Monday, June 25, 2018

fatigue/mystery illness update

I haven't posted in a year. I realize in reviewing my blog that it's actually quite helpful in many ways to have a record of stuff I've done to address the chronic-fatigue-like illness I've struggled with for the past 5 years. So I thought I'd post again to try and get the ball rolling and get back in the habit.

But where do you start after a year of not blogging?

Well, for starters, I have a bit of time to blog this morning, uncharacteristically. I'm with Loren up at Zermatt Resort in Midway for our 25th anniversary. We wanted a little R&R after hosting a pianist for the Gina Bachauer competition for the last two weeks (SO fun but also SO busy!).  We also really wanted to celebrate 25 years - that's a major accomplishment! Loren likes to sleep in, and I'm a morning person, so I thought I'd blog and exercise before he wakes up. I actually have the luxury of some time to myself this morning, and I'm enjoying that.

A few weeks ago I decided to give the medical professionals another shot at figuring out the fatigue. I have also been having some heart palpitations (for me, this meant an odd, intense heartbeat mostly noticed while lying down before sleeping). These were annoying and I doubted they were serious but wanted them checked out. After noticing them and talking with my friend Sarah (who happens to be an MD), she mentioned that the anti-depressant I have been taking (escitalopram, 20mg) could cause a heart condition called Long QT syndrome. Hmmm. I decided to pare down to 10mg escitalopram and see if that made me feel better. A month later it seemed maybe I had fewer palpitations, and I scheduled a doctor appointment to investigate as well as inquire again about my fatigue issues.

Tests ensued.

Heart - had an EKG and ended up wearing a Holter monitor for 48 hr to get it checked. I have PVCs - premature ventricular contractions - which are not usually serious, just annoying. Cardiologist gave me a clean bill of health. Good news.

Blood - Got CBC and metabolic panel as well has a blood smear (to rule out heel strike hemolysis). That showed my usual slight anemia (I've been slightly anemic with hemoglobin in the 12s and hematocrit 36-38 for as long as I can remember, which is obviously not great for a racewalker but is unlikely to explain the new onset of fatigue, as I have had this a long time) but also a slightly lowered white count with neutropenia. This probably doesn't mean much, but it did earn me a hematology referral. Because my iron (ferritin), B12, and folate are normal (yay for taking iron and B12!) it's weird that my hemoglobin is a bit low (for years it was low probably because my iron was low, but now it's unexplained). Perhaps my bone marrow isn't producing quite enough cells? Or they are getting destroyed by an inflammatory process? So. Something to investigate. I see hematology on July 27. I asked my doc if she was sure she was going to send me there, because my hemoglobin is not THAT low (12.3, and normal is 13 or more). I mean, the hematologist is going to roll his/her eyes that I'm walking in the door for help. She told me to advocate for myself, because I'm an athlete (or a wannabe athlete), and if LeBron James had a hemoglobin of 12.3 you bet the hematologists would take notice. Hmmm. Point taken.

Hormones - yeah, I'm old enough to be menopausal and that can contribute to fatigue, so got things checked. My LH and FSH are low enough that I'm not menopausal. Rules that out. While we're on the endocrine system, I got my TSH checked (thyroid) and it was normal. Rules that out too.

My doctor also gave me a referral to her sports medicine colleague to see if he had any ideas. He did.

We brainstormed and came up with a few things:

1) Lyme disease? Another blood test via Western blot - negative. Good. I'd hate to have that, and though I thought it unlikely (it's not common in Utah, though I've traveled some so that's always a possibility), I am glad to have that ruled out.

2) He agreed the hematology referral was worth a shot.

3) He wonders if my anti-depressant might possibly be the cause of all of this. Well, that is a novel thought. The timing is quite suspect if it took a while for it to begin to impact my training, now that I look at things. I have always had anxiety and am prone to mild depression but just gutted it out for years. Finally at the end of 2010 I decided to try medication, mostly because I felt my anxiety was negatively impacting my children. The medication (citalopram, 10mg) was great. I felt significantly better and things were much calmer around our house, and also my seasonal depression was a lot better, which improved my quality of life. In early 2011 I stopped it for a bit due to pregnancy (miscarried, sadly, even though unplanned) and restarted in late spring just a bit before World Masters. 2011 and early 2012 were my best years racewalking, as my iron was high and the fatigue hadn't started. If the antidepressant took a while to start to cause fatigue this is all possible. Late in 2012 everything nosedived - I had a poor 40k performance that fall (poor in that I was trained for 4:08ish and did 4:22 and felt awful) followed by an injury and a subpar 30k (3:15) due to not being able to train. Then in spring 2013 the crippling fatigue and muscle pain began. When I cut back on exercise, I felt better, and the muscle pain diminished over 18 months or so and hasn't returned, but if I exercise too much now I get punished. I wish I had the timeline better but...I don', sometime in 2013 (?) I upped the citalopram dose to 20mg because of ongoing depression about racewalking & the fatigue. It did seem to help my depression. In 2014? early 2015? I switched from citalopram 20 mg to escitalopram 10 mg - similar drug, just purer preparation (enantiomer), and same dose. The fatigue didn't change much at all and my training was about the same. Kinda crappy. But I was happier about it at least :)! Last year, I had a lot of anxiety in the late spring and early summer, and my doc recommended upping the escitalopram to 20mg. That helped a lot. BUT...I started trying to train harder, hoping to go to Spain for World Masters, and the training worked to a point but then after that was just completely ineffective. It's the weirdest thing. Nothing my coach and I have tried has worked at all. I train and get slower. It's like hitting a wall. You could argue this is age-related, but it's just too sudden, too severe, and the timing seems quite coincidental. Now, it's possible it's not the anti-depressant. I've gotten all excited about stuff before in the past 5 years - for example, going gluten-free in 2014 (didn't help; negative test for Celiac's), trying no added refined sugar, upping protein intake, etc. So I'm trying not to get all excited about this. It's one more thing to try, and I'm hopeful, but not hanging everything on it.

Going off the escitalopram has been, well, interesting. Took my last dose 8 days ago, on Sunday night (saw sports medicine doc Monday morning). All week I've been very tired, which can only partially be explained by hosting a pianist, I think. In addition I've felt very dizzy, and when I turn my head it takes the world a while to follow. I've had "brain zaps" - hard to explain but unpleasant. Finally, on Friday afternoon I got some nausea and drew the line at that, so I took half a tablet of escitalopram (5mg). Friday night I felt much better. By Saturday night I was dragging again and I'm still feeling iffy, but I think I might be past the worst of this. I haven't had any more nausea, though food has been oddly unappealing at times (and I'm a food addict so this is saying something!).

It's going to be interesting to see if this helps. I expect the timeline to be pretty delayed, so that's a bit of a conundrum, as I also don't enjoy anxiety and depression. Usually the depression isn't bad in summer so that's good. My sports med doc says there are other anti-depressants I can try, but I'm wondering if that's a good idea? I have some time to think about it as he wants me to do a 2 month trial without anything and keep a diary (hey, this blog works! Let's do it!).

So, back to today - exercise: might racewalk and see how it feels. Might do elliptical. No pressure. Just something to keep active and stay healthy. In reviewing my blog, it's sad that it's come to that, but on the other hand, at least I can still do something and for that I'm grateful.

And I'm thrilled to celebrate being married for 25 years to Loren. He's a rock in many ways - his calm to my storm has been a great help. He's a terrific father to our kids, and a steady partner. We've been through a lot together. Here's to 25 more!