Friday, August 15, 2008

HBOT - Moving Forward

This will be my fifth blog post this week...

There are three types of people in the world.

Those who can count ... 

and those who can't.

My father always told me the two most important things that have guided me throughout my entire life.

1) Never tell everyone everything that you know.

and that brings me to another subject.  In my last post I talked about how great I was doing, how low my pain level was and how great my HBOT was going. I neglected to mention where I have been getting my Hyperbaric Therapy from, for those who are new to the blog and didn't read the first couple of weeks entries.

I have been getting treated at NATIONAL HYPERBARIC OXYGEN THERAPY in Palm Harbor, Florida by Doctor Allan Spiegel and his technician Phil. His entire staff has been so wonderful every time I go in there, they are always so cheerful and friendly. That makes a big difference on those days when your pain is bad let me tell you. 

So today is Friday and my seventh week has ended. Next week is one of those weeks where we had a choice.  We could either take a week or two off, which many patients do, or we could push through five more days to complete eight weeks then take a few weeks off and see where we stand. The hope is that at the end of that time my CRPS will be in remission and no further treatment will be needed. 

That would be extremely nice to have happen. I have a lot of catching up to do! 

Oh yeah, it would be nice to be out of pain too ;-D

But seriously, it takes a lot out of you when you under-go this therapy. You are tired a lot, especially after the treatment and in the evening. And in the morning. And at night. Other than that ....

Definitely the vitamins help and I was on some before, but added more during.

This was a big week for me, especially the first part of the week. I saw great progress in my pain-relief over last week-end and the first couple of days this week. I am hopeful that trend continues next week.

I know quite a few people who have been following this blog have either started their HBOT and/or are getting ready to. I appreciate your sharing your comments and experiences with me. Please keep me informed as to your progress as you go along even after I this blog is finished. 

Because of well this blog has been received I am contemplating doing a once-per-week CRPS blog that discusses some of the latest items related to our disease, articles, questions patients and loved ones submit, things like that.  

What do you guys think?

One other really wonderful side effect of the HBOT is that I haven't had a migraine in weeks!

Migraine Cure
A man goes to the doctor with a long history of migraine headaches. When the doctor does his history and physical, he discovers that his poor patient has had practically every therapy known to man for his migraines and STILL no improvement.

"Listen," says the Doc, "I have migraines too, and the advice I'm going to give you isn't really anything I learned in medical school, but it's advice that I've gotten from my own experience. When I have a migraine, I go home, get in a nice hot bathtub, and soak for a while. Then I have my wife sponge me off with the hottest water I can stand, especially around the forehead. This helps a little. Then I get out of the tub, take her into the bedroom, and even if my head is killing me, I force myself to have sex with her. Almost always, the headache is immediately gone. Now, give it a try, and come back and see me in six weeks."

Six weeks later, the patient returns with a big grin.

"Doc! I took your advice and it works! It REALLY WORKS! I've had migraines for 17 years and this is the FIRST time anyone has ever helped me!"

"Well," says the physician, "I'm glad I could help."

"By the way, Doc," the patient adds, "you have a REALLY nice house.

I couldn't help that, sorry :)

But, no, that wasn't me talking to my Doctor. 

Also, my muscle spasms, that were a near constant companion in the evening and through the night helped only by taking baclofen, have been reduced to almost nothing. Before my treatments, you could actually sit there and watch the muscles in my legs bouncing around, doing the rolling spasms (I know many of you are familiar with these horrible things), and getting so painful they woke me up. No more. 

Some people have asked how in the world I have managed to deal with this disease for more than three decades. My short answer is always the same ... I didn't like the alternative! My longer answer lies in a talk I gave at the last national CRPS/Pain conference we held in Maine. 

Those of you who know me, have watched any of my DVD's, or seen me speak at a conference, have probably learned how important I feel that humor and positive thinking are in the healing process. 

I don't simply mean thinking "I am not in pain, I am positive I am not in pain", or ignoring your pain or anything like that. Bringing the power of positive thinking into every aspect of your life, changing how you view your life IN SPITE OF YOUR PAIN is not easy but is absolutely necessary if you are going to move forward in life; in my opinion. That was one of the major topics in my last DVD (copies are available on the RSDHope website for very little do-re-mi) . 

We set the DVD's up so they could each be shown separately at a local meeting and discussions could occur afterwards. It is especially good in areas where it is more difficult to get speakers.  Just a thought!

In closing today, I will leave you with this thought. You figure it out. 

Your brain is a masterpiece, divided into two parts, left and right. In the left nothing is right and in the right nothing is left.

and for those of you in Florida remember, as Yogi Berra once said, "It ain't the heat, it's the humility"

peace, Keith 

Tuesday, August 12, 2008


Well, when my HBOT journey began a little over 6 weeks ago my CRPS was full body. For you newbies that means it was head to toenail and everywhere in between! Nearly every inch of my body. There were a few areas on my chest that didn't burn with the pain of CRPS, very small areas, and while my cheeks (facial) did have allodynia (extreme sensitivity to touch) they didn't burn. But other than that, pretty much everywhere else I was a mass of burning nerve endings with allodynia all over. 

My CRPS began in 1974 when I was hit in the face with a baseball. It fractured my cheekbones and broke my nose. I was 14. this started my CRPS in the eyes. It stayed in the eyes until 1985. Then in 1985 I was in a severe automobile accident and, among other injuries, I broke my back. That led to my CRPS spreading full body over the course of the next year or two. It got extremely severe within a year or two of that. 

That is basically what I have dealt with since then. 

Ok, we are up to speed. 

