Hi Cheryl,
Welcome to the RSD/CRPS forum!! I found the following link to Dr. Hooshmand's site linking MS and RSD. If you scroll down 2/3 of the way, you should find it. The first part is very beneficial with a lot of good medicinal information. I am glad you are getting some good relief from the pain with the blocks. Best wishes to you!

http://www.rsdrx.com/Multiple%20Sclerosis.htm

That was going to be my next question - a link between MS and CRPS! My PT guy asked me about that today as I was asking him about a precipitating event for CRPS. Wondering if it was the MS exacerbation I had in mid-November and/or the pinched nerve or what???? He said there doesn't always have to be a precipitating event. The doc confirmed that so...here I am, in the minority AGAIN!!

I am not one for depression. Never have been so don't expect this to put me there either! If I was, I would have been there already having been in pain like this and without the use of my arm since Mid/end of November! I look for the positive/funny side of things and don't dwell on the negative. Besides, I have so much on my plate right now, who has time!!!

I am learning to be left-handed which is hilarious because I am soo right handed it is ridiculous!

PT is a challenge but he is good and very patient with me.

Thank you everyone! I know my thread in MS has been a very long saga on my ongoing search for the cause of this pain but at last there is a light at the end of the tunnel! It wasn't exactly what I expected, but at least knowing is better than not knowing. It was like being dx'd with MS. Relief. Now we get on with the tx.

It sounds like you have a great attitude!! That really helps me, too.....trying to be upbeat and as optimistic as possible. Do not be surprised, with an additional diagnosis of RSD, if you find yourself more moody than you're used to being. RSD does tend to affect the limbic system over time, so many of us struggle with depression for the first time in our lives. A lot of us struggle with sleep, as well, also due to changes in the limbic system. These things do not happen to all with RSD, I only mention it so that you can recognize the signs in case it does and it won't alarm you. Many of us take an antidepressant to combat both the depression and the pain. Others have found other homeopathic remedies that work for them.

I am SO glad you've had relief from the nerve block. That is encouraging!! You may find that you will need several over time to keep your pain levels down while you're doing PT to regain the strength and mobility back in your arm/shoulder. That is the most important thing to keep the pain down, to keep the affected limb moving so that it doesn't freeze back up on you. Another thing that is very important with CRPS AND MS is to NOT apply ice (you probably already know that). It destroys the myelin sheath that covers the nerves which exacerbates both conditions.

You can search on this forum and find answers to almost every question imaginable! There are so many kind and caring people here that posted on almost every topic possible. It is a wealth of information and knowledge from people that have actually lived through it, not just read about it.

Thank you for sharing your story with us and welcome to the minority!! RSD is a very rare condition in itself. You can just say you really are one in a million!! Take care and keep us posted on how you're doing!! It's nice to have you aboard!!

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!