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Old 10-18-2005, 01:35 PM   #1
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Casey924 HB User
How is Fibro diagnosed?

Hey everyone,
I've been sick for six, going on seven months.. I'm so tired I can't barely wake up, I am sleeping as much as humanly possible, my body aches like I've been hit by a Semi truck, I feel like I can't hold my eyes open, it seems like I can't even move I'm so achey and fatigued.. I just can't seem to get better. My boyfriend's mom who has fibro as well as a slew of other things thinks this may be a possibility for me since all my other blood work has come back fine. How did you all get diagnosed & does this sound at all like fibro to you? I'm just stumped and really needing a light at the end of the tunnel. Thanks

 
Old 10-18-2005, 02:49 PM   #2
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bilij HB User
Re: How is Fibro diagnosed?

Hi Casey, I'm sorry to hear you are feeling so achy and tired. I was much
older than you when fibromyalgia hit me almost suddenly after an arthroscopy
on my knee. First came the pain and then the overwhelming fatigue. I was so certain it was arthritis that I wouldn't listen to my family doctor who knew me so well she
ordered blood work which came back negative for lupus or RA. She had x-rays
from the knee injury and saw no arthritis. I would not believe her so I went to
a rheumatoligist who repeated the blood work and x-rays. Then he sat me on
the exam table and pressed 2 areas in my upper back and I came off the table.
He didn't know I'd already been diagnosed with fibro. He confirmed what I'd been
told over a year before. I still couldn't believe at 70 I could develope this disease
that was for younger folks. I was so stubborn that for 2 years I just suffered
silently.....finally I went back to my family doctor and apologized and told her
I had gone to another doctor who gave me the same diagnosis. She said, '' let's
treat this fibro starting today.'' She prescribed Vicodin for pain and Ambien for
sleep and within a week I was feeling so much better. I still have some bad
days like weather changes or unusal stresses, but I know they will pass and
better days will follow.
Others on this board have different experiences and are much younger than me.
I'm sure they will give you their opinions and tell you how they were diagnosed.
I guess I just wanted you to know that you need to find a doctor you trust and
not waste 2 years coping with pain. I wish for you better days!
Bilij

Last edited by bilij; 10-18-2005 at 02:54 PM. Reason: tried to shorten post without success.

 
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Old 10-18-2005, 08:44 PM   #3
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mindutopia HB User
Re: How is Fibro diagnosed?

For me personally, it was simply a process of elimination. Blood work was all normal and they just couldn't come up with anything else it could be. I don't pass the trigger point/tender point test (sorry I forget which one is for fibro and which is for myofascial pain syndrome), but I have pain in all four quadrants of my body and lots of the other auxiliary symptoms...like IBS, vulvodynia, CFS, etc. My doctor put me on amitriptyline and neurontin and the pain and fatigue improved fairly rapidly. That was three years ago and now I'm stable. So basically diagnosis was through a process of elimination and waiting to see if treatment actually worked. Hope that helps.

Take care,
Karen

 
Old 10-18-2005, 09:17 PM   #4
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Re: How is Fibro diagnosed?

Hi,

I diagnosed myself. After my second major asthma attack in less than 10 years whereby I was clinically dead again, I was even more tired than I had been, which I thought was impossible, since all I wanted to do was sleep, yet after sleep I was even MORE tired. Finally, I was at the doctor's one day and said, "I think I have fibro" since I had seen some magazine articles, and yep, I had all they signs. His response? "Of course, you have fibro!!" I was like, "why didn't you say anything?" He didn't respond and did nothing for me either. I don't have him anymore. I tried the amitriptyline and flexaril and those only worked a little. I have better success with benadryl and a very regular bedtime routine. My bed is my sanctuary and I make it as comfortable as possible.

 
Old 10-19-2005, 07:05 AM   #5
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Sun_Shine HB User
Re: How is Fibro diagnosed?

