For me, finding an answer was by trial and error and depended on what would be covered by workers’ compensation.
I began with Advil and Tylenol because no doctor would believe me when I said I was in pain. It took two years and three doctors and a lawyer to finally get me to a doctor that knew what was wrong. The muscles in my neck would spasm so hard they shortened pulling my ears toward my shoulder and head to the side.
I was afraid to swallow, chew, speak, or move in the slightest way much of the time because any of these small things could set it off. If you are a woman you can compare it to having labor pains in your neck. If you are a guy, just the worst pain ever will have to suffice.
I was sent to a hand specialist, neurologist, and finally to a neurologist specializing in brachial plexopathy. I was poked (tortured by some), prodded, questioned, and asked to put my arms into impossible positions. My fingers would be stuck with a needle trying to prove I had feeling where there was none and be left bloody after multiple tries. (I was very glad I couldn’t feel them the next day.)
Brachial plexopathy is a form of peripheral neuropathy occurring when there is damage to the brachial plexus. This is an area on each side of the neck where nerve roots from the spinal cord split into each arm’s nerves.
Try driving a stick to and from anywhere with the shifting arm frozen. I began to reach across with my left hand to shift. That only worked partially.
After I found a Doctor who knew what my problem was, I began taking Darvocet. There was a time I took Darvocet like candy, but it didn’t help much. Neurontin, a nerve medication helped some, but if I took too much my bite was messed up. It caused my bottom jaw to jut to the left so, once again, I couldn’t chew.
Muscle relaxers helped with the spasms, but the brain is also a muscle. It was impossible to function in a work environment. I missed a lot of work, got nasty letters to remind me like I didn’t know. Workers’ Compensation is broken too, but I was one of the very lucky ones there. I did get care, begrudgingly, but I got care and most of the time I got the medication that was prescribed.
I worked as long as I could, but my threshold to pain hit its limit. I was a mess! I was broken.
I was used to working 10 to 14 hours a day and getting lots done. I loved my job! Working with my customers, troubleshooting, spreadsheets, installations…I did all of it — until I couldn’t.
So I turned to this.
Was it legal? No, but I had friends who grew their own and would bring me 1 or 2 already rolled and ready-to-go. I did not want to be altered. I preferred clarity and being productive. Pain got in the way of that as did every drug I took to manage the pain. Hated it!
However, one hit was enough to change the pain into something bearable. I was still in an altered state though and not clear-headed like I wanted. At least I could stand it with just that little bit of change.
When I finally broke down and had surgery on my neck, the Doctor went in to snip the muscle that was contracting around the nerve and blood vessel running beside it. Just a small microscopic surgery, tiny incision, and there it was…the nerve and blood vessel were 85% constricted. Can you imagine the blood going to the brain being constricted by 85%?! I was shocked.
While I was in the hospital, just overnight, I was feeling no pain. They had given me oxycodone. I was dancing in my room so happy! No pain.
“The climb might be tough and challenging,but the view is worth it. There is a purpose for that pain; you just can’t always see it right away. Victoria Arlen
When I got home, even with the oxy, I was once again in pain. I took the oxy, one pill twice a day. The problem with oxy, I quickly developed a tolerance for it and soon it was three times and day. When it hit four times a day, I asked the Doctor to take me off and I went back to Darvocet.
It took a few uncomfortable days to get the oxy out of my system. But I felt it was necessary.
It was another year before I was switched to a pain specialist who did his own testing and understood I really was in pain.
The company wouldn’t authorize the use of patches, and I had the history of building up a tolerance to the oxy so we went for time-released morphine. 60mg was not enough and 90mg was not enough, but when he explained the consequences of going to a higher dose I settled for the 90mg.
Oxy creates fuzzy-headedness and the inability to concentrate. It took me weeks to do what I used to do in a day or couple of hours. Productivity became a thing of the past, a distant memory.
The Doctor said, just wait, it gets worse! I was ecstatic at the prospect of worse! (not). But, the pain was finally bearable and I could manage physical therapy now without crying throughout the session. And, I found Feldenkrais!
At least now, I felt like I had tomorrow. I still believed deep down inside that we are all meant to be happy and hoped I could find mine again.