Every Day With Fibromyalgia

United States
April 20, 2008 11:05am CST
I was diagnosed with Fibromyalgia 10+ years ago,before it became Fibromyalgia. In fact ,they didn't even know there was a disease with that name. I had wonderful doctors that were willing to first: believe that I was having all these crazy symptoms and so much pain and second: willing to "use me as a lab rat" to find out what I had or at least what I didn't have. You see back then they didn't have the triggr point test like they now have, so I was checked for everything. My regular Dr. actually referred me to a pain Dr. and they worked together to figure me out.lol. I had blood tests, Cat scans because of headaches , I has a heart monitor put on and had to do a stress test, I also had a bone scan ,a pelvic, a mammogram, a (can't remeber the name of the test) but they held me flat on a table and stuck long needles into my muscles and moved them around to different area while watching a machine that the needle was hooked up to:whew ,I will never let anyone come near me with that machine ever again!! After all the testing coming back negative, believe me,I was frustrated. My symptoms were getting worse,my pain Dr. was researching the problems that I had (trying to put them together, at first they thought I had MS because I would lose control of my right leg at times. Then one day I went into my pain Dr's office for my monthly recheck and he came in, handed me some papers from a medical magazine and said " Valerie, I want you to read this,tell me if this sounds like what your experiencing,and if it is,then there's a test I can do to make sure this is it. Well I sat there and read. As I read about this disease myofacial syndrome (that's what it was called back then) I couldn't believe it. I was reading about me. I was so excited ,when he came back in I said "Yes, This is it!!" The test he did was the trigger point test.At that time he followed instructions from this medical magazine. At that time there was thought to be 18 trigger points on your body from head to toe. I had them all. I was so excited to actually know what was wrong (God I thought I was going crazy!) excited until he told me that there was no cure. NO CURE. Only palliative treatment,which he immediatly switched my meds to some heavy duty stuff,and it helped immensely. But I just couldn't believe there was no cure for this. I would like to hear from any of you out there how and when did you find out you had Fibromyalgia. And then I would like to further this discussion. That was ten years ago. There is a lot that has happened in ten years. Valerie
2 people like this
5 responses
• United States
11 Jun 08
You are certainly correct. Until 2000, it took about 7 to 10 years on average, and dozens of tries with different doctors, to even get a diagnosis, then, like you said, there was no useful help. If you read the Discoveries at www.FibroFix.com you will understand how the revolution in Fibromyalgia started in 2000. Unfortunately we also inadvertently started an avalanche of commercial greed. Once everyone knew the comprehensive list of symtoms, that it was clearly an illness, and the large number of people who have it, some companies went wild to try to sell something to all of us. No one even questioned what Tender Points are. They are where the arteries branch from smaller to smaller throughout the body. More importantly, they are where arterial capillaries produce serous fluid. (all the clear fluid we think of as lymph, saliva, interstitial fluid, etc.) Greed and misinformation are the two greatest obstacles we face in getting effective relief to the millions of us with FMS. People who want your money are deliberately lying about Fibromyalgia. www.FibroFix.com is an all free site. If you read every word of the site, you will know almost everything we know about FMS. It tells how to Test, Diagnose and Successfully Treat all symptoms using over-the-counter or prescription meds combined with trick and tips. The world says it can't be done, but we've been doing it for over 8 years. Nothing for sale. Confidential free help by email or phone. We ask nothing in return. Anne
• United States
29 Apr 08
I haven't been diagnosed yet, but my doc is taking the steps to do so. She said there is not actual test to confirm. She did the point check thing, I think there are more than 18 points, but every one of them hurt badly. She asked me a long list of questions, then said we needed to weed out some other possibilities before diagnosing. She's treating depression, which seems to be helping alittle. She also switched my meds I take for arthritis, which isn't helping, but allowing me more control. And has started me on some things for my digestive issues. I still feel at a loss, since nothing seems to be doing the trick. And I feel like a complainer by going back into see her every month, saying, its not working. I wish they would come out with a sure test, that would make it a quicker diagnosis. I've talked to several people now that suffer with this condition, and have been educating myself on it as well. I am sure this is what is going on, and want to tell my doc to just skip all this other stuff. But she says other things could be going on as well, and we don't want to miss anything and wrongly diagnose something there could be a better treatment or cure for. I must say, at first I was a little encouraged to finally have found a doc who would listen to me. But I am back at the discouraged point, because I haven't seen any progress in two months.
@Amberina (1541)
• United States
27 Apr 08
I have had Fibro since 1999 and I even had it under control, it was great to be feeling like my old self for about a year. Then I got into a car accident...and it came back with like a mad wet cat. I tell you I have never felt this bad, luckily I will be seeing a doctor soon about it I will have health coverage in a few weeks. My mom has it as well and her doctor is giving her Lyrica and she said for me to get on it too it's for Fibro people and I hear it helps a lot I hope it helps me.
@patgalca (15910)
• Orangeville, Ontario
21 Apr 08
I am one of the lucky ones as I was diagnosed almost immediately, 11 years ago. The word Fibromyalgia did exist back then. Before that it was called Fibrositis. I never met a doctor who didn't believe in this illness, but they all are in agreement as the the nature of the illness and treatments. Unfortunately every individual is different so what works for one person does not necessarily work for another. I will say that fibromites are low in magnesium and should be taking magnesium supplements. Exercise is important to keep muscles from atrophying, to keep the heart rate up and the spirit. I spent five years lying around feeling sorry for myself until I learned about Mag-Citrate (Magnesium/Malic Acid) which eased my pain considerably. I also started exercising, slowly at first - walking around the block and then increasing the distance until I was up to 3 miles in an hour. I haven't been walking much lately because I've been so busy and I have every intention of getting back to it. I can honestly say I have my fibro in control in that I control it, it doesn't control me. I know my limitations and pace myself accordingly. Unfortunately things like stress and the weather are a little bit out of our control and we just have to learn to deal. Take it easy when we have to. I have been running a support group in my town for several years and have met with many different forms of treatments. I am well read on fibromyalgia. No, there is no cure so don't waste your money on those companies who claim they have one. A positive attitude, learning everything you can, and knowing your own limitations is the best thing you can do for yourself.
@emeraldisle (13143)
• United States
20 Apr 08
I first heard about Fibro from a friend of mine who runs a support group in West Virginia. She had me check out information on it and the symptoms. Reading them I was like "Oh My God..that's me!" Like you I thought maybe I was going crazy. I couldn't figure it out. Yes some I could put down to other problems I had but not all of it. Finding out that there was a name for it and that it was an actual disease helped. Since then I've had several doctors ask if I was diagnosed with it so I finally asked my primary why he doesn't just diagnose, according to him I have to go to a rheumatologist to have it diagnosed (not something I can afford) but he did say yes you have it. I just can't diagnose it. He treats me for it though for now while I fight with social security to get it and thus medicare so I can get to the right doctors. He has me on darvocet, I'm allergic to so many meds it's the only pain medication he can give me. It does make things more bearable but there are still times when it doesn't touch the pain. Most of it I can function through but I get the pain with the skin where anything touching it causes massive pain so putting on a shirt can hurt and forget wearing a bra on these days. Trying to explain that pain to someone who has never had it isn't easy so I hope I did it ok here. I'll tell you though finding out that there was a name for it, that I wasn't going crazy and that others have it really helped. It at least let me know I wasn't alone. It may not be curable but at least they knew of some ways to help.