I am a 41 y.o. woman who has been experiencing extreme muscle pain for 5+ years. My arms and legs are most affected, but at times my hands, fingers, etc. as well - to the point where I can't hold up a book, type, walk up inclines or do everyday activities. The severity waxes and wanes but is getting worse over time. I have been tested positive for Babesia (which I think I was infected with several years ago). I have been tested 3 times for Lyme, all negative. I am extremely sensitive to some perfumes and household cleaners - at times I have ended up in a fetal position on the floor, as it seems to significantly affect my motor control as well as concentration. I also have several small brain lesions but at this point MS has been ruled out by 95%. My thyroid was ablated in 1999 and I am now taking Levoxyll. Other negative tests include: Epstein-Barre, Lupus, Celiac Disease, various muscle diseases. As for next steps, I am considering looking into alternative tests for Lyme, and chemical sensitivity disorder. Any thoughts would be greatly appreciated.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
While Lyme disease can cause muscle pains, as an isolated and sole manifestation of Lyme it is unlikely, especially with three negative tests. one infection that causes muscle cramps is called Trichinella, but this would be evident on blood testing, which would show an elevation of a specific cell type of your CBC called eosinophils.
Muscle pain can have many causes. Muscle cramps may be due to myopathy. A myopathy is basically a generic term for a muscle problem. Myopathies can be inflammatory, as is the case with a disorder called polymyositis which is an autoimmune disorder. The hallmark of this disorder is weakness of the proximal muscles (hips, arms) in association with elevation of a blood chemical called creatine kinase, or CK. There are several other types of inflammatory myopathies as well. Also, there are genetic myopathies, of which there are several, each with its own characteristics and features. Most of these are associated with elevations of serum CK. Finally, and probably most commonly, metabolic causes such as thyroid problems or low potassium can be the cause of muscle cramping. If you have not had your thyroid checked recently this would be a good idea. The latter 2 can be diagnosed with simple blood tests. Certain medications, particularly cholesterol medications called statins, can cause muscle cramping. Other potential causes include certain vitamin deficiencies such as vitamin B12 and rarely thiamine.
Fibromyalagia is another medical condition that leads to whole body pains. Its cause is unknown, but it is characterized by diffuse aches, sometimes GI symptoms similar to irritable bowel, sleep abnormalities, low pain threshold, and other features. It is best treated with medications such as lyrica and neurontin, exercise, and physical therapy.
If your testing has not included an EMG, and if there is suspicion based on your physical examination and serum CK that a myopathy could be the cause of your symptoms, then this is one test that you could discuss with your neurologist. If you have not been evaluated by a neuromuscular specialist (a neurologist with a specialty in muscle and nerve diseases) this may benefit you.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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