CRPS DIAGNOSIS

[LaurenJude]

I have been recently diagnosed with CRPS in all 4 limbs, including my hips & part of my lower back. I had surgery in May on my shoulder for a worker related injury(which makes it way complicated). The symptoms started within days after surgery. I tried to get answers/help, to no avail: the drs feigned ignorance + said 1 thin & then @ the following appt - denied saying it + to being denied by Ins adjustor. So, hubby & I set out to find out for ourselves = primary Dr + he referred me to a neurologist - who did physical exam & ran blood tests/3 diff MRIs/EMG's on legs & arms. He made a preliminary diagnosis & referred me to pain Dr + pain Dr made the official diagnosis = says its severe & spreading (making long story short).

Of course I have an endless array of questions, lol. Just not right now. Quite honestly, I'm overwhelmed. I suppose I am just looking to meet others who also have CRPS.

Look forward to hearing from you guys. Be well!!

Laurenjude

[philnoir]

Hi Lauren.

I suggest that you find some information on CRPS. Those initials stand for Chronic Regional Pain Syndrome.

This is not a diagnosis to bandy about lightly. If your neurologist and pain specialists are worth their fees, then you may have a good diagnosis.

You may need a second opinion with an outside source. Maybe not. Time will tell.

This disease used to be called RSD for Reflex Sympathetic Dystrophy. Those words imply a dysfunction of the sympathetic nervous system, which may or may not apply in your case. That's one reason why RSD became CRPS.

There are two types of CRPS. Sometimes the pain comes for absolutely no reason. Other times it starts with a physical insult or traumatic injury. Surgery is considered a traumatic injury.

You and your husband need to learn about this disease.

Familiarity with the human nervous system, its various parts, and their function, will help in your understanding of this rare and mysterious disease.

For now, a google of CRPS will help you begin this journey.

Chronic pain is a disease of the central nervous system. People who are diagnosed with chronic pain live with daily intractable pain that is moderate to severe in intensity, and irregular in its onset and extent. Then there are the rare days when we feel great -- the pain is gone. "I must be getting better," we say to ourselves.

I've had that thought a thousand times, if not a million.

For those of us who live with chronic pain, life is a journey of discovery and learning -- about our disease, finding treatment options that help, and working through the complexity of psycho/social burdens that this disease imposes on our lives.

The road begins here, and welcome to it. We can walk together for a while if you wish. We'll tell you what we know, and we'll answer your questions if we can. You'll also receive a lot of support from the compassionate people here.

Best wishes.

[Tuckamore]

Hello and Welcome Lauren,

I am glad that you found us and took the time to post. You have been through so much, I'm sorry. I know your pain must be great. I had a colleague and  friend who suffers greatly with CRPS.

I know we have members with the same DX, they are not on the boards constantly. I hope they'll see your thread and respond.

You are always welcome here - please don't leave. However I would be amiss if I didn't tell you that we also have a Neurology Forum. I'm not certain how active the community is - but here's the link:

www.medhelp.org/forums/Neurology

I hope you'll be active in our Pain Management Community and share your pain challenges.We have different DX that produce our pain - but we all know and sadly understand challenges and impact of chronic pain. We welcome new members, their input and information. We support and learn from one another.

My Best,
~Tuck

[ScalpMassager]

(Complex Regional Pain Syndrome)

Wiki describes CRPS quite well, and remarks that early treatment is much better than delaying treatment.  mayoclinic.org is even better and worth careful studying.  It's clear that early treatment appears to be the best hope.