I honestly got so despondent, that I started to question the utility of even pursuing a diagnosis. But, then I started reading Dr. Afrin's book (Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity). As I read through his extensive case histories and thorough explanations of mast cell symptomatology and heterogeneity, I have become more certain that this is a route I need to pursue for myself (rather than just give up all hope on ever feeling better or stopping the progression). So, I am on Dr. Afrin's wait list, and will have an appointment in approximately 2 years.
In the meantime, I have a list of things I can try, but I will need a local doctor to help me with some of them. So, after more searching, I got a recommendation for an immunologist in Evanston that apparently works with several of Dr. Afrin's local patients. (Dr. Vivian Chou) She reportedly accepts MCAS as a diagnosis and will work with Dr. Afrin on treatment plans. My appointment will be May 17. I know better than to get too hopeful, but as I've said before, I have just enough hope to try, which is really all you need. You don't have to have any level of certainty or confidence. You have to have just enough to be willing to try the next thing. (I don't buy into the whole power of positive thinking thing. It only causes me heartache from disappointment. I like to proceed with caution, realism, and my eyes wide open to possible outcomes. So, I am aware this appointment may be another bust. But it may get me headed in the right direction, so I'm willing to put myself through it. What more can you really ask of me?)
Anyway, the various things I haven't tried yet to try to calm my mast cells include:
- Continued trials of Cromolyn Sodium
- Switch to brand name Cromolyn Sodium (Gastrocrom), as it may be better tolerated (but more expensive)
- Try the compounded or imported medication Ketotifen, which is a mast cell stabilizer in addition to an antihistamine
- Try switching all of my medications to compounded forms without fillers (another expensive option...and a huge hassle)
- Try adding an H2 blocker back into my regimen to see if I can tolerate it (may also need to be compounded, as medication fillers can be huge mast cell triggers)
- Try the OTC supplement called Quercetin, which has been studied and shown to stabilize mast cells--I would need to try the purest form possible.
- Try a pure non-citrus, non-acidic supplemental vitamin C, which in higher doses, can stabilize mast cells
- Try filtering all my water (drinking and bath water)
- Low dose Doxepin is sometimes helpful (but I have a history of not tolerating serotonergic medications or tricyclics, so I would dread trying it.)
- Low dose Aspirin therapy helps some people, but I currently don't tolerate any NSAIDs, so I would be hesitant to try this, too.
Those are about all of the things I expect to be able to try before seeing Dr. Afrin. Medication trials take a long time in mast cell disease, because you can only try to change one thing at a time, various forms have to be tried, and doses have to be titrated up very gradually. Also, if you are having a major reaction, you can't try anything new until you get back to baseline. So each of these is a long, drawn-out process. With frequent reactions, it can take a long time to figure out what you are reacting to. Is it one of your current medications or foods that you no longer tolerate? Is it something environmental? Is it a change of season or weather causing a flare? Or is it actually the new change you are testing? And treatment outcomes are so variable and individual, so finding the right regimen for an individual with noticeable improvement often takes 2+ years of constant experimentation. Dr. Afrin says that about 80% of his patients have significant improvement after 2 years of treatment.
Once I get to Dr. Afrin, if these treatments do not get me to a tolerable place, there are more intense treatments that are often tried. These are mostly milder chemotherapy agents, especially Gleevec or Hydroxyurea. I don't know a lot about them, except that they have a higher risk profile than other medications, and many MCAS patients get significant improvement in their quality of life on them. Tolerances can be drastically improved. And symptoms you have accepted as part of your normal can just disappear.
Okay.
That's the mast cell update.
My EDS body has also been failing me. I've been trying a PT protocol for EDS for 4 months now, and I've pretty much had to give up on it. Trying to stabilize my sacrum and pelvis with gentle exercises has caused massive, disabling pain in the area. I've had to use my cane to get around at times. I can't seem to even handle simple bridges without a massive pain flare up.
This has happened with so many exercise routines over the years. I was once in quite good shape, working out with a trainer that took a special interest in me and gave me free sessions. I was the strongest I've ever been. Then, I had my lumbar surgery, and I couldn't return to that type of exercise. I switched to a routine with a PT in Milwaukee who had dealt with hypermobility a lot, and she helped me with small exercises to stabilize my troublesome joints and my whole core. She helped me come up with alternate exercises when things got too painful. Then, I had CCF surgery, and moved to Madison, so I lost all progress again.
At some point, I was using walking as my main form of exercise, but my feet became so painful that I could barely stand any weight on them. My custom orthotics got me able to walk again, but only for as few steps as possible a day. Any extra walking, and the foot pain becomes unbearable. So I have to limit my time on my feet to the bare minimum.
