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Old 10-02-2008, 10:07 PM   #1
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Katexlove HB User
Over 20 doctors were wrong, I don't have Fibro.

Hey everyone
!

the onset of my pain began when I was only 12 years old. I began feeling very tired and run down, then my joints ached so badly, my back hurt 24/7 (still does) then eventually my muscles ached, I always felt sooo sick, just horrible pain everyday. I had some really odd other symptoms, and had frequent low grade fevers, and bouts of severe stomach issues. Living in this pain is so frightening. My parents are so amazing through all of this, and took me to 5 pediatric rhematologists, and so many other specialists. In the past two and a half years I have been to so many doctors in so many different specialties. My blood tests honestly indicated nothing. Leading EVERY doctor to the conclusion that I had Fibro+Chronic Fatigue. I spent 8 weeks at St. Jude pain clinic, I tried Lyrica, Neronton, thyroid meds from a holistic doctors, accupuncture, anti depressents, blood lettings (seriously lol) massage, excercise. The pain is just so unbearable. I haven't even been able to attend school for the past two and a half years.

What upset me the most was the label, fibromyalgia. I was so ashamed to even tell people I had it because people think it's all in your head, your complaining to much, and I started to doubt my pain. I used to think am I making this up? Waking up and crying to get out of bed because of the pain was an every day occurrence in my life. But to hear a doctor tell me to see a phyciatrist when my knees and hands, wrists, feet were swollen and my muscles ached, and I was suffering so much, angered me. I don't think I had ever been angrier when they told me fibromyalgia. I didn't believe it. I think neither should you.

I went to my mothers orthopedic surgeon (god bless him) and he looked at my hands and was shocked to see the swelling in my joints. He said this isn't fibromyalgia. You have to remember I saw multiple rhematoligst who I went to and they just heard fibro and barely examined me. I also went to an immunologist who told me this wasn't fibro. The orthopedic surgeon referred me to pediatric rhematologist at UCLA. First of all she was the sweetest doctor I had ever met, and she was very troubled by how much pain I was in. She examined me for thirty minutes, which no doctor had done that before. She saw swelling in my fingers, wrists, neck, elbows, knees, ankles, and toes. She diagnosed with Polyarticular Juevenile Rhematiod Arthritis. We talked about what my treatment will be and last week was the first week I took my medication.

I was scared when I was finally diagnosed, but I was also relieved because it felt like someone believed my pain was real, and didn't tell me that "we all have pain", "go see a psychiatrist", "you're not sick". The hardest part with having fibro is there aren't many treatments and people don't understand just how much your suffering.

I'm disappointed at all the doctors who dismissed me and my disease just because I didn't have a positive RA factor, or anything in my blood to indicated I have JRA.

If it's fibromyaglia why is the methotrexate, (the drug my rhematologist put me on) is already allowing me to move my fingers again!?

I wonder if I ever had fibro, or if fibro doesn't exist and we all have something else, or it's a syndrome of soemthing else. But I think doctors are using this as a trashcan diagnosis, which isn't fair to any of you. You're pain is real. Doctors don't know everything, they don't know what causes cancer, and they certainly don't know what causes fibro.

My advice is to never settle for this diagnosis. Please!!! I know what you all are going through, this disease got me so angry and depressed.

If you have any joint pain, and no RA factor see a new rhematologist, keep telling them. If you don't have joint pain keep searching. Because I believe we all are suffering and I honestly don't think doctors think fibro patients are in that much pain.

I wish all of you the best of luck,

-Katie

P.s. I hope you ALL get better. love you all!

Last edited by Administrator; 10-10-2008 at 11:24 PM. Reason: Please do not use all capitals to stress a word, use the appropriate forum features

 
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Old 10-03-2008, 03:36 AM   #2
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DeBeachSiren HB User
Re: Over 20 doctors were wrong, I don't have Fibro.

This letter was amazing . I cried. A lot! I debated answering this because I wasn't sure how to. The bad thing with email things is depending on your mood it changes the way you read these. You might read a letter and picture the person crying, or angry or yelling, ya just don't know. I'm a writer, so I'm taking a stab at it. Soooooooo, read this like I'm a mom hugging you okay?

