Hello and thanks for reading this. I have a wonderful 14 yr old daughter that keeps on having these strange spells of pain that regular doctors had been saying was some type of pleuracy. Finally this last time they decided that she had, had this type of pain too many times and sent us to a Rheumatologist. Just yesterday they told us that she has CRPS. This is the first time that she has ever experienced swelling in her shoulder blades and colar bone area. The pain was so severe last spring that she even passed out. When she is not having a spell she plays both volley ball and basketball. However it is now basketball season and she has missed her first three games and has even missed three weeks of school. She has finally been able to go back to school; today was her first full day back. She has been in physical therapy for two weeks now. When we went to the therapist today I explained to them that I thought her swelling was coming back and she looked at it an agreed. In the past this pain has been something that would come and last about a week and then go away. It has been over three weeks and she still has swelling and even driving over a speed bump hurts her. Can someone please explain this thing called CRPS to me I only know that because of this horrible condition I can't hug my daughter and make everything ok

Hello Cassmom!
Welcome, and so sorry to hear of your daughter's pain!

There are some other Mom's here, and a young lady near your daughter's age, who I'm sure will be here.

You didn't mention any injury that may have caused this with your daughter? Was there one? Any trauma at all?

I suggest this website a lot,
www.rsdsa.org
RSD, (Reflex Sympathetic Dystrophy) is an older name for CRPS.
There is a doctor finder there, and volumes of information.

Personally, I'd highly suggest that you find a neurologist who's familiar with this disorder!
(Try a University hospital setting, and try to get the chief of Neurology).

Also, what you describe, I would have her to a hand specialist (surgeon) to rule out Thoracic Outlet Syndrome (TOS). (Usually, in a hospital setting, the neurologist will have/know a good Hand surgeon.
There's another section on this board for folks with that. I'm one of them,
I've had both RSD/TOS for 26 years now. Younger patients who get treatment early, do the best by far.
http://neurotalk.psychcentral.com/forum24.html

I'm NOT a doctor, just suggestions from my experience.

I wish your daughter, and yourself and family the best!

I'll offer my prayers for your daughter!

Pete

asb

The only injury that we know happened was when she was born she was stuck in the birth canal and they had to pull her shoulders out of socket they tore so much having to do this that at first they told me she might not be able to use her arms. The flare ups always start at her rib cage and now work there way up to the shoulder. However she has been able to and has even been very active in sports except for when she has flare ups. We are currently seeing a doctor at Vanderbilt in Tn. Do most people with CRPS have flare ups that come and go? html[/url]

I'm NOT a doctor, just suggestions from my experience.

I wish your daughter, and yourself and family the best!

I'll offer my prayers for your daughter!

Pete

asb[/QUOTE]

Welcome to NeuroTalk Cassmom! You've come to the right place. I'm so sorry your dear daughter is in so much pain. There are wonderful people here to offer ideas and advice to help your daughter. I hope things will improve for her soon.

Welcome, Cassmom. I believe you will get a lot of good "real-life" information here. We are all speaking from personal experience.

Yes, it is very common to get flare-ups where the symptoms are at their absolute worst. Likewise, many people find they have periods of time where the symptoms are quite mild. This can sometimes be frustrating. When I begin my day, I never know how I will be feeling by the afternoon. A flare-up can come on extremely suddenly. I might feel good enough to be doing something physical one minute, and the next can hardly stand (my RSD is mostly in the foot/leg.)

I hope your daughter is reading through the posts here as well. (Hi, Cass ) The more she reads she will realize that she is not alone or some type of freak. This can also be a place for any of us to get on and RANT when we are having a bad day. We are willing to listen, to have an electronic shoulder to lean on.

Best to you both,

Mike

It's time to do some research. Really. It's best to read up on it right now. The following information will cover way more than we could ever explain on this forum. Please look at these sites:

http://www.rsds.org
http://www.rsdhope.org
http://www.forgrace.org
http://www.rsdrx.com/rsdpuz4.0/001.htm

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Cassmom,

She may be "growing" into that birth injury.
TOS, is often associated with RSD/CRPS, and it's all got to do with the shoulders, arms, hands, ribs and upper musculature.(TOS) From what you're saying, I would really suspect the TOS first.

I have more questions about her pain?
1)Does it radiate up her neck, perhaps headaches, after exertion? Down her arms, weakness in her arms, fingers.? Tingling in the fingers?

2)Does she have deep, deep burning pain, like in the bones?
Skin feel cold, or hot?

The first set of questions would indicate TOS.
The 2nd, more like RSD/CRPS.

