[andreagibson]

I'm introducing myself to the group. I've been reading many of your post for about two weeks. Ashton, my 18 year old daughter has RSD and I'm despirately seeking any and all info I can find to help us out. She sprained her ankle at church camp in July and it quickly turned into RSD and she lost use of her foot/leg quickly. As I see from many of your post, I feel lucky that our Orthopedic diagnosed it quickly. She is now under a pain management Dr. and we have undergone a nerve block and have a TEC (to be removed today). Sadly I think the pain will come back. She has been able to rehab her foot/ankle/leg to partially bear weight and get around with a walker. I need to know what has worked the best to control pain and RSD symptoms for any of you. I know it is all a shot in the dark, or so it seems. I need to know what to pursue next or ask about next. The clock is ticking and I need to move quickly. She is on Lyrica, Lidocane patches and celebrex now and before the TEC was put in 12 days ago. Those meds seem to help a little but nothing as worked like the TEC meds.

Thanks for all that you write. I have learned lots and continue to be inspired by each of you.

Looking for answers

[frogga]

Hi Andrea

I'm Rosie - I'm 21 and have RSD from a fall 5 years ago. It sounds like she has been lucky and that her PM dr is good. If the TEC has worked then I think she can have one placed for longer to allow her to do more rehab with her foot and leg. My pain management dr told me that with RSD he feels the best thing is to have a mix of drugs - one tricyclic antidepressant (eg amytriptylene/ nortryptilene (sorry I'm from the UK and don't know the US drugs), one narcotic pain killer (anything with codeine), one anti epileptic (eg lyrica) and one anti inflammatory (eg ibuprofen). How is your daughter doing in school? Is she still going in? Has she had any hydrotherapy at all? that is sometimes useful. Is she continuing with physio? I have a very severe form of RSD so mine is very active but there are many people on this forum who are from the US and who have gone into remission from their treatments and they will probaly come on line to tell you more.

Good luck and I hope your daughter goes into remission soon

love

Frogga xxxxx

[emilys gramma]

welcome to our little home away from home.........

i am so sorry to hear that yet another (young) girl has been diagnosed with rsd..........so many young ones...

it is wonderful that your daughter is seeing a pain management doctor who can try to help her...since it was caught early she may be one of the lucky ones who finds remission.

i also have rsd in my ankle....i had lumbar blocks, and an epidural cath that gave me what i refer to as 'the closest thing to remission' as i can probably get.....

have your daughter come here to join in too.
good luck with her treatments, we will be here for you/her when you want or need us.....

again, welcome both of you.

[dreambeliever128]

Welcome to the group and do ask your daughter to come on as Claudia said. We have a lot of youngn's on here and she can learn from everyone here.

You are on the right track with the blocks and therapy. I hope that they do help get her pain under control quickly. Claudia is one of the lucky ones that got some of hers into remission in her foot and leg.

I was lucky to get some of mine into remission with several blocks and lots of PT. I am on Methadone, but only a small dosage to take the edge off if my pain level starts getting out of control. There are times I have to up it though. Other people have tried other meds and they will come on with more ideals to help you.

I am sorry to hear that your daughter has to go through this but when you both are here, you won't feel alone.

Ada

[InHisHands]

Hi there! My name is Vanessa, and I am 17 years old and have had RSD since age 15. If Ashton wants anyone to talk to, feel free to PM me, I know what she is going through, and I really hope this will help her. There's a really yahoo teen group for RSDers called "RSD Hope Teens" that she might find helpful and supportive, too.

As far as the best mix of medications- like Rosie said- the best seem to use a combination of medications targeted to alleviate RSD symptoms and pain:

Anti-convulsants
Anti-depressants
Anti-inflammatory
Muscle Relaxant
Opiods/ Narcotics

For instance, if you took one from each group it might be something like this:
Lyrica
Effexor
Celebrex
Baclofen
Oxycontin

It is best if you use one/ some out of each group over just one medication. Everyone needs something different- there is no one-size-fits-all approach to treating RSD, unfortunately.

A good place to start is the Clinical Guidelines at the RSDSA site:
http://www.rsds.org/3/clinical_guidelines/index.html (under pharmacology they go over the group of medicines and what helps for each symptom).


Treatments that could help are lumbar nerve blocks, physical therapy, massage therapy, psycho therapy, spinal cord stimulator, TENS units and of course medications!
Here is an A-Z list of treatments that you might find helpful in explaining treatments: http://www.rsdalert.co.uk/treatments/index.html


Physical therapy is helpful to some patients and especially hydro therapy! I have gained a small amount of relief with hydro therapy. Hydro therapy works better than regular weight bearing as you weigh less in the water, which takes some pressure off of your leg. Here is more info on hydro therapy (aka aquatic therapy):
http://www.rsds.org/3/education/aquatic_therapy.htm
note: continuing to weight bear is very important--even though it hurts awfully! (and hydro therapy helps with continuing to weight bear, by doing it in the water, as it's easier)

Desensitization is an important aspect in PT. By rubbing the affected areas, continuing to wear socks/ pants and using it, it does help reduce the allodynia (the extreme sensitivity to touch) to some degree. I am only able to wear clothes without crying today because this was considered to be very important in treating my RSD. It is slow at first, and very hard to allow anything to touch the affected area, but it will help in the long run if you work on it. You might want to look at this article for more info on desensitization: http://www.rsds.org/3/education/desensitization.htm

I don't suggest aggressive PT, as I had a bad experience with that... sometimes the wrong therapies can make RSD worse, and for me the aggressive PT made the RSD spread.

