After writing about the pit of despair I fell into last week, I’m happy to have much more positive progress to write about the state of my health this week. It’s the flip side of the crazy-making doctors-who-do-not-seem-to-care; the few who do and actually take the time to use all the tools at their disposal to help you solve the many problems you have, whether they’ve seen them (and your diagnoses) before.
As I mentioned in my last article, I’ve been working with a relatively new neurologist, trying to get my neurological symptoms under control as much as possible. This work was actually begun with a different neurologist whom I liked very well and I lost to a position change at the hospital system where I get most of my medical care. I liked this first Neurologist a lot, Dr. Rackley. She had an empathy you rarely see in doctors that exceeded what most of us consider acceptable for a bedside manner. She was also incredibly thorough in her review of my symptoms and took the time to really try to understand what ME/CFS really is and how ALL my symptoms were connected, not just those that fell strictly within her purview. She was smart as hell and creative in her solutions and she ordered tons of tests to make sure no stone had gone unturned. She also cared not only whether or not the drugs were effective, but whether they were as much a hindrance as a help for their side effects and helped me to identify which of my symptoms truly were symptoms and which were side effects of medications. She understood and approved my use of antioxidants, supplements, minerals and vitamins and added some of her own. We chose anti-inflammatory, d-ribose and muscle relaxant in lieu of additional pain killers. We chose an alternative head and neck therapy over increasing my topamax. We tried zonegren instead of topamax to get my side effects down and so on and so forth.
Naturally, when I received notice that Dr. Rackley was leaving her regular practice to work at the hospital full-time, I was devastated. We’d gotten further than I had with any other doctor and I feared all would be lost. Still, we were a long way from solving anything. I was still stuck in a cycle where I could only sustain poor to moderate health with longer and longer periods of poor to severely poor periods in between. No matter what we tried, my migraines would come roaring back and we always had to raise my preventative migraine meds and spend weeks trying to get them back under control. There were times when I began to wonder if we were having any effect at all. Was that medication actually making me better or was the disease simply letting up on its own?
I think I finally, blissfully have an answer and that answer is emphatically NO. We have been having an impact all along, not only with the treatments we were using, but what was most key was one other treatment I was getting from that rheumatologist that just got himself fired. Yes folks, even a blind squirrel finds a nut from time to time! The one thing Kunath ever suggested as a treatment plan when I went into my first flare up with him was a steroid shot. Of course this is an old school move for a rheumatologist, no exactly thinking outside of the box. I believe he used cortisone. After my first one, I did feel an improvement, but it wasn’t anything to write home about. So I didn’t think much more about it.
Over the course of treatment with Kunath, I took a few more of those shots and became somewhat more convinced they were helpful, but I was still missing a bit part of the point. What I didn’t realize until my new neurologist wrote me a script for prednisone on Friday was that not only were they helping me with the aches and pains Kunath was giving them to me for, but they were helping significantly with the recurrence of my neurological symptoms.
When I took my first three doses of prednisone on Friday, my head pain went from 7 to a 4. By Monday, I was free and clear of any and all head pain, my vision had completely returned to normal, my muscle pain was significantly decreased, my abdominal pain and swelling was greatly reduced and my energy skyrocketed. Today is Tuesday and I’m back to singing show tunes and deciding where I’m going to shop with a friend this afternoon.
On Sunday it hit me with a flash. I’ve seen this pattern before. Struggling for weeks with my neurologist to get my migraines under control, raising my drugs and raising them some more and running to the office for samples because medicare won’t give me anymore rizatriptine and not a damn thing is bringing me relief. I’m going to crack soon and end up in the hospital. Then suddenly and miraculously, it begins to work! I can never quite put my finger on why that is. Sometimes it’s a matter of a week. Sometimes it’s months. I go back through my calendar, flying through the weeks and months as quickly as my touch screen will let me, comparing migraine rotations with steroid injections. There it is; the evidence! Every single time we got my migraines under control, it was actually thanks to a steroid.
I’ve read about the important role of inflammation in ME/CFS, probably countless times. There are a number of ME/CFS experts who are convinced that what causes this inflammation of the brain, nerves, the entire CNF really, should be the focal point of study in ME/CFS. The real debate is why the inflammation happens in the first place and it’s looking like there could be as many as six. I knew this, I’m a reasonably intelligent person (when my disease hasn’t taken too many of my cognitive resources away), and I feel like I’ve read enough med lit in the course of seeking treatment solutions for myself that I’ve practically earned myself an honorary medical degree, but still I missed this GIANT, obvious clue sitting in front of me for over a year and boy do I feel like a dumbass, so yeah, I’m definitely pulling my cognitive dysfunction card on this one. Hell, this is the entire reason I track all my symptoms, doctors appointments and treatments in the first place; to recognize the patterns. Seriously, this is why we NEED good, experienced doctors to partner with. Even the best doctors shouldn’t be their own patients.
I will be leaving aside why inflammation occurs in the CNF (and a lot of other places, most especially the bowels and muscles) in ME/CFS. That’s a debate for another time and at this point, it’s still largely philosophical. What’s most important is to understand how inflammation functions, what it does and why it’s paramount to control inflammation in ME/CFS patients.Inflammation is a localized protective response elicited by injury or destruction of tissues, which serves to destroy, dilute, or wall off both the injurious agent and the injured tissue. Inflammation can be caused by a bacterial or viral infection, some kinds of chemical exposure, exposure to extreme heat or cold, or mechanical injury.
