Answers

Answers are so hard to come by. We search and we search for the reasons why we suffer the way we do. There are theories, guesses, research, etc., but no clear answer. Maybe one day there will be an answer for why we suffer the way we do from our fibromyalgia, but not today. I’ve spent so many years searching for what’s wrong with me. It took me years to get the diagnosis of fibromyalgia. Fibromyalgia. The thing that unites so many of my wacky, painful symptoms under one label. Even with the diagnosis of fibromyalgia, I still read and research, still look for answers. Why me? Why do I have this awful, invisible disease? I don’t know if I’ll ever know the answer to that one.

After a year of very hard work to make myself feel better and stronger, a year filled with tough work with my therapist examining every nook and cranny of my brain and dealing with past traumas and unhealthy habits, I started to finally feel better. November was great. I hadn’t felt that good, that healthy, in years. My pain was at the lowest level it had been since college. I didn’t have to fight my own body quite so hard every day. Life wasn’t quite the constant struggle against my own body that it has been for years. I started to be hopeful again, a feeling I thought I’d lost forever.

Then, the first Saturday of December, I got ill. I thought it was a virus or the stomach flu or something like that. After two weeks of constant nausea, I called my doctor. Thus began another long series of tests and doctors visits to figure out what was wrong with me. Test after test came back normal and said I was just fine, perfectly healthy. It was deja vu for me. Before the diagnosis of fibromyalgia, test after test and doctor after doctor told me I was just fine. One told me I’d just have to live with the pain, that there was nothing that could be done. I reached that point where even you start to believe that it’s all in your head since every test and every doctor says you’re fine.

I’ve been a pin cushion for weeks now. Blood tests, IVs, x-rays, scans, and much more.  I think I met my insurance deductible for 2013 in the first week of January, a new record for me. My rheumatologist told me this nausea wasn’t some new symptom of fibromyalgia. This nausea has always felt medically based to me. Fibromyalgia feels so much more convoluted  So many things trigger pain for us, but that’s not the case with my nausea. When I eat, I get nauseous. Stress and emotions don’t effect it. Just food. It doesn’t matter what I eat or how much. Any food makes me feel sick. I have to make myself eat because I feel the best when I don’t eat. I’ve already lost 20 pounds and don’t want to lose more. I don’t get hungry. My stomach just gets so empty it hurts and then I have to eat and start the cycle all over again.

My osteopath, who is amazing, noticed very slight swelling in my abdomen above my gallbladder. That, combined with my other symptoms, led her to believe it was my gallbladder causing this. She told me she’d had her own removed for similar symptoms.  She’s the one who told me to push my doctor to run a HIDA scan on me. It tests the function of the gallbladder by introducing a digestive hormone via IV that makes the gallbladder contract. I got the scan on Monday. Predictably, I learned on Thursday that my scan was negative and my gallbladder worked fine. As soon as I got that hormone though, I had intense, stabbing pain in the area of my gallbladder. This convinced my GI doctor that I needed to have my gallbladder removed. I was scared about having surgery until last night.

I had a gallbladder attack last night. Sudden, severe, stabbing pain from the area of my gallbladder radiating to my back and right shoulder. The pain launched me into a bad fibromyalgia flare up. I had to take extra muscle relaxers to sleep last night. Today, I’ve been exhausted and drained. I feel like I was hit by a truck last night. I feel like a walking bruise.  I read online that over eating can trigger such an attack so I’ve been scared to eat today. Needless to say, I’m no longer scared of having surgery. The surgeon can take my gallbladder out as soon as he likes. I don’t want to have another attack like last night. No thanks. Last night was bad even by standard of pain, which is quite high now thanks to the fibromyalgia.

So I’ve spent 6 weeks searching for the answer to what is making me so nauseous. It seems I have my answer now: my gallbladder. And yet, I’m left with the same old questions. Why me? Why is my gallbladder suddenly not functioning right? Is it the fibromyalgia? My genes? A lifetime of using who knows how many medications?

Why me? Why any of us? What is the point of so much pain? I know I will never have an answer to that last question.

