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Finally a diagnosis!
12 Replies
amilee - November 8

After the birth of my son two years ago, I just felt like I never recovered. I had pain in the bottoms of my feet, I hurt whenever anyone touched me (like a poke in the arm), irritable bowel symptoms, aches all over the place, tired, blah blah, you know what I'm talking about. First I attributed it to being a tired new mom and my weight gain. Dr. diagnosed me with plantar fascitis. He told me the pain would eventually go away, I just had to wear a good pair of sneakers around my house! (It hasn't gone away yet and it's almost 2 years) I mentioned to him several months ago that I thought possibly I had fibromyalgia. He said "No, you don't. If you did, you would feel pain here, here, here, here...etc...meanwhile, didn't even touch me in those trigger points to see if I did. I left his office thinking my body was just worn out and maybe I was just stuck with these weird symptoms for the rest of my life. (I'm only 34!) Anyway, after going back to him for this and that (pain in ankles, breast bones, fingers, stiffness) he finally said tonight that I had Fibromyalgia....then went on the explain what it was. I guess he forgot we had this conversation already and he completely dismissed my self diagnosis. And weirdly enough, I'm happy....finally I know what is wrong, it's not all in my head and I can now get help.

He put me on Amitriptyline. Does this sound right? I am just not sure I have much faith in him anymore. He didn't really give me much info, just to come back and see him 4 weeks.

 

kaye - November 15

i tried the amitriptyline it made me gained weight i have found a new med that is wonderful it is cymbalta gives you alot of energy and takes away most of my pain im only36 years old .i also take ambien for sleep

 

Virg - November 15

Congratulations amilee! I think that is the biggest hurdle we have to cross. Getting the doctors to see what it is. It seems amitriptyline is the drug of choice when your first diagnosed. Now it's a try and see stage. If you find its not doing anything for you look into something else. Good Luck.

 

JJ1 - November 16

I am on Amitriptyline (Elavil) and it has worked well for me. It eliminated my pains and most of my symptoms. I still have fibrofog and fatigue -- worse at some times more than others. I don't take anything else right now. I also have occasional problems with anemia and I think sometimes when I think I am having FMS symptoms, it is just my iron dropping again. Good luck. Hope it works well for you.

 

barbar - November 16

It's great finally getting a diagnosis but next comes learning what it means to have FMS. (BTW, if your doctor told you what it is, would you share that information with us?) I have a great doctor, a specialist in fibro, who puts as much emphasis on helping you learn how to live with the stuff as he does on relieving the pain, the fog, and the fatigue. For example, he sent me to an occupational therapist so I could understand what impacts FMS has on my work as well as learn how to educate my co-workers on the disorder and what to expect, for example, how to help them understand that I have pain spikes and these may appear as a "mood" changes, as well as how to help me through the fog when necessary. It has given me peace in the workplace and helped my job performance enormously. He sends us to another therapist who helps us understand and deal with chronic pain, for example understanding what habits we have developed unbeknownst ourselves to cope with it. (I have bitten down so hard and so much on my tongue that I have a permanent scar. I have clinched down so hard on my teeth over the years I had to get caps.) It was extremely important learning the difference between chronic and acute pain and how our bodies deal with it. My doctor also taught me what that scale means. You know, the scale they ask you about how much pain you're feeling, between 1 to 10? He finally explained that a 10 means you can't get out of bed. I had been thinking a 10 was you were in labor while you were one fire while you were trapped in a burning, crushed armored personnel carrier in combat in Iraq. That to me would be pain. He explained that although that surely would be painful, it was a little extreme. He also congratulated me on doing as much as I do. He sadly had to i nform me (and my employer) that without certain workplace accommodations (such as a special chair), I was 100% disabled. I had not known that. I thought I might be about 20% or 30%. Learning it was 100% was a bit of a shock, but I did get my chair and because I have to have special accommodations in my transport to and from work, I now have a tax deductible SUV. So get a good doctor who can educate you on the condition as well as provide support and perspective.

 

JJ1 - November 16

Barbar, it sounds like you have a great doctor. I think one thing that hurts us most with this FMS is the lack of understanding of others. It is hard to get people to understand how sick I am on somedays when other days I can feel so good. I am fortunate to have a job that allows me to for the most part to pick and choose my own schedule and also to pick where I would like to work. On my worst days, I will work from home -- I don't have to interact with others, I don't lose the time I could be working to driving, and I can lay down and take a nap if I am overcome with fibrofog. But there are times when I must go to the office or, even worse, travel for work. Nothing worse than being on a business trip and being overcome with symptoms and being surrounded by people who don't understand.

 

barbar - November 16

JJ1, Yes, being surrounders by co-workers who do not understand. That's why it was so wonderful that my doctor sends us to an occupational therapist. (And he is a wonderful doctor.) My boss is great, too, and so far I haven't had any trouble with my co-workers (except this one who kept thinking I was grimmacing at him in a judgmental way every time I had a pain spike. I tried to explain it to him, but no, it was all about him). You come to learn not only how to help your co-workers deal with your fibro but also that may have some wonderful co-workers who really know how to help.

 

larry - November 19

Barbar- I don't mean to be disrepectful but if your doctor is so good then you shouldn't be in pain. This syndrome is very treatable and he/she should be focused on healing you and not just treating the symptoms like you mentioned how he/she puts as much emphasis on helping you learn how to live with the stuff as he does on relieving the pain, the fog, and the fatigue.

You can heal your body so that you don't have brain fog, pain, stiffness, etc. Pharmacueticals only address these symptoms that you mentioned. They don't heal. I wish you didn't have to go thru being refered to different doctors. Yes, it is nice that your doctor is understanding and is helping you "cope". My wish for you is to expect more from a doctor, not just learn to cope but ask to be healed, have the syndrome reversed. It can be done. Best wishes Barbara.

 

TERESA - November 19

Doctors don't like to have you diagnosis yourself!! The samething happened to me! My DR had been treating me for shingles & postherpatic neuralgia, then I found this site!!!! I suggested that I had FMS & he said NO you don't hurt in the right places! He never examined me, or tested me for anything!! After seeing him for a yr & a half, he finally tested me for Lupus & sent me to a rheumatologist who diagnosised me with BOTH Lupus & FMS. I think I have tried about everything!!!!! I am now on a regiment that seem to be working, but I did take amitriptyline & it was horrible for me! It kept me awake all night & I was becoming PSYCHO! I am now taking Cymbalta & trazadone with no side effects!! For some reason my DR won't put me on a sleeping pill or a muscle relaxer? I do take two different narcotics, Neurotin, & several nutritional suppliments. Right now IT WORKS!! Hope this helps!

 

JJ1 - November 20

teresa, it is weird that Elavil kept you awake at night because it is given to me to help me sleep and seems to work. It helps me get to the deep sleep you need to feel rested upon waking. I know it seems to work differently for different people though. Like I haven' t had a problem with weight gain with it either like others report. I take 25 - 50 mg/day a couple of hours before bedtime.

 

barbar - November 21

Larry, I can't mention all the things my doctor does for me, there isn't enough room. You are right, you measure a doctor's worth by how much you can be healed. I apparently have a severe case of FMS. I am most of the medications people mention here, 9 in all, and of course, there is still some pain but it is not like it is were I not on the medication. But if you know of the cure for FMS, I wish you would share it with us. It would be a great help. Barbar

 

CarrieLee - November 25

You know I read somewhere that it takes an average of 5 years for a woman to finally get a diagnosis for fibro. It took almost that for me. By far the worst was the first few years, not understanding what the jeck is wrong. living in fear is worse than even the pain!

 

CarrieLee - December 13

Bump!

 

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