The classic signs of inflammation are heat, redness, swelling, pain, and loss of function. These are manifestations of the physiologic changes that occur during the inflammatory process. The three major components of this process are (1) changes in the caliber of blood vessels and the rate of blood flow through them (hemodynamic changes); (2) increased capillary permeability; and (3) leukocytic exudation.*
Now take the effects of inflammation on the brain and the central nervous system. Not only does the inflammation cause edema, making the brain swell in its tightly encased skull and causing a great deal of pain, it also causes “loss of function” in the affected organ. If you have a kidney infection, your kidney’s aren’t going to filter quite as well as they normally do. What do you think happens to a brain that’s waterlogged and being heated like a pressure cooker. Yeah, and you know that lovely sensation we often get that feels a great deal like a hot flash that only happens from the neck up? I’m no scientist, but I find it interesting that while I have an average body temperature of 97.6 (and have for 12 years), haven’t run a temp over 99 since and yet still have the sensation that my brain is cooking that it might be related. Then there are all the ocular issues. When the inflammation takes over, my vision blurs, I have non-stop auras of every scope and variety that run for days without pause and my eyes are so sensitive to light that simply looking at my cell phone will put me in tears for days. I don’t know if it’s the location of the swelling, pressure on my optic nerves, or some combination thereof, but my vision terrifies me.
Then there is the peripheral stuff. I start to get mixed and false signals from my nerves, called parasthesis, in the form of stabbing, burning, and shooting pains throughout my body. My hands shake when I attempt to utilize my fine motor skills. I drop things regularly or throw them involuntarily. I trip. I stumble. I almost fall over for no apparent reason. My spine aches, especially at the site of my surgery and at each herniated disc.
Beyond my CNF, every injury I have ever had in any joint, tendon, or ligament begins to ache and grow warm, as if I’ve re-injured it even though I can barely leave my recliner. My energy wanes significantly. My abdomen swells and I begin gaining weight even though I can barely eat. I begin to suffer from constant nausea and no longer receive any hunger signals. Sometimes I vomit for days on end. My bowels begin to malfunction, rotating between diarrhea and constipation. Walking becomes extremely painful and slow. I often need something to help prop myself up, even if I do have enough energy to hold myself up.
Gone unchecked, even my hair and skin begin to suffer. I develop severely dry skin and patches of psoriasis get the better of me. My hair grows brittle. My hands and wrists ache like that of a 90 year old and I can’t even open a pill bottle without extreme pain. I also strongly suspect my Orthostatic Intolerance rages out of control during these inflammation flares and I am working on a hypothesis about the relationship between OI and inflammation for anyone who cares to listen.
I’m still new to unraveling the OI issue, but it makes a supreme sort of sense that when your body is constantly redirecting its fluids to be used in its defense, that it could easily not be able to keep up with the needs of the rest of the body through the conventional means of drinking regular old water.
Perhaps even more convincing is the damage done to the blood vessels during a bought of inflammation. Given that inflammation is both widespread and chronic in ME/CFS, what must our poor blood vessels look like in effected areas? Exactly how large are those effected areas? How well can we expect our vascular systems to perform with this level of constant deterioration?
Another data point I like to collect about my health is my weight. It’s been nearly impossible for me to have any impact on my weight over the last 7 years, at least any lasting sort, mostly due to the fact that I waver constantly between malnutrition and healing and back again. But every time this cycle begins, I watch my weight climb and every time I’m given a steroid, my weight plummets. Within 4 days staking my steroids this time around, I have lost 6 pounds, which is my average.
On a side note, even when I am carrying more inflammation, if I use the ORS, my body does seem slightly more willing to let go of some of the additional water weight. I find this fascinating, as does my doctor, but I’m not sure what it means. I’d love to hear opinions.
Since I’m pretty sure that my OI ebbs and flows with the inflammation like everything else, it really does make sense, but I will definitely keep you posted on my thoughts and progress in both arenas. I still have some work to do to prove my case on these issues and to ensure that I do what I need to do to keep this crazy-ass-whirly-gig-o-fun I’ve been on for way too long in check.
Of course preventing the inflammation isn’t a cure. It’s preventative maintenance. While the body does it to try to help, in autoimmune situations, it usually hurts. I can’t say that every symptom I listed is directly and entirely attributable to inflammation. I don’t have the science to back up such a statement and I’m not that silly. After all, there is damage being done that the immune system is responding to, but experience tells me I am definitely on the right track for how to feel better and keep things under control and that begins with taking steroids on a regular rotation. This way the drugs I do have to take actually have a chance to work, and at much lower doses. I also feel a hell of a lot better which will hopefully translate into real, positive change in my own life; such as no longer being queen of the recliner.
Controlling inflammation is key to any treatment plan for ME/CFS and quite possibly FM as well, since it has so many similar aspects. Inflammation is badass when it comes to almost any autoimmune type disease, so it’s really not surprising it’s just as important in this one. It’s not the only key, but its fundamental to unlocking a serious deterrent to wellness and will allow the treatments that are effective to do their job.