Tuesday, March 6, 2012

Lyme Disease.

I find it extremely unnerving that the Fibromyalgia community does very little in spreading awareness about Lyme Disease.

Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:

-Severe Fatigue
-Hair Loss
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Burning or Stabbing Sensations
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Irritable Bladder
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Heart Palpitations
-Faintness/light headedness
-Poor Balance
-Mood Swings
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol

Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.

And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.

But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.

Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.

Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.

Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!

Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.

Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.

In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.

I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.

But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.

Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.

There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.

Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.

It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.

If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.

All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.

I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?

I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."


  1. Thanks for your post, I was one of those who had fibro for a while before I found out it was actually Lyme.Not all "lymies" are extreme, though I do believe many get way too carried away. I still believe I have fibro independently of the lyme, and I do not subscribe to the idea that all fibro, MS etc is Lyme, that just seems crazy to me.

    1. Hi Shelley!

      I do hope I didn't offend you, I tried really hard not to sound absolute about those with Lyme Disease. I became involved with the Lyme community when I thought it was a possibility, and there seemed to be recurrences of sometimes outlandish comments and attacks when I brought up fibromyalgia (as an independent diagnosis) that I felt were unnecessary and hindered communication.

      However, I do understand the frustration from the Lyme community (if anyone can understand, it's the fibro community - who also tend to be very defensive of their diagnoses).

      I have a childhood friend who has been diagnosed with Chronic Lyme, and tension has grown between us because I've chosen to accept that I *don't* have Lyme. So perhaps I'm biased in that respect, I just hate seeing her updates on her symptoms when I'm experiencing the same exact things and feeling like we could understand/support one another so well if she'd only be open to fibromyalgia as a true diagnosis.

      I certainly know that not all Lymies have the extreme mentality though, and I apologize if it came off as such. :)

    2. Not offended at all, I thought you brought out some good points =) And its great that you addressed the topic, I had no idea until I tested positive for Lyme that the symptoms were so similar.

  2. Thanks for this info. I am in Australia and not sure if Lyme Disease is very prevalent here as I did not realise this. Not sure it was a factor in my diagnosis??? May just be my ignorance though.
    I'll be adding you to Fibro Bloggers Directory any minute now. Please just add a badge from the sidebar on our home page - Cheers

    1. Well, like I said, Lyme Disease is just as controversial and complicated as fibro. Lyme Disease patients often hear the same "it's all in your head" "you need to see a psychiatrist" bullshit that fibro patients hear. I can look up some information of your area for you if you'd like?

      Thank you, and I will be sure to do so :)