I was diagnosed with fibromyalgia back in June, after going through my own personal hell thanks to a horribly herniated disc, a procedure gone wrong, and subsequent back surgery. The diagnosis came as a surprise, especially because I had always looked at fibro as one of those diagnoses that was used when all else failed. I thought of it as something people faked in order to get pain pills. I never took it seriously until it slapped me in the face.
I’ve only typed a paragraph so far, and already my back is on fire and my arms feel like they were smashed with a hammer. Last night, I couldn’t sleep no matter what I did. Saturday night, I only got an hour of sleep, even though I was so exhausted, I could barely move. I’ve had weeks where every single day, I have a migraine or a cluster headache. I can’t vacuum the house without taking breaks, and there are far too many times when taking a shower either requires a pep talk or just doesn’t happen because I don’t have the energy.
The pain is ridiculous. It started in my ankle, and was in the leg that experienced pain when I herniated my disc and had sciatica, so I thought it was related to that. The pain spread up my leg, into my hip, and then over my entire body in the space of a week. I tried explaining it to my specialist, but they kept insisting that it was simply inflammation in my back that was pressing on the nerve and causing the pain. No matter how many times I said that the pain was different and that it was spreading, they didn’t change their minds and treated it as if it was either a reherniation or a simple swelling issue.
I eventually got in with a doctor who listened, and she ran tests and determined that it was indeed fibro. There were tests to rule things out and tests to confirm her diagnosis. On top of that, I found out that I was once again anemic. Thankfully, my awesome husband went out the very next day to grab me some iron supplements to take and get it under control. It’s not quite there yet, but I hope it’ll get there.
I’m taking fun medications for my fibro. Cymbalta is one, imitrex is another. I have a fun muscle relaxer that sometimes relieves the pain and sometimes has no effect at all. The medications don’t even get rid of the issues, they just fix things so that it’s not bothering me 24/7. I get small breaks where I feel fine, but taking advantage of those breaks to be productive means that the activity takes a toll on my body and I end up right back where I started when I’m done.
I usually love staying up late with my husband on Friday and Saturday nights, but last Friday, I couldn’t keep my eyes open once 8pm hit and I went to sleep as soon as it was possible to do so. I then woke up shortly after my husband went to sleep because my hands were tingling, my jaw hurt, and my legs felt as if I had just run a marathon. I can’t remember the last time I had a normal night of sleep, and it’s wearing on me.
My skin is overly sensitive, I get nauseous and throw up, I’m often confused and don’t hear or understand people when they are speaking to me, I’m constantly worried, and I feel totally useless. I haven’t been able to work, and AETNA (disability insurance through my company) denied my claim because the claim manager decided to completely overlook the diagnosis and treated my case as if my only issue was ankle pain. While it is in the appeal stages, I am not getting paid a dime.
My husband set up a GoFundMe, and we’ve raised a little over $700 at the time of this posting. It has helped, and I’m so grateful, but we’re still in a scary hole. My son’s birthday is coming up and I can’t buy him presents or take him out. My phone was nearly shut off because the bill was so late. We now have a second car payment because one of our cars died and we had no other option. Things are a mess.
I’m afraid and I feel alone, even though my husband has been doing everything he can and then some to support me. I feel guilty for not working, even knowing I physically can’t cut it. I feel like a liar sometimes; there are a lot of people who assume that fibro is a BS diagnosis or a made up disease; I was one of those people at one point. This is a scary time in my life. I need to get this thing under control, but trying to figure out how is quite possibly the hardest thing I’ve ever had to do.