At my doctors appointment on Wednesday I finally received a diagnosis. The Diagnosis was CRPS, known also as Complex Regional Pain Syndrome, it is a chronic neurological disease. It is also called reflex sympathetic dystrophy syndrome or RSDS. It affects people of all ages although it is most common in people aged 20-35. It also affects women more often than men and the disease can affect children.
There is no cure for CRPS.
Since there is no cure for CRPS, the goal of treatment is to try and help relieve some of the pain associated with the disorder. The pain is pretty horrific some days. Everyday is a pain day and it never goes away. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and anti-seizure drugs.
Other treatments include:
- Sympathetic nerve blocks
- Intrathecal drug pumps
- Spinal cord stimulation
There are 3 stages, although some people don’t go through the 3 stages.
Below are the severe symptoms:
- irreversible changes to skin and bone
- pain is continuous
- muscle atrophy
- severe limited mobility
- contractions of muscles and tendons (limbs may be twisted)
- muscle spasms and joint pain
- severe burning, aching pain that worsens with the slightest touch or breeze
- stiff joints and weak muscles
You know what’s funny? Paula Abdul has the same condition. That may explain her being spaced out on drugs all the time. If I was a weaker person I could see being just like that. Thankfully I can suck it up…don’t get me wrong…most nights you can find me crying in the garage after everyone else has gone to sleep. I can’t fake it all the time. It sucks….but I still don’t hate my life. Just gotta keep on going!
So now that I have a diagnosis my next step is to contact an attorney to help me with the SSI and Disability forms. This will help me get insurance to cover my medical needs. It took them 3 years to diagnose me. I have been out of work for over 3 years. I did continue to do occasional web design work for a bit, but now I can no longer do that either. The medications and treatments I need are beyond what I can do being a self pay patient. Prayers are appreciated. Thanks!
UPDATE: After going over medical records and symptoms, we traced it back to the beginning. An injury when I was 13 years old. At that time they didn’t know why I continued to have pain and no one really thought anything of it until the spread many years later.
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