I have had ongoing issues with disc problems in my spine since 2001. Between my PCP helping me with pain medication and chiropractic manipulation/adjustments/therapy/stimulaion, I was able to continue working until 2014. In 2013 I changed PCP's and everything in my life changed. I was told by him it wasn't advisable to get chiropractic care anymore because of osteopenia. The only thing he gave me for pain was gabapentin. Started me on low dose (100mg 3xday) then quickly increased it to 600mg 3x day. That drug made every nerve ending in my body stand on edge. Then he added Lyrica which made my lower legs and feet swell so badly I couldn't get my shoes on. I stopped taking it and every other medicine he prescribed except the gabapentin. I was having some horrible side effects from gabapentin so I tried to stop taking it but was unaware it would cause sever withdrawal symptoms. I had to gradually start it again and ween off over the next few months myself, because my physician, and all other physicians would not admit it would cause withdrawals, and therefore would not help me.
When PCP and other physicians, including neurologists, psychiatrists, etc. couldn't find what was wrong with me nor could understand where all my pain was coming from, and when everything was left untreated, and my condition continued to worsen, i was having a hard time concentrating and performing tasks that came to me naturally.
I also started having frequent falls over a period of a few months, fracturing some bones in foot, wrist, knee, shoulder and cocyyx. The doctors notice my gait wasn't normal and my balance was a bit off, so they started leaning towards Lewy body dementia.
None of this felt right to me. I knew I was having problems, but kept going from doctor to doctor for help to correct my issues and help me through the pain so I could make some advances with physical therapy and exercise. None of them were willing to do that and I'm assuming it was because they felt so sure I was a dementia case with possible lewy bodies, and 63 years OLD so they would not prescribe any proper pain medication.
After that I spiraled down hill and was very close to being an invalid. My posture (from pinched nerve and possible fracture in neck, radiating to shoulders) became so stooped I could not straighten up. My neck became so tense and out of alignment that it would pull my chin to my chest and lock it there.
During this time these doctors put it into my one of my sons mind that his mother, as he knew her would never be the same again and he needed to accept it. At that point, my son, thinking I could not think rationally, nor accept the diagnosis they had given me, decided I might be better off in a home for older people. He finally decided I didn't belong there when he had a look at the condition of the people living there compared (wheel chairs, oxygen tanks) compared to my condition (still walking, breathing, tyring to stay mobile), yet for some reason, when plans to put me there didn't work out, I continued to recieve threats of being placed there by his wife. They also isolated themselves and my grandchildren from me. That caused as much emotional pain for me as the physical pain.
Now, still having bouts of this exchruciating pain, yet able to contol it a bit better, my neurologist has told me I do not have Lewy body dementia (my gait and balance problems obviously caused from spinal injuries), and not sure if I even have dementia.
They have seen arthritis in my neck and my blood work shows a lot of inflamation. More blood tests have been ordered to determine which inflamation marker is most elevated and has ordered an ANA survey including rheumatoid factr, (RO) ENA antibody and (LA) ENA antibody testing.
Has anyone out there had same/similar experiences? If so, has anyone helped you deal with the complexity of these illnesses?