I was diagnosed with fibromyalgia by a rheumatologist in February. I have had off and on pain for over 8 years now. As soon as I would be ready to call the doctor the pain usually disappeared, just to return in the future. I've had a bunch of bloodwork done, everything was normal and they said it was fibromyalgia. Also, in February, I saw a neurologist who diagnosed me with post viral syndrome. I don't know what symptoms are what anymore. I had pneumonia in November (right after a flu shot) and immediately following the pneumonia I had asthmatic bronchitis. When I was on the meds (Advair, albuterol, prednisone and doxycycline) I started with neurological symptoms. I felt like something was crawling in my back and I developed musle twitches and weakness. My hands and feet experienced numbness and tingling, sometimes my face would feel numb or my back would tingle. I experienced hot burning sensations going through different parts of my body at different times. Now the tingling is in both my feet (my left one all the time) and I have weakness which I consistently feel more in my right arm and left leg and foot. My fingers are also very stiff and it's harder for me to grasp things. I have tremors too, I'm very shaky, but it changes from day to day. The doctors believe it is just fibromyalgia and post viral syndrome. I go for a follow up with the neuro on 4/13. Are my symptoms consistent with fibromyalgia at this point? I don't have the pain like I used to when I originally thought that I had fibro which was before I got the pneumonia?
I can tell you that all of your symptoms could be due to fibromyalgia. However, I am working on a "Newly Diagnosed" health page because I'm getting concerned that many physicians are not checking out other possibilities before making their final "fibromyalgia" or "CFS" diagnosis.
Have you had an MRI of the brain done to help rule out MS ? Also, have you had lyme testing and if so, how many times and through which labs ?
I have not had an MRI, but am going to ask for one when I go back to the neuro in 2 weeks. From her assessment in the office she said that I didn't have MS because I specifically asked her as I am worried about that. My lyme testing was negative but it was just the regular blood test at the lab where I had all my other bloodwork done. I'm outside all the time once the weather is nice, so I was hoping it was Lyme and I could take antibiotics. I've been tested for Lyme twice, I think. I saw some discussions related to vitamin D and my vitamin D level was actually one of the highest my doctor has seen, she said usually everyone is low. I've been going for aquatic physical therapy once or twice a week and I can't tell if it is helping or not. What Lyme test should I ask for?
You do need that MRI to rule out MS or the possibility of it being something else causing your symptoms. A routine blood test will not reflect Lyme Disease. There are a few ways they test for this that are more accurate...but one you can request is a Western Blot. One other thing about Lyme Disease is that frequently taking the antibiotics do not help, unless it is caught in the very early stages. You do not want it to be Lyme...it is not easily treated as many in that forum can tell you.
Of course, it could be related to being post viral, as it is thought that with FMS/CFS our immune system is not able to ward off these virual components. Most do become sick after having a serious infection of some type, or after a traumatic event such as surgery/injuries.
It seems to be the popular thing now days for a physician to automatically label someone with FMS or CFS without adequate testing being done. I hope you can gain some answers soon.
If your western blot lyme test result is negative, then consider getting this lyme test done (through the right lab). The only problem is your insurance may not cover this test:
Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).
I honestly think you should consider having an MRI of the brain done and especially if you have cognitive problems, along with your pain.
Certainly your symptoms could all be due to fibromyalgia, but I'm getting frustrated because I'm hearing more people say that they haven't had other possible conditions ruled out first.... this is certainly a must !
Thanks for all the info everyone. It is scary to have all of these symptoms. Hopefully I will be able to get the Lyme test mentioned above and have my neuro order an MRI. I hope everything will come out normal so that I can better accept my diagnosis of FMS and post viral syndrome.
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