When the symptom is the syndrome: week in review

Last week, I was in an airport on my way to the Mayo Clinic. Wait, what? Well, I have briefly mentioned the reason on the blog a few times – here, here, and here. But for the most part, I haven’t said much because there wasn’t much to say.

To summarize, I’ve had recurring flare ups of fatigue and hand/joint pain for several years. After the last flare up, around Thanksgiving last year, it never really got better. I also started having muscle twitching and shakiness, for which my rheumatologist referred me to a neurologist. After a lot of tests and appointments, nobody had found a definite cause. I got a referral to the Mayo Clinic, which brings us to last week. I’m still processing and deciding what to do next…so this is mostly a chronological summary with a little stream-of-consciousness thrown in for confusion’s sake.

Tuesday: I had my initial appointment with an internal medicine doctor. I had several tests and other appointments scheduled (mostly before I arrived, a couple added based on this appointment), so I wasn’t expecting a diagnosis today. I got a tentative one, though – if we don’t find anything else, it’s probably Chronic Fatigue Syndrome. From the doctors’ perspective, this is a diagnosis of exclusion: you look for everything else it might be, and if nothing shows up, the diagnosis is CFS. From my perspective, it’s a diagnosis of description: I already know I have chronic fatigue, and I also know research on CFS has yet to turn up any definitive causes or treatments. Does adding the word “syndrome” to the symptom really change anything?

Anyway. I spent Tuesday afternoon in the neurology waiting room hoping to get a standby appointment. (I had an appointment scheduled already – it just happened to be 2 weeks later.) Once they sent standby patients away, I headed straight to the grocery store because my fasting blood test the next day required me to not eat after 7 pm and also not to eat anything high in fat for dinner. It might be possible to accomplish that at a restaurant, but I wasn’t ambitious enough to find out….so grocery store it was. In case you ever need to know, water from a hotel room coffee maker gets hot enough to cook instant-ish kung pao noodles.

Wednesday: Time for my second most hated medical test, a fasted blood test. This was actually the fastest blood draw I’ve ever had – my blood usually comes out really slowly. I was lightheaded afterwards, but only a few minutes’ walk away from my hotel and free breakfast. After breakfast I had a hand x-ray and instructions for an overnight oximetry test. This test requires you to wear a sort of rubber cap on one finger, and it took me forever to fall asleep while wearing it.

I had an appointment with a hand specialist to look at my hand pain along with numbness in my left pinky and ring fingers. The hand x-rays didn’t show any arthritis. The numbness is (probably) cubital tunnel syndrome. I got an appointment with a physical therapist later that afternoon, as it should get better with physical therapy exercises. And with avoiding putting pressure on the nerve – um, have you ever tried to avoid leaning on your elbows?! Fortunately, they make elbow pads to alleviate the pressure, because never leaning on my elbows is probably a lost cause.

Thursday: I dragged myself out of bed early so I could go check in for a neurology standby appointment again. After waiting for an hour or so, they called me up and told me they had an appointment for me at 9:30, which gave me enough time to leave the waiting room for some much-needed coffee. The neurologist decided the twitching and shakiness are probably caused by enhanced physiological tremor. She suspects the tremor is a physical reaction to the chronic fatigue, so it should go away if/when the fatigue gets better. Yay? She also mentioned central sensitization, which I’ll get back to in a bit.

I then had a rheumatology appointment, which mainly confirmed the diagnosis from my rheumatologist. Undifferentiated connective tissue disease includes symptoms of connective tissue diseases (things like lupus and rheumatoid arthritis), but not enough symptoms and/or positive blood test results for a conclusive diagnosis.

Finally, I had a follow-up appointment with internal medicine. By this point, I knew what they would say: all the tests came back normal, so I have CFS. And central sensitization, which is not a standalone diagnosis (in my case) but can be a component of both CFS and the connective tissue disease. It means that for some reason my central nervous system has become abnormally reactive, which results in greater sensitivity to pain, and sometimes to other stimuli like sounds, smells, and light. For example, recently when I’ve been feeling worse the sound of the heater running in my house becomes really irritating.

So now what?

Uh, I’m not sure. As I mentioned before, there’s no conclusive evidence on what causes CFS or the best treatment for it. There is evidence that people with CFS have subtle metabolic, immunologic, and other physiological differences compared to healthy people. But again, nothing that can be used for diagnosing CFS. And so far as I’ve read, we still don’t know if these changes cause CFS or are caused by it.