I'm very sorry that you had awful doctors that were way wrong trying to find out what was wrong with you. Fibro does not cause joint pain, the tender points aren't in the joints. This is why many of us don't do the rheumys, they did me more harm than good treating me for arthritis and the medicines did nothing for me. I was you in reverse kind of. I agree, fibro does seem to be a catch all. With trial and error I found a wonderful primary doctor and an unbelievable pain specialist. He went into pain management because an aunt of his has fibromyalgia and myofascial disease and he wanted to help people not suffer like that. He cries right along with you because of your pain and because of successful results on a procedure that he's done on you. I've gone to him for 10 years or better and I've benefited from him as he went along. I was a guinea pig for him because I had no choice to escape blinding headaches. I have 2 electrodes in my head and wires down my neck into my lower back attached to a battery that stimulates and short curcuits the nerves. He gave me back my life and because of this a lot of people will benefit from it. When he turned it on at the hospital it immediately took my headache away. I cried, he cried, nurses, everyone in there and there were lots of them cried and hugged. These things were put in my head with me awake and had to be taken in and out several times to get them over the area they needed to be in. I had to keep perfectly still and wanted to scream, but I couldn't. I had my hands held and had people giving me reassuring touches the whole time. My doctor kept saying I'm so sorry, I'm so sorry. I had 4 kids with no drugs....I'd have rather given birth than this. Thank heavens I was out right after that for the rest of it, about 4 hours all together from start to finish. There were about 5 days that I thought I'd never get through, but every day it got better. So 5 days worth of awful gave me almost 2 years of a couple bad headaches every month or two. There's not many people with them in their heads. I know that his reasons for sharing his gift is true, my daughter will be a member of his family next week. When I met my soon to be son-in-law he said hey, why don't you go see my cousin ....... because of my aunt, blah, blah, blah. I laughed and said I've been seeing him for years. He is the best on the east coast in pain management and has pioneered a lot of procedures to alleviate pain and I've had many of these things done. He has other doctors in his practice and also has doctors training to go into pain management........if they dismiss your feelings or they dismiss how you feel........they're outta there. So there's good doctors out there that go above and beyond. I've told him several times that he's probably the kindest man I've ever met and do you know what he says. I owe that to my parents, they are wonderful parents and they taught me to be respectful to others.

I am so happy that you are having success with your medications and I wish you continued success sweetie.

Fibro is a disease, not a syndrome. I think most people also have myofascial disease too which causes muscular and neuro pain. They are 2 different diseases. I could live with the fibro, to me the other one is what has messed me up the most. I can understand you wanting us to keep searching for a possible different diagnosis, but the fact is fibromyalgia exists. Think for a minute, you didn't like it when doctors thought your pain was all in your head. In a way I feel that you are telling me the same thing. I am 53 years old and have had this for more years than you are old sweetie. I was thankful for a name to all the symptoms I had that changed all the time after going through years and many types of doctors. I was so relieved to hear, you have fibromyalgia and myofascial syndromes, they weren't diseases then. I'm glad they are diseases, because syndrome doesn't sound like something you would take seriously.

I am just so sorry that you had to go through 3 years of that kind of pain. I've got arthritis in my lower back and a knee, so I can understand a bit of what you have written. The pain is almost unbearable for me at times and I can not even fathom how you feel with it all over and having not been treated properly for it. It is mind-boggling to me how I live in tiny little Delaware, you live in such a huge state and I get such good care.

Write letters to the doctors that misdiagnosed you. Write to the AMA and give the names of the doctors that dismissed what you were telling them. Sometimes insurance companies investigate if you aren't given proper care, believe me when I say that they do. They don't want to be with doctors that aren't good to their patients. Submit a suggestion to a newspaper telling what you went through, can you imagine how that would effect a medical practice. Who knows, maybe others have done these things. If they were that duh on your true disease you know that they are misdiagnosing others. My God, if they can't tell that joint pain could be arthritis, then they shouldn't be in practice. You young lady have a gift for expressing yourself in a letter. You know what? That may be a way that you can get your anger out in a positive way and help others in the process.

Okay, it's almost light out and I need to get some sleep. I'm 4 hours ahead of you. I just couldn't not respond to you. I mulled it over and picked out my words carefully. As young as you are I wanted to share a side of me also. I don't want you to think I'm a nut, haha. You take care of yourself and keep us updated on how you are doing.......even if you don't have it now. You will always be in my heart, I just wish that I could be sitting there giving you a hug for real. Just imagine that I am.
XOXO

Last edited by Administrator; 10-10-2008 at 11:25 PM. Reason: removed identification

 
Old 10-03-2008, 10:53 AM   #3
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1stBlush HB User
Re: Over 20 doctors were wrong, I don't have Fibro.

I love you e, thank God for the positive people on this Board. I just wanted to add, that as far as I know, swelling in not a part of Fibro.

Take care and thank you for posting.

Last edited by Administrator; 10-10-2008 at 11:25 PM.

 
Old 10-04-2008, 07:05 PM   #4
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Re: Over 20 doctors were wrong, I don't have Fibro.

I am so glad you finally found a doc who diagnosed you properly. Shame on all those docs who didn't take notice of your swelling joints, that was a tragedy. RA is a rough one to have for someone so young but what is even worse is that the docs dismissed you without even a look at your joints.

I am considered a difficult patient, not because I give the docs trouble, but because my blood work is not specific for any one disease. I don't have swollen joints but I have very painful ones....with your joints swollen it was a dead giveaway of what was causing your pain.

I thank you for being concerned about all of us with fibro, but I am sure that is really what I have. I have such classic symptoms. Oh I have other problems along with it but I stay on top of my docs for those things too. I am so happy you are getting the treatment you need. Please stay in touch with the board and let us know how you are getting along.

Glojer

Last edited by Administrator; 10-10-2008 at 11:26 PM.

 
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