We're still waiting on the cover for my next "Waiting On" Wednesday, so today, I'm updating you on what's been going on with my health since I went to Mayo Clinic, back in late July/early August.
*A one year update (August 2018) can also be found here.*
When I got back from Mayo Clinic, I was already noticing some improvement. I'd realized, during their fibromyalgia/CFS seminar, that I had been exercising too much for my body to handle in its current condition. While at Mayo Clinic, I didn't exercise at all, and by the time I got home, my tremors and loss of balance had pretty much vanished. This was, of course, a big relief, and it made walking a lot easier. Evidently, my body's response to the overexertion was to respond with those neurological symptoms.
Soon after my return, I also set to work on treating the POTS/NMH. I did this by drinking more water, taking salt tablets, and wearing compression socks (30-40mmHg thigh highs, because I continue to be unable to tolerate basically any pressure on my pelvis/abdomen). Now, the neurologist at Mayo Clinic didn't think that the POTS/NMH was much of an issue, but out of everything I've done since arriving home, the POTS/NMH treatments have been the most notably effective. As soon as I started wearing the compression socks, my fatigue lessened. Standing up no longer makes me feel like I'm dying. I've also learned that drinking water and taking salt tablets when I'm feeling extra tired helps me wake up. So yay for treating my POTS/NMH!
After that, I set to work on Mayo Clinic's fibromyalgia/CFS program. It has a number of different focuses. Basically, they teach you that, along with doctor-recommended medications (usually antidepressants and neuropathic drugs), you need to use these resources in order to manage fibromyalgia and chronic fatigue syndrome:
They suggested that we each focus on two goals at a time, looking at the areas we're currently struggling with. My first two goals were 1) Exercise: to be able to do their recommended exercise program in full without tremors and the like and 2) Sleep Hygiene: to follow a strict sleep schedule, plus sleep hygiene rules, so that I could get up at 8am for church. (Obviously, though the focus of these goals was Exercise and Sleep Hygiene, they affect other areas as well. The second goal in particular also affects Spirituality and Socialization, which makes other areas, like Communication, Positive Thinking, and Stress Management, easier.)
So, starting off with my first area, Exercise. People who have chronic illnesses are often encouraged to do a "graded exercise program." What this means, basically, is you start at the lowest amount you are capable of doing without making yourself sicker, and then you add onto it little by little, helping your body acclimate, until you're able to do a full program. The recommended program that Mayo Clinic gave us to work towards was 15 minutes of stretching every day, 30 minutes of aerobic exercise four days a week, and 15 reps of strength exercises two days a week. I started out just doing the stretching and worked my way up, adding five minutes at a time. Today, I'm able to do the stretching and the aerobic program in full without tremors. I'll be adding strength exercises next week.
With my second goal, Sleep Hygiene, I ended up getting a boost from the trip itself. Thanks to the time zone change and the fact that I'd had to get up earlier than usual, when I got home from Mayo Clinic, I was already waking up at 9am, rather than 12pm or later, as I had been before Mayo Clinic. So from that, I worked my way up to my goal of 8am wakeups. I was able to accomplish this in early November. However, waking up at 8am wasn't the only focus of this goal. I also had been told at Mayo Clinic that I needed to stop sleeping as much as I was. You see, before I went to Mayo Clinic, I was taking 3-4 hour naps almost every day, along with sleeping 12+ hours a night. So my goal was now to sleep 9-10 hours a night, with a Sunday nap of only 30 minutes. I also had to follow sleep hygiene rules such as not exercising so late at night and using my bed only for sleep, instead of spending all day in bed like I usually did.
That was the hardest part of this program for me (so far). At first, staying awake for so freaking long without a nap was horrible. All I wanted was to go back to my beautiful, delicious, wonderful bed. I couldn't understand how anyone could cope with being awake for more than 8 hours at a time. I wanted the relief of being unconscious/dreaming. However, the POTS treatments did give me a boost, like I said before, and after a few weeks, I was able to stay awake all day without feeling like I was being tortured.
At first, this was really disconcerting because I had no idea what to do with all that time. I still get kind of lost and bored sometimes. But I'm now able to do intellectual labor for 3-4 hours straight (before, I could only think clearly for less than an hour a day). I'm also able to do some light chores now. This has helped fill up some time. I'm also proud to say that, as of the end of last month I'm able to attend all three hours of church basically every Sunday, which is something that I wasn't able to do for at least three years before this. I'm now able to leave the house multiple times a week without becoming sick, which really helps with doctor's appointments and such--although, I don't see doctors quite as much as I used to. And as of January, I'll be starting up my Master's degree again, taking a single online class at a time.
