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Brandy’s New Diagnosis: CRPS – Complex Regional Pain Syndrome

Brandy has a new diagnosis — finally.  But it’s not exactly a good thing. The syndrome/disease she has is incurable and very painful. And since she still has no health insurance, it’s rather expensive to treat. Brandy wrote about it on her blog, so I just copied it here:

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 (like me) don’t go through the 3 stages.  For me, I developed the severe symptoms right away.

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.

Brandy still needs our help. The medications are very costly as well as the doctor visits. She desperately needs to see a Neurologist so that she can get a diagnosis that Social Security will accept as true in order to apply for benefits. Getting approved for SSDI will not only give her an income to help support her family, but also give her medical insurance so that she doesn’t have to sell one of her children to afford treatment. Please help her!