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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Sep 10, 2005
Thanks so much for all the information, I appreciate the help!! I am pretty close to the situation as this family is my only family in the St. Louis area (they've sort of adopted me).

I am not aware of any hot or cold sweats - night or day. Jada does spike a fever once in awhile but not too much higher than normal. Her sleep is interrupted by the pain but I don't think she has insomnia (I do - - - you'll find out if we keep chatting). "Interesting you mention ocular problems in Crohns...although you don't mention what kind your Mom had, Jada had perfect vision until this past year." [COLOR=Blue]Her Vision has gotten worse and she ended up getting Episclarosis.[/COLOR] She had to get glasses and the correction needed was pretty significant. There has been no bone scan done. They've done CT's and MRIs and have ruled out any 'medical' reason for her pain. [COLOR=Blue]That is all pretty normal testing. I have had over 8 MRI's, I stoped counting[/COLOR]

Some additional history - when the Costo first happened, she was asked not to participate in gym. Subsequent to that directive from her family practice provider, she was forced to do push-ups by the gym teacher. She's been in pain ever since. She was put on steroids for the Costo, and developed strep a short time later. Apparently steroids negate the effects of an antibiotic and her case of strep was worse than any I've seen. She developed severe pain in the right side of the abdomen and was hospitalized after some initial tests done for the Crohns (the external exam) didn't show anything. Appendicitis was ruled out as well. They did an MRI (I think), then biopsied the area where the inflammation was in her intestines which lead to the Crohns dx. [COLOR=Blue]what treatment have they given her for Chron's? Is that what the Steroids are for? How long has she been on the Steriods? The Reason I ask is because Steroids tear me up. You can guarantee that I will get strep, a sinus infection and then a yeast infection. I will stay doubled over for 40 minutes after I take the pill and to top that off, my body aches for about a week after I stop the steriods. Could this be the steroids or maybe a combo of the meds? [/COLOR]

The shooting pain in her stomach just started recently. If her chest is touched any time, the pain sends her through the roof. PT didn't help - they gave her a TENS unit, her chest pain and sensitivity seems to have worsened since then. She doesn't mention burning, just excruciating pain. [COLOR=Blue]This is very interesting. Does this pain only come on when she is touched or is it constant?When her chest is touched it hurts her tummy or you just can't any abdominal region and it hurts she all over?[/COLOR]

The doctor who diagnosed the Crohns was a GI doc. A rheumatologist diagnosed the RSD. She had a whole team looking in on her when she was in the hospital - she was what they called a "strange" case). She was seeing a pain mgt. doc who recently asked that they find another doctor - he doesn't know much about RSD in the chest. [COLOR=Blue]I would go see a that PMD that I posted the other day. Tell him she was DX and you need treatment. See what he says, if you don't get answers then consider going to another town or state(in the meantime I will keep searching for more Docs). I know that may be hard because I don't know you finanical situation, but sometimes that does not matter. I am 32 and I have a lifetime of pain to deal with. I can't imagine how your little angel feels. She must be so scared. [/COLOR]

They are at their whits end and she is becoming more and more depressed every day. She isn't really physically active but loves school and is very smart. SHe has only attended 4 days so far this year - - - which adds to her depression. [COLOR=Blue]What are they doing for pain mgt right now? I understand her depression. I was a Home Builder, working 60 plus hours a week, married and have 2 kids. I now suffer all day long, due to pain and other wierd stuff. It never ends. A couple of things to understand. I am an honest person, so I am going to lay it out. Doctors are NOT God or Healers. They only know what they know. Don't expect them to heal her. Some Doctors will get a poor attitude at some point, learn to see these signs, because they give up and get frustrated, so this is when you move on, I have seen over 13 Docs, and I lost count somewhere. Remember you are in control of her care, so ask questions, questions and know that you may not get answers and that is when you come here and get the truth.
All I know is that you and your family are headed for a long road and I am not trying to be negative just realistic. Keep faith that tomorrow will be better[/COLOR]

They have not mentioned doing any sort of block on her.[COLOR=Blue]The Way RSD acts, is that the Sympathetic Nervous sytem won't shut done, so the early treatment is blocking the Ganglion Nerves to stop the RSD, if you wait to long, like me, you can't shut it off and all you have is pain managemnt, not treatment. Don't expect any one Doctor to confirm all symptoms, One may only do Pain Mgt and the other only does skin, so keep it in their field[/COLOR]

[COLOR=Blue]Some things to keep in mind about how to treat yourself with RSD. NO ICE!!!!!!! ANYWHERE! Heat Only. If she gets the pains in her tummy try some mellow heat. Have her relax and and I know at 12 it is hard to understand, but I have learned to mentally remove limbs to help with the pain. We RSD'ers swear by Epson Salt baths. They are so soothing and even if the pain is bad, that always get you to relax and fight another hour.[/COLOR]


Please feel free to post and please let me know how she is doing.


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