I have not yet been bben officially diagnosed with FMS. However, at this point, I think it is the one thing that actually makes sense. Let me explain:
I was seeing a WONDERFUL pain specialist for a couple of years for my back pain and headaches. When he realized how bad my headaches really were (I was in such bad pain, I could not hide it that time)so he ordered an MRI which found a brain tumor and a sinus polyp. I had surgery to remove the tumor (even though the neurosurgeon did not believe it was causing my pain, which it was not) then saw an ENT about the removal of the sinus polyp (which went away on it's own without surgery).
I was managing my pain wonderfully, to be honest. While I was not completely pain free, I was functional. I was able to care for my now 3 year old daughter, clean the house, even ran a small animal rescue for a couple of years. He used a combination of chiropratic adjustments, trigger point injections, muscle relaxers and narcotics to manage the pain. I was not pain free, but was down to a 2 from a 9 (scale of 1-10), which I think was amazing. Thankfully, that doc was not stingy with the narcotics, allowing us to stock up a bit.
My husband lost his job, so we lost our premium insurance carrier, down to Medicaid (state medical). Because that doc did not take Medicaid, we had to switch to a new doc. It took us over a month to find one, that was just rude and treated both of us, (my husband who has a slipped disk in his neck) and myself, like we were drug seekers. She treated us like we were wasting her time and all we wanted were narcotics like we were addicts or selling them. Not worth her time basically.
We then were able to find a second doc who took state insurance (found out in my search that 90% or more of the pain specialists around here do not take Medicaid). He, however, does not like to give out narcotics PLUS he wants to deal with one pain before treating any other pains.
Well, this is what started me on my search. He wants ME to determine the cause of my headaches. He wants ME to go to different doctors to figure it out, however, offered no referrals that I could use. He just told me to find a headache clinic that took the state medical. OH JOY!!! So I started a search on the internet to see if I could determine the cause myself. In my long and tedious search, I came across the symptoms of FMS and when "OMG, I have most of those, including the tender points" (meaning that I feel like jumping out of my skin every time a doc touches most of those points, trigger points were very painful to me). I mean, who tells a pain specialist about alternating bowel issues when you have been on a variety of meds and the issues still exist? What female tells a pain specialist about abdominal pains when it could be linked to female issues? I thought the fogginess was linked to the meds, but now that I am not able to take them very often, it is still there. I honestly thought the cramps and spasms in my legs were from my back issues (which according to medical records, do not actually seem that serious). I thought my hands constantly numbing and tingling (falling asleep, or thats how it feels) was from a combination of neck issues and tendonitis in both hands (or so I have been diagnosed).
I really would like to go back onto the previous course of treatment that I was on. At least I was functional. The new specialist has me on Neurontin, 600 mg 3 times a day and not only does my back hurt, my head hurts (so I am between a 5-7 rather than up to a 9), but I am sleeping 12-15 hours a day AND STILL EXHAUSTED!!! When I used to sit on my bed to watch tv and such (my bedroom is my family room) now I rarely leave it. I had to have a friend move in to help with caring for my daughter. I had tried expplaining to my husband how tired I was (although tired never quite described it) he kept telling me that there was NO WAY that I could sleep as much as I do and STILL be tired.
Granted, he has his own issues which cause him to blow up (verbally) once a week or so (has to do with not fully processing the suicide of his brother some years ago, which we are now working on) but my constant sleeping was one of his set offs. We have been together for almost 5 years now and I know he tries. Now that I have FINALLY come up with something that makes sense and then some (not just about the pain, but everything that is wrong with me) he is trying harder to understand what I am really going through.
Honestly, I think I am doing good. I am down from 2 10 mg Norco every 6 hours to 1 5/500 mg Vicodin (that is with the tylenol in the meds) once or twice a day. I don't think it is because of the Neurontin, but my own willpower. Thankfully, my husband still had a stash from when we were still seeing the other doc!!!
I tried to explain to this doc how much I was still hurting last appointment. So what did he do? Up my dose on the Neurontin from 300mg to 600 mg 3 times a day. I also explained how my tylenol I was taking. His solution? Stop taking it. Now, I am almost non functional, wide spread pain (my head, neck, back, arms, legs, pain in my joints like shoulders, wrists and ankles) and depressed.
So, if ANYONE can help me with finding a doc that can help that will take Medicaid (not Medicare) in or around the Chicago area, I would SERIOUSLY appreciate it. My husband has been working for a friend the past few days, which hopefully will turn into a long term thing, so we are willing to hit ANY of the suburbs as well for this. Just someone who is willing to help return me to a course of treatment that was working for me.
At this point, I am not sure what depresses me more: Trying to deal with our current pain specialist, who is just not willing to listen or all the calls (again) trying to find a doc that accepts Medicaid. I mean, honestly, after the first 50 rejections, it does kind of get to you and you DO start to take it personally.
Please, please help. Once hubby has next day off, will be starting to work on the process to get an official diagnosis. I am just thankful that I FINALLY know what is wrong with me and know that I am actually NOT crazy, although it sure feels that way sometimes.