There are a lot of hits here now looking for CFS stuff. …Which is neat, but also very frustrating, since I have been slowly compiling lots of useful information, but am really not yet well enough to write it all up, or even compile a comprehensive set of links. So… someday, when I’m better, I would dearly like to compile together a bunch of the information I’m collecting about CFS, and some of the documents I’ve made to take to doctors, reviews of books that were actually useful (and warnings about the ones that were crap), etc. and post it here so that maybe someone else won’t have to do some of the work I did. In the mean time, though, I thought I might as well throw up at least a few of the things that I have been finding most useful, despite the fact that I’m not currently able to make in as complete a resource as I’d like, or write it up all fancy-like. Call it a step in the journey of unlearned perfectionism. Or call it Bob. I don’t really care.
Some of these I may have already posted here along the way, but I figured they were worth mentioning again in one place. I will also say that I’m certain there are TONS of other things out there that are also great but I don’t know about yet or haven’t been making use of personally. My research got a little cut off by the sudden drop in functioning. If anyone stopping by can think of something they found super useful or enlightening (and credible), feel free to leave a link in the comments. I know that a lot of these are obvious to anyone who has experience in the CFS world, and I don’t expect any of it to be ground-breaking. Can’t hurt to put it out there, though, just in case someone can use it. I’ve focused on the CFS side of things, but there is a lot of overlap in what’s relevant for CFS and for Fibro, so I’m sure these would be of use to people with Fibromyalgia too.
In addition to the Canadian Consensus Document and the Myhill book/site, which I have mentioned before (and have found very useful), I would suggest people looking for answers consider Teitelbaum’s site (and/or book) and the free program there to assess your symptoms and suggest treatments for them, and possibly this book by Alison Bested and others, which has a little about the practicalities of living with this (energy conservation, disability claims, etc.). I would say Consensus document for the physical overview and research summary (though slightly outdated), Myhill for some hard science and testing suggestions, Teitelbaum for more treatment suggestions (his approach and Myhill’s are very similar) and supplements, and Bested for a few odds and ends not covered in the other two. Much of the core information across different resources is the same, which says good things about it’s credibility. It does mean there is some overlap between good resources, though. This book by David Bell is a very good look at the likely physical process going on and causing problems, though it is very scientific (a plus for some people and I imagine a minus for others) and is not really intended to provide treatment suggestions so much as raw information. I liked it though, and was pleased with the purchase. Cannot say the same for many of the other things I bought. Myhill, Teitelbaum, and Bell are all doctors whose names seem to come up a lot in CFS circles. They’re part of the small group of people really working to make progress with this, and I would trust their judgment in most places.
For “resting” periods when I’m not supposed to be doing anything more than meditating or thinking, I invested in a few CD’s. There is a lot of actual science to back up the Health Journeys guided imagery CD’s if they are used correctly, and I’ve found this one useful. I am also really liking the self-hypnosis ones by Gurgevich. Both guided imagery and self-hypnosis give me a little more to focus on than strict meditation, which makes them feel like less hard “work” when I’m mentally drained.
This page was pointed out to me by someone, and though it was written by someone with Lupus rather than CFS, has been an easy place to direct people wanting to understand the concept of energy conservation. I was also sent a link to, of all things, a Golden Girls episode, but it actually does a really good job of bringing across what it’s often like to deal with doctors when you have CFS (the doctor in New York, in particular, seemed far too familiar to me). Sad that not much has apparently changed since the time of that show.
And just when you thought you had this sort of figured out, here is an article that mentions one of the “outbreaks” of CFS, where something triggered the illness in multiple people at the same time.
Tips for the Newly Diagnosed:
1) Learn as much as you can on your own, because sadly in 2011 as I write this, unless you get in to see a specialist who deals almost exclusively with CFS (really – not just a regular rhumetologist or anything) you will probably end up knowing more about this than your doctor does.
2) Make sure any sources you’re consulting are credible, and double or triple check their information against other sources you also find credible. But don’t rule anything out because it focuses on a more naturopathic approach, herbal treatments, diet changes, and non-standard tests. Supplementing various pieces of the puzzle is huge in treating this stuff, and comes with very scientific backing.
3) When you get that gut feeling that you are probably doing more than you should be, STOP!!! Rest. No matter how bad you think things are already, you can still get worse. And you don’t want to.
4) Pride is for suckers. Learn to accept help when you need it, and to decline invitations that you really can’t handle the strain of accepting. Consider the idea of adjusting your activities to conserve energy (sitting down when you need to, or even having someone push you in a wheelchair if needed), even when it draws a little extra attention to you or makes you feel silly/embarrassed (this is hard. I know).
5) Your energy is now precious, and limited. Practice spending it only on the things that really matter to you. Cut down expectations on yourself to do everything as fully as you might otherwise be inclined to.
6) I would also add in that anyone bedbound for more of the day than usual should spend some of what energy they have doing range of motion exercises, particularly for the knees and shoulders. I thought that I was okay since I hadn’t been out of commission for that long, and because I was still moving around some. Not so much. So I would advise anyone in the situation I was in to start early with those things to prevent problems rather than waiting until the joints start cracking, grinding, and doing things they shouldn’t. Just don’t push it so far that you’re wiped out the next day. You may need to cut out other activities to make these possible, but they’re important.
7) I would also suggest asking a doctor about any organizations in the area that might be able to help provide services (in home physiotherapy, meal delivery, housekeeping services, assistance with wheelchair costs, etc.). It seems like there is a lot out there in many areas that people just don’t always think to connect you with.
8 ) If your brain is shutting down sometimes, try lying down more. It tends to help (which makes sense, as often this seems to be a blood flow to the brain issue).
9) If your short term memory and concentration are shot, try a soft-shell binder (lighter than the hard kind) with dividers in it so that you can jot down notes for yourself in whatever sections are relevant for you. Mine has to-do lists, shopping lists, phone numbers, things to mention to doctors, etc. I keep it beside me with a pen clipped on, and it has done a lot to prevent me from writing the same note to myself fifty times over and then never consulting it because I’ve forgotten it was there.
10) Trust your gut. You are not crazy. You really are ill. And you’re not alone in this.
Edit: Updated with a comment below with a few additional resources I’ve found useful.