I know I have a lot to learn about this new dx, but I feel the same way I did about this as I did when I was first dx'd with MS.

I am not going to obsess over it, I can't. I have a very sick Mother right now who is in the hospital and I need to support my sister.

Thanks for the tip about the ice, but I figured that one out all by myself! (Well, Shappy aka Shelley helped me just a tad with that one!) Heat helps wonders. I bought myself a lavender and flax wrap blanket for Christmas that I have been practically living in when I go to bed. It not only smells good but the heat is great. I think I've worn out my heating pad. I picked up some of those microwave gel packs last week and rotate them. They are great!

The PT assistant tried to put an ice pack on my shoulder today after the ultrasound tx and I said no.

I am looking forward to my trip to Seattle on Wednesday for the Trade Show. I know the flight will be a bit awkward but I can handle it. Afterall, I travelled with a broken ankle, I think I can do this!

I see I have some research to do before I see my MS neuro on March 6. Not sure what info she has been receiving from all this, but I think she's a bit in the dark! Could be an interesting visit with her!

Take care everyone!

I am so sorry to hear about your Mother. It is so hard to deal with our own pain and problems and you sound like a very strong, positive person to be the support for so many other people in your family!

One tip I've learned from this forum about flying (I haven't tried it yet, but may need to in the near future) is to stay more hydrated than you think you need to. Sometimes the pressure changes in the cabin can exacerbate the RSD.....you may notice more pain or swelling during or immediately after the flight. You may want to make sure you have the appropriate meds needed in case you need them while still in the air.

You are noticing the frustration that so many of us have regarding doctors. So many of them have never really heard of RSD and most have not treated it. I think most of us here feel responsible for our own treatment, learning as much as we can to protect ourselves against well-meaning but uninformed health care professionals. It is a good idea to read as much as possible to educate yourself, but to stop short of overwhelming yourself (note to self!!).

We are so glad to have you on our forum. I hope you will find it helpful and we always welcome new ideas and insight from new members (well, new at least new to the RSD forum....not to NeuroTalk!!). Best wishes to you!! Please do keep in touch and let us know how your flight goes next week!!

Cheryl,

I'm glad that you said No to the PT assistant using ice on your shoulder!!! Unfortunately, not that many Doctors and Health Professionals are educated in RSD and therefore don't know how to treat it or what to do etc. Before I was diagnosed with RSD, the PT's were constantly using ice on my RSD leg and it made the pain SOO much worse and I came out in awful blisters - they couldn't understand why my leg was doing that and said that it can't be the ice making it worse but it was and it was only when I was diagnosed with RSD that my Pain Management Doctor told me that ice is a big "No-No" for RSD ... needless to say, I never went to see those PT's again LOL!

I hope the flight to Seattle on Wednesday goes well and that you have a great time and don't have any additional pain, swelling etc!! As you might already know, I am flying to Vegas on 1st March and I am VERY nervous about it as it will be an 11 and a half hour journey for us but I have got lots of good tips off members of Neurotalk and my Doctors so hopefully everything will go OK!!

Here's a link to a post on this forum that I made about flying with RSD that you might find useful if you haven't already seen it:

http://neurotalk.psychcentral.com/thread70810.html

After speaking to my doctor about the flight, he said it was VERY important that I tried to move my RSD limbs as much as possible even if it ment just walking up and down the isles on the plane to try and keep the circulation moving and prevent any blood clots or anything. He also suggested that I sit in the seats at the front of the plane because of the RSD being in my leg as well as my arm as that would give me more leg-room and should be more comfortable hopefully ... I am in a wheelchair anyhow for long distances so my mum has requested this already!

Make sure you have all of the pain medications that you will need during the flight ... I spoke to my PM Doctor about what to do to try and prevent any flare ups and he said that he is going to sort out an "Emergency Pain medication pack" where he will sort some medications out for me that should try and combat any flares so you might want to talk to your Doctor about that also.

Take care of yourself and I hope you have a smooth and pain-free trip and have a great time - Please let us know how it goes when you can!!

Thanks for all the good advice. --- The title should be changed now..the dx is CRPS.

As for flying, I fly a lot but haven't flown since being dx with this. I have no doubt I will be fine. The doc said to wear my sling so I won't get jostled and so I won't be tempted to do things I shouldn't Who me?


I had the nerve block on Friday morning. I am just now, Sunday morning, starting to feel some relief from it. I think we over did it at PT on Thursday. I think my PT guy was trying to find my limitations and we may have over done it just a bit. Won't happen on Monday.

I am still learning, just as I am still learning about MS. Keep the advice and tips coming.

And Yes, I learned about ICE. I figured that out pretty quickly. Although it's pretty common to not use ice on an injury after about the first 48 hours. I think the PT assistant was following usual protocol. She knows now.

Hope you all are having a good weekend!

I had nerve block injection #3 today and doc said that would be it. He said let's see what happens now. Since the pain hasn't returned inbetween the injections maybe they are working! Keeping my fingers crossed.

I continue the PT.