Just an update: I am on day 48 of the elimination diet, day 17 of no supplements and day 9 of the official two-week wash-out period. I feel awful. I feel like I have a fever. I feel like I have the flu. I feel like my lungs are full of black smoke. I feel like my brain is inflamed. It hurts to move my eyes. My neck is constantly painful and my head started to hurt very badly last night. I need a pain killer that doesn’t cause me respiratory distress. I cannot drink black tea at all anymore. One of life’s last pleasures taken away. I am not eating any aspartame or Splenda. What I continue to take is my probiotic, fiber, Colace, inhaler, birth control pill, antihistamine eye drops and nasal spray, tylenol when I can’t stand the pain and once in a while some vitamins. I think, during this last week of the wash-out period, I will try to hold off on as many vitamins and meds as possible. Who knows? The B-complex vitamin could be causing my headaches. How do I figure it out?
I’m still not leaving the house, I’m still so much worse than I was a month ago. I haven’t been able to do my laps around the house. My doctor thinks I should get a brain MRI and a tilt table test, but I don’t want to do either one. Basically, I’m scared of everything. I now live my life trying not to make anything worse. After being out of work for five months, I’m ready to tackle the disability mountain. It could take years or I may not get it at all. I am scared of losing everything. Have I mentioned that I cannot believe this has happened to me? I would give anything to feel normal again. ANYTHING. I am still in complete disbelief that someone won’t find the one thing to fix. I’m going back to the infectious disease doctor to ask about things I might have caught from critters my dog caught: birds, squirrels, rats… Grasping at straws.
Get the tilt table test! That test if positive…u can get on the right med and it will alleviate a lot of the symptoms! I had the test. Its not fun..but it was positive and now I have a medicine that can stop and lessen the frequency of episodes. Drenched in sweat nausea feeling like you are dying… that is how neurocardiogenic syncope feels. Most people with ME have it. That is a must do test. It can change your life!
Also.. have you been tested for Lyme disease?
Here is info on neurocardiogenic syncope http://www.ncbi.nlm.nih.gov/pmc/articles/PMC506859/
I have this. This is more debilitating than any other CFS symptom. I take midodrine to help control it. Next time you feel that feeling that you are going to die, lay flat and elevate your legs on pillows or even if your husband can help you. If that helps the symptoms subside within a few minutes, then you probably have it. Things you can do on your own to help prevent an episode are stay very well hydrated, drink a lot of water, water with lemon is best if you cannot drink gatorade. Also eat more salt, and snack frequently so you don’t get low blood sugar. Avoid getting overheated, even being outside in the warm weather, avoid standing in one place for too long. You can also try compression socks like diabetics use, that helps keep the blood from pooling in your legs.
Exercise intolerance is a symptom of ME. You might be pushing yourself too hard, even though it feels like you aren’t doing more than you can handle, you don’t feel it until later in the day or the day after, and then the “flare” lasts for days or weeks in response to the over-exercise.
I mentioned Lyme disease because it has a lot of symptoms similar to ME. The Western Blot test is more accurate than others, yet still only 60ish% accurate from what i have read. LOTS of false negatives! I still believe I have Lyme even though my test has been negative twice now. I’m just trying to give you some things to explore, that you may have to ask your doctor about.
I understand what you mean about only focusing on not making anything worse than it is. I do that too. I even have to take breaks from doctoring in order to regain my strength to go back and start more testing and exploring again. I’m doing that now, taking break from doctoring. Even that can be too much. It’s hard enough just to keep up with daily tasks. As far as disability, don’t give up on that. I am sure you have read that it can take years, and it can. BUT, if you have a doctor that is on your side, and has good medical notes, you may get approved sooner. I’m one of the lucky ones. it only took me 2 attempts at applying for disability. I recommend http://www.Allsup.com to apply for disability rather than a private lawyer. They have a good success rate. You can check out their website. It is hard to go through, lots of answering questions, lots of paperwork that they do, lots of doctoring and lots of waiting, but … the sooner you get it started the better. My entire process from application to approval took 7 months.
This all sounds so familiar. And you’ve expressed it really well.
I’m so very sorry that you’re going through this. This illness is such a concrete slab against the head out of nowhere, isn’t it? Suddenly your whole life is different in the blink of an eye. I am thinking of you. At least know that there are lots of us out there who can relate to everything you’ve said. It’s an awful thing.