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.

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7 thoughts on “Setbacks and Searching for Answers

  1. csgomez79 says:

    So sorry to hear this. I hope they figure out what the deal is soon and get you the care you need. Soft hugs.

  2. barb Fiveash says:

    Only eat organic fruit and veg, nothing else, filtered water no microwave you are intolerant to something. et rid of bleach, perfumes etc. That’s what I would do.

    • painfighter says:

      Thanks Barb! I am gluten intolerant and have quadruple checked at this point that no gluten is sneaking into my diet. The symptoms I had before I figured out my gluten intolerance were different though. More lower GI. This is upper GI. I am guilty of microwaving though. What does that do? And I don’t eat as much organic fruit and veg as I should, especially this time of year when the farmers at the local market aren’t around as much or with as many products. I don’t use bleach or perfume and had to stop using makeup because of my gluten intolerance. Gluten is in most makeup. If I need a little cover-up I only use Neutrogena products. I thought I might be developing another food intolerance but my doctor doesn’t think so. I’ve noticed my system doesn’t like corn at the moment so I’m doing my best to stay away from that. Soy too. My brother is gluten, soy and corn intolerant so I’ve been wondering if I could be now too.

      • barb Fiveash says:

        The only thing that helped me and I ended up with renal failure on renal dialysis, was to remove everything from my diet other than organic fruit and veg, to eat nothing else, no coffee , no salt and so on. Idid this for three months and never had a problem again. I gradually started to re introduce new stuff and so on. Good Luck. barb

      • barb says:

        Sorry that you are still really unwell and my suggestion of only organic fruit and veg doesn’t fix it for you. need to get renal tests done. But also I would suggest thyroid T3 &T 4 plus Free T 3 and Free T4 might be the reason for the tiredness. Also suggest joining Bens Friends, some very knowledgeable people there and Adrienne Dellwo,an on line fibromyalgia newsletter at About .com for lots of other ideas. Good Luck. barb

  3. Please let us know how you are. Praying for you.

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