Reflex Sympathetic Dystrophy (RSD)

[mwaters22]

Hi my name is Megan and I was diagnosed with RSD over four months ago. This all started from a stupid slip and I slammed my hand into the wall. There was a lot of swelling moving my hand, wrist and forearm was like pure torture. I went to and Ortho to get it checked and x-rays came back clear. And he put me in a temp cast for two weeks, then I was supposed to come back and I was rechecked again. X-ray was clear, but the swelling and pain was still the same so he sent me to another doc. Well it was two months before I could be seen and when I finally seen he was completely rude and basically blew me off. He looked at my hand a few times and said it was RSD and put me on the lowest form of Neurontin and physical therapy which that did nothing. Well finally after a month, I was tired of nothing really being done so I made an appointment with a neurologist that my mother works with he’s a great guy and he’s really trying to help. All of this is really hard to deal with, I’m 22 years old and in college and the RSD is in my right arm and I write with my right hand. Its hard to do everything with my left. My major is in Graphic Design and Animation, my minor is in Paramedics. I live to draw and it hurts so much knowing I might not be able to do it again. I’m doing the Nerve Blocks, medications and a lot physical therapy to try and get my movement back in it. I want my life back and I’m trying my best not to feel down it’s just hard sometimes but drawing again and my family and friends try to help. If anybody lives in Indianapolis, Indiana you’re not alone with this stuff.

[meg20]

Hey Megan, my name is Megan as well and I too am around 4 months in to this whole... i dont even know how to describe it. I have RSD in both of my ankles and i know what its like to not be able to do the things you love when its a struggle even to go to class. I'm 20 and also in college. I can't really give you much advice because I'm new at this too but I tried neurontin and it made it really hard for me to concentrate especially bc I have ADD and i take adderall. But right now I'm doing intense physical therapy and taking 10-650mg of percocet when needed. I'm going to a pain management clinic soon and if something there works I'll let you know. But what i can tell you is stay away from ice, always keep your injured area warm, and try not to stress out...it only makes it worse. Just keep a positive attitude even when you feel like your world is crashing down, and surround yourself with those you love. If you ever need to chat your more than welcome to email me at [moderator note: e-mail address has been removed]. Stay strong :)

love,
meg

[G0J0G0]

Hi Meg20 and MWaters22,
You all are correct, dealing with this is monsterous at best.. Meg20 your advice is right on target, stay away from anything cold; the first thing most docs will tell you to do is apply a cold pack. This is an absolute NO NO. I can't stress this in strong enough terms. Also keep the stress down and by all means keep moving. The addage "use it or lose it" is never truer that with an RSD patient. I have had this for 2 years now and by no means am I an expert, but I can tell you all that your lives as you knew it 5 months ago is changed for ever. There is a small chance (about 1%) that you can get it into remission, but this is so rare that is hardly worth mentioning. Anyhow if I can offer you any info from my limited knowledge base, reply and I will try to assist. Meg20 the moderators will remove your email address tomorrow, but I copied it down and will send you some web-links on RSD if you would like. You also can google search the letters "RSD" and or "CRPS" and find a wealth of info. Here you can d/load the toolbar and chat with others with like concerns. Again if I can help you all in any way drop a reply and I will get back to you asap; you can also visit rsdandyou,com for support with out any biased information. Everyone there has RSD and welcomes your input and will offer support unlike most sites around, with the exception of the one here... Have a great day and many blessings to you both, g0j0g0

[uphillbattle57]

RE: Division 1 freshman Volleyball athlete (diagnosed l month ago)

Dear 4 Months In:

This is not my story but my daughter's. She just turned 19 in August. She is my BIG GIRL all 6' 4" of her. She plays the middle blocker position. She has played athletics since she was 8 and never had a serious injury. A few strains/sprains and hyper-extensions never anything serious. She has played basketball, soccer through the years but made a choice of volleyball as her #1 sport. She played year round and was actively recruited by many D1 colleges starting in her sophomore year in high school. She is an average student that has to work hard for her grades.

She left for school in the beginning of August of this year excited and happy to start her new life. She decided on a mid-western college which is about 8-hours from us but she has an aunt and uncle who live 5 minutes from campus. She worked hard all summer with a trainer to get herself in the best shape she could to get ready for pre-season (2 a days).

