Tuesday, August 5, 2008

HYPERBARIC OXYGEN AND CRPS -- If a CRPS Patient screams in the woods, and no one is around to hear it, does he still make a sound???

There's a little black spot on the sun today
It's the same old thing as yesterday
There's a black hat caught in a high tree top
There's a flag-pole rag and the wind won't stop

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

---- Music and lyrics by Sting and the Police - "King Of Pain"

I talked to a 13 year old girl recently who has been dealing with CRPS pain for over a year. She has it in her foot and leg. Her whole life has been turned upside down due to this disease. She had to leave school, stop cheerleading, most of her friends have stopped calling and stopping by, and she spends every day in agonizing pain. 

She asked me, will she ever get better? Will there ever come a time when she isn't in pain? 

None of the Doctors her parents have brought her to have helped. Nothing they have done has helped; blocks, medications, EMG's, etc. Some of these things actually made her worse, especially the EMG (as it will most often do for CRPS patients). 

As a matter of fact, her Doctors have told her parents that because nothing has helped her she probably doesn't really have anything medically wrong with her; that her problems are psychological in origin. Oh sure he says, she has spasms, her skins changes color, and she is exhibiting signs of pain. But he insists that she is causing these changes, causing these symptoms, to occur and if she wanted to she could stop them just as easily. She "must be doing it for attention", or there are "problems in the home", or a few other things he tossed out. 

I remember when she first wrote to me, shortly after she started having symptoms. Her case escalated in the classic way and her symptoms are classic. 

The biggest problem now comes in that her parents are believing the Doctor instead of their daughter. And the months tick by without her getting the help she desperately needs. She has educated herself via the internet, going to our site and a couple of others and learning all she can about the true facts of this disease; description, signs, symptoms, stages, and so much more that is available and tried to share some of it with her Dr; to no avail. 

She feels confused, alone, and doesn't know where to turn. She is a member of a strong on-line group and that has greatly helped her but she can't live there. We all need someone to believe in us, it should be those closest to us but unfortunately, especially with this disease, that isn't always the case. 

Why have I shared this story with you? Because there are a few things I share with people when I talk with groups on this topic (well more than a few but a few that I try and stress);

1) Never compare your pain with someone else's.

2) The pain IS in your head,(that is where we register pain) but you aren't making it up!

3) You aren't alone anymore. 

4) Don't sweat the petty stuff ... and don't pet the sweaty stuff. 

Don't feel you have to battle this disease, or any chronic pain disease, by yourself. There are support groups and chat-rooms, and listserv's all over the internet. Or look for a local support group to belong to, to help grow, to share your energy with. Just do your due diligence to ensure they end up being a positive influence on you and others. And if you are in remission or heading there ... don't pull away from these groups. Now is when the other patients need to hear from you the most. 

So the next time a Dr or a friend or anyone says "Your pain is all in your head", say "OF COURSE IT IS SILLY! For that is where we register everything; pain, happiness, sadness, taste, you name it!"  Then walk away with your head held high. Or roll away, or limp away, but --- away with you! Leaving them with a confused look on their faces and you smiling. 

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

There's a king on a throne with his eyes torn out
There's a blind man looking for a shadow of doubt
There's a rich man sleeping on a golden bed
There's a skeleton choking on a crust of bread

King of pain

So, how is the HBOT going?

On Sunday I had a bit of a setback. The burning pain in my feet, hands, lower legs, and arms came screaming at me and went through the roof! I realize, in talking with other patients that this can happen during treatment but boy-o, was it tough. It felt like I was run over by a truck on Sunday and then a smaller truck on Monday. 

Today is a little better. I had a treatment this morning and the burning pain is much lower again in my hands and right foot (that left foot is stubborn). What also got raised on Sunday was the crushing pain ( a common CRPS symptom) in my legs, which has thankfully subsided, and that most horrible of feelings; what I like to call "walking on broken glass". It feels like my heels are full of pieces of broken glass and every time I place my feet on the ground those shards slice upward. I haven't had those feelings for many weeks and so it was ugly having them back. 

My eyes, which were the first place I ever got CRPS, have always been the worst pain for me. I haven't met too many other people who have it in their eyes but I have had a lot of people ask me what it is like having CRPS, chiefly burning pain, in the eyes. 

This is where I can absolutely relate to those patients who have talked about how they wanted to have their arm or leg amputated. Their pain was that intense, that horrible. Of course nowadays we all realize that doing so would simply lead to phantom limb pain, no limb, and the patient still having CRPS. But early on in my disease, back about 30 years, they looked into the idea of some sort of an eye transplant. Not because of the CRPS (they hadn't diagnosed it yet) but because of the poor vision. They thought the eye disease I had, that originally they believed was the cause of the pain, might be eliminated if they switched out the eyes. We never did it of course although I did end up with a corneal transplant, which didn't help either the vision or the pain. 

When I was younger and they were still confused about what was happening what they were convinced of was that I was exaggerating the pain. There was no reason for the kind of eye pain I was describing so I was either making it up or possibly taking drugs or seeking attention or maybe a combination of the above. I was fortunate in that I had parents who believed in me absolutely. 

So, what does it feel like? The burning in the eyes?

It feels like having two hot burning coals where your eyes should be. Like there are giant flames shooting out of my eyes all the time and I am confused why no one else can see them. If I could only rip them out of my head, I wouldn't hurt so much. I need to constantly douse them with water to keep them moist but it is like trying to put out a forest fire with a squirt gun. (part of that is because I had my tear ducts sewn shut many years ago - not because I didn't want to cry but due to another issue). Bright lights hurt them, a slight breeze causes them pain, if I am tired they burn more, when I am stressed they are the first area of my CRPS that gets increased.

The bottom line is, although I have CRPS full body (although less so currently due to the Hyperbaric Oxygen Therapy thankfully), my eyes are definitely the most painful area of my body.

When I went into nearly complete remission in 2003 and again in 2007, the part of my body that was not affected by the ketamine was my eyes. For that treatment, as with HBOT, it is "what was affected first will go way last". So even though many patients report a positive change in their vision during HBO Therapy, I am not anticipating any change in the eye pain until nearer the end. But I am praying and hoping to be surprised sooner!

In spite of Sunday, in spite of that spike in pain, I won't give up. I did take off Monday from HBOT, hence no Blog yesterday, but I was in no shape to drive. But I was right back at it today. 

I am too stubborn to give up!

Peace, Keith  

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