NeuroTalk Support Groups - Has anyone heard of CRPS starting like this?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Has anyone heard of CRPS starting like this? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/119415-heard-crps-starting.html)

Hi Lisa,

So sorry that your daughter has to deal with this.

I don't think a trauma is necessary the second time around......I think once the nerves are screwed up, RSD can just pop up wherever the heck it wants to. What worked before for her that she was in remission ?

Quote:

Originally Posted by bajntime (Post 644691)

My 15 year old daughter has been in remission from CRPS of her thumb up to her shoulder for 3 years.

2 months ago she woke up in the middle of the night with extreme lower right quadrant abdominal pain and right side back pain. She has been tested for just about everything. Appendicitis was the main worry. She has had 2 CT scans, 2 xrays, 2 ultrasounds, colonoscopy, endoscopy & loads of blood work.

Because of all this testing the do not believe it is her appendix, kidneys, liver, gallbladder.

1 week after the onset of pain, she woke up with broken blood vessels all over her stomach & in her armpits. The rash disappeared after a couple days. She still occasionally will get a couple dots of the rash but nothing like the first time. After the rash she was tested for lupus, lymphoma, etc.

One month after the onset of pain she complained of her "brain burning". She says it feels like the inside of her head "her brain" is on fire (top back of her head). This symptom is still with her but it happens only occasionally.

Her abdominal pain has never left her. She describes it as a constant dull pain (pains scale of 5) and stabbing pains (pain scale of 9). The stabbing pains happen a lot but are not constant like the dull pain.

She has seen her pediatrician, general doctor, gastro doctor, rhuematogist, hemotologist,& infectious disease doc. Nobody can find anything wrong.

She is going to see her pain management do at UCLA soon. Over the phone she told me that it is probably CRPS.

MY problem with accepting this diagnosis is: There was no trauma. She just woke up in pain. The broken blood vessels don't sound like CRPS. Her skin is not hypersensitive. I have her do sit ups & it only mildly makes it hurt worse.

Both my daughters have had 2 major bouts of CRPS so I am very familiar with how it usually behaves. I know it can go internally but I just don't know if this is CRPS.

~Lisa

Hi Lisa, here is an abstract on famlial CRPS that may be of interest, i wish I could get the whole research for you.

http://www.metapress.com/content/ut2mm85h484763l0/

~Sandra.
RSD/CRPS Research and Developements

Please get her checked for lyme disease as the rashes are just like that. DO NOT go to a regular lab. There are only three labs in the country that do a DNA test that can pick up the DNA of the spirochete in her blood. PM me if you want info. Lindsey in Mexico is a full body lyme/RSD patient with no injury. We are trying to get funds for a study for RSD patients to test for lyme thru one of these labs only. These two diseases have way too many similar symptoms.

Dear Lisa,

Yes, I do know that RSD can spread in women in atypical locations. I know a patient who experienced a similar spread after having RSD localized in her arm.

Since you mentioned UCLA, my assumption is that you reside in California. My recommendation is that you seek a referral to the Pain Management Center at UCSF where they have top expertise in RSD research at treatment. You can obtain the information required for a referral by calling them @ 415-835-7246.

They will see your daughter and perform a comprehensive diagnosis and treatment plan. They will then work on a consultative basis with your primary physician and forward the treatment plan and prescriptions to him/her.

I have used the UCSF Pain Management Center since my diagnosis with RSD in 2003 and found their physicians to be superb, offering access to the latest in diagnosis and treatment based upon international research. Their staff is caring and compassionate. They will develop a comprehensive and accurate diagnosis and treatment plan to work in concert with your doctor.

The key is to get a rapid and accurate diagnosis before any additional time passes. UCLA is an excellent resource, but it is not a center of competency for RSD. I send your daughter much encouragement from someone whose life has been positively impacted by the expertise at UCSF.

Something sticks out....

Quote:

Originally Posted by bajntime (Post 644691)

Hi Lisa,

Sorry to here of this situation but I will make it short. What hit me first when I read your post was the rash on the stomach, and arm pits and adding pain made me think of shingles. Did your daughter have a heavy chicken pox episode or have the chicken pox shot? I ask because if she had a heavy bout of pox that could lead to shingles. The shot has to come with boosters it's not a life long vaccine, as your probably no already, so she might be more app. to get that type of virus. This is the time of year for this kind of stuff. Just Maybe.....

Good Luck,

Gabbycakes.

I hope your daughter feels better.....