pain management at night?

My Lyme pain worsens starting in the evening, and greatly worsens 3AM-6AM. The hardest part is that I can't lay down, lying down even for a few moments makes the pain even worse. I've spent the last week trying to sleep sitting up. I'm told to just wait for the antibiotics to kick in (whenever that happens), and to "take melatonin" if I can't sleep.

I can't tell you how disappointed I am in the pain management options offered to me. Naproxen and Tylenol don't even put a dent in it.

I just want to sleep. I haven't slept through the night in weeks. It's in my shoulder - an intense burning, cramping pain, bone deep. It makes it impossible to sleep.

What do I do?

My GP is aware of Lyme but I can't speak with him for another week because he's too busy. It was the nurse that told me if melatonin didn't work for me, go to emergency.

Maybe he'll prescribe Gabapentin when I see him next, I'll mention it. Guess I just have to go through another week of hell. Told the nurse I was losing vision on the side of my face that's gone numb. She didn't seem too concerned with that either.

It's hard not to feel angry.

I've recovered, and I'd like to share some of my personal findings for those who may also suffer from the intense pain I got from Lyme.

1. Don't expect any help from your doctor for nerve pain.

Nerve pain is such that people have to take your word for it, so don't expect a prescription for real pain killers, because doctor's offices and emergency rooms have been flooded with requests from opiod addicts for years. If you have severe pain but don't have some obvious injury like a limb partly hacked off, nobody in the medical profession will care about what you're going through, and none of them will help you no matter how bad it is. You will have to help yourself, and this is why I'm writing this.

2. Limit movement - irritated nerves do not like to be stretched.

One of the problems I had with the nerve pain was an instinct to move around to try to get comfortable, because it felt like it was the position of limb / body part that was causing the pain. Movement will only make it worse. Keep it still.

3. Muscle pain, joint pain, and nerve pain all respond differently to different things.

I had all three. I found that cold was great for inflamed muscles, but terrible for joint and nerve pain. Heat was terrible for inflamed muscles, but good for joint pain, and had no effect on nerve pain. NSAIDS worked somewhat for muscle and joint pain, but not at all for nerve pain. If you have only nerve pain you may want to abandon the Tylenol / Naprosyn.

4. A large bean bag can be a godsend if it's impossible to use a bed.

Unlike a bed where you're limited to a few horizontal positions, a bean bag of sufficient size can allow you to find and rest in any position in three dimensions. I laid on a huge "yogibo" bean bag for weeks - it was far better than a chair, and I was able to sleep in it, even upright, when sleep was possible.

5. Fasting can reduce pain.

This was not intentional, I simply didn't have a choice discovering this - pain intense enough to prevent you from sleeping for days is also enough to prevent you from eating. And even if you force yourself to eat, the food doesn't digest but just stays in your stomach for hours until you throw it up. This was actually OK, because I discovered the pain got worse for a whole day if I ate anything.

I wasn't hungry at all, either, so it was very easy not to eat. This is the only thing I was actually happy about, losing so much weight - I lost 17 pounds in 20 days, pain apparently burns a lot of calories.

6. CBD can help.

You can get this legally in THC-free edible or oil form in many places now. It won't reduce nerve pain, but it can improve your mood and make you care less about it. This is no small recommendation, by the way, considering what I went through - it was the only medication I took that actually made a difference. Mentally I was as low as I'd ever been in my life, and this stuff bounced me back. I found it to be a powerful anti-depressant, and it reached its peak effectiveness in only a few days.

Careful if you're on doxycycline, though, because (at least at the dose I took) CBD ties up your liver and partially increases the antibiotic's effective dose as your kidneys will have to do more of the work of excretion - side-effects may increase, such as upset stomach. I'd also be careful with CBD and NSAIDS - some say they're OK together, but I doubt it.

7. Oxytocin / ketamine may be an effective non-opiod pain relief combo.

If you do find a doctor that cares about controlling your pain, oxytocin + ketamine might be an effective non-opiod treatment. Can't post links here, right? Just google it. I didn't try it myself, but the studies looked promising.

Have you had your cortisol levels checked? For pain to come at the same time each day seems to be a cortisol issue that's causing a chemical imbalance in your body.

I would also recommend some type of antihistamine. Your immune system seems to be causing the inflammation for some reason, and sometimes that can be when your immune system is attacking your body due to a mistaken identity, thinking that your tissue is an allergen.