No two people's ME is the exact same and so far we're no where near close to having a treatment that works a sizeable percentage of people with ME. General treatment advice centres around pacing to avoid making the illness worse and symptom management.
I thought I'd share what I've tried, what has worked for me and what hasn't in hopes of helping someone else with the illness.
I thought I'd share what I've tried, what has worked for me and what hasn't in hopes of helping someone else with the illness.
First, symptom management:
Headaches: These were one of my first symptoms. I had a headache for 2 months that I was able to dull but not relieve with the maximum dose of paracetamol. I then went on 20 mg/day of amitriptyline. That worked wonders. I now get headaches 2-3 times a week, but they can usually be sorted with a single dose of paracetamol. If that doesn't work, I add naproxen (see below) and then the headaches usually decide to leave me alone.
Nausea: I take domperidone (10-20 mg) when my nausea is bad enough to either stick me in bed, prevent me from eating or both. It doesn't eliminate the nausea, but it minimises it enough to let me rest and eat.
Pain: I get muscle pain, joint pain and bone pain. All of those are made worse in the heat and of course flare up if I overdo things. I usually treat the muscle pain with heat, which provides some relief. I have 500 mg naproxen (similar to ibuprofen) tablets which I use to treat bad joint pain. The joint pain is particularly disruptive when it is in my fingers or wrists. I've learned to do many things one handed, as a result. I take the naproxen with lansoprazole to protect my stomach from the affects of the naproxen. The bone pain is probably the worst kind of pain. I didn't even know bone pain was a thing pre-ME, but I assure you, it is. I've not yet found anything that works remotely well for that kind of pain.
Sleep: I'm lucky to not have persistent insomnia as part of my symptom complex. I do have trouble sleeping when I'm in a bad crash, so I keep 20mg tablets of zolpidem on hand for those times.
POTS: Getting my Postural Orthostatic Tachycardia Syndrome (POTS) diagnosed and treated was probably the single most helpful treatment for my ME. Many people with ME also have POTS or Orthostatic Hypotension. It's definitely worth getting tested for them. Finding good treatments for my POTS was very trial and error. My GP and I made extensive use of this wonderful guide in trying treatments. I'm currently using compression stockings, a high water and salt intake, 80 mg/day modified release propranolol and .1 mg fludrocortisone to treat my POTS.
Vitamins and Supplements: I take a multi-vitimin with iron and a high dose of vitamin D each day. People who don't get out into the sun much, should supplement with vitamin D, particularly in the winter. Low vitimin D levels can cause additional pain. Supplements I've tried with no success: Co-enzyme Q10, Evening Primrose Oil, Joint Complex, Magnesium tablets, and Vitamin B12 tablets. Some people find that Magnesium or B12 injections help; I may try that eventually.
Pacing tools
Pacing chart: Early on, I made daily use of a pacing chart to help me schedule in rest breaks and sensibly spread out my energy. I made my own chart which can be downloaded here if you'd find it helpful. I don't use the chart as much any more as I tend to naturally think about pacing when I plan stuff. I do still use it if I'm doing something that is going to stretch my limits that I have to plan very carefully.
Fitbit: I started using a Fitbit (basically a fancy pedometer) to give me an objective measure of my energy output. It syncs to an online software system where I can monitor my steps and see daily, weekly, monthly and yearly graphs. It was hugely helpful in setting an objective baseline (in my case about 3,000 steps a day). It lets me track my steps throughout my day, so if I'm at 2,500 steps by 11 am I know I need to really slow down. I can also track my baseline over time and notice when my mobility is slipping or when it's improving. I also use it to track how many steps specific walks take (ex. to the bus stop or the local shop). That is really useful information in planing my days.
Heart rate monitor: I often wear a heart rate monitor with the alarm set to 120 bpm. When the alarm goes off it is a reminder that I'm doing too much and need to stop to rest. For a lot more about using heart rate monitors to pace, see Occupy CFS's excellent series on it here.
Aids: There are a lot of things I want to do but my body just can't manage on its own without significant payback and the risk of relapse. Things like walking along the seafront, taking a shower or going grocery shopping. So, I do my best to give my body the help it needs. I use wheelchairs fairly often. I have a manual chair that works well when I have someone who can push me or when I need to transport the chair in a car (it folds up and is lightweight). I'm a part-time user of a powerchair and that has drastically increased my independence and mobility. Without it I couldn't do my own grocery shopping, go get coffee with a friend or run errands. With it, I can. And that is huge. I have a blue badge which means I can park in disabled parking spots. Again, that massively opens up what I can access. I use a shower stool to make showers more doable. On the rare occasions I manage to make myself dinner I always sit down while cooking. I really hate that I need all these tools at 21, but if they help me keep bits of my life that I'd otherwise have to give up, they're definitely worth it.
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