After my last surgery, my POTS got really bad, so I started recumbent biking as my main exercise. This was so awesome for me. I started really gradually and got to the point of decent cardio workouts while also building strength in my legs. This worked so well for a few years. Until it didn't anymore. I developed severe, disabling pain in my hips. I tried a new recumbent bike with slightly different positioning, and that worked for another 6 months. But the disabling hip pain came back. That was last fall, and I haven't been able to work up a sweat since then. The timing certainly did correlate with my most recent deterioration, but causation is questionable. It could certainly be that the worsening mast cell activation increased the joint pain and weakened my connective tissue. Or it could be that the lack of exercise caused the mast cell activation to worsen. (Dr. Afrin suspects that the connective tissue weakness in my form of EDS may be caused by mast cell activation itself.)
Either way, I started this new PT protocol in January, working on my own, since I can't actually go to a PT office. I've been really dedicated to it. The exercises are all pretty familiar to me, since I've had literally years of physical therapy. But for whatever reason, it just doesn't seem to be working out. For now, the less I use my body, the less pain I am in, making it easier to get through my activities of daily living. And I need to be able to keep caring for myself. No one can help me get all of my meals and bring me everything I need to get through the day, much less feed Wilma and take her outside for me. Those are the few things I'm responsible for in life, so I have to continuing managing them myself. Also, losing my mobility would really make my POTS go crazy. It's bad enough that I can't do cardio. But being bedbound brings the POTS to a whole new level.
So, for now, I've given up on any specific exercise and just try not to stay idle for too long at a time. My eating schedule and Wilma's eating and outside schedule help with this. The only thing I can think of trying sometime is an exercise machine called a NuStep. It's used in PT gyms, especially for people with severe arthritis and multiple joint replacements. It is a seated stepper with minimal range of motion. But, even used, it costs about $5000. So, it probably isn't in my future. There's no way to know how long my body would tolerate it anyway. I would love to go back to PT, especially aquatic PT, but I'm pretty sure I wouldn't tolerate the chlorine anymore.
My diet has been pretty much the same. I can't be around the smell of cooking or plenty of foods anymore (especially coffee and hot sauce--which may be my husband's favorite things). We figured out that the smell of coffee is what was triggering me in our apartment. So, my husband has sacrificed his favorite fresh-brewed coffee and switched to the much less enjoyable cold brew. And I can live at home again (at least, until the weather gets too hot. We don't have central A/C, so I can't tolerate the hot months here). Anyway, my diet is much the same. I'm eating blueberries now (frozen so they are fresh). They make my nose run and sometimes my face a little itchy, but since they are my only fruit, I'm sticking with them for now. I still splurge and try something outside my diet about once a month (usually some form of chicken and broccoli...I don't eat meat on a daily basis. I'm actually eating mostly vegan at this point, out of necessity.)
April has been a bad month for headaches. The weather changes always torture my head. I've had migraines with visual aura, plus the usual pressure/tension headaches and facial pain more days than not this month. The pressure is dropping really low tonight, and I sure feel it.
Sleep is inconsistent. But if I haven't had any recent triggers, and the weather is okay, and the stars align just right, I can sleep adequately multiple nights in a row. (For me, that usually means two bouts of sleep, about 3 1/2 hours each.) Other nights, I only get 4 hours of broken up sleep. Environmental and food triggers, as well as weather all contribute to this. But I am so grateful that I am not as sleep deprived as I once was.
Unfortunately, fatigue, malaise, and brain fog are still severe daily symptoms for me. I spend most of my time between meals staring at a wall or staring at a screen. In a daze. Not capable of much conversation or clear thinking. I'm still not tolerating any stimulants or exercise, so there's nothing to do for it.
I still have daily pain averaging a 6, usually worse in the evenings, and some days much worse than that. Pain includes headaches and body pain. The body pain is pretty widespread. My hips, knees, and feet hurt every day. My knees, especially on the outside of the knee by my unstable fibula, require constant bracing, and have chronic pain that definitely limits my mobility. My feet are also major hurdles of my mobility. My spine hurts often, My neck and shoulders hurt, too. My shoulders are easily pulled out of place just by leaning wrong or laying on my side. My SI joint comes out of place just by sitting wrong for a minute, causing widespread pain. I have muscle aches, especially in my legs, every day. This can often be micro-tears, as well as overuse injury from trying to compensate for my unstable joints. I also have bone pain, presumably from the mast cells, in my leg bones, every day. And currently, I cannot tolerate a single pain or migraine medication or supplement. Just nothing for pain. It is an often excruciating life.
Depression has been a persistent issue, given the limitations of my lifestyle. I have risked several social gatherings this spring, but I have suffered a flare after each one, with at least several days of worsened symptoms. Usually head/facial pain and burning in my chest, as well as insomnia and sometimes agitation. So, the isolation still largely persists, and so does the depression.
My anxiety is dependent on triggers. If I get exposed to anything (most recently the smell of hot sauce 4 days ago), I will feel immediate anxiety, a direct effect of mast cell activation on the brain. But, I can go many days with absolutely no anxiety, which is such a relief. We identified my Xyzal antihistamine as a major trigger of chest burning and anxiety. It just took 3 months to sort it out. Now, I'm back to only having these symptoms from a trigger, although they last for days at a time.
Okay...I've used up enough of your time, and gotten everything major out of my head. Hope you all are doing well! Thanks for reading. I'll write again after my next appointment.
