Exhaustion Runs Through Me

I've been so tired. I have no energy. The pain drains me entirely. I'm often in a daze. I hear voices, but they seem so far away, even when they're just a whisper away. Conversations, television, etc.

I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.

I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.

I've been really busy. Major tool for chronic pain is distraction.

Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.

I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.

I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.

I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!

My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.

Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.

I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.

I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.

It's all so bittersweet

Until next time...

Clinical Trial: Medicinal Cannabis- RSD/CRPS Completed

In November of 2003, UC Davis Medical Center in Sacramento California began a clinical trial for Medicinal Marijuana use for Neuropathic pain associated with Complex Regional Pain Syndrome (CRPS) type 1 and 2. Having been diagnosed with RSD/CRPS type 2 (Causalgia) the same year, I was very eager to participate in the study. The best part was that UCD Medical Center is located just 15 minutes down the street from us. Due to certain circumstances I was not able to participate.

For information about this study please refer to ClinicalTrials.gov .
ClinicalTrials.gov processed this record January 5, 2009. (Today)

ClinicalTrials.gov Identifier:

NCT00254761

What is interesting is that while cannabis for the casual user is technically illegal, mandatory eligibility requirements constituted having previous marijuana experience. You could not be marijuana naive and participate.

While I've never been a big Ganja user, I conducted my own study since I couldn't participate in the Clinical Trial.

While I'm almost certain most participants would claim it decreased their pain significantly whether it did or not simply because when severely pain stricken we become so desperate that we'll do almost anything to survive the moment. With a prescription from our pain manager we can buy, grow (up to 12 plants) and use it legally for pain.

My own personal study concluded with this:

It did not help beyond an approximate 20 minutes for pain itself. I would presume it was because during that 20 minutes I was high. My mind was sidetracked. This is not a bad thing. 20 minutes without pain or even "thinking" you aren't in pain can seem a lifetime when the alternative is praying to die.

When I finished smoking no more than a quarter of a joint, equivalent to 2-3 short to moderate inhales, my legs rushed with warmth, this is also a good thing, it means the damage from the nerves in my legs was responding, but when the pain began increasing again and at it's peak it seemed tri-fold from where it started.

It also heightened my hyper-sexuality. Yet another good thing. However, when the feeling of triple terror overwhelmed me when the pain returned, I was again back to being afraid to be touched as my flesh has become so sensitive over the last couple of years that a brush of passion, a touch of love, feels like being cut with razors instead.

Those with CRPS type 1 previously known as RSD may have better luck. CRPS type 1 means no known nerve injury or damage. Type 2 means with known nerve injury and damage. CRPS type 2 was previously known as Causalgia. RSD became a universal term to mean either.

I am interested in knowing how cannabis has helped those with CRPS type 2.

Is it really worth it? And is it worth it enough?

Perhaps.


~rsdcrpsfire