Week 9 Recap: Weird Things

Week 9 was actually a good week—I didn’t feel completely healed by any means, but definitely on my way. Every day felt somewhere in the 90% range for me. What could make it better? More sleep, more energy, and more stamina—I think they are all related, aren’t they?

Some Weird things I experienced this past week:

• Random hives inside my elbows and knees that seemed to disappear as quickly as they appeared, and often only on the left side (there is that left side again!!).  
• Feeling weak, fluttery, and “weird” come about 8:30 or 9 in the evenings. I suspect it may have something to do with low blood sugar because that is the longest time of day I go without eating (don’t eat after dinner anymore). I ended up taking clonazepam every night that week when I went to bed to help me get past these odd, fluttery sensations. 
• I usually feel fine in motion, but when I have to stand still for any length of time (whether in the check-out line at the store, or cooking at the stove), I begin to feel queasy, light-headed, and like I’d really like to sit down. Maybe it is a blood pressure thing? I don’t know.

And yet another really weird thing that happened this past week happened on Monday afternoon. I experienced some sudden, stabbing pain in left shoulder (subclavian) area which made me a little nauseous and sweaty for a few seconds. I checked my food/symptom journal and found it was the first time I have felt pain or congestion in that area in about two weeks. It had been so long, I had almost forgotten about it!! That oh-so-common left shoulder/subclavian pain and congestion had disappeared completely during the time I was off of ergocalciferol (Vitamin D) and all forms of Vitamin D, about 10 days. In fact, now that I think of it, that is the only time it disappeared.—but I’m not saying they’re related. Yet, why did it go away, and why did it return so suddenly (the day after I restarted the ergocalciferol)?

Could the left shoulder/subclavian pain have anything to do with ordinary Vitamin D? Even before the ergocalciferol prescription, I was still taking Vitamin D3, 1000 IUs/day and still feeling that congestion. Maybe for some odd reason my body does not react well to any Vitamin D.  Either way, it is turning more into pain than congestion, these days.

Once I restarted the ergocalciferol, I didn’t notice any other adverse affects from the 50,000 IUs of Vitamin D like I had previously, so besides the pain in the left subclavian area, I suppose that is good news. If it bothers me, my doctor has instructed to reduce the dose to once a week, rather than twice a week. Let’s hope the left shoulder/subclavian congestion and pain doesn’t have anything to do with it.  On the other hand, if there is a link then I should be able to avoid that pain by stopping the D vitamins-- just have to get some more sunshine, I guess. 

Maybe I should invest in a tanning bed.  :)

I didn’t experience so much back pain this week like I did with the previous week, but I did wake up with head and neck pain (always the left side!) on five different mornings which is something I’d really like to take care of, but don’t know how—it doesn’t seem to be related to my pillow because I have also experienced it during the middle of the day, far from my pillow.

I continued my “physical therapy” all throughout the week: two 30-minute treadmill walks a day, increasing in mileage by small degrees every day. The photo here shows the exact model treadmill that I own, and it has probably saved my life more than once! But this week I still experienced that left shoulder/subclavian pain and congestion through at least one of the treadmill walks every day…. Regardless, I walked 18.39 miles this last week on that treadmill.

The other two parts of my “physical therapy” include strengthening my core muscles 20 minutes a day with Pilates (using a resistance band and the “wheel” as pictured here-- that's not me with the band), in addition to using the Pilates Power Gym for 10 minutes a day for weight-bearing exercises to strengthen my arms and legs.

This is the exact model of the Pilates Power Gym I purchased about 18 months ago when I knew I was slacking on exercise and wanted to get back into shape again. We used to keep it in front of the TV so that all of us could use it while watching TV.  It ended up being used mostly as an ottoman or footrest, so now it has been relegated to my room where I use it six days a week.

So Week 9 not only included 18.39 miles on the treadmill, but also 120 minutes with Pilates, and 90 minutes on the Pilates Power Gym. I’m not feeling any exercise highs or anything like that because it is hard work-- it is not fun.  For me, it is simply therapy. My goal is to get strong enough so that I can feel “normal” again— so that I can increase my strength and and gain some energy in the process. I hope it works!

Diagnosis Confirmed!

My first visit with the internal medicine specialist was a little stressful for me, but one of relief, as well.  It was stressful because I didn't really know where to begin.  I was having so many symptoms and they seemed to cross multiple systems in the body.  But it was also one with relief because for the first time in thirteen weeks, the doctor looked at me like he was genuinely interested in what was going on, and just as curious as myself as to the cause!

We discussed several things that were happening-- from the rapid pulse at random (it was 114 in his office at the time), the drug reactions (which I had never had prior to all of this), to the fatigue, the heart palpitations, and even the rashes on both my arms.

The best part about the visit was that there was an answer that would explain several (if not most) of the symptoms: Celiac Disease.  But how could I have CD with the blood tests coming back normal?  His answer was that I had Dermatitis Herpetiformis (DH) and that in order for the blood tests to be positive for CD, I would have had to be on a high (very high) gluten diet for 2 to 6 weeks!  And each time I was tested, I had either been off gluten for a while, or on a very low gluten diet.  The DH was definitive enough, and he told me that experts do not recommend a small intestine biopsy as long as that rash is present.

My DH had been present for 5 years, and nothing (and I do mean nothing!) could make it go away-- whether it was OTC medications, or prescribed.  It will take some time to heal, but it is gradually softening and diminishing.

The internist did order other tests, including more thyroid tests, a 24-hour UA, a DEXA scan (for bone density), a Holter Monitor, and a stress-echocardiogram to find out more about why my heart might feel so weak, or have palpitations.  He also suggested I continue my vitamin supplements, particularly D3, K, Iron, and Calcium/Magnesium.

In the meantime, I joined a couple of online support groups for CD and found an immense number of similarities in symptom stories, particularly with heart palpitations, weakness, and fatigue.  It seems as though the medical community does not have any direct answers regarding the connection between the heart and CD, but keep in mind that CD is a cross-system disorder and can affect any system in the body in a number of ways.  Perhaps the medical community just doesn't want to say one way or the other... playing it safe in their eyes, but not so for the CD community.

My thyroid tests ended up being normal, and at this point I don't know the results of the 24-Hour UA, the DEXA scan, nor the Holter Monitor results (which I wore for 48 hours).  During my time wearing the monitor, the palpitations were mostly quiet or so faint I couldn't be sure it was what I was feeling, so I guess it will be up to the experts to decide.

Happily, my stress-echocardiogram showed "one beautiful-looking pump" (cardiologist's words) with nothing wrong, whatsoever, that he could see.  My blood pressure was great (108/78), my cholesterol was great (162), and there was no visible reason to suspect anything wrong with my heart.  Though it did make me feel better, it does not take away the nervousness when something feels weird with my heart.  Perhaps it is my body's way of dealing with such a vital organ.  I can handle anything with any other part of my body, but my brain does not like it when my heart doesn't feel normal.

At the least, I can say that my heart seems to have settled down a bit and is in a mostly quiet mode these past few days.  Let's hope it continues.