Sorry if this seems too long, this is my first post on anything ever.
I am a 32 year old male. I have been to see my primary care physician, and 2 neurologists. Each has given me different answers and I do not know what to do or who to see. I'm hoping after hearing my situation someone on here will have a recommendation on what I should do.
About a year ago I started to randomly have a severe pain between my right shoulder blade and spine. When I say severe, I mean feel it tighten up and then it feels like a knife or poker is driven into my back. Enough so that I can't do anything at all and it takes my breath away. I saw no connection in anything that would cause it.
Then in August last year I was getting a feeling mainly in my right leg. it was a constant aching type feeling (similar to if your arm fell asleep and was waking back up) not a numb or pins and needles. It is really hard for me to explain. Then the random pinching pain started above my knee, inside of my thigh, in back of my thigh right where it connects to my rear, in front of my ankle and under my foot. I went to bring my kids to laser tag and that night I woke up in extreme pain in my lower back and my right leg. From then on I have had a weakness in my legs that feels like it take so much more just to do normal stuff. After doing anything walking, standing it got worse and worse. On top of that I am getting on and off pinching pain in all the spots I was getting that odd feeling. Eventually my right leg gave out on me(only happened once) and I fell to the ground. I went to the er they told me i pulled a muscle and gave me some muscle relaxers and a shot of torridol which did nothing and the problem never went away. So I made an appointment with my PCP and he said he thought the problem spinal stenosis. He scheduled an mrI (lumbar) prescribed me tramadol and a sent me to a neurologist. After the mri(lumbar) I saw a neurologist who prescribed gabapentin, a spinal tap, and more mri's. I had issues with the gabapentin so after the mri's (thoracic and brain) I was taken off the gabapentin and put on amitriptyline to sleep through the night, and lyrica. That neurologist said transverse myelitis (that didn't show on mri) was the culprit and I would eventually get better. I could try a week of iv steroids to see if it helped. I did the steroids amd it seemed to help a little but not really. Soon after it was worse then before. My family and I were concerned there was more. So I asked to get a referral to another neurologist. That neurologist took a cervical mri. He then told me all the tests done were had normal results and he thought fibromyalgia was the problem. Now to be clear throughout all these months of testing. The weakness and random pinching pain has been getting worse and worse and now has spread.
Today I constantly have the odd feeling behind my arms, in both legs and lower back. Random pinching pains in all those areas mainly above the knee, inside thigh and where it connects to my rear, tailbone, in front of ankle and behind my Upper arm. With a weakness in my arms and legs that isn't too bad if I do nothing. But if I do anything too long the weakness and pain gets worse. This includes sitting, laying down. I feel like I can't even do nothing. Even driving causes my pain to worsen after a while. And even playing video games with my kids causes the pain in my arms and legs to flare up. My back where I got those random severe pains is always really tight, and I get the severe take my breath away pain more often. The meds don't seem to help and I don't know what to do anymore.
My work has been really good about the situation this whole time. But I am now on the verge of losing my job and scholarship to college (my employer is paying for my manufacturing engineering courses). I can't do anything without pain and constantly taking breaks.
I am currently prescribed to tramadol, lyrica, amitriptyline, zoloft. I am going to see another rheumatologist and neurologist by recommendation of my PCP. But I was hoping someone may have a good recommendation on somewhere in the new england area or close to it that is known to be good to get some straight answers. Or if anyone had any ideas on my situation at all and what I should do. Any feedback or help would be so greatly appreciated.