I am so sorry to hear that you did not find Dr Sherry's programme a success Nikki, but I hope that you do find something that will help your RSD.

Terry, I wish you're son the best of luck with the programme. It will need a lot of determination and strength, but it will pay off. I would like to offer one word of advice to you though- that you and ur son begin the programme with a positive mindset, despite the fact that you may have heard some negative experiences of it. For the best results from these intense rehab programmes, positive thinking is vital, it is important to really believe that the programme is going to help your son get better. Remember recovering from RSD is a battle, but it is a battle that must be fought and one that can be won.

With regard to stopping medications, the idea is that seeing as most children report no pain relief from their meds, there is not much point taking them, especially because of the effects of them in the long term- as tayla4me already mentioned. Therefore they are stopped. As soon as I begun my intense physio prog my medication was stopped and I havent taken anything for my RSD since then.

Again good luck to ur son.

Estrella

Hi Estrella,

Thank you for your kind words. I agree with you in that we have to go in this a positive attitude that this is going to help my son - to think otherwise would be self defeating. I'm not sure if my son believes it's going to help, but we keep talking it up and we've told him we will never stop trying to help him.

I'm glad to hear you too stopped meds with physical therapy - did you or do you find the physical therapy helpful? I wish you pain free days and nights and I really appreciate your support.

Thanks,
Terry

Hi terry

Yes physical therapy has really helped me. I went on the rehab programme at GOSH which I mentioned earlier. It uses a multi-disciplinary approach but mostly focuses on desensitization and physio; it was one of the hardest things I have ever done but the best thing I have ever done too. It totally cured the RSD in my arms and back. It also greatly improved my leg. Although my leg still hurts a lot, it is far less sensitive to touch and I have regained full range of movement. I have learnt to ignore, well cope with, the pain (as far as that is possible with RSD!) I continue to do physio every day and I am certain that with time my leg will recover completely too.

The reason exercise is so important with RSD is that it releases endorphins,(which actually translates to 'morphine within'!), the natural painkiller inside our bodies. Exercise also increases oxygen supply to the muscles which helps to reduce swelling and discolouration of a limb. Increased oxygen supply is also known to decrease pain- which is why some people find help from HBOT. Exercise regains function of the limb and also restores muscle strength. It also boosts energy levels in the long run because as your muscles get stronger, your stamina increases so you can do more. Regular exercise improves sleep quality so that coping mechanisms are better and you are more able to cope with the RSD pain.

Sorry about such a long message, I could ramble on for ages about this- as you might have guessed I am a huge fan of these intensive physio programmes for kids! But for good reason I think because I know so many children with success stories after going on them.

I hope this helps. Keep up with the positive thinking

Estrella

Hi Estrella,

I am so glad that the program has been helpful for you - it definitely gives me hope!
I hope your leg gets better soon and that you can be totally pain free. Keep doing the hard work - it seems to be working!!

Thanks for all of your encouragement.

terry

Hey terry.

i really hope jesse benefits from the program

i currently have rsd in all 4 limbs (started in ball of right foot), my entire backside (head to toe), sides, so its pretty widespread. i started the program w/ rsd in both arms and from knees down but it spread whhile at pt.

right now for the rsd, i am seeing a pain management dr. he is really nice and respects my decisions. i am also seeing a dr for my blood pressure. i see lots of other drs every so often. i started lyrica a few weeks ago. since taking it, less flare ups but more severe. im on sleep medsalthogh they really dont work well... i am starting pt again in a few days. the lady seems nice. she said she is taking it nice and easy and will stop if it becomes too much. i have tried acupuncture........did not go very well....at all.

so far, i havent really found anything that has really helped my rsd. i do find it helpful to let my teachers know whats going on. they help me out a lot. one lets me lay on his couch during class , one is really good at telling if in having a bad day (she is a nurse, teaches health science technology) and will let me lay my head down and stuff, onewalked me to the nurse today in the middle of class. i hope your son has understanding teachers. that really helps. i do try to go to school as much as i can. i went homebound last year and HATED it. haha, try having ur spanish teacher offer to teach you all ur classes and not speak english very well. but being w/ my friends at school helps out. but sometimes school can be hard to tolerate. you have to know when its too much and when to take off a day or two.

right now, the only suggestion i have is if you dont already have one, try to find a pain management dr that your son trusts. if he doesnt like the dr, then much wont get accomplished.

good luck to both you and your son. i hope you have success in dr sherrys program. feel free to keep in contact.

nikki

by the way, for rsd in jesse's stomach, how do they do pt with that?

