Hi Guys, ive been dealing with this for almost 4 years
So.. some of my symptoms come and go... i dont know if thats common with Fibro or Lyme.
Anyways...here is a short list of my current symptoms...
1-awful pain in 4 extremities when i woke up.
(hands, and legs) mostly muscular.
2-Awful joint pain, when i change a position or stay still for a short period of time.
3-Terrible Brain fog, that comes and goes... but lately has been getting worse, sometimes i struggle with words, pronunciation… read more
Answer Summary
Members deeply connected over the overwhelming challenge of distinguishing between fibromyalgia and Lyme disease, with many sharing that they... Read more
My issues started with a bite and expanding rash on stomach in 2011. I live in Kentucky and was "Lyme ignorant" at the time. It has been downhill from there. First weird rashes, then chronic fatigue, then Hashimoto's thyroid, then a 2 1/2 year itchy all over body rash that about drove me nuts, then severe stiffness and soreness resulting in a Fibromyalgia diagnosis by a rheumatologist. I had breast cancer in 1999 with chemo and radiation, so a lot has been blamed on that, 3 positive Lyme tests but get the hairy eyeball from most doctors in Kentucky when the Lyme word is even mentioned. I struggle big time with the brain fog too ... especially with executive function problems, which were diagnosed through a neuropsychological test as short term memory disfunction stemming from a sort of acquired ADHD. Ugh. I can honestly say that in many ways I feel your pain. I have never been big on treating symptoms, especially with pharmaceuticals, but the hard reality is that most of these chronic conditions are not curable (at least not yet), but the good news is that many of the symptoms can be managed, but I have had to take a much more day to day approach and just keep adding "tools" to my toolkit, both physically and psychologically. As hard as it is, I am trying to build a team, (joining this team is part of that), learn all I can, and know that the information available on the internet has changed the awareness and thus public demand for more answers on these mystery ailments which seem to be connected and are plaguing us.
You are not alone in this. Always remember that. However, it is so understandable to feel alone especially when our doctors seem clueless about how difficult it is to not have a firm diagnosis that explains our dilemma and gives us hope. I think the fact that these diseases (Lyme, Hashimotos, Chronic Fatigue, Fibromyalgia) seem rather difficult to pin down with lab work (although that seems ridiculous to me that they are) adds such a nasty level of frustration to the mix. Not to mention that our medical system is "specialist driven" which makes each of them only look at the organ or system that they specialize in when the reality is that all these conditions profoundly effect multiple systems
Thank you so much for taking time to share your story. I know all too well how that even that takes quite an effort. You have helped me (and I'm sure others) by sharing.
I have every symptom that you do and tested negative for Lyme disease. 😔
From my research lyme is hard to diagnose, you need to find a lyme literate doctor. Also I read that most doctors use the ELISA test, that test is not a good test to use for a diagnose.
Hi Hi Fibroguy1993. I think you would find this site and Dr. Rawls helpful. He has suffered from both fibromyalgia and Lyme and has written several books, has many videos available on YouTube and developed an herbal protocol. I have had several phone consultations with him and he really gets it in that he himself has been so effected. This is his main site and a good place to start https://rawlsmd.com/ . He is a medical doctor and he understands both conditions from multiple angles.