I found this site when I did a search for a new place to place my Fentanyl patch (it won't stay if put on my chest or anywhere else but my upper arms, even though I clean with alcohol first, but which gets sore at times) and I'm glad I did.
I don't know all the jargon, but several years ago, when I was in the hospital for something else, I mentioned that I had been clotheslined by my dogs and my back was really hurting. If I remember correctly it was an MRI they did while I was there and told me I had something called Flat Back, and later in looking at the report, they said what I already knew, that I also had arthritis in my lower back and neck.
More background about my medical history is this, many years ago, I used to be very good at something called Dance Dance Revolution, and played quite often with my daughter at an arcade. Over time, I continued playing, but my daughter did not, and for various gifts, I was bought items to play this at home, but it seemed that there were periods of time that my legs weren't moving as I expected them too, often falling off of the platform spraining my ankles or otherwise hurting myself when I fell to the ground. That wasn't the first symptom because it started in my hands and arms. I had a cell phone accessory company, which my husband now runs, and on weekend my kids worked in our store, and my daughter ended up taking over changing cell phone cases, because I was having great difficulty with controlling my hands, especially with small parts. I just charted it up to carpal tunnel and arthritis in my hands, but with the addition of that second symptom, as well as being extremely tired. I remember often in the mornings before I opened, I ran it by myself during the week, I would restock the shelves, and I would sit sobbing because I was so tired, struggling to stock, and falling about.
I don't understand why many of us do this, but we just ignored my first big event. By that point, my husband was taking long lunches to come help me, going to work early so he could get off early in order to come help me with the store in the afternoon. We would go out to breakfast prior to each of us going to our jobs, and there were a couple of small stairs that we had to go down in order to leave the restaurant and as I was doing this, I just froze. I couldn't move, it was like I had suddenly become an ironing board. My husband had to pick me up and shove me in the truck. After a short while it went away. As I said above, we just ignored it, like it didn't even happen and didn't even discuss it really. After this happened more often, I would lose control more and more, often thrashing about. A stent was put in my leg after my cardiologist and my pulmonologist pointed fingers back and forth at to my symptom of increasing exhaustion. My pulmonologist finally took a test where she had me ride a bike until I couldn't anymore, their instructions, and after they had to carry me out to my truck because I was too tired to do so, they asked why I had gone so long to this point of exhaustion, and didn't reply when I pointed out that they had told me to do so, like they were cheerleaders, actually when they kept screaming "KEEP GOING, HARDER, HARDER, HARDER!" etc. Anyhow, this test proved that it wasn't my lungs, in fact my pulmonologist, who is an excellent doctor, really tried hard to help me in the beginning and is still my doctor, said that if she didn't know me, she would have thought I was some incredible athlete as I had super lungs. We now know that it's because my muscles are always doing their form of isometrics, with both muscles trying to pull their way, with my poor joints caught in the middle. I kept declining until I could no longer work, while the seizures, chorea (which was funny, since I loved to dance on DDR!) muscle movement disorder... we heard all sorts of "labels" but no one was able to figure out why I was having this problem. In fact my family and I have come to really mistrust many doctors, as most wouldn't use the test results of the previous, wanting to run them themselves, promising to help me, they didn't, they just lost interest. For years as I progressed from walker (often just tipping over to the side when I did the ironing board move, or started stretching and thrashing), eventually to a power wheelchair. My occasional "events" became much more frequent, until they became daily, then hourly. I learned that fighting hard to control myself, or stress (especially because people were looking at me) and strangely music, all sorts of things could make them happen. Doctors looked at me like a lab creature during them. A victim of the way the medical industry is set up, with insurance companies deciding what they would pay for making the choices instead of doctors, as well as the fact that one has to go to a specialist for each thing, and the doctors aren't allowed to communicate between themselves about me, etc.
My husband was laid off of work and decided to help me full time, then when I couldn't work, he ran the store by himself, which became increasingly difficult as we sold more and more cellular accessories wholesale. Somewhere in the progression, quite a while after I couldn't work, I applied and was granted disability.
Other issues took a back seat to these incredibly painful events, including my back pain, carpal tunnel, etc Nobody would or could treat my symptoms because the insurance company wanted a diagnosis first, or whatever their excuse, my primary care doctor, who also is incredible, put me on muscle relaxers and pain medication, which surprising helped some with the symptoms, which by that point had become unbearable. She was very concerned about dispensing pain medication and was trying to find a pain doctor to do it instead, but each one only did procedures like botox (where would the inject? every muscle?), or spinal implants, etc. and the next appointment with her we would explain we had seen doctor such and such and why they couldn't monitor the pain med.
After many prayers, I found my 3rd great doctor and pain specialist. She's really on the ball, and while I don't have a diagnosis, she is treating my symptoms. She put me on a different medication which is often used to treat back pain, and seizures. Ironically, it doesn't help my back pain, and the fentanyl actually helps a lot with the events, so that now the big events are unusual (which by the way I am usually awake during) and even off the muscle relaxers my muscles have settled down so that finally I no longer look like an incredible body builder. She says that I seem to have some sort of central nervous system disorder, which responds to the pain medication as well as the seizure medication to quiet down. She also is quick to help me in many things that are an issue, like this bad stomach problem which rotates through a period where I get so sick that it's very difficult to eat or drink anything, but have to really try because if I don't I end up in the emergency room -- one can't go very long without water. We thought it was strange at first that it helps to take antihistamines as well as acid reducer, but this problem keeps getting worse.
So I'm on meds because I had a stent, then had a TIA -- but meds to "protect my brain" made my blood pressure too low, so afterwards back on the Plavix and my cholesterol is too high (but my "good" cholesterol is pretty high too, even though I'm pretty much in my chair most of the time.) and a nitro patch due to angina. I'm on oxygen because my super lungs got to the point that my ox sat kept going down. I'm also on asthma meds.
Not having many events has helped with the back pain, as muscles aren't pulling different ways in my neck and lower back, and the pain meds help too. I originally planned on making this a short story, but alas I seem to be a person who can make a short story quite long, sorry about that.
So, I don't have any fancy medical terms for my back issues, or any other medical problems that I have. The 3 doctors I mentioned above understand our (my husband and I) reluctance to go to any other specialists, since they have been along for "the ride" (my pulmonologist apologized that she "can't make any other doctor do their job.") especially my PCP and my pulmonologist. They have been there from the beginning and they too were frustrated. We just try to make the best of the situation and expect that a diagnosis might never be made.
I look forward to getting to you y'all.