Diagnosis, CRPS/RSD

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.  Prayers are appreciated.  Thanks!

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Brandy is the wife to a carpenter/musician and the mother of 3 amazingly awesome homeschool/unschooled girls. Brandy is a Photographer as well as a Coach for the Weebellion as part of Rolling Rebellion Jr. Roller Derby. Brandy is passionate about many things and suffers from a very painful and degenerative neurological disease called CRPS/RSD.

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  1. As bad as I hate to hear this, I am so glad that you finally have an answer. I hope you can get through the system quickly and get your SSI & Disability started soon. Your attitude about all of this amazes me!

  2. I was going to comment “Did you know Paula Abdul has this”. I’m glad they diagnosed you Brandi! I’m thinking of you.


  3. Chronic pain syndromes are never fun but a diagnosis does seem to make it easier somehow. Good luck with the SSDI and SSI system. An attorney makes it easier. The system is so hard to fight through. I have been disabled for 16 years now. Almost to retirement age. Having a diagnosis shuts up those naysayers that think you look fine so must be exaggerating. They really don’t understand. I hope you feel better.

  4. I’m so sorry about the diagnosis…it can’t be easy, but glad that you’ve got an answer. I actually had an easy time with ssdi (have been on for over 7 years now). I was accepted with one appeal and my husband on his first try. I didn’t use a lawyer at all. It’s all in the way that the doctor writes his report.

  5. I’m glad you have a diagnosis. I have treated a lot of patients with RSD in the past – many of them stroke patients that develop RSD, and you’re right it’s a horrible thing because of how difficult it is to control the pain. I definitely wish you all the best with your treatment and am glad that you can now move forward knowing what is going on.

    • Hey Katie…during my last pregnancy in 2006 I had a stroke. It affected the entire right side of my body which is where all this pain started 3 years ago. Back then they said it was a TIA, but now it is thought that I may have had an actual stoke..just a small one because my right pupil is larger and does not dilate properly. Is it possible that this RSD was caused by that incident back in 2006? I literally went to sleep fine and woke up this way.

      • I’m not a doctor, BUT I would say that’s a definite possibility. I haven’t had a ton of RSD patients, but of the ones that I’ve had, the majority have the pain due to a stroke. I’m an occupational therapist – so I’m not directly treating them for the pain, I’m working with them because they’ve had a stroke and helping them to regain movement or abilities, but obviously address the pain the best I can. Knowing that you had a TIA or stroke makes it make a little bit more sense to me.

  6. It’s difficult going through life not knowing what’s wrong with you, I’m glad you’ve finally got a diagnosis. Good luck! Prayers said.

  7. I still can’t believe not one doctor connected your stroke with the lingering pain. It just makes no sense. But at least now you have a diagnosis that you can take to SSI.

    I forgot to tell you on the phone Wednesday that you can get a free SSI lawyer. They call them advocates. I pray that this works and you finally get the medical care you need.

  8. You are in my prayers girlie.

    Since the day I met you I knew we would be good friends…and although you are miles away, you are in my thoughts. I have your back. If you need anything please let me know.

    Big Hugs.

  9. I’m so glad you finally got a proper diagnosis so you can move forward. You have a great attitude about it all. So many others would just give up. (((hugs)))

  10. Now with the diagnosis, finally, you can move forward and fight what you know! You have all of us behind you. Luv and prayers.

  11. im glad you finally have a diagnosis. Hopefully the process will start moving a little faster to get you the healthcare that you need.
    You’ve always been a strong person.

  12. While I wish you had a more treatable disease I’m so happy for you to finally have your diagnosis! I pray you will be able to move through the ssi process quickly so you can get the treatment you need! You have a great attitude that is inspirational! 9((hugs!))

  13. I agree finally having a diagnosis makes things somewhat easier- you dont feel like you’re ‘losing it’ and you are finally able to persue correct treatments. I would say a disability lawyer also just for the fact that it would make everything easier and in addition you will be far more likely to win your case. If you havent filed, do so right away- your back pay will be determined by the day you filed- and when you get disabilty a good chunk of your first payment will be back pay.

    I wish you pain free days, or at least good ones!

  14. I’m so sorry that you are always in pain! I know you are relieved to have a diagnosis – even if it isn’t what you wanted to hear. I think you are pretty amazing, and your positive attitude will be incredibly beneficial. Big hugs to you…

  15. How horrible for you. The fact that they have no cures and sounds like they don’t have any relief for you either is also so very sad. I wish I can give you a hug and take all that pain away. Prayers and hope that you can fine pain free days to comfort you.

  16. I know that it has been a couple of years since your diagnosis, but I wanted to read about this. I have had lupus for over 30 years and am currently suffering from a lot of problems, one of which is chronic pain. Though after reading about your pain and how you handle it I feel like a big, fat sissy! You are an inspiration and I wish you all of the best and hope that you are doing so much better. I just found your blog and will peruse it to see if I can catch up with you and your health. In my prayers. “By His stripes I am healed!”
    Robin Wilson´s last blog post ..Life With Lupus: My Diagnosis Day

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