Here's a quick layman's test for TOS.
(Easier than it sounds)

Have your daughter stand in front of you, facing you in a well lighted room.
Have her raise her hands in like the "Stick em up" manner.
Arms @ a 90 degree to her body, then bent at the elbow, hands straight up in the air.
Now, have her 'push' her elbows rearward as far as possible, while slightly raising her hands. This might cause a "burn" in her shoulder blades, but it's only gonna take a minute or so.
What you're watching for is her pulse. @ her wrists.
Do her hands change color?
Pink to white?

If she loses her pulse and/or her hands turn white, that's a good indication that she's got TOS.
Most every knowledgeable Neuro and Hand / Arm / Shoulder surgeon will do this test.

Also, notice her at rest.
Does she normally "rotate her shoulders inward while sitting", (Shoulders forward) and drop her hands in to her lap, centrally? Does she like a pillow under her arms? For support?

If you want to PM me, I'd be happy to try to help more.

Pete
asb

My wife has RSD and or CRPS and can only draw from what I've witnessed. If it where me I'd research this disease and keep your eye on other conditions as well. Most of the time an injury is what sets this disease in motion but not all the time. Usually it is most prevalent in a limb and then spread to other limbs, but again not all the time. It can spread to organs, orally etc.
My wife broke her wrist and overtime the disease has spread to her limbs mostly. Sometimes she will complain about neck and lower back RSD pain.

What sets your daughter apart in my mind is other than a complicated birth she appears to not have had an injury, not to say that a very young infant can not get CRPS from very very early in life or that even an injury is even required.
The other thought is it sounds as thou your daughter has had spells of pain and swelling and then both pain and swelling totally disappear, many times over? How long ago did this start? How long does the pain last and does it infact leave altogether, no residual pain at all left until the next episode?

Hi Cassmom,

My name is Sandy and I also have a 16 year old daughter with RSD/CRPS, finally diagnosed in December 2008, but sick for 6 years. I'm sorry I wish that I could tell you that this is going to be easy, but, it isn't. Like I tell every other parent on this board the first thing you need to do in school is to get her a 504 Plan, or even better an IEP for other health impaired. Protect her immediately. DO NOT WAIT! She will miss a lot of school. If she is in Honors classes or AP classes there are laws that protect her under IDEA and 504. Get that protection right away...That will be the first advice that I will give you while she is in the beginning stages. If you would like me to post web sites for you I can. This will get overwhelming. Just remember you are her advocate right now, take the great advice from these wonderful people, they know what they are talking about. And they are also a great support group for us mommies. I don't know what I would have done without these caring people. My daughter did two three week Pain Rehabilitation programs. She has also undergone Ketamine Infusions, which have so far been successful. God willing they will continue to work. See about getting her someone to talk to, keep an eye on her and make sure that there is no depression. They tend to start losing friends. Keep a watchful eye and tell her everything is going to be alright.

Keep praying, keep your faith because it will be tested, I will pray for you that God will give you the strength that you will need to conquer this dreadful disease. I haven't been able to hug my daughter for many years, my heart breaks for you. As Loretta always says soft hugs to you.



SandyS

wow you pretty much just described everthing about her. I am going to do that test on her

Cassmom,

She may be "growing" into that birth injury.
TOS, is often associated with RSD/CRPS, and it's all got to do with the shoulders, arms, hands, ribs and upper musculature.(TOS) From what you're saying, I would really suspect the TOS first.

I have more questions about her pain?
1)Does it radiate up her neck, perhaps headaches, after exertion? Down her arms, weakness in her arms, fingers.? Tingling in the fingers?

2)Does she have deep, deep burning pain, like in the bones?
Skin feel cold, or hot?

The first set of questions would indicate TOS.
The 2nd, more like RSD/CRPS.

Here's a quick layman's test for TOS.
(Easier than it sounds)

Have your daughter stand in front of you, facing you in a well lighted room.
Have her raise her hands in like the "Stick em up" manner.
Arms @ a 90 degree to her body, then bent at the elbow, hands straight up in the air.
Now, have her 'push' her elbows rearward as far as possible, while slightly raising her hands. This might cause a "burn" in her shoulder blades, but it's only gonna take a minute or so.
What you're watching for is her pulse. @ her wrists.
Do her hands change color?
Pink to white?

If she loses her pulse and/or her hands turn white, that's a good indication that she's got TOS.
Most every knowledgeable Neuro and Hand / Arm / Shoulder surgeon will do this test.

Also, notice her at rest.
Does she normally "rotate her shoulders inward while sitting", (Shoulders forward) and drop her hands in to her lap, centrally? Does she like a pillow under her arms? For support?

If you want to PM me, I'd be happy to try to help more.

Pete
asb[/QUOTE]