So that's some real, major progress!
That's not to say that everything's perfect. I'm still a long ways away from where I want to be. I'm not able to hold a part-time job yet (I doubt I'll ever be able to work full-time, which is seriously a bummer). I can't write all day, like I used to do (like I said, we're at 3-4 hours of intellectual work right now before my brain gives out). I'm still tired and in pain and super forgetful all day e'ry day, and although my interstitial cystitis is more or less under control now, I have to go to my urologist to get bladder instillations every other week in order to keep it that way. (Also, I wake up at least three times a night to go pee.)
And there are always going to be flares and setbacks. For example, I recently started having gastrointestinal symptoms again. See, I was diagnosed with IBS-M way back around the time I was originally diagnosed with fibromyalgia. I didn't really pay much attention to it, because the fibromyalgia has always been more disabling, but back in March, a holistic doctor I was seeing decided to try and do something about it. She ended up having me do a diet elimination along with the standard treatment for a condition called small intestinal bacterial overgrowth (SIBO), which is considered to be the real cause for IBS symptoms in many sufferers. It all but cured my GI symptoms! ...up til now.
Part of what's happened I think I actually have to blame on the MayoClinic doctors, who took me off of the low-dose antibiotic I was taking to increase intestinal motility (helping prevent the recurrence of SIBO). They told me to try pelvic floor therapy instead, but that had no impact in my case (it turns out I don't have pelvic floor dysfunction). Now it seems the SIBO has indeed reoccurred. Unfortunately, my normal doctor refuses to try the SIBO treatment, and we can't afford to go back to the holistic doctor. We're planning on seeing a gastroenterologist, but the nearest one doesn't have an appointment available until April (story of my life). For now, I have to just deal with my symptoms, which now are pretty solidly in the IBS-C area--unless I eat one of the three foods that I have intolerances to, in which case, we're back to the IBS-M.
Additionally, now that I've accomplished my Sleep Hygiene goal, I've moved on to goal 3: Nutrition--specifically, pushing the boundaries with my interstitial cystitis to see if I can eat more foods without setting off excruciating bladder pain. As y'all know, I've been following the IC Network's diet very closely, eating only the foods in the "green" column. However, most people don't have to be so strict with their food, and it varies between individuals. I already know that I can tolerate most apple varieties. As such, in the middle of November, I started testing out some "yellow" column foods. I also tried out Prelief, a supplement that reduces the acidity of foods. Unfortunately, I was a wee bit overenthusiastic about eating something besides potatoes, blueberries, and pasta, and I ended up setting off a really bad flare over Thanksgiving. And since once of the IC symptoms is abdominal swelling, I spent some time looking like this. Whee!
Normally, IC doesn't cause swelling to this extreme, so we were all pretty confused, and I got a lot of runaround from various doctors, but it did go away after my last instillation, so. *shrugs*
At least now I know that the Prelief only works on acidic "yellow" column foods--like very small amounts of citric acid--and that even with the Prelief, I still shouldn't eat stuff with citric acid probably more than once a week. In the future, as I continue testing out "yellow" column foods, I'll be more careful. I intend to try one new food a week, and I'll do my best not to overdo it, even if the food does seem to be okay at first.
And once I get up to par with the strength training portion of my Exercise goal, it'll be on to goal 4: Relaxation, where Mayo Clinic recommends that fibro/CFS patients spend ten minutes twice a day on deep breathing. A weird kind of thing to do, in my opinion, but they say that it really does work to calm down the autonomic system and reduce pain and fatigue. So I might as well add it on! I'm also, at my doctor's recommendation, currently adding a neuropathic pain medication on top of the antidepressant I already take for fibromyalgia. So far, no effect, but I'm sure I'll update you later about it. And I will also update you on what happens with my goals 3 and 4.
But for now, let it be known that I am doing much better, and I definitely recommend this program. I'm super grateful that I was able to go to Mayo Clinic and get the information I needed to get my life back on track. <3 Wishes for good progress to all y'all other chronically ill people out there!
Thanks for reading, friends. I will be back on Tuesday.
Images via glassdoor.com, Mayo Clinic, livestrong.com, giphy.com, and [my own] (2).
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