When it comes to treatments, the evidence is even more frustrating: there are number of treatments that have been shown to help for some people. But they have no effect for many people, and sometimes even make symptoms worse. Anyway, here are a few options and my current thoughts:

  • Decreasing daily activity, and gradually increasing. I really don’t want to decrease any more than I already have, especially with no guarantee that it will even help. But I’m thinking it could help to take short breaks during the day, rather than one giant break between work and dinner because I literally just can’t anymore.
  • Stress management. Because, of course, telling someone they need to be less stressed for the sake of their health is a good way to make them stressed about stress relief. Also, you want me to relax, like, every single day? I mean, I really probably should.
  • Get better sleep. I think I get quality sleep usually, but the quantity could be better. I average almost 8 hours a night, which should be ideal, I know, but I suspect I might need more than the average person. Also, I hear good sleep hygiene includes going to bed and waking up at roughly the same time every day. Umm never tried that….
  • Monitor heart rate. There’s some evidence that chronic fatigue gets worse if you exceed your aerobic heart rate and get into the anaerobic zone. So wearing a heart rate monitor and avoiding that threshold might help.
  • A long list of supplements that have “some evidence”. I might look into a few of these more, but for the most part supplement roulette is not a game I want to play.

But honestly, I probably chose this list because it plays to my biases. I want to be actively doing things to get better, not resting and relaxing and waiting. The thing is, my desire to do things currently exceeds the amount of energy I have to do things. So I wonder if the trick is convincing myself that what I actually want to do is rest.

 

Linking up with Meghan for week in review and HoHo Runs and MissSippiPiddlin for Weekly Wrap

15 Comment

  1. Ingunn says: Reply

    Oh man, I’m sorry. <3 I totally get the compulsion to be proactive, and I'm convinced it'll help you (as long as you manage to not stress yourself out about it of course – yay, stupid mind games!). Thank you for sharing with us and I wish you the best of luck going forward.
    Ingunn recently posted…A Tale of Two BirthdaysMy Profile

    1. Hannah says: Reply

      Thank you!

  2. Cora says: Reply

    That is a lot of appointments, a lot of waiting, and a lot of different information thrown at you. Without….. anything too concrete to come out of it. Such is the world of health and medicine. Ugh. I’m not sure what to wish you now… other than some sort of reprieve or betterment of your symptoms. And that you might tamper around with these ideas of what you can do and slowly start to see what feels good. These health things are such long processes and take a lot of patience :s
    Cora recently posted…Week In Review: Being Intentional About Being IntentionalMy Profile

    1. Hannah says: Reply

      The hard part of having a lot of information is knowing when to stop learning more stuff and just start trying things…

  3. Farrah says: Reply

    Aughh, I’m sorry to hear that! CFS can definitely be a really frustrating diagnosis, but I hope the things you try will be helpful for you and that it resolves soon!

    1. Hannah says: Reply

      Thank you!

  4. Wow! It sounds like you received a lot of confusing and frustrating information. Italso looks like you’ll go through some trial and error when it comes to finding what makes your feel better. But, every idea is worth a try. Is there a support group or on-line forum you could go to for help? Good luck and keep us updated! Thanks for linking,

    1. Hannah says: Reply

      Well, there are some ideas I do not think are worth a try (uhh coffee enemas….seriously a thing I have seen suggested), but at least that narrows things down a bit!

  5. I had no idea that you were going through all of the us! I really hope you get some answers and some possible treatment options soon.
    Deborah Brooks recently posted…Making The Decision To DNS For a RaceMy Profile

    1. Hannah says: Reply

      Thank you!

  6. […] the whirlwind of last week, I was predictably exhausted to start this week. But I also had a final exam Thursday night (yes […]

  7. Yikes! It sounds like an intense few days!!

    I have been diagnosed with CFS too and my best advice is to ignoring everything everyone else says and just try to find what works for you. Everyone is different which is frustrating – but also a relief when you try everyone else’s suggestions and they just don’t seem to work.
    Kristy from Southern In Law recently posted…Recipe: Easy 4 Ingredient Chocolate Fruit Cake (Gluten Free, Vegan & No Added Sugar!)My Profile

    1. Hannah says: Reply

      Oh gosh, the suggestions can be overwhelming honestly! Fortunately I have a pretty well-functioning filter for things that I’m pretty sure aren’t right for me.

  8. Laura says: Reply

    I’m so sorry to hear everything you’re going through! I had ulnar nerve entrapment in my left arm a few years ago with similar symptoms, and ended up having surgery to fix it. No problems since! I’m hoping you’ll have similar resolution… Wishing you lots of luck!

    1. Hannah says: Reply

      I’m starting to notice a difference with the PT exercises, so hoping not to need surgery!

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