Thursday, July 10, 2008


Today was Treatment Day Eight. 

Some of you were wondering if you missed a day yesterday. No. I was a little tired and had to get out some stuff regarding the next meeting for the Palm Harbor/Tampa Bay Support group as well as the Orlando Group's first meeting and by the time I did that. I was wiped out. 

Dr Spiegel, Susan, and many others whom I have spoken with along my HBO journey have advised me to try and keep my on-line and off-line activities to a minimum in order to get as much rest as possible. As most of you fellow CRPS patients have been told at some point, the majority of CRPS patients tend to be Type-A personalities and I am no exception. Taking it easy is not a simple thing to do on the average day despite the pain and exhaustion, not that I am able to do tons but correspondence from the RSDHope organization does keep me busy. 

Plus, because of this disease and the pain I have dealt with for more than 3 decades, I have always approached my days in such a way that I have to get as much stuff done as early as I can because once I stop for the day, I am done. Getting my body, and sometimes my mind, going again is not an easy thing for me to do. I liken it to a ball rolling downhill. I have to keep my momentum going. Petra, my better half, will always be after me to slow down or sit down and take a break from doing something and I will tell her, "No, I want to finish it now." I am sure she thinks I am hyper but the fact is I am afraid if I don't get to it now, I won't be able to get to it later. 

So, sitting around and getting lots of rest is extremely difficult for me. But I realize that this is an expensive treatment, that is a month of my life I am devoting to it, that my Dr and his staff are devoting to it, and I cannot waste this chance to be better by not resting, and by not making sure I take advantage of it by doing what I need to do.  

Still ... I can be slow to remember this sometimes. I feel like I am playing hooky. 

Yesterday I was reminded of this, the rest thing, when a friend of mine whose mom has been through this treatment for her CRPS, sent me his tips for getting the most out of it. Jason has his own RSD Blogsite where he posts articles relating to RSD/CRPS,   and he and I have become friends through first, our affiliation with American RSDHope and his blog, and then second by his mom going through the HBO and my doing it, and third, he is going to be involved with the new Orlando support group down here. 

The tips he shared, some of which I have already shared with you, are as follows;

- Drink anti-oxidant juices
- eat really well
- Take grape seed extract pills (300 mg twice a day) during this treatment
- Drink plenty of water, as much as you can (but not a lot before you go into the chamber since you don't want to have to take a urinal inside with you unless you have to)
- Drink not just plain water but add a "pinch or two" of sea salt, there is something in sea salt that will help this process.

Thanks Jason!

I wanted to mention a couple of things before I forget them! I know, it would be shocking for a CRPS patient to forget something. I always say I bring Petra, my SO, along with me to places as my "memory". I once had an amazing discussion about memory and CRPS patients with a very brilliant Dr. Petra, and other SO's I am sure, would get frustrated at what I would, and wouldn't forget. How could I forget these things but remember these other things? Was it because I was paying attention to one and not the other? Or because I wanted to remember one and not the other? 

For me, and apparently many CRPS'ers, it seems retaining numbers or things having to do with numbers, is fairly easy. Dates, phone numbers, baseball stats, football stats, etc. But things that use the other side of the brain, ideas, faces, colors, places, directions, etc., forget-about-it.  According to this Dr., it all had to with the part of the brain that is affected and attacked by CRPS. It was amazing and has helped me a lot. I now try to equate as many things as I can to numbers, to try and help me remember.

Ok, what was I saying?

Oh yeah. a couple of points to share.

1) On the question of whether divers enjoy the same benefits as people in the HBO chambers? The answer is no. They don't breath pure oxygen but rather a mix of gases. 

2) It is recommended that you take vitamin E, 400 mg, after you exit the chamber each day when you are undergoing treatment.

3) I think I touched on this before but it makes a big difference when you eat something like fruit within 30 minutes after exiting the chamber. Think of it as being akin to hypoglycemia, or low blood sugar, when you exit the chamber. 

4) If you want to subscribe to this blog, so it arrives in your email box directly and you don't have to come to the webpage to read it, just go to the bottom of the page where it says "SUBSCRIBE TO POSTS (ATOM)"

5) If you would like to leave a comment about the blog, please feel free to do so. 

6) If you have a question about CRPS, or a question about HBO, you can drop me an email by sending it to

7) If you are a current or past HBO patient with CRPS and would like to share your experience, send your comments either to the blog, comments section, or email them to me.

8) If you haven't hugged your loved one today, please do so now.  

(Petra wanted me to throw that last one in there) 

Someone who happened by the blog was unfamiliar with CRPS and asked me what it was like, what it felt like. We have an answer to that on the RSDHope website; WHAT DOES RSD/CRPS FEEL LIKE? 

So how was my HBO treatment yesterday and today and how am I feeling? 

I feel I am progressing. I can definitely feel the ups and downs of the treatment.  Ok, I couldn't help that. I can though feel my pain get worse some days and a little better others. Yesterday was a better day than today. Today my feet have been burning a lot, throbbing is higher. 

It is much more difficult to track a patient such as myself because my CRPS is full body. The same held true when I had the low-dose ketamine infusion. When you have patients who have CRPS in just one limb it is far easier to track the progress of a treatment, compare the "bad" limb to the healthy ones, feel it getting better/worse, etc. 

When you have it full body you can have one part of your body feel a little better one day and a different part feel worse on the same day. It is frustrating not only for the patient but also for the treating physician. 

But I am in this for the long haul and I know that there will be ups and downs along the way, especially during the first couple of weeks. We are projecting 20 treatments of 90 minutes each. So far I have had 8. So I have a long way to go. 

What questions do you guys have?

1 comment:

K said...

As a fellow RSD'er and proud member of RSD Hope, I wanted to tell you that I'm loving this!
I have a great sense of humor and, I must admit this aloud, that is what has me enjoying everything you write as it relates to your life. You spiced up, what should be a boring newsletter, and made it not only informative, but fun as well.
One last thing, you say you're no Dr. Seuss, but I MUST disagree! I believe you are much better and will be sharing your rhyme with my hubby. I'm quite sure he'll laugh as much as I did!
I look forward to following your HBOT saga. I said one last thing up there when it should read, one next to last thing! LOL