My BIG GIRL called after 10 days of pre-season from the hospital saying she needed my insurance card information. She said she thought she might have a hairline fracture in her wrist. We got the results of x-rays which were negative. She still continued another 10 days doing lower body work-outs and strength training with one hand. She had another x-ray and MRI both negative. She was told it was just a wrist dislocation since her wrist is double jointed and has some laxity. Well after about 4 days the swelling continued intensify with burning, tingling and throbbing and extreme sensitivity on the top of her hand. She was sent for a triple bone scan and then was diagnosed with RSD.

She has been under the care of a great team of team doctors, neurologist's, hand specialists and hand therapists. They are very positive that since they caught the disease early that she should get back the use of her arm and wrist. Her uncle is a retired PT and has been also following her closely. She had her first nerve block yesterday. They really are trying to get her back on the court.

She has a phobia of needles and has been dealing with sleeplessness, pain, burning, tingling and all of the symptoms that come with this disease. She has been a real trooper with handling all of this. She has been medically red-shirted this year and has a POSITIVE attitude that she will get a chance to prove herself next year to the team and coaches. She said it is very DIFFICULT standing on the sidelines and not be able to contribute.

She has a triple "WHAMMY" to deal with being away from home, trying not to be alienated from the team, still attending all practices and games (even though she can't play), trying to keep her grades up and dealing with this disease.

Her trainer advised her not to go on to the internet and get information about this he said that if she has any questions or problems to contact him or her team of doctors. She has only read what information the doctors gave her. I have been the one to do the research and it is very overwhelming and scary. I don't want to be a pessimist but I am a realist. I am hoping that the doctors are correct with their assessment and she will play again.

I am going to remain in the POSITIVE MODE for her because attitude and mind set is very important when battling any hurdle.

My heart goes out to all of the people who are afflicted with this disease young as well as old. I call it the "kooky" disease. No real idea why it happens. It doesn't even have to be a major injury to occur.

I hope won't be too much for her to handle. Any comments would be appreciated.

[propwash]

Hello Megan and also Megan,
I am Keith. I am 12 years into this 'black hole' of sorts. A great place not to be in. That was sound advice to Megan #1. For sure keep the areas warm. Do not stay with any Dr. that does not believe you. Be persistent always. I have this stuff in both legs up to the hip jounts and in my right forearm.
The reality of this garbage ( RSD) is that it has a mind of its own. It likes to mess with your life if you let it. Hard not to huh. Hurts always even while medicated. Try to find a happy medium if that is possible for you. Some sort of balance between pain killers and pain. Knowing both are not good for your body. The pain killers themselves have their own evil that can be as bad as RSD in side effects.
With me the drugs made me look stupid to others. Hard on the old ego ya know. Try to stay away from drugs that contain valium. Not sure of that spelling. I had my first and only car wreck on that stuff. Lucky I was following my wife in her van. True...Really messed up my 69 camaro front end. Did nothing to her car. All good though. I am now able to work on my car again. After the 10 year mark with the RSD I started to regain my stregnth and some pain went away. Better off now, but far from what was normal. Be ready dear Megan for a possible rough ride with this. Keep the faith, God bless.
Keith B.

[Layla]

Locate drs that truly understand the rsd. Obtain PT that do not have a cookie cutter operation giving all clients the same therapy, obtain a neurologist and or pain mgt team that can prescribe your meds. Let's hope you can start to maintain the pain soon.

[G0J0G0]

Hi uphillbattle57 ,
I hate to hear that your baby girl is facing this monster, for it can be classified no other way. It is a good thing for her to have a PT in the family for this is THE best option or chance for her to beat this. The remission rate is in the 1% range and that is iffy at best. Yes I wrote the number correct that is 1%. She needs to keep it moving, stay on her meds, and stay with a doc that knows the disease. I differ radically with her trainer about her researching the disease, for reasearch is her best ally. I had never heard of RSD until being introduced by surgery two years ago and would be utterly lost without the information I have learned by research. If you all decide to follow the trainer's suggestion then you need to take that role on, for this disease is not treated the same for everyone. What works for me may not work at all for your daughter, and what works for her may be detrimental for another. This is why you all need all of the information you can glean in your arsenal so you can handle all of the quircks and ilks that are associated with this. Look up Dr. Hooshmand, www.rsdrx.com, he is a retired physician that treated RSD for more than forty years before retiring and he has probably done more than any one person in learning this and fortunately for us he has published a lot of his findings on the internet for all of us. I pray for the best for you all and while you all have to determine if your trainer's advice is good for her or not, what ever you do continue to research for yourself. May the Lord bless your endeavors and may she enjoy many pain free days, gojogo