when I SHOULD go, instead I suffered alone and suffer I did! Sad part is, I was so used to living with the pain that I didn't realize just how much pain I have suffered until it got unbearable over the last several months to a year now.

Knowing what I know now, from reading everything I can find at this site about FM, I now know that I have dealt with this most all of my life. Just not as severely as this last year

I am starting to see just how lucky I am to have the Dr I have, I have used him for at least 6 years now and he knows I am not one to complain for no reason. And has truly made me feel comfortable discussing my FM problems with.

So far I am being treated for FM with Savella although I haven't been diagnosed with it yet... Not until he rules out everything else. I was totally scared of this unknown drug to me, esp after reading it's possible side effects. But I am So Very glad I did listen to him and started taking it. Wow what a difference it has made on my life this past week! I am just now into my 7th day on it and am just Amazed at the difference in how I feel emotionally and physically, already!

What works for me may not work for you as I have seen so many posts here on people struggling to find the right mix of meds to deal with their FM.But so far Savella has been a blessing to me, I pray it keeps being so. I honestly don't know when I last felt this good...

In the past I was told I needed antidepressants and to reduce my stress.... As if we can control our stress levels... The last antidepressant I took was zoloft and although I felt fine on it, I had major withdrawal symptoms when I quit cold turkey. I just had a funny feeling in my head when I would look one way or the other. Just hard to explain... But that has left me in fear of taking something u are to wean urself on, then off of when coming off of it. Although at the time, I didn't know I needed weaning off of zoloft. I found that out the hard way.

Since then (before I knew of FM) my dr wanted to put me on another antidepressant a few years back buy I refused it after my zoloft experience. Instead I used xanax when I got really stressful and also to help me sleep. But it never helped with the pain and exhaustion...

Since starting Savella,, I went from taking one and a half to two xanax a day to half a one, sometimes a whole one to help me sleep. When I lay in bed, my mind races 90 to nothing! Not so when I take a xanax...

Just know that you are in the right place here. I know this site and community has helped me more than words can say even tho I haven't posted a whole lot, I have read So much and it does help to know others suffer in the same way I do so I am not alone in this. We can't All be crazy, right? LOL

I don't think it helps either that I was sent into early menopause at such a young age, Early to mid 30's, about 8 years ago after taking the worse birthcontrol shot Ever! Depovera sp? What a nightmare them two shots put me in.

I wish you the Best!
 
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Dollbug replied to suzeb0606's response:
Hello Susie......MiMi in NC.....Perhaps the reason this has been hard for you to accept is because you have worked in the medical field....and perhaps you have seen or heard about a lot of us FMers.....who doctors "think" that FM is not an illness....and how the shoe is on the other foot for you....

Most of us were "A " personalities.....did it all and then some more.....never knew how to say no to anyone...somehow we managed to do what needed to be done...and then some...and kept right on going and doing...
And then.....one day....the wrath of the dragon, aka FM....appeared in our life....full force with its tail wrapped tightly around our bodies....and perhaps spit fire at us too...and our lives changed....yes....I have been there done that...as I am sure a lot of us have....it is a life changing issue....

My husband and I raised 3 wonderful children....2 boys and a girl in the middle...and I now have 3 wonderful children...2 boys and a girl...and I enjoyed every minute of doing this...I was a stay at home mom...and was always a grade parent for my children's rooms....yes....I participated in all of this...school, church, sports, scouts, dancing.....you name it and we did it....on the go all the time...and this was our life...

Would I change it? Absolutely not....could I do this today?
Absolutely not....as I no longer have the energy to do so...

When I got sick....I knew that I was really sick....and I had multiple issues going on ....I, too, thought that perhaps I had some sort of cancer and I truly thought that I was going to die before the doctors figured out what was wrong with me...and I will also share this with you....I think I got close to death...the doctor told me that he was quite surprised that I did not have a heart attack or stroke....(you can read more at my personal exchange, if you are interested....Vitamin D and Pain and Wrath of the Dragon)....it is a long story and I am sure everyone is tired of me posting it....

We are FMily.....and I am glad that you have found this unique FM support group....

I hope you will post often....and ask questions, make comments or suggestions and hang out with us....

Take care and good luck....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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suzeb0606 replied to Socialwrkr's response:
socialwrker, I think you are correct. I've been through many things, patients would come in w/sore muscles & I'd think "hmmm, sore muscles, let me tell you...", wrong attitude, I know.

Re my lupus "fading away", I've questioned my dr at Ohio State University in Cols, Ohio, several times about this. Lee Hebert, M.D. is his name, specialist in lupus/nephrology. His nurses & everything I can find about him tells me he is world renown in his specialty, has written many papers and drs throughout the world consult w/him. He explained to me researchers think lupus is somehow connected w/hormones, not sure how, but as we go through menopause, less hormones, etc. Perhaps he used the wrong word "faded", perhaps going into a long term remission would have been more appropriate.

You can locate the vitamins I'm taking on
www.melaleuca.com Because I don't want to get involved in all the ones offered, I take the recommended doses of Vitality Multivitamin & Mineral. Was taking ones for women but switched to the 50 yrs & now have my husband on them. I also take Vitality Calcium Complete w/Vitamin D, calcium and magnesium. They are not huge pills and if you eat even a cracker or 2 you won't get that after taste. From another company, I take Vitamin D-3, 4000-6000 IU per day; these are very small pills, Vitamin A 25,000IU to promote healing as I will be having another surgery sometime in October. Long term use of Prednisone has left my skin quite thin & long time in healing. I also take Lutein 20 mg for my eyes as I had cataract surgery in Jan 2008 at 55, long family history of eye problems. But this was great as I was NOT a candidate for LASIK. I had worn glasses since I was 8 yrs old, contact lens at 15 yrs old and now all I need is reading glasses! Thank God! Cataracts is another side effect of Prednisone.

Dr Hebert will send me a letter after he gets my labs and outline a plan for me to get off the Prednisone so the damage it does can be at least slowed down.

Re the some tousles here & there, no problem. I'm not here to cause problems, just get help & support. I used the wrong word and it probably will upset some who are suffering terribly and then along I come, doubting that FM even exist, and thanks for the heads up.

I will keep returning, posting and looking for coping mechanisms. Everyone has been great so far.

Thanks for listening. Suzie in O H I O, home of the BUCKEYES!!!!!! GO BUCKS


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