Fibromyalgia and tick-bourne illnesses

United States
March 16, 2007 8:58am CST
I have been doing a lot of research this morning on Lyme Disease, and I came across this bit on a website: "Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness." You would not believe how many symptoms of "late stage" Lyme Disease are the same as those suffered by people who have been diagnosed with fibromyalgia! http://ottermusic.com/lyme/articles/factors.html Now of course I'm not suggesting people with fibro all have Lyme Disease (or another tick-related illness). However, I'm curious if any of you can think back to your various tests that you had done.. were you tested for Lyme Disease? Do you recall when your major symptoms started, and if you had been exposed to the outdoors sometime (close) prior to that? Apparently not even 50% of people infected with Lyme Disease remember being bit or seeing a mark or rash. Which is interesting. Check out this map of where infected ticks are most prevalent: http://www.aldf.com/usmap.shtml Could you have been in or around these areas about the time you started noticing your health began to deteriorate? *For the record, my family used to go camping ALL the time, and several in my family are diagnosed with Fibro. Also, my problems seemed to start back in '97-'98, while I was going to school in a "moderate risk zone" for infection. (Not to mention I'd gone camping just before that). I do not recall any bite or rash, though.
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6 responses
18 Mar 07
I am really interested in this as I have suffered from Fibromyalgia and CFIDS for 16 years. I heard about the incidence of misdiagnosis amongst those suffering from these types of diseases when they were actually suffering from Lyme Disease and I looked into it. I found a lot of people online who had Lyme all the time, but had been told that they were suffering with something else. I lived for years opposite a field which had sheep in it and regularly walked in it with our dog. I know that local cats (including ours) used to get ticks on them from there every so often. I asked my doctor if I had been tested for it and he said no, because it does not exist in the UK! I knew this is wrong and challenged him on it... he then thought about it and admitted I am right. I asked him to look into it but never heard back from him about it. I would love to get tested for it as I want to know whether to rule it out or not. Unfortunately, I do not have the money to pay for the tests and the specialist doctor.
• United States
19 Mar 07
As I may have mentioned, there are about a 1/2 dozen people in my family who have been diagnosed with Fibro. I'm not sure how long they have all had their symptoms.. but one of them (an aunt) told me "Yes, we have fibro running rampant in our family". I just don't happen to think it's a genetic disease we all suffer from. I think we all have very similar symptoms, but not all necessarily suffer from the same main problem. We all spent many years going camping in wooded areas. There were dogs in our past- heck the oldest of my aunts that rarely goes camping, lives in a house full of dogs. I mean, there are people with chronic lyme (I guess it's called) who have had it fr 15-20 years w/out a clue. And they were diagnosed with other diseases/illnesses, because lyme is so similiar, or because lyme actually brought on the other disease/illness. Of course not in all cases.. but from what I'm seeing on so many message boards, certainly in some. I am visiting a few different "chronic pain" boards, and I listed off my symptoms. Some thought I had fibro, but a lot more suggested lyme disease. It wasn't until I started putting 2-and-2 together, that it started making more sense to me. At least in my case.
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• United States
16 Mar 07
I have Frbro and have had it for years. I don't think a tick was in my past
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• United States
16 Mar 07
I'm curious how long you suffered before you were diagnosed? Do you recall being tested for MS, Lupus, etc.. all the other similar autoimmune diseases before you were diagnosed? In other words, your doctors tried to rule out everything before telling you that you had Fibro?
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• United States
22 Apr 07
There have been many cases of people misdiagnosed. Such as with MS, and then found out decades later it was actually Lyme. They started antibiotics, and their symptoms started to go away. People who were once bed-ridden, were able to walk again.
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@missybal (4490)
• United States
31 Mar 07
One of the first tests was for lyme disease that my doctor did. And besides in many cases fibromyalgia is inherited also. I do however think that many people with fibromyalgia may also have Ebstein Barr. It's a form of mono that is hard to detect and only shows in one certain blood test (doesn't show on a cotton swab). Fibromyalgia for the most part doesn't just come on. You actually have it all your life and then it gets worse with time and depending on the way you live your life. I never really gone camping... I was diagnosed when I was 20 with Fibromyalgia.
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• United States
22 Apr 07
Which lyme test did you get? Just the ELISA? If you had it for years, chances are much higher you would not have the antibodies show up on that basic (and typically unreliable) test. You don't even need to go camping, simply because where you live in a high risk zone for Lyme (and possibly other tick-bourne illnesses). You would need a western blot, and possibly have your blood sent to a lab which knows what it is looking for. Fibromyalgia, Epstein Barr, CFS, are all illnesses commonly linked to Lyme, as is what my doctor is currently claiming I have- polymyalgia rheumatica.
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@missybal (4490)
• United States
31 Mar 07
I didn't mean to shoot down your discussion or to be rude in any way. It is very interesting theory that makes some sense however with my own experience I would have to disagree with it. Thanks so much for for sharing though.
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@natrlvr2 (383)
• United States
19 Mar 07
One of the very first tests I got was for Lyme disease(since I live in Wisconsin,lots of ticks).I have been in pain a LONG time but was diagnosed with fibromyalgia in 1997.Not my only chronic pain issue anymore.
• United States
9 Apr 07
I am VERY interested in what you have to say here. I had a wound that looked like a bite on my shoulder (drs said maybe it is a bug bite) about 3 years ago. It became a very large area (about 20cm) within a few days and landed me in the hospital for a couple of days. I have been ill ever since with things getting worse and worse. I have never been tested for Lyme disease before. The funny (or not so funny) thing is I spent a week on the Oregon coast (I live in western Oregon) 4 days before this "bug bite" reared its ugly head. I know that ticks that carry Lyme disease are not nearly as prevalant here as they are in other parts of the country but I have to wonder .... why the heck have NONE of the doctors I have been to even thought of this option?!
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