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!
Quote:
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.
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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!
