Tag Archives: symptoms

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LDN Day 5… still no sleep

Ugh. I am so tired. I had another terrible night. I took the LDN and was in bed at 10pm and didn’t get up until 9am. In 11 hours, I managed to get 6.5 hours sleep. I woke up constantly again. (Check out the Zeo graph. “W” at the top = “wake”) I had to go to the bathroom constantly. I was uncomfortable and in pain. I had crazy dreams. I was sweaty, but cold. Extreme hunger finally forced me out of bed. Ugh.

There’s this thing I do in my sleep that always wakes me up. I wake up with all of my muscles tensed from head to toe, my back in an arch, my hands in fists, my arms and legs rigid, my jaw clamped down so hard it feels like my teeth might break (and they have). I have no idea why it happens or how to stop it, but I am always afraid that I am going to throw my neck out while doing it. I have degenerative disc disease issues in my neck (cervical spine). When my neck goes out, it is the most acute pain I have ever experienced in my life. I am paralysed when this happens. I have been seeing a physical therapist for years with minimal progress. She said I had the worst case of hypermobility she had ever treated. I have an at-home TENS unit (transcutaneous electrical nerve stimulation) which I use every day. It helps me not have to use pain killers and I basically stopped going to the PT, because now I have the equipment they use at home. Today, as I type this, I have it zapping my back and neck ~ I tweaked something in the night with all the tensing and thrashing about.

I haven’t had a “good” day since the day I started LDN. I have felt fluish and chilled every day this week. The pain in my back, shoulders and neck makes it difficult to do much ~ even walking up and down the stairs. My chest is tight the past 5 days and my nose is either running or stuffed up. My hands ache. My left thumb has been virtually useless for days because there is a painful electric jolt that runs down it every time I press it into a certain position. After lunch yesterday with my friend, I had planned on going shopping for groceries and supplements for the new regimen, but, after two hours of visiting, I was weak, felt faint, my muscles were buzzing, my concentration was totally shot. I was having such a hard time focusing on our conversation and the responses I should give… That doesn’t happen a lot to me. I have had some cognitive disturbances with memory, but having to put so much effort into focusing on what you are hearing and what you should say… that’s a new one.

I would love to tell you about the stool sample kit that I have to do, but I won’t. It might be the most disgusting thing I’ve ever dealt with. Well, that’s not true. I’ve dealt with more disgusting things (work in an elderly care facility and restaurants long enough and you see things you don’t want to). In fact, I’ve experienced more disgusting things just surfing the internet.

Today, I am determined to go to the dog park, the pharmacy and the grocery store. I’m determined to finish the laundry and laugh and PLEASE GOD get a better night’s sleep. Maybe I should take a melatonin…. but I hate mixing drugs. Stay tuned.

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LDN Day 4… a visit to the Good Doc

Last night, I didn’t feel great: My IBS was acting up, making me feel passy outy. I had a sore throat, chills, was achy, was sure I was getting a cold (but I’m sure I’m getting a cold about once a week when the flu symptoms are acting up). I went in the hot tub to alleviate the chills, then, an hour later, took a shower, then, an hour later, took an epsom salt bath and went to bed. Couldn’t stave off the chills until I made the bath about 110 degrees. I went to bed at 7pm, but didn’t go to sleep until 11pm. I again took the LDN at 9:45pm and still had a bit of a tight chest, but nothing scary. My night was very tossy turny, as usual, and quite sweaty and feverish. The night sweats had completely gone away there for a few weeks, so I need to get back to that. When I sleep without sweats, it changes everything. I “slept” from 11pm-9am. 10 hours, but I only got 7.5 hours sleep. I was awake from 1am-2am, 5am-5:30am, 6am-7am and multiple other times briefly throughout the night (so said my Zeo). It makes me so crazy. I just want 8…9…10 hours of deep, uninterrupted sleep.

This morning I feel okay. Very stiff, but that is usual. My hands aren’t quite as swollen and sore. My eyes are still puffy. I have a sore on my tongue ~ something I’ve never experienced before. Hopefully it will go away if I ignore it.

Maybe you’re reading this for the LDN info and you didn’t sign up to hear the other stuff, so,for you: I feel no different than before I started on LDN 4 days ago (probably worse, actually) and, now, here is some fun other stuff I’m doing to help my symptoms:

My new Good Doctor has me starting a new regimen today. I have to do a 3-day stool collection (that’s probably why my IBS is acting up ~ at the thought of a poop collection!). Today, I am also starting a new diet and going shopping for a bunch of new supplements. The diet is: absolutely no grains of any kind, no dairy, no red meat, minimal amounts of processed foods and sugar. She said, if you can’t grow it, don’t eat it. I already know I’m going to break that rule. I will be strict about no grains (no granola, no rice, no popcorn! Oh my!) and no dairy, but I’m sure I’ll be using ketchup and mayo etc., buying tinned soups… those are things I can’t grow, right? Anyway, I’m trying to figure out what to eat for breakfast and it is stressing me out. Maybe I need to buy a juicer. Gross.

I’ll tell you the supplement details later in case anyone wants to try them.

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LDN Day 2… not as bad

Yesterday, in the afternoon, I felt much better. I cleaned my room, did laundry, played with the dogs. My temperature regulation was all over the place the whole day. Hot flashes and chills. I went for short visits to the hot tub numerous times to get my temperature up (yes, it’s August). The hot tub might have been the best purchase of my life. I never realised when I bought it how important it would become to my healthcare regime. Deep bone chills are one of my most debilitating symptoms.

I took the LDN again last night at 9:30pm. This night went a lot better. I had a tight chest and a bit of a drugged feeling, but nothing like the first night. I also had weird cramps in my calves. I went to bed around midnight and didn’t have a good night’s sleep. I have not had drenching night sweats in about three weeks (thank god), but last night I had some sweats ~ not terribly drenching, just my face and neck. I actually felt cold most of the night and kept putting the duvet over my head. I also felt like I was awake the whole night. It seemed as if I were floating in an ocean, with the water just covering my body and face and every few minutes I would break the surface of sleep and be aware of what was going on in the room. All I want is to sink deeply into that ocean of sleep. That’s all I’ve ever wanted my whole life ~ to be able to sleep deeply, not be woken up by every twitch and sound, not be on high-alert in my dreams so I can make sure I’m ready if something happens… wake up rested. Most people would take a sleeping pill or an anti-anxiety, but, that’s something else you’ll learn about me ~ I don’t take drugs if I can possibly help it. I have to be in a pretty big crisis to give in and take a pill. I woke up at 5am starving. I made myself go back to sleep for a little bit (or, more accurately, lie in bed for two hours trying to get to sleep, reading etc.), but hunger forced me to get up. Interesting side effect. In the end, I only got 6 hours sleep. 11 hours in two nights is not enough for me and I am feeling the effects. I am very tired, muscles are achy, my back is sore. This morning, as I write this, my temperature is still all over the place. I got out of bed chilly, but, minutes later, I got so hot I had to take off layers of clothes

But, I am elated that I didn’t have a serious reaction to the LDN last night. That’s good news. I’m going to the CFS clinic this afternoon. I’m sure I’ll feel like it’s a wasted trip. Stay tuned.