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At the onset- an explosion or landslide?
8 Replies
solanadelfina - March 16

My mom and I are starting to wonder whether my case may actually be Lyme disease in disguise. Many of my fibro symptoms are ones that Lyme can imitate (periodically low blood sugar that everyone swears can't be hypoglycemia, headaches, dizziness,) etc. but one of my suspicions lies in the way my illness began. If anyone has had a beginning like this, I would be most grateful to know.

I started having just wrist pain when I was sixteen. It would last a few weeks, then go away for months. No one knew what it was after the round of doctors. I stopped orchestra for a year, problem solved. Next year, it spread to my fingers and elbows for a few weeks, then would go away for months.

This pattern continued for EIGHT YEARS as it would slowly spread to one more joint at a time. It didn't become full-blown and constant until my twenty-fourth birthday last August. Though I'd have occasional headaches or dizzy spells before, it was nothing like this. When I had one of my spells, I'd go to the chiropractor and the problem would be solved. Not anymore.

Has anyone had their fibro take so long to get a foothold and get progressively worse like this, or could it be Lyme? BTW, I live in MN, one of the most infested states, and spent a lot of hours in forested/bog areas in college during ecology labs.

My thanks, and God bless.


solanadelfina - March 16

Oh, and I forgot to add that the rheumy who diagnosed me wasn't a person whose thoughts I really trust. Her sage advice was to move out of my parents' house and go volunteer in another country in two weeks or I'd never be emotionally mature. Yeah, I wish I was kidding.


axxie - March 17

You know you could be on something here, have you been tested and if yes, do you trust the lab?

Like I trust a doctor who give advice like move out of your parents house and volunteer. Another naysayer, don't know much about pain and what it entitles to the patient. I got the same female doctor who told me, that if I didn't go back to work immediately, even in pain, that I ran the risk of catching arthristis.


solanadelfina - March 17

Sheesh, that's ridiculous. Then again, book smarts don't always equal common sense.

I believe I was tested for it once, (I've had so many blood tests done that I'm suspecting that my clinic has a blood debt to a vampire mafia :) )and it was negative. However, all the research I'm doing suggests that false negatives are quite common. The next step is going to see another doc for a fresh pair of eyes, and try to get referred to a Lyme specialist and the more specific tests done.

I am getting a little worried, since my pains have been getting worse lately even with the tramadol, but that could be due to hormones and the glorious coming of spring. If it's still fibro, it's not wrecking anything, and if it is indeed Lyme, the wheels are already in motion.

Thanks for your response!


jacobea - March 19

The pain soon spread to my fingers, wrists and elbows, and everywhere else it seems, when i was fifteen. The doctor said it was just obesity causing the pain (so I have fat eyelids?!) and I wasn't diagnosed until early 2008.

Lyme was never mentioned, and where I live, i am not sure it is even likely to catch it (British, concrete jungle, not much grass or plant life in general). It is true that tests can often come out wrong, so if you're concerned, it might be worth asking for a re-test, but if it comes out double negative, I'd stay with the fibro diagnosis (least it's something you can grasp onto).

You might just have been one of the lucky ones with a slow progression, instead of a fast one. Doubt that's much of a comfort though!


belle1329 - March 19

I was just diagnosed in Oct. I have been having pain and no sleep for about a year, the year before that I was having alot of wrist pain, went to a nuerologist and he said I had a bit of carpal tunnell, I had OT/PT for about 6mths, it seemed to get better. Then 6mths later,on and off I had pain and then in Feb 08, I had pain all thru my body felt like I had the flu and very tired, it lingered for months with other symptoms, Went to the Drs in Dec 09 , was referred to Rheumatologist and then fibor was diagonosed. I have had a lot of pain on and off for the past 3mths and now am starting to feel pain again. I went off sleeping pillthat were making me crazy,but I do feel pain coming back not as bad, as last flare up and still not sleeping well, but now beginning to wonder is it reallyFibro??? anyone else start like this?


Kristina17 - October 5

Hi, my story is almost identical!!! I was 16 as well when I started to notice a lot of wrist pain in winter, especially while playing the piano. It got worse and worse for the next two years to the point where it became painful to brush my hair. Chiro and physio didn't help and not tests showed anything. The pain progressed to ankles, shoulders and arms as well and now I have lower back issues and so so so much more. It's been 8 years now, I too am 24.

I was diagnosed with fibromyalgia only a month ago but will be getting the results for all my other tests tomorrow to see if there is anything else going on. They told me for years that it was simply RSI from playing the piano too much and they couldn't explain anything else but it's getting worse. I'll let you know what my test results reveal. Hope you are going well.

Take care and God Bless


bwelladjusted - October 6

Hmmm. Interesting. I live in Illinois, and I've never knowingly had a tick on me, but it's possible. It seemed like I was tested for everything, but I don't know if Lyme's was one of them. My onset was both slow and fast. (Yeah, that made sense!) I started with chronic headaches when I was thirteen, but a chiropractor fixed that. At the same time, my right knee was hurting. I tried several doctors, no one found anything wrong. Then it was my left knee. My back would get tight after a couple hours of shopping, too. Soon it was spreading to my ankles, then finally wrists. So in that way it was gradually worsening. But then it seemed like I just hit a breaking point. I was out driving in a HORRIBLE downpour at the end of Feb.(I was just hoping I made it home alive!) and everything was aching in me. I thought that night it was just the stress from the rough drive, plus the cold, wet night. But the pain just got worse and worse. The next morning I could hardly hold the curling iron to get ready for work. I was working as a sales associate at the time, and by the time only a four hour shift was over, I was sobbing the whole way home. Two days later, I couldn't even get out of bed for the intense pain and utter exhaustion. Since then I have had better days (not good, but better), and really bad days. But it has never gone away.
It's interesting to see how many other people have had this come on gradually. Especially so many of us so young. I'm only 19 (18 when I was diagnosed), and have been struggling with chronic pain of some sort since thirteen. I honestly cannot remember what it feels like to be completely well. I just keep looking for answers...something causes otherwise healthy teenagers to just physically break down! Someday I do believe we'll find a cause...and maybe then a cure!
Take care and stay hopeful!


axxie - October 6

I got tested several times for lyme diseases, because I also thought that the way my fibro started. But different places for testing with different labs make mine almost a sure thing, that I do not have it.

My pain did not start the same way, but know that one my good friends, had to stop playing her violin because of the pain. She does not have fibro, but I can tell you, as a profesional violinist who has travelled with the best of the best, she has suffered injuries from playing. Some days her pain was so unbearable that she even tried to commit suicide (that was in her younger time). Now a respected violists, she has developed many ways to cope with her pain, still has of today.

Get tested and see what the outcome is, if you are unhappy with the result, get tested at another clinic and if two says you do not have it, then I guess you can let that idea go.

Good luck.



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