16 yr old just diagnosed with RSD..No help :(
 

Hello friends. I am the Mom of a 16 year old girl just diagnosed with RSD, 3 weeks ago. I am beyond frustrated and so scared! I live in the Midwest, and so far I have mixed messages and nobody seems to know for sure what I should be doing. I have read many things (conflicting) I have called the research center in Florida, I am talking to a Neurologist that diagnosed her, but admits she knows little about the disease. My daughter injured her right hand 2 years ago playing softball, we went to 9 doctors over a 2 year period before getting to where we are now. The pain has moved from her right hand, to her elbow, to her shoulder, and now she complains of headaches, and eye pain only in her right eye, with some blurring. Her hand turns a bluish color occasionally and swells some. I just got off the phone with the Neurologists PA, the Dr. tells me that the eye pain and pain in her head are not associated with the RSD. How can this be?? It's only on the right side of her head..as all other pain is on the right side. I have read that early diagnosis and treatment is beneficial..what treatment? What should I be doing?? Please help me.. I feel so alone and scared. I want to help my child, but I don't know what to do, or who to turn to. She is currently only using a pain medication rub that seems to help the pain some. We are talking about putting her on an antidepressant for the nerve pain. What can I do to slow progression?

Welcome, sorry why you are here;...you are NOT alone. RSD is now CRPS. Others more advance with knowledge will come along to help you. :grouphug:

Thank you!!!! Thank you!!!!!

Hi Pat,

So sorry to hear about your girl. It's hard enough when we suffer, harder when it's our kids. We all know how scary it is in the beginning, the fear, the feeling of isolation and the constant worry. Try not to panic. Save that energy for healing. A lot of the internet info is downright frightening and quite a lot of is NOT true. Consensus among experts is that 80% of people get better over time and with treatment. Kids and teens have the strongest healing capacity and best chance to kick this crap. Look for more knowledgeable doctors and ones that have a positive outlook. A doctor who believes this is a death sentence might give up sooner. I have done well with neurology and also with Physical Medicine and Rehabilitation who often get quite a few CRPS patients in their practice. Make sure nothing got damaged nerve wise in that injury via a nerve conduction study and get started on gentle rehab. If you have to travel for decent care then find a way to do it. My best doctors are three hours away from me and they are worth every mile on the road.

There are good meds and supplements for nerve pain and nerve health. It can take a few tries to find a good fit for that so be prepared. You mentioned an antidepressant, the old TCA meds are good for this, amiltriptyline can cause more side effects as it's first generation. I take low dose nortriptyline 20mg (I am little and tolerate this dose well) it helps and is given for migraine headaches too. Desipramine is the same family and also good. Some do well on neurontin. I always recommend a video by Dr. Pradeep Chopra on http://www.rsds.org that has lots of tips on meds and therapy and general info, talks about kids too. He gives a rational hopeful platform to start from. Advises against invasive treatments like spinal cord stimulators. Dr. Michael Stanton Hicks at Cleveland Clinic also gives good info on a continuing Ed presentation he did for pain docs. I can't get the exact link because it is really long but if you Google "Dr. Michael Stanton Hicks and Phenoxybenzamine" it comes up as the first hit. He also says CRPS gets better with time. The key is getting pain reduction and getting that limb gently moving. Blood flow = oxygenation = healing.

Hang in there Mom! There is help out there you just have to be stubborn about finding it and advocating for work up and whatever help or therapy your daughter needs. Don't forget teens have the best chance of coming out of this. I wish you all the best and will be praying for you and your family. Come here when you need to vent...

Sending Healing Love,
Littlepaw:hug:

I can't thank you enough for this response!!!! I think maybe as I read I learn that although she has had this for 2 years, she has continued to use her arm..cheerleading etc. Maybe that's why she hasn't progressed to the point hwre she has untouchable skin?? I just really don't know. I am going to look into Dr Chopra that you suggested. We had nerve tests done, and luckily no nerve damage. I am at this point considering contacting the May Clinic. It is 10 hours away.. but I cannot find anyone in Nebraska to help and guide me. Again.. I tahnk you from the bottom of my heart... I wish I could yake this myself and spare her, but since I can't I will be her advocate and we WILL figure this out!!

