Tag Archives: M.E./C.F.S.

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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.

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LDN Day 11… Thoughts on long-term illness.

Well, the Miralax didn’t work (called Movicol, I believe, in Ireland and the UK), so I took it again this morning. I’m pretty sure the constipation has nothing to do with the low-dose naltrexone. I think it’s from the radical change in my diet and all the supplement pills.

The good news is that yesterday was okay even after the activity of the day before. There were two bad spells: in the afternoon I was feeling very low, very lonely, very sorry for myself. Being home alone is very isolating when you feel like you can’t physically accomplish all the things you wished you could not work in order to do. Did that sentence make sense? I spent years wishing for an extended period of time off of work! I would do yoga and paint our rooms and read 100 books I’ve been meaning to read. I would have movie marathons all day, I would meet friends for lunch, learn to cook, learn Spanish, hike in the beautiful mountains with the dogs… I had to leave my job in May due to this evil illness and I haven’t done any of those things. I haven’t turned on the tv once during the day. I tried gentle yoga a few times before I realised the degree of my muscle atrophy and managed to injure myself repeatedly. I have met people for lunch a few times, but have always been laid up the next day, useless. I’m not sure where the days go, honestly. I used to work an average of 50 hours a week: during the slow months, 45 hours/week, during the busy months, I’ve worked 70+. Now, I am on the computer in the morning for a bit, I do laundry, I tidy up, I meditate, I try to get to the dog park and then it’s the evening. I don’t even talk to anyone on the phone because I don’t really want to talk about me and I don’t want them to ask. Yeah, yeah, same old, same old, how are YOU? The problem is, I don’t want them not to ask, either, because then I feel like I’ve been left to die. I know that’s morbid. It’s just interesting what I’m learning about myself through all of this.

The best I’ve felt in the past nine months was when my best friend came to visit from Ireland. She was a distraction and a counselor. She was full of energy and positivity. We talked about my situation, but so many other things, too. I guess I feel better when I’m not left alone with this spectre and I’m able to talk about different tactics going forward ~ in an analytical way, almost, as if it is obvious I am going to conquer this, I just have to find the right weapon. I expend a lot of energy trying not to lose hope and not be depressed and, yes, not be suicidal, so it’s nice to know that there are friends and family who understand, are sympathetic, but know that things will get better. Or pretend to. The first time I met the Good Doctor, she said, “Let me hold on to hope for you for a while. I know you will get better, so, if you lose all hope, just know that I am holding onto it for you.”

Anyway, yesterday there were two bad spells: the low, lonely moment in the afternoon and the flu in the evening. For about two hours, I was convinced once again that I was catching a cold: sore throat, headache, muscle aches, ear and nose issues. But nothing has changed this morning. I was in bed from 10pm to 10am, up repeatedly, crazy dreams, waking with my hands gripping the sheets in fists, jaw clamped down painfully… BUT, I managed to get 8 hours sleep during those 12 hours. That’s fantastic, I just have to learn to do that in less time.

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LDN Day 10…grasping at straws??

Yesterday, I tried to ever so gently push myself. I went to my sister’s place to visit her puppy, but was very careful about minimal exertion. My friend came to meet me there for a coffee and we had a mellow chat and I got to visit with her baby (a sweet, innocent, happy, smiley, perfect-skinned, perfect-immune-systemed, beautiful wee cherub, with no phobias, anxiety, depression, fears… I just want to protect her!). Again, minimal exertion with the visit. I came home, meditated/drifted off to sleep for 45 minutes, then forced myself to the dog park. I was careful again ~ walked slowly, frequent rest breaks. When I got home, I was achy and my muscles were buzzing, but I wasn’t a drooling, slurring puddle on the couch, so that’s good! I even threw together some soup. I sat in the hot tub and used my TENS unit (not at the same time). I had a bad sore throat and a headache in the evening and I felt like I was getting a cold (shocker). My left ear was bugging me and my nose was alternating between stuffy and runny. The nausea and pressure from constipation were causing problems (see my “Diet Day 3” post), but, I was really hoping I would sleep long and hard. No such luck. 11 hours in bed produced 7 hours of sleep. I was waking constantly, uncomfortable, in pain. Tonight, I might try to take a painkiller closer to bed time.

The best BEST BEST news of the last few nights? No drenching, shaky, feverish, malarial night sweats! If I’m feeling at all stronger, it’s because of no night sweats and a bit more sleep. I don’t think it’s the LDN causing the change ~ the night sweats had eased up the week before I started LDN. As far as I can tell, LDN = weight gain + trouble sleeping. And that’s about it.

