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I live with FM & that means more than just pain...  

Apr 27, 2009 - 1 comments
Tags:

Fibromyalgia

,

diagnosis

,

Pain

,

test



I want make it very clear that I am NOT saying FM/FMA does not hurt (like u know what), or that we diagnosed w/ FM are over sensitive or what have you. What I am saying is I personally believe FM is given as a diagnosis when doctors cannot figure out or find what is causing the pain and that my personal belief is there is more to FM than they know. And having FM is more than just coping with pain. This is just some my story...

I went through years of pretty much sheer hell- in pain; having test after test; getting only treated for my symptoms never my true illness... I went to many different doctors some lacking sympathy and tossing me aside with the lable "Fibromyalgia".  And God forbid you go to the emergency room and tell them you have that diagnosis! I even had to see a Psychologist, partly (I believe mainly) because of their concern that it was psychosomatic. Which would mean it's all in my head! I've been told "the mind is powerful, if you believe something is wrong your body can actually mimic an illness". ((Thanks for that info doc, glad I paid you to be told that my pain is in my head!!)) And for the record I have been seeing a psychologist now for a good 6 months and she is certain it is not psychosomatic! (Actually, I now have another certain diagnosis.) I still see the psychologist for other purposes, such as anxiety, panic disorder, memories of child sexual abuse, and how to cope with chronic pain and how it affects more than just me in my life, just in case anyone was wondering why!

I've been told I may have Multiple Sclerosis; then it was Lupus; then Lyme disease; and that list goes on!! I have been in the hospital a few times in the last couple of months; staying one time for a week- having a lumbar puncture (aka: spinal tap); multiple test ran, MRIs, CT scans, you name it!! Only to be discharged with "chronic pain" as the conclusion. I was really unhappy that I was away from my children, my husband and my home for a week to basically being discharged with no diagnosis; my husband lost a week of work to watch and care for our two littlest ones, and now Iam getting bills for every doctor I saw or that was consulted or maybe even walked by my room... It is frustrating! I've even had a Neurologist say it was "stress" and he said FM is stress, that basically it is not real.... I have been through a lot the last two years trying to stop my pain, TRYING TO RECLAIM MY LIFE, trying to figure out what went so wrong.

I have been so frustrated the last two years! I cannot even name off all the things I have tried to regain my life as I once knew it, I was given anti-depressants, pain pills, a pill for this a pill for that, the latest pill to help with FM, cocktails of meds; homeopathic treatments, MonaVia, acidia berry drinks and pills, anti-inflammatory meds, professional massage therapy, the list goes on and on! I've read so much on fibromyalgia, bought books, magazines, and research on the Internet. Seems there's to many theories and less certainties on FM and how to control it!  

It got to the point where I was loosing my mind, crying, wondering what my future would be- I am 32 with 2 birth children 5 & 9, three children I was blessed with by marriage (18+ ages), and a 1 month old grandson; here I am spending so much effort trying to get better, so tired I can't even enjoy my children like I want to!!!! To be completely honest my emotions were all over the place, I have went through feeling all sorts of emotions- sometimes sad, angry, frustrated, lonely, crazy, no desire to live, desparate, weak, determined, accepting, begrudging, intense, mad, lost...ect. Sometimes I was okay and just accepted it and then the days it kicked my butt there was no telling which emotion I was going to feel! It has taken toll on me. But I am still here thanks to support of many off this site and my friends and family. But I won't lie sometimes I have felt like no one understood my pain or really believed me....

Having fibromyalgia has really been a big deal in my life! People who do not have it cannot really understand the frustration and magnitude it can have on your mind, body and soul! I know there are people suffering from far worse illnesses and diseases!! I by no means am saying FM is the worst thing to have!!  I am simply saying FM is in a class of it's own... It is so important to have support from someone whether it be a stranger you meet here or someone else with FM!

For myself I never settled for FM as my diagnosis! I knew more was wrong, this was a lable because they, the medical community, had not figured out what was really going on inside me.  I now have a diagnosis that is being treated and my life is improving!

After all I have been thru I am told I have: Peripheral neuropathy, arthritis, fibromyalgia, nerve damge, and an "unidentifiable" auto-immune disease. Now I must see a Rheumatologist because some test came back with a number in normal range but it was questionable and I have the symptoms of RA. Wow, it just stacks up more and more. I wonder where the ending is.

The good news is I am being treated for my Peripheral neuropathy and it has made a world of difference. I feel a lot better!!! I am able to function fairly well, a lot better than I was over the last 2 years that's for sure! I am not as tired, sleep is returning to normal, I can clean my house for more than 10 minutes now without being in pain! But there are still so many questions, I know some I will never know.

I live with Fibromyalgia and that means more than just pain.  

Thanks for letting me vent. Thanks for reading too. I guess we are in this struggle together, nice to know you are out there! If you need or just want to share your story with me I am here and I will listen.

Have the best day you possibly can!
Jennifer

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895829 tn?1241716515
by mammachapa, May 06, 2009
Wow Jennifer,
you are so young 32 and going through so much. I am 51 ok will be 52 in June but I feel you, I feel like I am going crazy, I have not found a Doctor I trust, I have one that just gives me a pill for this and one for that.  I take about heck too many to count
I try not to take pain meds during the day, not that I don't have pain, I will sleep.  The Fibro, I am like you I think there is more to that, I had some wrist surgery this past summer, they had to cut a piece of bone, they didn't know why it started growing out and hurting, so it kinda stopped.  But the past few days, guess what now my other wrist bone hurts and all my body aches and joints, toes, knees, neck. etc.  and then have the bladder problem (interstial cystitis), bad sinuse infections!! at the same time. girl its horrible.  I know I am not crazy, because I do end up having some kind of syndrome or name of illness.  I pray you get better, I have good days but more bad days,  And then I raise a 11 yr old grandson.  I am not finished.  but will make the best of it and trust God he  will help us all.  I needed to vent too.,
Have the best blessed day you possibly can.
Mamma Chapa

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