Anyone else think Lyme is the underlying cause of your Fibro?

Hello everyone,

I'm fairly new so I'll try to be brief but still give a little background. I'm 32 and my main issues right now are pain and fatigue. I was not surprised when my Rheumy recently diagnosed me with Fibro. I was, however, surprised when the nurse called me a couple months ago to say, "You have Lyme disease and we need to run more tests to determine which course of antibiotics you'll need".

Well, after more blood work I got a call saying the Western Blot was negative, and that I actually do not have Lyme disease.

Luckily after being told I DID have it I had done my own research and learned that the western blot would most likely be negative.

Long story short, the official diagnosis from the Rheum ended up being Fibromyalgia, Depression, Vitamin D Deficiency and Hypothyroidism.

I started meds to treat, or at least manage, each of these conditions almost 2 months ago and I am showing no signs of improvement.

My most troubling symptom is the pain...constant, chronic, debilitating pain. Sometimes pain meds provide relief, other times nothing seems to help. The fatigue is pretty rough too. I'm applying for disability for the second time, but I'm not sure how that's going to go. Any advice on that subject is also appreciated! :)

I had started taking warm baths to relieve the aches, but afterwards I get terrible rashes, and my symptoms get worse for a few days (more pain, terrible migraines, neck pain, etc). so I now stick to a quick shower, and I even dread that because my skin turns red and blotchy. But if I soak, the aftermath lasts a lot longer.

So, I just wanted to see if anyone on this board can relate. I'm also active in the Lyme forum, but I'm curious to know if anyone with Fibro has any experience with Lyme disease.

I have an appointment with a "Lyme Literate" doctor on Feb. 6th. Until then I'm only being treated for the conditions listed above, and none of the treatments are helping.

Any responses are appreciated! :)

My dad thinks I may have Lyme disease instead of fibro, and wants me to tell my doctor I insist I get tested.

I am currently being worked up for Lyme disease and I am seeing a Lyme literate MD who thinks I do have it. I did not test positive according to the CDC, but I was pos. for one band that is specific to lyme so they sent my labs to a lab in CA that is lyme specific and will test for associated lyme diseases. I have an appt. Dec. 6 and should get some more answers. The only problem with that is the treatment is far worse than our current symptoms and the antibiotic tx goes on for a long time but I am hoping that eventually that it could be cured. But with fibro, it just seems like this horrible pain that you can't escape will go on for the rest of my life. Sometimes, I just can't see how I am going to do this forever. I need a break...

Thanks Joy! I had one a couple months ago. What does the ANA determine, is it a sign of Fibro? It was my understanding the my Rheumy suspected Lupus due to the positive ANA, but he wasn't clear and I kind of assumed. He ruled Lupus out with more tests.

I have heard that it is a sign of an autoimmune issue, but I've read conflicting info on whether or not it's a sign of Fibro. I've also heard one positive means always positive, but also that there can be false positives? Needless to say I am very confused on the subject!


Shadow69,

I can completely related. For me, I have a terrible time in the mornings. I wake up everyday in tears and usually angry because I'm in so much pain. I have an 18 month old and he's the only thing that gets me out of bed. I keep hoping the CDC will do something. This is no way to live. I'm glad you have an appt with an LLMD. Please keep me posted! Are you on the Lyme forum at all? It is an amazing group. So many good people that are knowledgable, and very encouraging!

I have to admit, I'm terrified to begin treatment. I don't know how I'll take care of my son if I have to get worse before I get better. I already wake up everyday feeling like I have the worst flu of my life.

Shadow69, are you able to work? I have been trying to get on Disability because I haven't been able to work since my son was born. But since I can't include Lyme disease as one my conditions (thanks to the CDC), I can't get them to understand that I really am sick enough to be out if work. What a nightmare. I never knew someone could be this sick and not have help. In fact, until I finally got to see a rheum (it took over a year after I got really sick because I had no insurance), all the doctors I saw said there was nothing wrong with me, or that I had just had a baby and that I would get better with time. My current family doctor still thinks its because I "just had a baby". That was 18 months ago!


Anyway, sorry for my rant. I'd love to hear more from everyone, thank you for taking the time to offer your input!

ANA is used to determine autoimmune diseases like Lupus or MTCD and many others.
It depends on the patterns of the ANA which type it is. Mine was Speckled pattern.
Go to Lupus.org or lupus.com and you will see the list of 11 indicators of Lupus. If you have 5 or more of them then a good rheumy will diagnose lupus. ANA is only one of the 11 indicators.

Rori,

My dad thinks I have Lyme because my aunt told him about a couple people with similar symptoms of mine that have recently been diagnosed with Lyme disease. I am pretty positive I don't have Lyme disease, I didn't tell my family all of the lovely things that go along with fibro I just told them chronic pain and chronic fatigue and if they wanted to know more to look it up. It gets really tiring having to explain and explain and explain what you have and how your feel to everyone you know.

I know if I don't get tested for Lyme I'll never hear the end of it. I think he hopes I have that instead because it's curable.