I had a huge setback in my ME/CFS about a month ago, and I am currently bed-bound, with bad orthostatic intolerance. For a week or two, I wasn’t sure if the setback would be a brief one, but now it’s clear that this is a monster crash, one in which it takes me months and months and months of careful pacing to get free of my bed. I am one of those people who rely almost entirely on pacing, rather than medications, supplements, or other treatments, to manage my illness. But I’ve decided to change my approach, because the gradual recovery of function that I get from pacing alone is excruciatingly slow.
Two of the main things I am changing are addressing orthostatic intolerance (see below) and trying to incorporate a careful “exercise” approach (see below again).
But I also contacted my doctor for recommendations, and based on her thoughts, I have started a couple of meds and some supplements:
- daily baths with Epsom salts, for magnesium (seems to help with pain, and may have other benefits)
- vitamin B12 sublingually (1000 mg per day) (my doc wouldn’t give me injectable, but studies are pretty favorable about this alternative)
- Famvir 500 mg daily (antiviral suggested by my doc)
- Deplin 7.5 mg daily (prescription folate)
- Immunopro, one scoop daily (special whey protein)
- vitamin D3 2000 mg daily
- increased water and salt intake
And here are some things I am planning to start soon:
- 4″ head-up tilt for my bed (sometimes called Inclined Bed Therapy) (I’ll explain this too)
- compression stockings (ditto)
- low dose naltrexone (I’m waiting to hear from my doc on this one)
Another possibility, but one I’m holding off on for a while:
- florinef and potassium (to expand blood volume)
I am also considering “mitochondrial cocktail” supplements and methylation-block supplements (a la Rich van K). But I don’t want to start too too many things all at once.
It finally dawned on me, after 8 years with this wretched illness, that a huge part of my disability is orthostatic intolerance (OI), which means that being upright, or even sitting up, is extremely hard on me. For all these years, whether I’m bedbound, housebound, or somewhat mobile, I’ve had to keep close track of how much time I spend sitting up, standing, and walking. Sitting with my legs under me–as in bed–is much more sustainable than sitting in a chair with legs down. And sitting in a chair is much more sustainable than standing or walking. My self-management has always involved frequent horizontal rest breaks. The verticality effect seems to me to be at least as important as the exertion effect (carrying things, moving quickly, etc.).
I don’t know why I didn’t focus on this sooner. POTS (postural orthostatic tachycardia syndrome), a subtype of OI, has many of the same symptoms as ME/CFS (including poor exercise tolerance), and recent studies suggest that the majority of people with ME/CFS also have POTS. (POTS is diagnosed by testing how your heart rate responds to being upright; if it goes up dramatically as you stand for a while, you have POTS.) In fact, it’s possible that many people who’ve been told they have ME/CFS actually have POTS alone instead. POTS is another poorly understood condition that’s finally emerging into the light of medical recognition, but it carries much more legitimacy with most doctors than ME/CFS, and is also a bit more treatable. Some folks are finding their ME/CFS easier to manage if they first address their orthostatic intolerance.
There are various drug treatments for POTS, and I might start trying those this spring. But there are also some simpler, safer treatments that help some folks, and I’m planning to try all of these:
- increase salt intake and fluid
- use medical-grade compression garments (I’m starting with stockings; a few folks have had great luck with anti-gravity suits used by astronauts and pilots; there are also “abdominal binders,” which I might try eventually)
- tilt your bed’s head up by 4-6 inches (there is good evidence that this increases blood volume, which helps decrease OI) (I’m going to take this slowly, because I spend so much time flat in bed that I fear making myself worse by tilting up full-time; I’m going to tilt a daybed up first, and gradually spend more time there, until I’m sure I can safely tilt up my regular bed.)
- exercise core muscles (well, this is a trick with severe ME/CFS; but I’m already experimenting with brief squeezing of core muscles a few times a day)
- exercise in a reclining position (yoga, leg lifts, perhaps brief recumbent bicycling)
I have been following Nancy Klimas’s recent work on exercise in ME/CFS. She and others are finding that patients have very low anaerobic thresholds, and that they have very bad reactions to exercising above their thresholds (which can be tracked through heart rate monitoring). I don’t entirely understand the science, but her recommendation is to exercise for very brief spells, with lots of rest interspersed with the activity, and always keeping your heart rate below your threshold. For most of us, that threshold would be somewhere between 90 and 105 beats per minute (unlike healthy folks, whose thresholds are much higher). The exercise might help with the illness, but should at least help prevent deconditioning (unless you overdo, of course).
I have taken to wearing a heart-rate monitor around the clock, and one thing that’s clear is that I can’t stay below my threshold all the time, because just walking to the bathroom puts my HR at 120. If I fill the teakettle at the sink, my HR shoots up to 136. On the other hand, I can lie on the floor doing a few slow leg lifts, and my HR stays below 90. Obviously, I shouldn’t be filling the teakettle!
My experience tells me that I can in fact get away with very brief activity above my threshold–like walking to the bathroom. But I am now keeping close track of how I’m responding to different activities and making sure that I make these forays past my threshold very brief (sitting on the bathroom floor if necessary until my heart rate settles down).
On the other hand, discovering that I can do leg lifts without raising my heart rate much has emboldened me to do my own experiment in “graded exercise” (this is NOT Simon Wesseley’s GET, however–don’t get me started on that!). Even though I can only tolerate sitting up in bed for about 15 minutes at a time right now, and even though I am not leaving the 2nd floor of my house these days, I am getting down on the floor twice a day (hoping to increase to more times), doing a very very slow exercise routine that takes almost half an hour, but only includes a few minutes of any sort of exertion.
If you are curious, here is the routine, which I do twice during the day: I do 5 slow leg lifts on one side (lying on back, one knee bent, lift other leg straight from ground until knees are side by side). I rest flat for a minute or so. Then 5 lifts on the other side. Rest. Do a set of Kegels (pelvic floor muscles). Rest. Then 4 mini-crunches (crunching abdominals and squeezing glutes). Rest. Then another set of leg lifts both sides. Rest. Leg lifts one more time. Rest. Stand up and do 10 toe lifts (rise onto tiptoes). The resting takes far more time than the exercises.
Now, if you are bedbound and reading this, you should be aware that I am just recently crashed, so my muscles are not as deconditioned as they would be if I had been bedbound and not exercising for a long time. This amount of exercise might be completely inappropriate for someone who has been in bed for a long time or who is not stable (still spiraling down).
My plan is to first do what I’m doing for a week and see how I fare. If all is well, I will add a third session (spaced out from the others by a few hours). Then I will add another session (this starts to take a LOT of time!). I think that I am more likely to be able to handle more sessions of exercise, well spaced apart, than a greater intensity of exercise. If this all goes well, I am planning to add incrementally to the routine itself. And, as the weather improves, I hope to add a tiny bit of walking to my day.
Of course, with all the changes I am making, I won’t really have any idea what is helping and what is not. But right now, I don’t feel that I have the luxury of treating myself as an experimental subject. I am going to try everything that appears to me to hold some promise without having significant drawbacks (like many medications). I will be keeping records, and I will post my progress.
Wish me fortitude and luck!