Wednesday, September 10, 2008
so, as another day passes.
What do I feel?
It's always something.
Apparently I pulled a muscle in my left side a couple of weeks ago. For any of you guys who played football it feels like I was on the bottom of a pile and I got sucker-punched in the kidneys a few times after the whistle was blown.
It only hurts when I move.
Other than that, It isn't a problem.
When you have CRPS, every little injury, every little pain, gets exaggerated. Because of your everyday pain, the "normal" pain of your CRPS that you deal with 24/7, when you get an additional source of pain, however small, it gets exaggerated tenfold.
Ok. I have a question for all you patients out there with CRPS/RSDS. Now, if you have kept up with the medical information in the last few years know that the definitions in our community have changed. (see CRPS or RSDS, WHICH IS IT? )
What used to be called Reflex Sympathetic Dystrophy Syndrome, RSDS, is now known as Complex Regional Pain Syndrome, CRPS, Type I.
What used to be known as Causalgia is now known as CRPS Type II.
So slowly over the last decade the medical community has truly made a concerted effort to make that changeover on medical charts and forms to the CRPS terminology and away from the RSD term. It is a slow process to be sure and the medical professionals who see the disease less often are more likely to use the old "RSD" rather than "CRPS". Understandable.
The problem though is that patients, especially the newer ones, are getting extremely confused. Quite a few are getting multiple diagnoses; one with RSD and another with CRPS. They then write to us at American RSDHope (and probably the folks at the RSDSA) and ask us which is they have? Or they write to us and say, "No, I don't have RSD, I have CRPS", or vice versa.
Now of course it is possible to have CRPS and not have RSD. Those people are the ones who have CRPS Type II.
But nearly every time people are told this it is because they have gotten conflicting opinions on the name but in the end, the same diagnosis. It leads to a lot of confusion for the patient.
So here is my question for all of you.
How many of you has this happened to? How many of you were unaware of the name change, here many years later? Any medical professionals out there unaware of it? (anonymity promised, I just am curious)
So if you would like to send in your comments here that is fine or email them to firstname.lastname@example.org
thanks, I appreciate it.
I hope you have a great night,
Tuesday, September 9, 2008
Does anyone else watch America's Funniest Videos? Do you see these people doing the most insane things and wonder "How has the human race survived this long?, How can people actually do these stupid things and still be alive?"
But most importantly, and the question I ask myself ten times a show, HOW DO THESE PEOPLE NOT END UP WITH CRPS????
I am not one of those people who sits and says "Oh woe is me ... why me and not that person", things like that. But my gosh, people fall off buildings, get hit by cars, have porches fall on them, and get run over by mini-bikes but then get up and walk, or sometimes stumble, away and are just fine.
Yet I hear story after story of CRPS patients who get it from everything ranging from stumbling their toe to spraining their ankle. Yes, there are much more serious injuries that can cause it; bullet and knife wounds, back injuries, etc., but many times our disease is caused by fairly simple injuries.
So, the question remains.
Am I the only one who watches this show and wonders this?
Or wait, should the question be, Am I the only one who watches this show?
hey, I admit it. I like the show. It makes me laugh. I am constantly amazed at how stupid people can be. I am not a big fan of the baby stuff but that is probably because I don't have kids.
Anyway, this is pretty far off topic. I just wondered.
So today I had my second day back at HBOT after my break. It went well. My body seemed to enjoy the oxygen boost of the last two days. My pain level is about what it was when I left just over two weeks ago. In other words, my relief held firm. I had a pain spike during the hurricane week but then it settled back down to the pre-storm level.
I am at a pain level of about a 7 but that includes all of my pain issues; CRPS, failed back syndrome, neuropathy, fibromyalgia, etc. My CRPS seems to be staying in my left knee to foot, my right foot, my eyes, ears, and that seems to be it right now. That is where it was when I left.
My allodynia is in a few more areas, but it was before we stopped as well.
I have some questions for everyone who has been through this treatment, who has had 30 or more treatments. Did it affect your allodynia? The sensitivity to touch, sound, vibration?
Did it affect your memory issues? Concentration problems?
If you have any input, please send it to email@example.com
Sunday, September 7, 2008
Did you miss me?
Just a little bit?
C'mon, you can admit it.
the bad jokes, the dry sense of humor, the information thrown in with all of that?
Ok, maybe not too much :)
After taking some time off to deal with hurricanes and to see what would happen if I took a couple of weeks off I will be going back to HBO Therapy tomorrow, Monday the 8th of September.
How many treatments have I had now? Just under 7 weeks; 33 treatments altogether. Most of my treatments have lasted 90 minutes each, a few were 60 minutes.
Many people have written to me asking what my protocol has been. I must stress that the exact protocol that Dr Spiegel and I put together for me was something he had never tried before. So it would not be prudent for me to share the exact everyday protocol because it isn't likely to be duplicated by whomever does your treatment.
I will be back doing my daily blog beginning tomorrow, Monday. I hope you will join me.
Please send in any questions you have regarding the procedure, HBO therapy, the treatment overall, etc. You can send them to firstname.lastname@example.org or leave a comment here at the blog.
If you have questions on CRPS I would be happy to try and answer them as well.
Wish me continued luck and pray for me.