I will assume that those of you reading this have been following my blog, waiting with baited breath for each new installment! ha ha , ok, maybe not. But I hope you have found them helpful. I missed yesterday's as my uplink was down. Sort of a downlink. 

Last Sunday, on the third, I had one of the worst days "pain-wise" I have had in years. It continued on Monday to such a degree that I did not even go to my HBOT session. I felt like I had been hit by a truck, my pain went through the roof, my burning was horrific, and the allodynia was such that people ten feet away simply breathing were causing me pain!   other than that .... 

Because I had been forewarned that I would hit some walls along the way during this treatment, and had already hit a few of them, I was sort of prepared. Still, it was rough. But on Tuesday I knew I had to get right back in the chamber if I was going to beat this beast back down. It took me until Friday but eventually it was back in its' cage.

this past weekend I too a positive turn, a big one. I gained back the ground I had lost and then some. if you use % to describe how much of my body was covered in pain, then last Sunday it was back to about 99%. As of this past Sunday it was back down to about 40%. 

On Monday, after the chamber I was doing even better. As of this afternoon (Tuesday) after I left the chamber my pain is down to about 15% !!!!!!!  The main parts that are still affected are; the eyes (original CRPS site); the left leg, from the knee to the foot; and a little bit in the right foot. That is it!  

The allodynia is greatly reduced as well. It used to be everywhere, even in my mouth, my groin, my ears, well, everywhere. Now it is mainly in my left leg, from the knee through the foot; the right foot; and a little in the hands.

Isn't that great news! 

Such a huge change! i think there will be even more significant changes coming this week. I had something happen in the chamber today that was pretty kewl but it only lasted fifteen minutes. I am hoping it will happen again tomorrow and the relief will last much longer! I will say more on that tomorrow, hopefully!

Peace, Keith 

BTW, several people asked how the pool party went for the Tampa Bay CRPS group went and how the new Central Florida CRPS Society is coming along. 

The Pool party was a lot of fun. It rained for the first part of it but we had reserved the recreation room which had a full kitchen, big screen TV, pool table, etc. so we had fun down there until we could get out and start grilling! It was great fellowship and we got to know new people.

The Central Florida CRPS Society is going strong. Lots of new people getting involved and it should be a very strong group. 

If you need information on either group, let me know. 

Sunday, August 10, 2008


One of my new HBOT friends wrote to me recently about how her HBOT journey was going. She is in one of those rough periods, when the pain actually gets worse before it gets better. She said it has helped a great deal being able to read the blog because she knew ahead of time that these rough patches were going to occur, if she hadn't know that she probably would have quit. 

Her HBO Tech, at the clinic, told her that it was the reason why so many people quit; they just aren't mentally prepared for their pain to worsen before it improves. It is a story that is repeated at clinics all over the country, a frustrating one because these technicians and Drs know that if these patients would only stick with it, work through those difficult spots, get through the wall especially, they would see remarkable improvement. They know because they have seen it happen time and again. It just could happen so much more often than it does. 

And sometimes a patient sees their greatest improvement after they finish their sessions! It could be as long as weeks after they are done. Why? It is an ongoing process, this remarkable healing of the body. It is not something that happens overnight, or like the flipping of a light-switch.

Hopefully I have helped to prepare some of you for these tough times so more of you can achieve success; either partial or complete. Any relief is a help.

I am not too worried about this new friend of mine. Why? Because she is a fighter like me. Let me share with you what she wrote;

but I am strong - we RSDer's (are) the strongest people around . We  get knocked down wipe ourselves off and get back in game over and over and over again -Most people have that challenge once or twice in their lifetimes. We sometimes have it 10 times in a day;)
So true. When you get right down to it, we deal every day with what is classified as the most painful form of chronic pain that exists today, CRPS. On the McGILL Pain Index nothing else is even close. We have to cope with occasional flares that produce even greater pain. If there is anyone better equipped to handle increased pain, I guess it would be us! Especially if it means the possibility of eventually reducing that pain.

That same friend wrote something that quite a few others had written in one way or another that I wanted to share because I wanted some of the Drs and clinicians who are following this to read it. Some of them were very nervous and/or against the idea of my doing a blog about HBOT, documenting my journey, for several reasons. Some of them I could understand.

1) They were concerned that people would think that if it didn't work for me that it wouldn't work for them. Hopefully I have made it clear that every case is different and especially so in my case where I have had CRPS for more than three decades and mine is full body. Entrenched is a perfect word to describe my CRPS! 

2) That people would have a difficult time understanding in a blog the complexities of the HBOT process. I hope I have dispelled that by taking a lot of time to explain the process in detail, how it works, why it works, information on the various types of chambers, sharing all manner of websites and information, etc. 

3) That when people heard about THE WALL, it might scare them away. Hopefully the contrary is true, that by informing people of what lies ahead of them they re better prepared for it and are then able to mentally work through it so they can stick with the therapy instead of giving up on it.

Having said that, here is what she wrote today.

There is not enough written about the difficulty of this process . Your  BLOG IS DOING A  GREAT SERVICE ON THAT END. People think they go in- they do the  treatments and they come out in remission or at least a whole lot better. No one talks about this CRAZY journey.

So I hopefully have helped a few people better understand it :)
Someone wrote about whether or not Fibromyalgia would be helped by HBOT. There are many websites that speak to this, you can find them linked on our HBOT SECTION on the American RSDHope website, but you can also find a quick and easy answer by going to HAELEN HYPERBARICS.

Next week, is week seven! Only two weeks to go, 10 treatments. That is the plan!

Remission or bust! well, or really really close. 

See you tomorrow, go hug your significant other, caregiver, or maybe a really cute stranger.