You might want to read on our Thoracic outlet syndrome forum _ TOS for short..
http://neurotalk.psychcentral.com/forum24.html
be sure to explore the sticky threads..

Seconds on checking for TOS, a tricky diagnosis to make but an important rule out. Cleveland Clinic is also an option as is Stanford, great pain program there.
It's great she is active, that makes all the difference. Not everyone has allodynia. CRPS is a spectrum and not all symptoms are present in everyone or all the time. Take a peek at the Budapest criteria...

Littlepaw

T.O and Carpel tunnel, cubidal tunnel were some of the firt things they suspected. She had 2 nerve tests, and 5 MRI's before they came to this conclusion

Is she guarding the hand? This can cause problems travelling up the arm, into the neck and down her back. (been there)

Have her try working with a massage therapist at least on her neck and back--that might take care of the headaches. (helps me!)

Swimming in warm water might help her to start moving. (helps me!)

Maybe have her try Tai Chi or a low impact yoga class? (has helped me!)

Does she have neck/shoulder/upper back pain? ( muscular based)
Trigger points in neck or upper back? (headaches/ blurry vision/eye pain)

TOS is as rare as RSD so unless the drs were experts in TOS they might be basing the dx on limited information..

And it is possible to have both RSD & TOS unfortunately....
Reading both forums sticky threads will help you to see if, or what might fit best..

What was the original hand injury?

Thank you! Her injury came when she swung the softball bat, she felt pain, took off her batting glove and her fingers and palm were discolored. In the 2 years she's had this she has continued to use the arm (cheerleading etc.) I will read all of the sickies to see what information I can get. The ortho that saw her and tested for TO and the other suspect issues seemed knowledgable. It's so confusing...some things fit, some things don't.

Here are some interactive symptom checkers that will help to find out if trigger points might be a factor -
http://www.pressurepointer.com/pain_reference_chart.htm
http://www.myofascialtherapy.org/symptom-checker/
http://www.triggerpointproducts.com/checkyoursymptoms


Some TOS info links from the sticky threads -
http://www.nismat.org/patients/injur...in-in-the-neck

She is not "guarding" the hand..has quit softball, but still cheerleading. My biggest, scariest worry now is her brain and eye. Can this cause blindness? Is there anything that can be done to protect from further damage to her eye? We are going to start on antidepressant for nerve pain...wondering if this will help the eye.

Wow my heart goes out to you. My son Matthew is 13, he broke his ankle in 3 places last September, had surgery for hardware implant, and was diagnosed with CRPS just after Christmas. He has been doing physical therapy in a pool and is about to graduate to the physical therapy gym. That's great that she is still active, I'm new to this crazy world of CRPS but from what I understand, continuing to use it is critical to recovery and keeping it from progressing. Physical therapy is the standard "treatment" and anything else is really geared toward managing pain and making physical therapy tolerable. Have you tried finding a pediatric pain management doctor? They would be your best bet for a doctor familiar with CRPS and how to treat children/teens in particular. Our son is seeing one at Children's Hospital here in Michigan and he has him on a vitamin regime that eases the pain (vit. C in particular), although it takes 6-8 weeks for the vitamins to start having an effect. He is on Vitamin B12, Vitamin C (500 2x day), Vitamin D, Magnesium, and multivitamins. He hasn't been able to tolerate side effects of pain meds. You do want to avoid any opiates for pain b/c they can have the opposite effect with this condition. Also, avoid icing it, the cold damages the myelin sheath around the nerves and worsens the pain. (Been there, done that, he was moaning and near screaming in pain and we couldn't figure out why it got so bad. If I were prone to mom guilt, I could write a book.) He does find relief from a heating pad and it may help a little with the circulation issues that cause the color changes. His physical therapist had him start wearing a compression sock. I don't know if there's anything similar to promote circulation for the arm.

There's lots of good support for you here, you're not alone!!