I skipped yesterday evening’s dose of the new medication (guaifenesin). I started feeling better at about 8:30 in the evening. Sleep was terrible. The same thing happened last week when the last flare up finally broke. The night before my birthday I got 2.5 hours of sleep. Bad sleep and migraines now seem to be the end of a cycle. With this protocol, once you start the medication, you’re supposed to get a few decent days, then it starts purging the bad stuff from your body, which then simulates your normal symptoms. The body finally catches up and filters it all out, and the symptoms ease. Then the cycle starts over. It’s supposed to get easier over time.
I’m still not sure if this is the medication or the normal progression of the disease. This has happened so many times before. I’ve been here a dozen times with whatever miracle cure I tried out. They have never lasted more than a handful of days. The only hope in this one is that the medication seems to be turning the flare ups on and off. I broke the last flare up by skipping the medication at night. By morning I felt better. The same thing happened last night and this morning. I’m going to skip this morning’s dose also. I really just need a little bit of time to recover. These flares have been so incredibly horrifying and terrible. Some of the worst ever. Completely unrelenting. I don’t have any ability to handle it right now. I’ll let my body catch up and then start back up tonight. I could be on too high of a dose also, so this will let my body even out the dose and let things catch up. I need to see some positive results though. I’ve been here so many times, I have zero confidence that this is working. I feel it’s either a placebo effect or the disease is getting worse. I cannot handle it getting worse.
I can already tell I feel better today. I’m still coming back to life, but I feel sharper, better energy. Yesterday I had a really hard time typing. I couldn’t spell and I kept stopping mid sentence because I couldn’t remember what I was trying to say. My brain gets so scrambled. The “Fibro Fog” is one of the worst things. The intense pain on top of it is just insane. There is no brain capacity left to deal with the pain. It completely overwhelms, and there is nothing you can do about it. Tears start pouring down my face when it’s that bad, and those acid tears that burn my eyes and face are a symptom of fibromyalgia also!
I’m back to the recovery struggle. Every day is just an absolute struggle. It’s either fibromyalgia flare ups, bad spine pain, exhaustion, migraines, attempting to recover. And I never get that recovery. It’s always onto the next big problem. I was just here about 5 days ago. I wasn’t able to do much because I was so exhausted. Then the next flare up came. I’m going to start the medication back up tonight, so hopefully that doesn’t start up another flare up. I still don’t know if it’s actually helping me. I’ll suffer for a benefit. I can’t suffer for no reason. I’ve done too much of that. It has just been rough day after rough day. I need to refill my tank somehow, and it’s not happening.
Just saw my primary doctor. Wow, was that difficult. I didn’t expect that. Having to talk about my issues, my disability, how incredibly fucked I am, was really difficult. I normally don’t like to talk about it because I already lived through it once. I don’t want to live through it again while I explain it to someone else. I write it down here as it comes into my head, so it’s not quite like that. The doctor offered to manage my Lyrica prescription. She asked why I haven’t committed to it, and I explained right to her face that I didn’t trust that medical center to keep me supplied with refills. Lyrica isn’t a medication you can just stop taking. You need a long taper, and the more you take, the harder it is. This place has been flaky and inconsistent. She offered to manage it and to give me refills. She wants to titrate up to the proper dose, which has never been done before. The PA for my pain management doctor gave me a small amount just to get me out the door. I’ve always been terrified of losing my healthcare, or my primary doctor, and therefor losing my access to the medication. I don’t want to be left on a large amount of a medication that needs a month to taper off of. That would be terrifying. They also didn’t forward my medical records to Social Security for disability determination, so I’m getting those myself so I can send them in with my appeal. Having Medicaid is a problem for disability application because the healthcare is so bad that there isn’t enough documentation and treatment for the problems. SSD sees that as you not having a disability, when in fact it’s the exact opposite. If I were healthy, I could get to the doctor, I could work and I would have good insurance and I would have a very long paper trail.
Aaand I had to go back. They had to give me a paper prescription. I specifically asked before I left and they said it would all be electronic. This is what you get with budget health insurance. Nothing goes right. Everything falls through the cracks. I am so fucking spent right now. I desperately need some relief. I want to drop and pass out right now. Not from pain, but from exhaustion and frustration. And probably pain too.
Ugh. Now they submitted half the prescriptions to the wrong pharmacy. I even told them which one, and she wrote it down. Now I have prescriptions at 2 pharmacies. Then one of the pharmacies messaged and said there is a problem with the insurance. Everything is an uphill battle, and I can’t manage to even get out of the house to start walking. I can’t even get out of bed. Everything is insanely difficult. If they need to contact the doctor, they don’t answer the phone or return calls. So the Lyrica basically won’t happen. This is why I have never committed to it. I know my prescription will never be consistent enough to always have a supply of the medication. I won’t go through emergency Lyrica withdrawals because of it.