Living with RSDThis section is a place to share stories about Living with RSD Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Raising Public Awareness to RSD 
I am writing to create an area for people affected by RSD to refer public officials or people that could be beneficial in helping to raise public awareness of this relentless disease to. For anyone that is unaware of RSD also known as CRPS, and it’s toll it wages on the patients and their loved ones, please read some of the posts that have been entered on this great forum. For the most part the people here are the patients themselves, but all are directly affected. The disease itself is classified as the most painful affliction currently known to man; second only to amputation without anesthesia according to the “McGill Pain Index”. I personally have felt the pain of migraines for more than thirty years and have felt NOTHING like the pain that was generated in September, 2006 after a simple ligament repair operation. The pain is classified as a burning, stabbing, stinging, crushing, and tingling like a very strong electric current through the affected area. Also there is skin discoloration, changes in hair and nail growth, and skin temperature (much cooler) throughout the area. The patient usually looses muscle tone and control that leads to loss of use in most instances. It has been known to spread to other parts of the body with out additional stimulation or further injury. And if these aren’t bad enough a person suffers from high blood pressure and extreme insomnia (I usually sleep one in three nights and rarely sleep all night). Since the pain is a nerve pain it is very difficult to manage and or control. Usually the patient is required to quit work, file for disability and frequently suffers loss’ in basic elements such as homes and elementary creature comforts. These complications have been known to lead to bankruptcy and major depression issues. The suicide rate is in the 60-75% range because of the lack of understanding, compassion, and lack of treatment, many patients suffer. In many cases there are loses suffered in immediate and extended relationships, every family member’s life is changed along with the patients. It sounds as if this is to horrible to be true, but all it takes to be convinced is to talk to one of the victims that lives with the disease’s mark. Very frequently the patients have nothing but horror to look forward to, for the medical community has a tendancy to think the pain is “all in the head of the sufferer”. So for anyone that is interested please have an extra measure of compassion for anyone that you encounter that is touched by the “fire” known as RSD. Thank you for taking time to read this post, G0J0G0 aka, Alan.
March 2008
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