posted
I've heard frequently people saying that their doctors mistook Lyme for Fibromyalgia, but has anyone ever heard of FM being a symptom of Lyme? Thanks, Allie
Posts: 23 | From Morristown, NJ | Registered: Jun 2011
| IP: Logged |
posted
I'm sorry to hear that. I'm trying to avoid misdiagnosis, too.
I'm in a bit of a pickle- I messed up my neck a few years ago which could have caused FM to develop... but when I was a kid, it happened that my symptoms changed on me to the point where I can't identify pains/problems as Lyme. Very frustrating.
That link is REALLY helpful. Since I was sick as a kid, there was a lot of things I didn't have to think about or know.
Posts: 23 | From Morristown, NJ | Registered: Jun 2011
| IP: Logged |
lymeboy
Unregistered
posted
Fibro is one of those things that they tell you you have when They can't find the real problem. There are a lot of people here that were told they had Fibro, only to find out they had Lyme.
IP: Logged |
posted
I'm sorry to hear that. I'm trying to avoid misdiagnosis, too.
I'm in a bit of a pickle- I messed up my neck a few years ago which could have caused FM to develop... but when I was a kid, it happened that my symptoms changed on me to the point where I can't identify pains/problems as Lyme. Very frustrating.
That link is REALLY helpful. Since I was sick as a kid, there was a lot of things I didn't have to think about or know.
Posts: 23 | From Morristown, NJ | Registered: Jun 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
FM should not really be a diagnosis since it has no known cause....Dr's just give your symptoms a name because they don't know what caused it, and if they give it a name they have given you answers!! right?...so they think!....but leaving you sick forever.....you must find the cause, which is often a chronic Borrelia Burgdorferi infection (lyme).
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Sorry, Lymetoo, my computer decided to post one of my comments multiple times :/
Posts: 23 | From Morristown, NJ | Registered: Jun 2011
| IP: Logged |
i'm glad i didnt listen to the doctors who told me i had FM and CFS, and looked elsewhere for a proper diagnosis!
Posts: 442 | From usa | Registered: Oct 2010
| IP: Logged |
posted
Doyle, I had a known tick bite and can date every symptom. Full-blown fibromyalgia occurred 18 months after the bite for me. If you watch the Lyme film "Under Our Skin," you'll see a lot of people saying they presented with fibromyalgia.
The Lyme bacteria get into the brain within 12 hours of exposure and inflame the nerves and spinal cord fluid early on. They can inflame the entire brain, affecting all body systems that way. They can also corkscrew into tissue anywhere and colonize.
We may or may not test positive for Lyme even though we have it. See http://www.canlyme.com/seronegreasons.html. I did test positive after 25 years, but not everyone does. That's why Lyme-treating doctors treat clinically, by history and symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I was told, years ago, that "You might have a little bit of chronic fatigue," and in the past three years, after going through multiple medical tests to test for everything under the sun, and having every single fibro symptom EXCEPT the tender points (which I guess is a big one for fibro)my doctor was very close to giving me that old "diagnosis of elimination:" fibro and CFS.
The consultation with my new doctor was going to take place, and my G.P. actually said her next step, if this new doctor had no answers, was to diagnose me with fibro and CFS and send me to another specialist for the fibro. (Rheumy?).
I felt like, once again, I was being given up on, and that she was just picking names out of a hat that were the closest in line to only TWO of my symptoms (never mind the multiple other odd symptoms and crazy and just as strange test results) just so she could finally give up on me (after THREE years!).
The doctor who agreed to see me for a consultation only, diagnosed my Lyme Disease in the first five minutes of meeting her. Rattling off my list of symptoms, she didn't even let me get very far down the line, and she said, "Lyme Disease." I was stunned for so many reasons which I will explain another time, but there it was.
An answer.
After this, I thought of one of my closest online friends. I met her in a social forum some five to six years ago now, and we hit it off, became email friends, talk on the phone once in a while, have a lot in common, etc.
She had suffered with fibro, CFS, and many other "issues" for years and years. I did not want to start being a person who saw Lyme in everyone she knew, but I strongly suspected it in her, from the way she described her symptoms, and with the more she shared with me.
At first she did not want to hear it. She said, "Oh, I don't think I can deal with one more thing right now!" I told her, well maybe it is NOT Lyme, and then it will be ruled out. And if it is, it won't be "one more thing," but an answer to all the symptoms you put in the wrong box.
And, sure enough. She was tested and she has Lyme. Lyme has turned her life upside down for many years now, but no one thought to look beyond her fibro and her CFS, because they fit so neatly in that little box, even when she had many other issues, strange test results like I did, and on and on.
I am beginning to think that it would not hurt anyone with CFS and/or Fibro to at least be tested and to at least rule Lyme out, because the symptoms are SO much the same. It certainly could not hurt.
And something sad and maddening, but I am sorry, but I had to laugh: when I was in the hospital having my surgery in December, the pain team, the doctor, the nurses, all kept referring to my "fibro." NONE would say, "Lyme Disease!" At first it upset me, but then I just had to laugh at the craziness of it all, because I was MUCH to sick, in pain, and out of it from my meds to try to explain, to tell the story over and over, and to take up my time educating medical professions. But it was as if they are AFRAID to say, "Lyme Disease!" This is Minnesota, for heaven's sake! What?
That was one of those twilight zone moments, where I think, "Is this really happening?" lol Just the strangest, surreal feeling as they go on and on about what is best with my "fibro." Unreal.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
| IP: Logged |
posted
Um, didn't mention earlier that my fibro of 25 years, with all kinds of treatments thrown at it unsuccessfully, went away after one week of oral clindamycin, 150mg every 6 hours.
That's what they had told me to do for a prior finger infection, so I tried it for my new diagnosis, and it worked. I am still on it, at 150mg/day.
We're all different, so each of us has to find the meds that will work for us.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Was worried about you!!
Printer-friendly view of this topic