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4 Replies
kcoll710 - March 6

10 plus years ago I spent a year of my life visting specialist after specialist. I was finally diagnosed with Lymes Disease, treated intravenously and symptoms continued. Not uncommon but the specialist was suspect if that was what I truly had. My primary care physician then diagnosed me with Fibromyalgia. At this point I was tired of doctors and had found a way to manage through the episodes. I figured out what triggered episodes and what to do when they happened. Recently I found my way back to the same doctor. He asked me if I ever found a support group for Fibromyalgia. I had not. Being confused and tired by all that is going on with me, I found this website tonight. This has brought a tear to my eye. Not uncommon either as being tired tends to do that to me :) but this is absolutely amazing! Everything I have been going through is here! I wish I found you years ago! So many things I've gone to other doctors for with no answers is all right here.

I do have a question though. About 6 months ago I started going to the gym. Not an easy thing to do as you can all imagine but I'm finding that my muscle strength is taking a tremendous amount of time to increase. I can only do minimums on just about anything... still. The exercise has helped some and I have gotten over the uneasiness of not being near the level of other people. When on the bicycle my heart rate soars, which is fine because I can't do much anyway and it keeps me from over doing it but it is getting quite frustrating that the progress is sooooo incredibly slow. It seems my stamina now exceeds what any muscle or joint can do. I want to do more but my body won't let me. What experience do you have with exercise and muscle weakness? Is there a good website for those with Fibromyalgia and creating an exercise routine?


January - March 6

Welcome to the Club. Could I ask how you got diagnosed with Lyme Disease? I've been told by some people that fibromyalgia IS Lyme Disease! I had a bulls eye rash years ago, but tested negative. Apparently there are a bunch of clinics for treating this now.

I've been reading about mycoplasma - and its possible implication in Lyme and fibro. But Lyme is a specific spirochete that is hard to properly diagnose - depending on where it is in its life cycle, I think…?? So it might take several tests to come up with a positive one? Was that your experience? Also, I've read the treatment for Lyme is 6 mos. to 2 years of doxycycline therapy. (that sounds nasty) Does this line up with what you've been thru?

Anyway - glad you found this site. It's got such a wide range of people with many different views and approaches. I'm sure you will get some good support here. On the right is a special area for fibro exercises. (Not my area of expertise, but good for you that you are exercising!)


solanadelfina - March 6

Be patient with yourself and your body, even though it can be frustrating. When I was first diagnosed, I worked in a bookstore and for a while could only carry very small piles and had to always use a cart. I had to stop taking out the recycling bin (my favorite job) because it was too heavy even a quarter full. But it got better over time, to where I could carry equally sized piles again and was able to take out a full load.

For exercise, I do range of motion exercises every morning and evening. I also love to dance, (especially bellydance and a little hula), do Pilates and yoga, some light weight-training, etc. It can be hard when your mind wants to do something and your body says 'no way', but we can get some of our power back.


kcoll710 - March 6

Lymes disease was difficult to diagnose. I grew up in California then moved to Oregon. I never had the bullseye rash (that I remember) but had the ticks. Because the symptoms were being diagnosed in Oregon they didn't believe it could possibly be lymes, hence the amount of time it took to diagnose. I went to a specialist who found the spirokeets in my blood. Because I was in the late stages they did an iv to my heart and we injected shots for a month. We then took another test and the specialist said he didn't see any dead spirokeets floating in my blood so he was suspect. He was not a believer in Lymes to begin with but we had tested for so many other things he was willing to give it a try. I went back to my primary care physician. He did his research and said that Fibromyalgia often follow Lymes Disease so regardless of whether I had the Lymes or not I now had Fybromyalgia. Early on I read alot of books on Lymes and one thing that stuck out (and I believe this to be true due to everything I went through) is the spirokeets can hide in your organs. I believe mine hid in my liver. I had some very odd liver tests. My doctor just knew I had a drinking problem and I didn't drink. This website fits me to a T so whether lymes and fibromyalgia are one in the same, I don't know but I do think one leads to another. And if you have had it for any amount of time, the injections or medicine doesn't get rid of the symptoms - or didn't in my case. It could have slowed the progress I suppose.


January - March 6

solana... good for you with the exercise! Keep it up! Wish I could still do the hula! Those were the days!

kcoll… thanks for answering my questions. Ugh, the Lyme treatment does not sound like fun. What you said lines up with what I've read. Lymes Disease exists (I remember years ago when a whole audience of people was on a talk show trying to convince the establishment that it was real). OK, it's really here, but now what. There really is no good diagnosis and no good treatment except, as I've heard, up to 2 years of antibiotic therapy. That's guaranteed to kill off a few good bacteria in your body! LOL! You don't drink and the dr. attributes your bad liver tests to your drinking.

How did you feel when you were getting the antibiotic therapy to your heart? Did you feel better or worse?

If you're up to it, google the mycoplasma research by the Nicholsons. Interesting. Mycoplasma "hides" inside the body's cells and goes through different life cycle phases. Very hard to find and treat.

I guess the only thing to be done is try to support your immune system the best you can.

Take care.



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