Terry, I am new here...my name is Tracee. I am 28 years old and have had RSD since I was 16 going on 17. Since my Dx I became self educated in RSD, For about 5 years I joined a few groups and became very involved in RSD awareness. Then I became tired and completely gave up. It wanst until I found out my rsd may have traveled from my Rt leg to my Rt foot that I started researching new treatments. Thats how I found this forum. Anyways, I would just like to say, (having RSD as a young teen myself) My parents and I were told by many Drs that I was to young for any kind of prescribtion drug pain relief and that PT and water therapy would be suffient. As a child in pain, with no coping skills and only my parents to lean on, you need to question the doctors...dont let their word be set in stone like theyre God. Because thats what my parents did and I am paying for it now. I do not blame my parents at all, in fact I put them on a pedistal for what they scarficed for me to get the treatment I needed. However, in the beginning they made me do everything the doctors told me to do. (arent we raise that way? Not to question our doctors)Pain does not discriminate so doctors shouldnt either. Adults are give medication to help their pain while children are left to suffer because they are to young. This is crazy. I know it is hard to make decision in the beginning, thats why I posted to you. This program may work and it may not. I am not familiar with this doctor. However, I urge you to ask questions, lots of them. If the doctor becomes offended in any way then walk away because he or she is not helping your sons best interest. A great doctor will answer as many questions as you can throw at him or her and not bat an eye. I hope this post made sense. I am not a good writer, I am great talker. LOL. I hope things go well for you, your son and your family. Tracee

Hi Tracee,

Thank you so much for your advice. We tried medication first - amitriptaline and neurontin - neither helped the pain. At this point our hope is that the physical therapy works, but if it doesn't I will be out there looking for someone else to help my son - I don't want him to suffer if he doesn't have to. Dr. Sherry has had some good results - I have to have faith that we will too - I will deal with the alternative if it comes up.

I'm sorry you have had such pain in your life - I hope that you are finding some relief from medication, exercise, etc. I have my son seeing a counselor to help cope with his feelings - if you have any other suggestions for me I would love to hear them.

Thank you again and I wish you pain free days and nights.

Terry

Hi Terry,

Do you have an appointment time yet for Jesse? I am hoping it is really soon.
One of the good things about Dr Sherry is that he is very transparent, he explains why he has such wonderful results but makes no effort to hide the fact that it will be hard work.
As you know, medications notoriously do not help children with pain and to commit a child to a lifetime of medications which have poor pain relieving effect butsome very shocking side effects is why he is seemingly anti medication.
I am so sure that yours and Jesse's determination will see him through this treatment with success.
Love Tayla

Hello my name is Deb, I am raising a granddaughter that has RND reflex neurovascular dystrophy , we just found out in october , she goes to childrens institute twice a week for physical excersise, she will be going in soon to stay for more physical theraphy, waiting on a list.LOng story short , astma attack, ent doctor put her under and in recovery she has not walked since,
when your son was diagnosed with RND did you have a hard time finding things on it?? I joined a couple od groups with RSD and they told me they never heard of it, and they dont respone back.

Deb

Hi Deb,
We took our son to the ER multiple times and then we were finally told to see the diagnostician at CHOP - that is how we received the diagnosis. He tried to treat my son with meds, but they didn't work - we were then referred to Dr. Sherry - he confirmed the diagnosis and we are waiting for the physical therapy treatment. This all started in Sept. and I can say we were finally diagnosed by Dr. Sherry in Jan. - but we are still waiting for treatment - very frustrating. We have an appt. with him on Monday - I'm hoping for some good news.

Where is your grand daughters RSD? I hope you have better luck with this group - they have been very helpful for me. I'm sorry if I am late getting back to you - we went on vacation to get my son exercising in some warm weather - I think it was helpful!!

I wish your grand daughter well - I'm here if you need to talk.

Terry