Hi, I’m brand new here, and very frustrated. I have read some of the information on PrettyIll.com when I am able, and it makes so much sense. I am hoping for some guidance.
HI Elaine, Welcome! I’m so glad you found us! Because we tend to have about 200 symptoms (no exaggeration), I use a Symptoms Checklist to guide me. Can you fill this out and send it to me? You can find it here (with instructions about how to get it to me). http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e
Believe it or not, I’ve had EVERY SINGLE SYMPTOM you have described! My kids were headed down the same path. When I became sick (and participated in numerous clinical trials at Mayo), they were unable to help me. Rather than try to “teach them”, I’ve taken things into my own hands! I have a treatment trial for one of our main problems going right now. I am in Texas, if you can make it. I’m gathering names for the NEXT step, which will take care of many of our dysautonomia symptoms — the gastroparesis/chronic constipation/delayed gastric emptying will be the first symptom that you’ll see disappear. Yeah! If you can participate, that would be awesome.
Alternatives are participating in this forum, which can be some (free) help, getting a one-on-one consult (just click on “I want a consult” on the home page — scroll down and you’ll see it on the right), or waiting for publication of the results of the trials, and manufacturing of the medication.
Next, I’m going to hit our interstitial cystitis and I’d like to take care of that horrible insomnia we get. I’m not sure which one to go for first!
I think getting the symptoms checklist back to me (just follow the instructions) will be a great first step. When you return it to me, can you remind me that you may (or may not!) be interested in either of the treatment trials? I’ll get you that info then. OK? Thanks, my friend, and hang in, OK?