Tag Archives: drugs

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LDN Day 17… CFS / ME is still in charge.

Ugh. I have zero energy. Every night these last few days with my Dad visiting, I have turned into a brain-dead, drooling zombie around 8 or 9pm… To the point that I can’t carry on a conversation, I can’t focus. Brain fog is a perfect description. I take so much longer to form my thoughts that people try to finish my sentences for me. And I am too tired to try… My sister asks, “what’s the plan for tomorrow?” and I literally have difficulty understanding her question, let alone coming up with a plan. I hit a wall of fog.

My sleep streak ended. Either 6 or 7 hours the last four nights, which isn’t necessarily that bad except the nights are so difficult with pain, sweats, chills, cramps — and I WILL NOT GET BETTER without 8+ hours/ night. See the Zeo graph below — constantly awake. Between 10pm and 2am, I dipped into sleep six times for no longer than ten minutes each time.

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Yesterday, I was very dizzy in the morning. The night before, I had been a bit scared, thinking I really overdid it, regardless of my careful intentions. I was in bed, chilled to the bone, so so so cold. And felt like I had the flu, of course. The next morning, like I said, I was dizzy for hours, but felt better after a walk with my Dad.

Today, I am immobile. I pulled a muscle in my back yesterday picking up a pot of water (god forbid I try to clean the kitchen!) and that, coupled with the hangover from socialising, has left me practically bed-bound. I woke up with a wicked headache, extreme pain from the top of my left skull, down the left side of my neck, down the pulled muscle on the left side of my back and into my hip. My throat has been sore all day, eyes puffy, runny nose. Ugh. I feel awful. I visited calmly with my family for two days and I’m paying for it. Barely have the energy to type. Definitely don’t want to call anyone. It probably won’t be much better tomorrow. I need unlimited massages for free… I need unlimited funds for weekly massages. For all of you out there dealing with muscle hell, massage therapy is a godsend. It doesn’t make it worse — I know it feels like someone pressing on your back would make you shriek, but, the next day, things are so much better.

This is an evil disease with no answers, no experts, constant pain, limited mobility, constant searching, limited hope.

Almost forgot again: I am grateful for my dogs that always get a smile out of me and, no matter how bad my day is, they make it better.

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LDN Day 12… Let’s talk about drugs, baby.

Last night I spent 10 hours in bed and got 7 1/2 hours of sleep. Not bad. My Zeo says I woke up 8 times in the night, which I hardly noticed – it was so much better than my usual 15 or 16 times. This is the longest stretch of over-7-hours-of-sleep-nights I’ve had in as long as I can remember. Ever? And I feel stronger. Is it the low-dose naltrexone? I am still skeptical. I started keeping my thyroid medication next to my bed, so when I wake at 6 or 7 or 8am, I take it and then tell myself I can go back to sleep for an hour. It has really helped. I have to take my thyroid hormones on an empty stomach and wait an hour before eating or taking other supplements, so it has always been the thing that gets me out of bed (when I’m not working).

Yesterday, was uneventful symptom-wise, which is wonderful. I did a bunch of housework and then relaxed. I was tired, but not exhausted. I had muscle aches, but nothing severe. My main concerns were: the painful tingling in my left thumb, my itchy, clogged ears, my neck pain, my mood, and my body’s complete lack of effective thermoregulation. That is nothing, believe me. There have been so many months when I would say, my main concern is not dying, so this is great. And I don’t want to jinx it by getting too excited. I still have ridiculous constipation and the breakout on my chest, but I’m sure these are transient problems that will go away once my body gets used to the diet change and pills.

Speaking of pills, I may as well give you the run-down on the prescription medications I have on top of the supplements. Bear in mind, most people with CFS / ME — or any of the other afflictions that cause muscle pain/ cramping, IBS issues, sleep issues, mood disorders etc. — are on many, many more drugs than I am. I have been told by multiple doctors to try steroids, anti-anxiety meds, anti-depressants, stronger pain killers, sleeping pills, muscle relaxers, anti-spasmodics, anti-convulsants… It goes on and on. I keep refusing. Not only do I have a sensitive system that seems to react to everything on the planet, I also have an addictive personality that cowers at the thought of any sort of withdrawal symptoms.

I take T3 and T4 for my thyroid, which doesn’t function anymore after I had radiation treatment to kill two toxic multinodular goiters a few years ago. I have an albuterol inhaler. I use prescription antihistamine eye drops and nasal spray every day because the optometrist said allergies were causing my gritty eyes and the ENT doc said allergies are causing my bothersome ears. I never had either of these symptoms before this year and I don’t really know if the Rxs are helping, but I keep using them. I have a prescription for an epipen (I’ve been in the emergency room five times for idiopathic anaphylaxis). I take a birth control pill continuously for my severe dysmenorrhea, which has landed me in the emergency room five OTHER times from vasovagal syncope. They call it fainting, I call it flatlining. Awful, terrifying experiences. I don’t need to be on the pill for birth control — it’s only so I don’t get a period and risk the collapse. I’ve had two periods in two years — when I was switching pill brands. Other than that, I take the low-dose naltrexone, of course, I use “Traumaplant” on my neck, curtesy of my Czech bff, and I always carry diphenhydramine and acetaminophen.

One of these days, I will post my back story (not a story about my back, but my history) and tell you about the doctors I’ve seen, the tests I’ve had done, and the horrors of what CFS / ME can be. But not yet… not yet.