posted
After about 12 years of being very sick, I was diagnosed with FM.
Although some of my symptoms were "more" than "typical" FM.
Then, some years later it turned neuro and I was still misdiagnosed with a few other things.
My LLMD said that the Lyme is probably what triggered the FM in me at such an early age. Also thought I may have been "reinfected" after the FM diagnoses.
I have done so much research on it, (and Lyme after I was diagnosed last year). So many "could be's"
My new LLMD, who I don't see for another month, knows a lot about them and I will be sure to find out more.
I was just curious who else has had similar diagnoses.
Posts: 240 | From MA | Registered: Nov 2006
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posted
I was ill with undiagnosed symptoms for a few years before I got a fibromyalgia diagnosis. I was just feeling like I had the flu all the time plus I had all the trigger-point pain.
I was able to continue to work, although I had to give up everything else. To work, to bed, to work, to bed, etc.
In 1995, I was driving to work early in the morning and was ready to cross a bridge over a lake. Suddenly, I was unable to hold my arms up on the steering wheel. I almost wrecked my car.
That was the last day I worked. The onset of my symptoms came on gradually until I had this very acute episode.
My PCP sent me to a rheumatologist who gave me a short exam and pronouced that I had fibromyalgia. He told me that over 1/4 of his new patients had this diagnosis. He also said my PCP could treat this.
The rheumy was blunt and dismissive. I remember crying uncontrollably after I left his office. But I DID have a diagnosis. I had never heard of fibro.
A friend built me a computer and I began doing research about fibro. I sure fit the symptom list. So I accepted the diagnosis. I joined many fibro sites and chatted with lots of people.
I still stay in touch with people I met on the net who had the fibro diagnosis. I got so ill early on that I was mostly bed-ridden, could not drive and was house-bound for at least 2 years.
I had lots of stress during this time. My family and I had to sell our house and my car because I no longer provided any income. Moving to a new house was hard. Harder was losing my husband. It's complicated but I believe my illness changed me so much that I was certainly not the person he married.
After another year I slowly started improving. I got on SSD. I moved into yet another house which was cheaper. I was alone and limited the amount of sensory stimulation coming in. The rest of my family didn't really understand my illness and I was alone with it except the support of the fibro friends.
Then my son became ill at about age 18. My daughter followed in her late 20's. We all had a fibro diagnosis. Later my two grandsons became sick.
My daughter began researching all over the net. She also met some people with Lyme. So did I. In looking back, I had been bitten by ticks most of my life every summer. We had lived in PA for a while and also FL. We had lived in rural areas of TN.
My daughter ordered a Western Blot for her boys. They both had positive bands, though not CDC positive. I found a LLMD out of state and had the WB test. I was positive on it, but not CDC positive. My daughter is awaiting her test results.
A Lyme diagnosis these days is a double-edged sword. I can find no one to treat me because of the new guidelines. There are no longer any LLMD's in TN. We are holding our breaths to see what will happen with Dr. J in Connecticut because of the boys.
So, the long answer to your question is YES, I have been diagnosed with fibro but I also have a long list of other diagnoses as more and more symptoms emerged. I am still very ill.
I personally know people with Lyme who have improved to the point of feeling mostly normal. They have their lives back and can work and do things that most people take for granted.
Having a Lyme diagnosis vs. fibromyalgia means that there is treatment that can eliminate symptoms rather than merely treat each one separately.
Over the past couple of years I have gotten much sicker. So has my daughter. We are living with so much distress because we have not been able to get treatment and start on the road to recovery.
I believe that Lyme diagnosis and treatment will eventually be the norm when patients present with all the Lyme symptoms. I am not sure that will happen in time for me.
I have been so sick for so long and am reaching the age when I don't know how I could tolerate getting a lot sicker to get better. But I come here to learn and to do what I can to advocate and educate.
I want treatment for my daughter, my son and my grandsons. I want them to have treatment that will enable them to lead normal lives. That's the main reason I hang on......to see the day when they will get well.
Sorry for the long post, but it sure felt good to get some of this off my chest. I am so grateful for this site and for the wonderful, caring people here who give such amazing support.
I stop by daily and always learn something. The success stories warm my heart and give me hope for my family. Through the efforts of so many I just know that someday soon everyone with Lyme will have the opportunity, the RIGHT, to get the treatment they need and deserve!
I hope my story helps someone.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Aniek
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Member # 5374
posted
I was diagnosed with fibromyalgia a few months before the Lyme diagnosis. I suspected Lyme because I had a bull's eye rash when I was 12 and all my symptoms started 18 months later.
