Post Exertional Malaise is my most annoying symptom. I had to stop exercising during a flare 4 months ago, and trying to get myself where I can go for a swim again is highly frustrating, because even a 50m swim will use up all my energy for the day, so I need my husband to do everything else for me. Almost impossible to coordinate. Everything else I can mostly sort out on my own.
Here are my top coping strategies, in rough order.
- Pacing, aka counting spoons. Rest little and often in between bouts of activity, and you will be able to do more. If you stop overdoing, you will start to heal and feel better.
- Learn to say NO!
- Exercise, even if it hurts during. If you hurt more afterwards, you did too much – reduce by half next time. If you are more tired the next day, you did too much – reduce by half next time. Start small and increase only very gradually. Try and do some every day, unless overtired. D-ribose may protect you a bit from overdoing. Deconditioning is what causes disability IMHO
- Keep a journal of symptoms and treatment, so you know what works and what doesn’t for the future.
- Treat the symptoms. If one particular joint hurts, you probably injured it, see a doc. If it’s generalized pain, it’s probably fibro.
- Sleeping shouldn’t hurt (much). If it hurts to lie in bed, you need something softer like a memory foam topper.
- Massage is wonderful… If you have the right therapist. If it hurts much, get a new one. A good one can take apart your trigger points, reducing pain.
- When pain is driving you nuts, have a hot bath with 1 cup (or more) Epsom salts. Keep in mind heat is tiring, so this is best done before bed.
- When overwhelmed, go find a dark and quiet spot to rest. TV is not real rest! Nor is having a conversation
- Eating sugar will make you tired, guaranteed.
- Caffeine energy is fake. Don’t, you’ll feel worse.
- If you are stressed out or depressed go see a therapist. No, I am not suggesting this is all in your head, but your head can help or hinder.
- Meditate! Or do yoga, or other mind-body techniques. Your body will start to relax. You have no idea how tense you are until you feel yourself relaxing. Tension causes fibro pain.
- Don’t rely on your doctor to solve this. The best way to cope is take control. The changes that make the biggest difference are all about lifestyle… all the drugs these days just treat the symptoms and give crappy side effects.
- Supplements can be almost as powerful as drugs, if you get someone really good to prescribe. Go find the best in your city. One day I’ll write a list of what works for me, but it’s really really long! In the meantime, here’s a good spot to start.
I could go on, but that’s enough for today…
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