This morning, I am not as muscle fatigued as I thought I would be. “Fatigued” is a useless word to describe it. When I crash, I have zero muscle strength and extreme muscle pain. It feels like all of my muscles have been pumped full of lead to the point of bursting. They ache, they’re difficult to move, when I do move, they may pull/sprain without warning. This is from the base of my skull to my feet. Awful. I’m feeling it today, but not to the normal degree after an active day like yesterday. I took some Miralax today. I’ve never taken it before, so I only took a half dose, but I’m hoping for some help. My IBS problems have a tendency to cause vasovagal syncope. I’ve collapsed with very low blood pressure and pulse and wound up in the emergency room five times. I’m praying there will be no cramping or pressure from the Miralax. My bff says it’s gentle ~ she takes it daily.

I’ll give you an update later.

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LDN Day 9… Just need the GOOD to kick in.

Last night, I got 8 hours sleep, thank goodness. But, I was in bed for 11 hours to achieve that because I wake up constantly throughout the night. I thrash about, grind my teeth, tense all my muscles, tweak my neck etc. But, I am thrilled with 8 hours, so I’m not complaining.

This morning things are much the same as every morning: swollen eyes, sore hands, stiff, immobile muscles. I am still having an acne breakout and constipation, which is getting frustrating.

And, just my luck: one of the stool sample vials was compromised (looked like the formaldehyde had leaked in transit), so I have to do the whole thing all over again. They’re sending me a new kit. Aahh!

Today I have two things on my calendar: going to visit my sister’s puppy and coffee with a friend. Normally, I wouldn’t be able to move tomorrow, so this will be a test to see if the LDN is doing anything for my stamina or muscle strength at all. Unfortunately, I highly doubt it. I feel no different. I seem to be the only story on the internet about LDN that does not proclaim it to be a miracle cure. Typical with my body. I want my miracle cure, dammit!

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The evils of CFS/ME

One of these days I’ll write a post about the background of my sickness and the evils of CFS/ME. Sometimes I wonder if I’ll ever be normal again. Beyond the obvious symptoms of this disease, there are some comparatively minor, but majorly disheartening issues that come along with it. Noise sensitivity, light sensitivity, LIFE sensitivity. I don’t want to be in crowds or in loud places or around a bunch of kids or in hospitals. The toll these places and stimuli take on my body is different — but just as severe — as physical exercise. Here are some recent examples:

My aforementioned trip to the dog park yesterday. I was weepy, breathless, irritated. Dogs barking and jumping on me caused me to wince and flinch. I avoided eye contact with everyone lest they try to make small talk or ask what kind of dog I have (a very tall Rhodesian ridgeback – he gets a lot of attention).

My husband and I went to see a movie. We sat in the middle, as usual, but the screen was too big for me to focus on, so we moved further back. Ten minutes later, we had to leave because the volume left me in extraordinary pain. Afterwards, I burst into tears. I felt rattled, shaken, headachy, fuzzy. I felt like I’d been in a war zone for ten minutes.

I went to a baseball game when my best friend was visiting from out of town. The noise was torture. The crowd, overwhelming. The heat, when sitting in the sun, made me feel faint. The chill of the shade made me feel sick. I meditated with my eyes closed to give myself strength, then basically went straight home to bed.

Today, I went to the grocery store. This place is huge. Bananas are half a world away from the strawberries. I went in with a list, worked as quickly as possible, but, it was crowded — families everywhere, carts colliding — I gave up eventually, went back to the car and let me husband check out. I thought I would pass out or puke or both.

There have been so many instances like this. It’s not anxiety or phobia or fear causing it, but, of course, now there is anxiety wondering how a situation will affect me. And wondering whether I will ever be normal again. Whether I will ever again have a high threshold for bright lights, loud noises, multiple conversations or big crowds. I want to be able to go to a concert or the cinema. I want to be able to watch fireworks or go to a party. I want to be able to go to a mall or a grocery store or an airport. I caught a sensitivity virus. Sensitivity to noise, lights, sound, heat, cold, foods, drugs, alcohol, chemicals, animals, touch… I don’t want to be a hermit or antisocial. I don’t want to live in peace and quiet! … I’m forced to.

If, one day, you see my screaming and dancing in a mosh pit at some extremely loud rock concert, just know it is a good thing: I am jumping for joy.