Setbacks and Searching for Answers

I haven’t posted in a while. I had been feeling so much better all through November. My energy was way up, my pain was down, I felt the best I had in years. It was amazing. I was loving such a wonderful respite from the pain.  Then one Saturday early in December I woke up and couldn’t keep my breakfast of gluten free toast down. Toast! I felt terrible for 48 hours.  I figured I had the flu. Two weeks passed and I was still nauseous. I’d lost 8 pounds. I wasn’t eating much as eating made the nausea worse. So I called my doctor. He was stumped by my symptoms when I saw him. As my husband who is a nurse points out, nausea is one of the most indefinite symptoms of an illness as anything and everything can cause it.  I’ve been feeling crappy for a month now. I’ve lost 16 pounds so far. I’m still not eating much. My energy is nonexistent. My pain is back up. I’m weak from the nausea, pain and weight loss.  I have bad night sweats. I get overheated and flushed very easily. I’m freezing my husband as I keep the thermostat set on 66 degrees in the house. Just going up the steps wears me out. I barely worked the week of Christmas or the week after. I worked from home a bit and used the last of my vacation time. I went on FMLA leave on New Years Day. What a way to start a new year.

Worrying is like a rocking chair

So now I’m back to where I was when I took my first FMLA leave in April 2012. My energy is gone, my pain is high, my body aches but I’m too tired to exercise, I’m not up to anything. My husband has had to take over everything around the house again. I push myself to go to the grocery store when I can. I put my dirty dishes in the dishwasher so they won’t pile up on the counter and make another mess for him to clean up. I try to do little things, but the burden is back on him. I feel so weak and beaten down. I’m in familiar territory with these feelings. I’ve been here before. It took me 3 years to finally get the diagnosis of fibromyalgia.  Now, I’m going from one test to another to try to find out what’s wrong with me, what’s causing this non-stop nausea.  I have to make myself eat. I feel the best when I don’t eat, but I don’t want to lose anymore weight.

Not knowing what is wrong with you is terrible. I think of so many things that could be causing this nausea, bad things, things that scare me. I pray for a simple cause, something that’s easy to treat. I pray that I feel better, stronger. I push myself to do a little yoga every day, even if I have to break it down into 5 minute blocks.  I can’t do nothing. I have to try to help my body heal. But it’s hard to be back to what feels like square one. It’s hard to be facing another uphill battle, another search for answers, a search for what ails me now.  I worry and fret and I don’t get anywhere but more upset than when I started. Worrying is pointless but I can’t seem to help myself. It’s easier to fight the known, not the unknown. Working at feeling better, getting stronger was easier when I got the fibromyalgia diagnosis. I knew what was wrong with me and I knew the things I could do to start feeling better. Not knowing is so hard.

I’ve had blood work done, but it was all normal. I’m negative for Mono. I’d hoped it was that as that’s a simple explanation, but no. I’m getting tests on my upper GI and gall bladder tomorrow at the hospital. I hope they shed some light on what’s going on. But I don’t know. Neither does my doctor. I saw him again this morning. He mentioned some new disorder they’re starting to link to fibromyalgia and CFS that I need to research today. Apparently it has a lot of the symptoms I have, but all of my symptoms are vague. Nausea is my main complaint and it could be caused by so many things. And maybe some of the symptoms I’ve always had either from the fibromyalgia or side effects from the medicines I take are a part of this illness but I can’t tell.  How do you know where the fibromyalgia symptoms stop and some other illness begins?

I’ve put in for 6 weeks of FMLA leave but that was a total guess. It’s hard to say how long I need to get better when I have no idea what’s going on. If anyone has any ideas of what could be causing my chronic nausea, please let me know. We fibromyalgia fighters tend to be a well read bunch. Maybe you’ve come across something I haven’t.

So I will continue waiting and searching for the answer to what ails me now. I’ll take it day by day and try to feel better. That’s all I can do for now. That, and watch a lot of TV. Keep your fingers crossed that I get some answers tomorrow. I hate this waiting game. It’s additional stress that I (and my family) do not need.

Time to rest before I look for answers some more. Maybe while I’m looking for answers I’ll find my hope too. My hope and normal positive outlook have escaped me with this setback. But they’ll come back. They always do.