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Diagnosis, CRPS/RSD

06.24.2011 by Girl on Fire // 25 Comments

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.

Related Posts

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  • My Plan of Action…CRPS/RSDMy Plan of Action…CRPS/RSD
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  • RSD Lesions and Staph InfectionRSD Lesions and Staph Infection
  • I love my painful life…I accept it! #CRPS #RSDSUCKSI love my painful life…I accept it! #CRPS #RSDSUCKS
  • And Then I Cried.  A day in my Life with CRPS #CRPS #RSDsucks #RollerDerbyAnd Then I Cried. A day in my Life with CRPS #CRPS #RSDsucks #RollerDerby
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Girl on Fire

Photographer at Loudmouth Photography
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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Categories // Around Our House Tags // chronic pain, Complex Regional Pain Syndrome, CRPS, Diagnosis, health, Neurological Disease, Reflex Sympathetic Distrophy, RSDS

Comments

  1. Whitney says

    June 24, 2011 at 12:45 pm

    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!

    Reply
  2. Jacqueline @Blessings Abound Mommy says

    June 24, 2011 at 12:50 pm

    My heart goes out to you Brandy! I’m praying for you and wish you the best outcome you can have! (((HUGS)))

    Reply
  3. Lee says

    June 24, 2011 at 1:11 pm

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

    Lee

    Reply
  4. Linda Kish says

    June 24, 2011 at 1:44 pm

    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.

    Reply
  5. Zippy Sandler says

    June 24, 2011 at 1:52 pm

    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.

    Reply
  6. Katie says

    June 24, 2011 at 2:12 pm

    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.

    Reply
    • Brandy says

      June 24, 2011 at 2:25 pm

      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.

      Reply
      • Katie says

        June 24, 2011 at 2:29 pm

        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.

        Reply
  7. Donna says

    June 24, 2011 at 2:42 pm

    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.

    Reply
  8. Shan @ Last Shreds Of Sanity says

    June 24, 2011 at 5:13 pm

    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.

    Reply
  9. Katie says

    June 24, 2011 at 5:19 pm

    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.

    Reply
  10. Amanda says

    June 24, 2011 at 5:31 pm

    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)))

    Reply
  11. Donna says

    June 24, 2011 at 7:49 pm

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

    Reply
  12. Adie says

    June 25, 2011 at 9:34 am

    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.

    Reply
  13. Lisa @ljenator says

    June 26, 2011 at 9:10 am

    Hugs love. This really shows the need for medical marijuana here in TExas! (Whether you agree or not hehe) I think you would totally benefit from it!

    I <3 You!!!

    Reply
  14. Henrietta says

    June 27, 2011 at 6:49 pm

    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!))

    Reply
  15. ellen says

    July 3, 2011 at 12:38 pm

    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!

    Reply
  16. trisha says

    July 3, 2011 at 12:45 pm

    ((HUGS))

    Reply
  17. Leah Segedie says

    July 5, 2011 at 1:18 pm

    I didn’t know that about Paula Abdul. That explains alot. And I want to give you HUGS!!

    Reply
  18. Jen-Eighty MPH Mom says

    July 5, 2011 at 4:07 pm

    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…

    Reply
  19. Tricia @Nightowlmama says

    July 31, 2011 at 10:46 am

    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.

    Reply
  20. Robin Wilson says

    October 21, 2013 at 2:42 pm

    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!”

    Reply

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