Make sure no ice is applied to Ashton's leg- ice is very dangerous in RSD!

On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin.

As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice.

source: http://www.rsdhope.org/Showpage.asp?...3&PGCT_ID=1910


If you are looking for any info, check out these sites:
-www.rsdsa.org
-www.rsdhope.org


Where in the US are you? I know of several good doctors that specialize in RSD if you are interested... I would highly suggest you look into seeing Dr. Robert Schwartzman or Dr. Ronald Harbut who do Ketamine treatments which have had good success. They both specialize in RSD, and are two very good doctors.

I hope this helps! Feel free to PM me if you would like to talk. I am sure Ashton can keep fighting through it all. It is not easy, but you can't give in to the RSD. Sending her and you many pain free hugs and prayers!

[bassman]

Hi Andrea,

Like everyone who has posted so far, it seems that the best thing in my case is a combination. I have currently have Trileptal, Ibuprofen, Oxycodone, Ultracet, plus a goodly assortment for other conditions like hypertension, diabetes, rheumatoid arthritis, and cholesterol control.

There is not one combination that works for everyone. Everybody reacts differently to all for these meds. Some people have severe side effects with Trileptal, while I find it completely benign. I was on pretty high doses of Methadone at one point, and it was like taking a piece of candy (slight sugar rush sensation – that’s all.)

I know that’s not what you’d like to hear, but I agree with everyone else that it seems like your daughter is in very good care so far, if she was diagnosed quickly. That is a good indication that her doctor knows what’s going on. There really are some MD’s who have a very puzzled look when you mention RSD, then probably go back to their office and look it up.

Do not give up any hope. It’s what keeps most of us going. Know that we will always be willing to listen and share experience here. Encourage your daughter to come aboard as well. There are (unfortunately for all of them) several other young women who can chat with her.

Mike

[tayla4me]

Hi Andrea,

Welcome to the site but sorry you had to find us

It is wonderful news that your daughter Ashton was diagnosed so quickly and treatment was initiated so early. Please do not think that she can't get better.

Many people have given you great advice and I echo what they say.
Blocks are the most effective tool in early RSD to bring about a remission.
A physiotherapist who is well educated in RSD can be a true bonus too. There is something called Mirror box therapy and graded Motor Imagery which is often undertaken by PT'S in the early stages of the disease which can halt the advancement of the disease too.

I wish you and Ashton lots of luck and that you will have some good stories to tell us before too long.
Cheers Tayla

[betsyherm]

Hi Andrea,

I wanted to say welcome to the rest of the forum! I hope that Ashton's pain doesn't come back after pulling the TEC.

I told you all about mine...my first TEC (cervical, for my arm) was only in for a week, and all of my symptoms returned fairly quickly. The second one was a repeat of that but for six weeks, and my symptoms never returned in that arm. That was eight or nine years ago, and I'm typing this message to you with that hand without any difficulty or pain at all. It took another couple of years of therapy to get it back in fully working order, and there was still a lot of stiffness and pain involved, but not much RSD pain after that TEC.

There are tons of options still out there for Ashton. A lot of people commented on medication. There are lots of things to try with that, and playing around to find the best combination with the least side effects is always a good idea.

PT remains important, even when there's a lot of pain. It's important to do PT despite pain, up to a certain point. That point is an individual assessment for each person. We have to push ourselves, but not until there's so much pain that it's completely unbearable.

I hope that the TEC worked better than you think right now. It seemed that the longer mine were in, the greater strides I was able to make with recovery. I hope that Ashton was able to accomplish a lot with the break the TEC gave her.

-Betsy

[Imahotep]

Good luck. Everything is working in her favor so hope for the best.

Keep pushing.

[ali12]

Hi there,
My name is Alison, I am 12 years old and I suffer from RSD in my right arm and left leg.
I first developed RSD on the 16th March (this year) from an ankle sprain, I was diagnosed 3 month's later.
I was then prescribed Amitriptyline (please forgive my spelling) to try and help me sleep at night. I developed a nasty side effect of "double vision" which resulted in a knock to my right arm, which again resulted in RSD.
I have had a Guanethidine nerve block which did not work, but instead made me lose my balance!!!
I am currently on:
Lyrica
Ibuprofen
Tramadol
Is your daughter still able to go to collage/uni etc?
Please reply
Alison
PS: If you or your daughter ever need to chat, I am here