Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-21-2009, 07:00 PM #21
Sharon D Sharon D is offline
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I could use some advice please. My daughter has had RSD for the past 7 years. Trying to find a physician who treats this disease with some understanding is almost impossible. Can someone make a suggestion of a great RSD physician in the Syracuse or Rochester NY area. We are desperate. Please help. Thanks
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Old 09-13-2009, 12:35 AM #22
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Quote:
Originally Posted by jjjuen View Post
Hello MsL,

I know that this is a very old post from you but it answers a lot of questions I have been searching for.
I just celebrated (Ha Ha) my 1 year anniversary with RSD. My brother recently proposed to his girlfriend and they are talking about having their wedding in Mexico. As I live in Minnesota, I have a lot of concerns about attending their wedding. I talked to my doctor and physical therapist about my concerns about the flight- whether or not I could simply take a sleep aid to get through the flight and they both said that the were concerned about more than just the flight itself. They said it may be very difficult for me to deal with the temperature changes and other differences between Mexico and Minnesota. My doctor was concerned that I would be very sick throughout my stay in Mexico. I really hope this is not the case.
You said that you travel a lot. Do you have difficulties settling in to the new cities that you travel to? Should I expect more than the usual jet lag on any flights that I take? Does anyone have any suggestions on how to combat this?

Thanks,
JJJMN

Hi JJMN, First I have to say I'm sorry that you find yourself in this situation with RSD along with the rest of us here. I'm sorry for my late reply but I was travelling once again.

Since I have no knowledge of your specific details I'm not really able to tell you what the right thing to do is. I think it is always wise to follow the advice of your doctors as they know you best or at least they should.

That being said I have learned that the fear of what RSD can do to us is a very deeply entrenched and a very real emotional state that has the potential to place us in a serious state of denial from some of the greatest joys that life has to offer us. I don't deny my pain or the diagnosis but I do deny the fact that I cant go on living the way I have always dreamed of living even if I do have to compromise certain things to obtain those goals. It ultimately boils down to your your individual strength and spirit. If you want to believe that RSD will control your life completely it will. On the other hand if you are able to accept that RSD is just one aspect of your life and that you and it they can co-exist together you will find ways to learn how to cope with the various strains on life that affect our RSD. Hell I find that that my RSD can jump from mild to extreme by just sitting in the same room for a whole day with the exact same temperature and environment. So I long gave up trying to protect myself in a bubble.

I've just returned from travels in Europe going by planes, trains, buses, boats and hydrofoils, each environment was different and I carried appropriate clothing, heating water bottles, pads etc to help me deal with my rsd as it presented. Dress in layers so when you are too hot you can peel off the layers but when it's too cold for you you can add it all to protect the specific areas that need it most. I even managed to walk more than I expected I could on some days and on those days that I just couldn't do it I took the traditional tours where little walking was required.

I try to plan for my flights...for me it means having my lidocaine appointments scheduled before and after my travel dates. Yes you will feel the physiological effects more than the average person but you can counter that by adjusting your pain and anti-inflammatory medication slightly and by drinking only and lots of water before during and after your flight. I also double up on many vitamins before hand.

Most impotantly you are the one who makes your decisions, listen to the best advise of the professionals who are treating you, ask more questions, be prepared for every eventuality but please don't let the fear of RSD be your enemy.

I wish you well and I do hope you will find a way to attend you brothers wedding RSD and all.

MsL
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Old 09-13-2009, 06:06 AM #23
CZZ74 CZZ74 is offline
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Originally Posted by bassman View Post
Ali,

My case is not as advanced as yours sounds, but I have flown a fair amount both for business and pleasure. Most of my flights have been 1-1/2 to 4 hours long, but the length did not seem to matter much. It was being cramped.

My biggest problem, until recently, has been swelling of the lower left leg. Because of the pressure changes, my foot would swell quite a bit more than usual. I always wear velco-close shose so I can either loosen them or easily slip them off during the flight. Also, I would try to sit in a seat that would give me the best opportunity to stretch my foot. If I have to put my foot into the aisle for comfort, I would explain my situation to the flight attendants so they know why I am doing that and they can tolorate it. (It is generally against rules to block the aisle like that, but they give me leeway for medical problems.)

My swelling is worst when I have to sit for long periods. Being on the aisle seat allows me to stand once and a while, even if I don't walk around. This helps, too. Switch seats with the window person (if you can) once you get over the western US - the view is fantastic!

As I suggested at the beginning, once the swelling happened, it usually did not get worse with a longer flight -- just more time to deal with it. That's where a sleeping aid might help.

Finally, perhaps your travel agent can snag you an upgrade to a roomier seat, if your mum will let them know about your condition. If the tickets were bought directly from the airline, have her call the customer service department. (It will be a long time on hold, but may be worth it.)

I hope you love Las Vegas. It is truely a unique experience. Last time I was there, I had flu. I was miserable, but still had a good time!

Good luck and have fun!

Mike
Mike, swelling is a scary problem in the air, blood clots etc. be careful with your extrended travel. cz
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