So I pursued an LLMD in order to rule it out. I really thought that's what I was doing, so I could accept the fibro diagnosis.
I've seen two physical therapists and a rheumatologist, apart from my LLMD, who told me I don't have typical fibro symptoms. The rheumie was determined it wasn't Lyme...he had no idea what it really was...but he also said not fibro.
I think many doctors are quick to jump to a fibro diagnosis when somebody has pain and there is no explanation.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I had so many different diagnoses too, back to when I was about 10. The first 12 years were very hard.
Mostly because I felt so alone and CRAZY!
(It was another 10 years after the FM diagnoses that they diagnosed Lyme)
Then my Mom, Dad and rest of my family started to get sick.
My Mom was diagnosed with Fibro first, and told me to see the doctor. As much as I didn't want her sick, it was nice that she understood what I had been going through for so long.
I seemed to get every illness growing up. From the normal, to the "how did you get that??"
I KNOW my mother has Lyme too. She even had the bulls eye a long time ago. But, the test she had came up negative.
Sometimes the one thing that keeps me going to doctors and fighting is that I want answers for her and the rest of my family.
I had Mono when I was 13, and blamed that most of my life.
Going through old medical records, I am amazed with what they came up with, and how they would brush me off when they couldn't figure it out.
All the tests, surgeries, meds...
Now I see, that almost ALL of everything I have or had can be traced back to the Lyme.
Posts: 240 | From MA | Registered: Nov 2006
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posted
yep, started with a car accident, just could not recover from. Finally was labeled with FMS, and given my pain pills and sleeping pills, which I was one for years. Finally my hormones got so depleated I made an appointment with the family Naturopath. After testing and a RX for five different hormones, he asked me how I was feeling, ( I'm sure I looked like 10 miles of bad road) I said, 'oh I think my FMS is getting worse, and the worst part is I don't think it is even a real disease. I mean what is the pathogen? ' He said, its not a real disease, its a syndrome, just a collection of symptoms. I said, well maybe it just seems worse, cause I fall all the time. He said you fall? I said yeah, and for no real reason most of the time. He then said I'm testing you for Lyme. Then more blood drawn, and sent off to Florida, three days later, the conformation, complete with color photos of what they found. I have the cyst form. I'm sure I have had if for years. And I have never had a tick bite, or the bullseye rash. Did live in SanDiego for seven years, the flea capital of the world, and was eaten alive.
Am much better now, did have a relapse (Over did things, and was out of my Samento, Collidial Silver & Ambrotose, forgot to order, and thought I had back-ups) in Sept. 06, but am recovering. The brain fog is the worst. Thank the Lord for GABA. Want to try the Rife Machine, there is a facility 45 mins away. Anyone out there use one of these machines?
Anyone out there dealing with "Lyme eye"?
Posts: 3 | From Keizer, Oregon | Registered: Dec 2006
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posted
I was diagnosed with FM after about 5 years of being in pain and searching for answers. About a year later, I saw an LLMD and got the Lyme diagnosis.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Yes both, since 1990 to 200/4.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
fibromyalgia was among my many diagnoses and is completely gone thank goodness*)*!)!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I knew I got bitten by a tick, but did not know anything about lyme disease.
I ended up with a flu in the summer. Got better. More flu like symptoms on and off. Went from doctor to doctor. No answer.
Saw rhemotologist who said I had fibro. I still refused to believe in that diagnosis. Went from doctor to doctor again. Finally had to accept that I had fibro.
Nobody ever tested me for lyme disease. God how I wish I would have asked.
When different symptoms started appearing 3 years ago I thought I was going nuts.
About a year or so ago I saw an article about lyme disease in our local paper and after reading knew what I had.
Went to my doctor and asked for a lyme test and sure enough it was negative. Thankfully she knew how to read a lyme test and see positive bands.
She treated me for a little while and then sent me to a llmd.
Hey, at least I know I'm not going crazy.
I am crazy though.
karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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Well....everyone with chronic Lyme has the cyst form also.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My PCP tried to FM me, but I told her to FO & went to an LLMD.
Lyme & Babs, so far.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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CFS, FM, IBS,..... I had a positive ANA.... so they thought lupus.
It was lyme hiding out.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
CFS and FM dx in December 2001. Finally Lyme dx in April 2006. Trace symptoms back to at latest 1964, probably before that. Lived in OK at the time.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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