Hi Casey, sorry to hear you're having so much trouble getting a diagnosis - that's the hardest part. For me I started having dragging fatigue & tender spots in my 20's but, when I'd mention it to doctor's they'd always chalk it up to my high stress job and work schedule.... now in my 30's things keep getting worse. The mack truck was running over me daily & my cognitive abilities began to suffer - I couldn't do my job as my memory was just gone. No matter how much I organized and took notes I just could not keep up.

I sought out multiple doctors and after going through a zillion tests to rule things out I had 3 doctors diagnose Fibro. The main thing was after doing all the "tests" (blood/urine/EEG/MRI) they tested my "tender points" by pressing in on my body - different points. But, everytime I'd freak out from just a light touch and would jump away from them due to the pain. Other areas though that weren't tender for me like my elbows they were able to touch without me jumping. But, the key is finding a doctor that believes in treating Fibromyalgia. Although these doctors diagnosed it one flat out told me that he didn't believe in it as it's own "disease" that something had to be causing it - he just didn't know what!

I was also diagnosed with Lupus with the Fibromyalgia. We're working on treating both I have to be honest that I'm having a hard time dealing with the pain & diagnosis. So I did seek out a counselor to help me work through things - especially the pain aspect. They've helped me work on things I can do to help work through the pain and not allow it to overwhelm me. Easier said than done huh? But, I'm working on it. It's a journey not a race.

Hang in there & do not give up. DO keep a symptom diary & DO keep looking for help.

 
Old 10-19-2005, 09:12 AM   #6
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Re: How is Fibro diagnosed?

Hi Casey924. Regarding fibro---I was diagnosed about 2 years ago by my internist. I have known or suspected that I had fibro since the early 90s when I would be achy all through the day and very tired. My mother has been diagnosed with fibro since 1998 and had already done a lot of research on the subject. Basically, the way I understand it, to be officially documented as having fibro, you need to have at least 11 of 18 "tender points" on your body. They are in specific areas. If you "google" fibro tender points you should be able to pull up a diagram of the areas. In addition to tender points, some other symptons can be pain, depression, fatigue, and even a low-grade fever. Sometimes I feel like I have a fever, but my temperature will be normal. Like you, I have had overwhelming fatigue for at least a decade. Before I was finally diagnosed with fibro, my physician treated me for depression. I tried several different medications over the years--some helped better than others but most made me gain a significant amount of weight and I would take myself off. Finally, since I have been diagnosed and have a great internist, my life is better. I am taking a muscle relaxant at night (I have myofascial pain in my shoulder); I have a prescription for ultracet (a pain medication) that I take as needed. My doctor also put me on an antidepressant (effexor) to help with pain and muscle aches--not for depression per se. These medications definitely helped the painful aspects of fibro however I was still very tired during the day.
After all this, I was diagnosed this summer with ADD---at the age of 44! My doctor prescribed adderrall and I am finally not sleepy at all during the day. This med has been a godsend for me. I can concentrate and I finally have energy during the day while still sleeping fine at night. Actually, my mom whom has fibro was put on Ritalin for fibro systems such as foggy memory and has had the same results as I have. I am sorry that this is so long winded and I hope that I have relayed some info that you will find useful. One other thing--there is an excellent book out there called Fibromyalgia & Chronic Myofascial Pain, A survival Manual by Devin Starlanyl and Mary Ellen Copeland. Dr. Starlanyl actually has fibro and myofascial pain so writes from experience. I refer to this manual a lot!
Good luck!

 
Old 10-19-2005, 11:43 AM   #7
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Casey924 HB User
Re: How is Fibro diagnosed?

Thank you all so much for your responses. I will definitely bring this up to my doctor when I go back in two weeks. I think I'm so dead set on trying to get a diagnosis of something because I'm so tired of hearing that I'm either depressed or that my symptoms are psychosomatic. I just want to scream at them that I would never CHOOSE to feel this way. I'm a senior in college & trying to get in to grad school right now, so this is such a critical time for me & feeling this way day after day is really getting me down. It's good to know I'm not the only one with these feelings. Thank you all again

 
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