More common than the good causes I ran for...

In retrospect RSD was obvious following the injury as from waist down, into legs/feet, was accompanied by all the symptoms clearly documented in all RSD literature: severe pain, vascular/color changes, muscle atrophy, muscle tremors, swelling, temperature changes, etc. Yet, for 2.5 yrs I was essentially never given a name for the pain I endured. I was never given the dignity of validation and never given proper medical treatment. Over this time instead of getting better, the pain only got worse. The disease spread throughout my body, unanswered for, untreated, and with the intent of most physician's to imply it was mentally and/or emotionally related, as if I were: an exaggerator, attention seeker, malinger, or some other similar sort.

I spent that time in a near catatonic state, in pure painful misery, consulting with 20+ doctors of all disciplines - yet to no avail. It was a demoralizing existence that no human being should ever have to endure.

I made my initial diagnosis in May 2003 via the web. Two weeks later, this was confirmed by a pain management doctor and two weeks after that, confirmed by a neurologist. I am now getting the appropriate standard treatment conservative treatment for RSD: medications, therapies, warm water pool.

Naturally by now, as so much time has elapsed, the pain is sympathetically independent; it is no longer maintained and injection/blocks are not an effective option for pain control. This did not have to be this way had I been diagnosed timely. What started in my right leg had quickly spread to my left leg, and to my upper left quadrant; Today 3/4 of my body is ridden with the pain of RSD. My activities and functioning is extremely limited; I have given up my career in addition to most of my passions and hobbies in
this life.

As my pain is SIP I would not consider a SCS, as it seems to have better results with SMP. My personal opinion I would not consider nerve ablation for me, as the findings and results don't seem positive for the long term. I intend to stick with conservative modalities and exhaust all avenues in the hope that pain will become more moderate. If not the case, in the very far away future I may consider aggressive treatment, such as: low dose Ketamine, morphine implant pump, or any new options that show promise in reduction of the pain symptoms.

I am relieved to no longer have to justify my complaints to physicians as I wade through the options albeit conservative vs aggressive in attempt for some pain control. Yet, sadly, I find myself still in an undignified position, meeting again sharp critics, as I must validate, explain, and justify to friends, family, and community as a whole. This name - this RSD - although it may be final validation with the medical community, it is certainly no validation with the general community. Having to still explain what is "wrong" with me to others is a process that is demoralizing and disgraceful, and once again an existence and experience I wish upon no other human being. I should not be put in a position to explain the mechanism and extremities of this disease, while the other on the receiving end of conversation says, as always, "I've never heard of this RSD before" and eagerly wants to know more. This should not be their first time hearing of this disease. As it is said to affect more Americans than AIDS + Breast Cancer + MS combined, the community as a whole should already be familiar with RSD. I should simply have to say "I have RSD" and say no more, an automatic validation; such as a MS patient would have. It is shameful that this is not the case for me and RSD patients… shameful and wrong.

Of course I too had never heard of RSD until this beast entered my life. Often now I think of all the charity road races I ran for MS, Breast Cancer (all previous to my injury and RSD, of course), as well as countless funds/donations I have given to a multitude of health causes and disease in the past. I get near nauseous realizing had I known this horrid disease, RSD, existed and people were suffering in this cruel barbaric manner, had it had proper awareness and large publicized fundraisers, this is where my donations would have gone, rather than donating to most other diseases. Sad, isn't it? I wonder how many others in the public would feel this way too if the only knew we existed, if they only knew about RSD. It seems awareness is the essential missing element to it all. Awareness will bring not only the understanding and validation, but also the necessary fundraising.

While I fight this beast and rearrange an adapted lifestyle in accordance, it is my sincere hope that eventually others will not have to endure the humiliating and demoralizing experience I, and so many others before me, with RSD have. While we all pray for "cure" in our dreams, I am not sure if it is reality (at least in my lifetime) so I like to stay as pragmatic when possible. While we cannot cure each other, as we are not scientists, healers, Gods, or the like - we can contribute the awareness be it small or large scale; this will directly impact the life of the next person who develops this horrid disease in more ways than one.

© Penny Braun
2003