I have an autoimmune disorder. I blogged about it once upon a time. I prefer the term my autoimmune condition is known as in the UK and Canada – Myalgic Encephalomyelitis. It packs a little more punch than Chronic Fatigue Syndrome. I’ve heard rumor there is a new name for the condition – “Systemic Exertion Intolerance Disease” (SEID). Allow me to be skeptical that my next Military Treatment Provider (aka doctor) will know any of those three names, since most have not understood it to date.
Since being diagnosed in 2009, I have spent a significant amount of time learning my body, and more importantly, learning to read my body’s cues.
However, I always amaze myself at how much I don’t know about my body, or my autoimmune condition, until something else changes. As is the case with most autoimmune disorders, the symptoms can vary in severity depending on many environmental or physiological factors. Each pregnancy and round of postpartum hormones has brought a new manifestation of this disorder.
For the past couple weeks, I have been feeling off. Knowing about clinical manifestations of both anxiety and depression, and postpartum anxiety and depression, I knew I wasn’t meeting those classic definitions. Instead, I have just had a feeling of being off. And, as I explained to my husband, I can’t quite go into the doctor because of my muscular fatigue and just not feeling right – I have no symptoms for them to begin identifying what is wrong.
During the latter stages of my pregnancies, I had blood pressure spikes which resulted in a diagnosis of gestational hypertension (or, high blood pressure stemming solely on being pregnant – if I weren’t pregnant, I wouldn’t have high blood pressure); my first pregnancy resulted in severe preeclampsia. While most people’s gestational hypertension and preeclampsia subside after delivery of the placenta, mine has required medication for up to 8 weeks postpartum, to stabilize and bring my blood pressure down.
The last meeting with a Primary Care Manager (PCM, or doctor) after this latest pregnancy resulted in the standard, “If you are having headaches, or your blood pressure is reading 140/90 after you’ve weaned yourself off the medications, come on back in and we’ll put you back on the medication.” This was coming from a PCM I previously fired for incompetence, although I doubt she will have remembered me – my most recent, and the only competent PCM I have seen at this duty location, has since left permanently due to her own chronic illness.
So, as I have spent the past couple weeks feeling off, but not being able to pinpoint the exact issue, I decided to take my blood pressure. Imagine my surprise when the reading was in the upper 90s over low 70s. The top number is pretty low for me, pregnant or otherwise.
Then, I realized what has been happening the past few weeks. I suspect my autoimmune disorder doesn’t know how to handle pregnancy and the ensuing hormones. Instead, my body vacillates between extremes – upper 160s/lower 120s during the height of labor with my son, to upper 90s/lower 70s almost 4 months, to the day, postpartum with my daughter.
As my hormones fluctuate and stabilize, my body tears itself apart, draining me of muscle strength, and cognitive clarity. Oddly enough, this hypothesis has calmed me down, and has reassured me that I am not going to keel over at any possible moment.
I may look put together, and I may be functioning. But, looks can be deceiving.
And, I need to remember to take it easy as my body stabilizes and adjusts to a new normal.
**Please note – I am not a medical professional. If you are experiencing anything similar to what I have discussed in this blog, please consult your medical provider. My diagnosis was provided after a thorough rule-out of all other medical conditions, and while I have learned symptom management through extensive trial and error, as with most autoimmune disorders, not everyone reacts the same to similar courses of treatment.**
4 thoughts on “A CFS Update”
There are so many scattered and differential treatments and diagnoses for what you have that I don’t know how you keep track of it all. Dealing with it is so personal. I have no blood pressure (well, not to speak of), but you surely didn’t inherit it from me. I just watch sadly as three of you deal with the same thing. Docs wanted to put me on meds to bring mine up…nope. Not when so many suffer from the opposite. Know yourself….that is the best medicine.
I keep track of it all by blogging about it. Although I have yet to have any PCM willing to read my symptomology and blog when I furnish them with a copy at my “meet and greet” appointment.
And, I agree – “know yourself.”