September 15’ is when I was officially diagnosed but looking back I’ve had symptoms since 95’ especially fatigue whether I sleep 4 hrs or 12 hrs I feel the same. 6 yrs ago I seen my pcp for lower back pain explained that it felt like nerve pain not muscle, ordered me an x-ray and of course found nothing. May 15’ when I picked up my granddaughter out of the crib, my legs were jello and I almost fell, that’s when I went to my neurologist and was tested for MS, all tests negative, the fatigue was so severe on the weekends I didn’t get out of bed. It seems to be progressing quickly that everyday is totally different. Frustration is an all time high.
Hello GMN,
Also feel for you, this is so frustrating! Your story is so familiar, the tests for everything that come back negative, the fatigue, the pain, there is no rhyme or reason for this condition! But we won't let this beat us, we neded to accept it, work with it, and we can get to a better place! This community can help, just ask!
Take care, Anne
I went nearly three decades with pain that would go from my feet to my back. Just my entire body at times feels like chewing aluminum foil on a filing. As years past one test after the other came back neg. Now I have moved to New York, found a pain management doctor, she is the best. We have found I have 10 herniated disc some mild others severe. Cervical,thoracic and lumbar all have at least one severe. Thoracic has two severe as well as two cysts. I am telling you all this to NEVER GIVE UP.
I’m so sorry to hear of your difficulties. A few things stood out to me in your post, nerve issues wouldn’t necessarily be identified upon xray. Consider asking for an MRI of your lower back or, if possible, your entire spine in case disc/facet joint nerve compression issues are at the root of your leg weakness. Also, the unrefreshing sleep while a hallmark of Fibro should really be explored to rule out sleep apnea.
Best wishes.
Thanks so much for all the responses! Baltimorebaby I asked about an mri and they said they had to have a good reason for my insurance and since I’m not debilitated I should wait. As far as sleep apnea yes they want me to get a sleep study but at this time I cant miss anymore work, I recd legal custody of my granddaughter Dec 4th 15’ …my gds mom (my oldest) is 23, 19 and 17 yr old boys and 15yr dtr…and now a toddler! So I’m trying to keep my head above water with a sense of humor. Love my job but it’s a 90 min commute so that doesn’t make it any easier. I will say that I am guilty even workingin the medical field, I am guilty of perspective and knowledge. Looks are very deceiving with fibromyalgia and cfs. Now that this is my reality I plan on letting this control my life like a cat going in a tub.
Persistent leg weakness/back pain seems a reasonable explanation for insurance. You can always consider second opinion if it causes you concern. Also, there’s a home sleep study for apnea. Something to consider if you cannot do a hospital stay…
Best of luck,
Laurie