Just... Stuff

"Wait... Are you in pain right now."
"Yes. I am always in pain, it is just a matter of degree."

It is so rare that anyone bothers to ask me how I am feeling that for a moment I was dumbstruck. Yes, the pain is constant if inconsistent. Some days it is more tolerable than others. Many activities make it worse. Sometimes it is excruciating for a moment, or an hour, or a day. But pain is always there. Pain is my constant companion.

I've been taking Flexeril for three weeks. Flexeril is a bit hard on my system, even at the lowest (5 mg) dose that I am currently taking. It gives me dizzy spells that cause me to black out temporarily and I find myself on my hands and knees while the world spins. It also might be causing some anxiety. Or I am just anxious, which is also entirely possible.

My pain management counselor, Gale, recommended that I try Neurontin (gabapentin). But my rheumatologist pointed out that Gabapentin is in the same family as Cymbalta and Cymbalta went very poorly for me. Cymbalta side-effects included lock jaw and 3 hour blocks of memory loss. So I will not be trying Gabapentin.

I asked my rheumatologist if he had any other medication suggestions. But he said I'd gone through the most obvious answers for fibromyalgia. All he said was to get regular, mild exercise. I explained that I had been exercising consistently since the spring until the pain and muscle weakness became such an issue in August. He continued to assert that exercise was the best answer. I feel like he wasn't even listening.

He suggested that a neurologist might be able to help more with any pain that is caused by the peripheral neuropathy (PN). To be clear, the PN is nothing new, it's just that every health care provider I've seen ignored it in favor of trying to put an end to the migraines. I complained of it to my standard physician and two neurologists in 2011 and 2012, but they were more concerned with the migraines.

I was diagnosed with PN in addition to fibromyalgia by the preeminent fibro expert in the area (Dr. Swartz) and I freaked out for a bit. Not because I was surprised that I had PN, but because once I had the diagnosis I was able to look up PN, compare it to the history of my symptoms, and see that my PN has been getting progressively worse.  The numbness and tingling, temperature sensitivity, the full body on-fire sensation, and the muscle weakness are all a result of PN. It's a hard blow to handle.

But I am trying to keep as emotionally calm and stable as possible. I'm trying not to worry too much about the future of my health since no one can say for certain that the trend of getting worse will continue or that we won't find a cause and a cure sometime soon. And it does no good to worry about the future, at least in that regard.

I also saw the gastroenterologist this week. They have scheduled me for a colonoscopy on November 11th. Hopefully there is nothing seriously wrong with my bowels. The PN can cause some discomforting long-term bowel problems that are far more harmless than other options like colon cancer. I am pretty sure it is just the PN, it fits in with the rest of my symptomology. They also had me get a blood draw to test for a variety of conditions including Celiac's Disease. Whatever is going on, I should know more by mid-Novemeber.

I also called Dr. Swartz to see if the medical records I released from my neurologist, rheumatologist, and physican had reached him. Only one record from the rheumatologist has reached him so far. I hope the records reach him soon as he cannot work on my Social Security Disability letter until he has all my medical laboratory reports.

Well, that is all the health stuff this week.

In other news, I applied for a part-time month-long position with Kelly Services in November. Why? I guess I am impatient with my health and I feel I have to try something. A month long position will give me a good idea of what managing work and fibro together would look like if possible at this point. I am hoping my pain and sleep schedule level out a bit and that all goes well. Noah Bradley's Art Camp also starts up in Novemember, so although my hands hurt constantly, I am going to try to participate in that as much as work and pain allow. The best way to know your limitations is to test them, right? Since I haven't had a migraine in two months, it is time to push my limits again and learn what I am now capable of.

Plus, I could really use a little cash at the end of the year.

I've been taking long walks every day the weather is pleasant. I hope to get into biking soon-- I just have to put air in the tires.