Friday was my 5th anniversary of getting CFIDS. On March 1, 2002, I was my usual self: energetic, active, and healthy. I woke on March 2 with a horrible sore throat, feeling exhausted and achy all over. I thought I had the flu, but...well, you know the rest.
Over the years I've had some pretty dismal anniversary days. There was the first one, when I had been terribly sick for a full year and still didn't know what was wrong with me (I was diagnosed soon after). At my two -year anniversary, I was in my worst crash ever and feeling very depressed. In year three, my own poor health was secondary to the fact that my oldest son was now officially diagnosed with CFIDS, too. Our whole family was struggling to come to terms with that unthinkable situation. By March 2 of last year, Jamie was starting to improve, thanks to Florinef, but it was becoming clear to us that our younger son, Craig, was also developing CFIDS.
This fifth anniversary is much better, but with some bitter undertones. Florinef has caused such a dramatic improvement for Jamie that he's back in school full time and able to live a mostly normal life (as long as he takes his medication). We are now quite sure that Craig has CFIDS but are hopeful that Florinef will help him as well (he's home sick today - again). As for me, I'm certainly in better shape than in previous years, and CFIDS research in the past year has offered plenty of much-needed hope. The Valcyte trials and my own personal trial with it are particularly exciting to me.
Behind this new hope, though, I'm recalling that Dr. Bell and other experts often cite five years as a critical turning point. The common understanding is that the very few recoveries from CFIDS that occur happen in the first five years and that almost no one recovers after five years of CFIDS or more. So, I've now crossed that line. Of course, the latest research on genetics and viral infections offers new hope that even the top CFIDS experts couldn't have predicted a few years ago.
Five years seems both too long and too short. In some ways, it's amazing to me that I've been sick for five whole years of my life. At other times, it's amazing that it's ONLY been five years because my "old life" seems so long ago and far away.
My family and I keep pushing forward, trying to focus on one day at a time, and remaining optimistic about the future.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
My fifth anniversary was very hard, too. But I am so happy that Jamie is doing well, and you are hopeful about the Valcyte!
ReplyDeleteCongratulations for the improvement you've seen in your son. And for beginning a blog. I feel your concern about Craig (another son?). I have concerns about my daughter as well, and I now understand my mother needs to be forgiven in a new way since it's really clear to me, so many years after her death, she was also afflicted with POTS (postural orthostatic tachycardia syndrome).
ReplyDeleteI know how much it helps to talk and write about what's happening as we learn of our bodies' limitations due to these conditions. Thanks for blogging.
I'm among several in my family with the type of CFS florinef may help. However, its common and expected side effects were overwhelming to me, so I didn't take it when diagnosed back in 1997/1998.
Another problem with florinef is it causes the dumping of potassium, which could become life threatening, especially to those of us who dump fluids and minerals too easily already due to our conditions. Every stress, even walking and thinking hard, causes loss of minerals, and we lose them throughout the day.
Dr. Rowe, researcher and pediatrician at Johns Hopkins University and major researcher of CFS as related to Orthostatic Intlerance, the condition for which florinef is usually prescribed, has prescribed prescription-time released potassium (K-DUR) with florinef to help to overcome the loss of potassium. Over-the-counter potassium may be used as well, but must be taken several times a day (RDA=1,500 mg, comes in 99 mg tabs, about all the body can handle at one time).
These kinds of details take a long time to filter to doctors (especially anything about supplements), but I hope you already know about it.
I live in Maryland, a neighbor to Delaware. Do you belong to any support groups for cfs? I help lead Northern Virginia CFS/FM/OI/ME Support Group from my home near Annapolis through telephone and the internet. Our group has no member fees, just non-deductible donations for printing, etc., for materials.
Check it out at:
http://www.geocities.com/cfsnova
Lots of resources there.
A practitioner of chinese medicine in Bethesda has helped me make the most improvements from symptoms I've suffered all my life, including cognitive improvements. He's on our practitioners list
thanks for listening.
Toni -
ReplyDeleteYes, my sons' pediatrician and I have both consulted with Dr. Rowe many times, and my boys both take the potassium supplements. Dr. Rowe is amazing - we owe him so much! Florinef didn't have much effect for me (as is true for many adults, according to Dr. Rowe). After seeing how my sons responded to various doses, I'm convinced Florinef doesn't work for adults simply because the dose isn't high enough, but higher isn't considered safe. I take licorice supplements for the same properties (it helps you hold onto more salt & fluids), but it's helped only moderately.
We have no active support group in Delaware - I'll definitely look into yours! Thanks for your comments -
Sue
Sue,
ReplyDeleteSo glad to read you've seen Rowe. Rowe doesn't see many adults, so there's a bit of luck, due probably to your sons, which is not lucky. He's rare in prescribing potassium, but that'll catch on in 10 years or so, I hope. And I agree Rowe is great.
He told this story to the Northern Virginia group years before I joined, but I saw a video of his presentation, a story worth remembering and retelling, and maybe you've heard it:
Dr. Rowe and associates were talking to many family members with Orthostatic Intolerance (OI) about participating in research on OI. The family's grandmother wanted to know what all the fuss was about.
They explained to her that, for instance, members of her family must lie down for 20 minutes after a shower. The grandmother complained, "Well, so what? Everybody knows you have to lie down after a shower!"
That story and Rowe talking about his patients who make you feel like you're on a boat, as they stand next to you gently rocking back and forth as an accommodation to OI, as I've done all my life, are my favorite Dr. Rowe stories.
Look forward to your checking out our ever-improving website, maybe joining for our 5 or so informational emails a week?
toni