Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.
First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂 Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.
Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.
3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.
Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.
My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!
I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.
I’ve had a some new appointments in the past few months:
1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.
2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”
As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)
3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.
4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:
- Mycoplasma tests
- Cytokine profile
- NK cell function test
- Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
- RNase L Panel
- Lactic acid
- DHEA sulphate
- Heavy metals
- Amino Acid
- IgG (?)
- potassium, copper and …?
For disability (but really don’t want to do):
- Neuropsychological Testing
- VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
- tilt table test
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.
** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.
Other blood tests:
the tilt tae.test will be beneficial for sure!!
THANK YOU! How ARE you?! I’ve been thinking about you. I haven’t answered your last comments yet and I’m feeling guilty! Vitamin D and iron I had done recently, but never the others. I am very scared of the TT test. Haven’t decided on that one…
I’m…ok, not okay, you know how it goes.(I update on FaceBook and DS (daily strength)a lot more than blogging) TT test is going to be so beneficial even though the test sucks. You’ll basically just get the symptoms you get now when you stand up to long etc, the heart racing, the sweating etc. You don’t have to faint to get a positive tilt table test. The doctors will check your bp and hr every 3 minutes and monitor you thru the entire thing. WOrst and best test I ever had done. AFterwards when they lay you flat all your symtpoms will go away and you’ll feel weary and worn out but it’s over. you’llh ave a diagnosis, you’ll have “proof” of what your heart is doing and they will tell you to eat more salt, drink more water/gatorade..water with lemon, and prescribe some medication that will help with that problem. I don’t think I could live without my meds, I’d be stuck in bed all day, it’s not a miracle cure for me or anything, but it helps… midodrine and metoprolol are the meds I take. I have neurocardiogenic syncope. I have a few links I want to send you. One is a youtube video about POTS(postural oarthostatic tachycardia syndrome) basically the same thing I have.. and another is about the tilt table test.
TILT TEST INFO
not sure about the VO2 test… doc better know what he/she is doing! I read your piece but am fighting a headache so have forgotten some of it sorry, but the one thing sticking in my head is your question re GET. I am getting a post ready re this at the moment for my blog and it is hard to get it right, the balance of doing a bit, not too much, what is right for me. The more i do the worse i suffer but then when i do less im wondering should i be doing more. Sorry, im not overly articulate today! But will do a post re my thoughts soon. xx
Yeah, that’s my fear – no one conducting these tests will know anything about ME.
Looking forward on your post about GET. I wouldn’t let a doctor near me when it comes to exercise, but every time I go to a new low, I stay there. Lately my steps have been fewer than 1,000 and I vowed I would never let that happen. I can go into the garden and make myself take 300 steps, but SHOULD I ? It’s a hard question. Have you ever read the blog SamandME.org? One day (after a very long struggle), she just put on her shoes and RAN. Sometimes I wish I’d never read anything on the Internet… I wouldn’t be so careful and maybe that’s just what I need. Or maybe that would make me much much worse. Who knows?
Must check out that blog, Interesting to hear how she got up and ran and for how long, and how she suffered, if at all, Last year I made myself run 100 meters in a race, Im a stubborn twig.. I finished way last but i ran, it was torture, i did it, i suffered. I ran a marathon when i was healthy, ran about 30-40 miles a week, The idea of running a mile now makes me sick. I had great hopes at the start of 2013 to walk 5km, it sounded so easy compared to what I used to be able to do, But my body crashed during normal walking exercise of 2.5km, there was no way I could push it to attempt walking 5km, It would have seen me in bed for weeks and this year, theres no way id attempt running 100meters, I get on my treadmill every two days and walk at a set pace trying to increase my walk every month or so as per my doctor, but there are weeks when i wont walk at all, i never reach the targets im supposed to reach but for me its important to try, Its like my mind is used to racing, to competing, my past life drilled in my mind. I need to try for me, for my sanity. Is it wise though? Should i be trying? I am worse now than i was last year. The unaswered questions, carrots I continue to chase. But when it comes down to it, we are the captains of our own ships, we know our guts, we know our bodies, We have to do what is best for us…
Thanks so much for the shout out! I’m sorry to hear you’re still blocked up…I totally and utterly sympathise and wish I had an answer to share, not least because then I myself might be a little less blocked too! Prunes, flaxseed, psyillium husk? I totally know what you mean about the deconditioning. I’ve been thinking about that a lot recently and I think you’re right that it has a lot to do with our symptoms, but that it is also like being stuck between a rock and hard place, how are we meant to re-condition when we feel so crap in the first place? The cardiologist sounds like he deserves a slap, but your GP sounds much nicer. I’ve been reading lots of stuff about mitochondria malfunction and also heavy metal toxicity as underlying causes of ME so those might be worth testing? Though what do I know, I’m very much broken with ME/CFS and POTS, so not sure even I’d take my advice!!
Oh yeah, I also eat prunes and ground flaxseed every day – I should add those in! Not psyllium husk, though, ugh! What does a lady have to do?! Thank you for all the ideas. There aren’t exactly a lot of people I can talk to about this.
I agree about the heavy metals and mitochondria, but my GP seems to imply that those texts are not within typical allopathic medicine’s testing abilities… She said that about hormones, too, so I’m a bit confused. But I’ll ask again! Thanks for the thoughts.
According to my exercise physiologist (and the writings of some others working with ME/CFS extensively), people with what we have should never do something that feels more than “somewhat difficult”. That’s supposed to be a good indicator of when you’re doing activity but it’s maybe okay vs. when you’re doing activity that may be hurting you.
If it helps any, I got to that awful point of being able to do less and less and less. Now I can do more and more and more. There is hope. And it wasn’t through forcing activity. It was through avoiding overexertion, paying better attention to my body’s cues that I was overdoing it, and respecting them more. I’ve been bed ridden pretty much full time for more than two years now, but deconditioning has not left me more incapacitated than I was (or, at least, the effect is far more tiny than the effects of the illness itself). Since lowering my activity level, I’ve been consistently improving, and it’s allowed me to now do far more than I was able to a year ago. I’m always pushing near the boundaries of what I can do, because I’m like that, but avoiding the things that are “somewhat hard” (almost all the time) has made a huge difference. I know that my “bottom” may be in a different place than yours, but for what it’s worth, I’m improving and activity is definitely far easier now than it used to be. And I’m dead certain it had nothing to do with doing more exercise. That just followed naturally once I was able to do more without straining myself. For me the increased activity is definitely the effect, not the cause.
I wouldn’t advocate people being still or inactive more than they need to be, but I also think it is far easy to underestimate the amount of rest needed than to overestimate it. That seems to be human nature. And I also know that I spent a long time thinking I was resting enough and still getting worse and worse, only to realize later that I had still be overdoing it pretty consistently.
But I totally understand the uncertainty. I felt that way myself. I know you’ve looked a little into exercise testing of the type Pacific Fatigue Lab used to do and the Workwell foundation is doing now (http://www.workwellfoundation.org/). I find their research very compelling. It seems clear that something about our energy production is just dysfunctional above a certain level. So going into that zone can cause a lot more problems than it helps. It seems like even the “graded exercise” people mostly agree on keeping below the level of activities that feel somewhat difficult. Likewise any level of activity that makes you feel like crap the next day. I think the trick comes in trying to fight the urge to push through with things because the instincts of our previous healthy lives tell us a certain activity should be easy or trivial, or that mild symptoms and a sense of difficulty shouldn’t be enough to justify stopping if we feel at the time like it would be possible to push through.
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