I have MS and now the doc thinks I may have Causalgia. That's what he is calling it b/c I do not have all the symptoms of RSD. I present with more of frozen shoulder with a lot (LOT) of pain, hypersensitivity, swelling, tenderness, and am not able to really move my right shoulder.

This all started last November when I had an MS exacerbation. I had 3 days of IV solumedrol over the Thanksgiving holidays and my shoulder actually got worse. That was my first clue that the pain and swelling in my shoulder/arm was not related to MS. If it had been, the symptoms would have subsided. I ended up in the ER b/c the pain was so bad that no one could even touch my shoulder, arm, clavical area or my neck.

I have seen an orthopaedist, neurogologist (mine and another one), neurosurgeon, the ER doc, physiatrist, PT. I've had a complete MRI of my spine with and w/o GAD, MRI of my brain w and w/o GAD, MRI of my shoulder, brachial plexus, xray, EMG, and they have all come back relatively normal. I've also had 3 steroid shots - 2 in my shoulder and one in my neck (ESI procedures).

The spine MRI showed a pinched nerve at the C3/4 and 5/6. Some other pathology not related to my shoulder. Edema in the shoulder joint on the shoulder MRI.

But the biggest issue has been the pain. 10+ and the inability to move my right arm. And not being able to sleep.

The ortho doc decided to start me on PT this past week. The PT guy, Ron, says I don't present with "typical" frozen shoulder. He is seeing something more with the sympathetic nerves. Too much pain for just "frozen shoulder." So he calls the physiatrist.

I talked to the physiatrist on Monday morning and he had me in that afternoon for a sympathectic nerve plexus block. OMG! What a relief!! I could not believe the difference.

I saw him again today and he has me scheduled for another block on Friday.

My question is...what's going on for those of you who have been down this road? He says he is going to start me on a series of analgesic shots in trigger points in my shoulder to relieve the pain and hopefully allow me to gain enough pain relief to get some movement back in my shoulder through PT.

I am at the point right now that I don't really care...I do. I am so happy to finally be rid of this 10+ pain. But I would like to know more about what's going on. It's nice to not be on pain meds that don't really work.

I started Neurontin a month ago and can only take 300 mg. Lyrica freaked me out - hallucinations!! I am a drug lightweight!

Thanks to Ali for getting me over here...finally!

hi and welcome
i am so sorry that the pain is so bad .you dont have to have all sypntonms of rsd to have it. i dont have the swelling of rsd at all . but eveything else . it makes you wonder since the blocks work thats for sure. im glad that found us i hope that you get some relife from the block friday

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

Hi Cheryl,

It's great to see you have finally made it to the RSD forum, although I am so sorry that you have to be here!! Everyone is so nice and caring and I am sure they will be more than happy to help you and answer any questions that you may have so please, feel free to post about anything!!

I can't tell you how happy I am to hear that the nerve block worked for you - I had been following your story of the frozen shoulder on the MS forum and knew how bad your pain was so it was SO good to read a positive post and know that your pain went down to a more manageable level! I really hope that the nerve block helps you on Friday and that you get even more pain-relief - you are in my thoughts and please keep us updated when you can!!

When I was diagnosed with RSD, my doctor immediately did a nerve block (like the same day!) into my left foot (the leg with RSD) but unfortunately, I developed a major complication that left me in a wheelchair for over a year! My Pain Management Doctor didn't know that you should NEVER inject into an RSD limb unless you absolutely have to so he went ahead with the procedure and by that time, it was too late for me unfortunately and it was only after I had the nerve block and the complications started happening that my mum found an article on the internet stating NEVER to inject into an RSD limb unless it is absolutely nessacary (sp?)!!!]

At the time I was diagnosed and because of all of the complications I developed, I ended up staying in hospital for about 3 weeks and during that time I had LOTS of Physical Therapy and my Doctor put me on various medications to try and help me and relieve some of the pain! I was eventually discharged, still in a wheelchair and I then went 3 times a week for PT and to see my Doctors.

The most important thing to do is keep moving your limb - I KNOW it hurts but that is one of the things that will help you a lot in the long-run!!! I have Dystonia on top of the RSD (it's a complication of the RSD) and I haven't been able to move my leg for nearly 2 years now and am looking at going down the casting route now as nothing else has worked ... i'm not looking forward to it at all as I have read so many horrror stories about it!!

Also, unfortunately depression goes hand-in-hand with RSD (I know it certainly did for me!) so if you feel really down, please go and see a Psychologist and see if they can help you! At first, I really hated seeing my Psychologist as he was useless but I eventually found one that was really nice and she made a huge difference to my life and taught me different techniques to work through the pain etc.

I'm thinking about you and if you have any questions, you know where I am - I'm more than happy to help you if I can as I know how scary it can be dealing with such an awful condition! I wish you the best of luck with your nerve block tomorrow and please keep us updated when you are able to!!

Hi Cheryl, welcome. I got causalgia, CRPS II or whatever you want to call it after shoulder arthroscopy in April. Same situation though, unrelenting 10+ pain that started the 2nd day post-op. I self-referred to a neuro, got EMG/NCV's which brachial plexus damage, then saw a a pain-doc who started me on stellate blocks the next day. All this happened at the 4-6 week mark. The stellate block certainly knocked the pain down a few notches but PT aggravates it so now I've had 5 blocks. Guess I'll continue as long as they still work. Can't quit the PT yet as it is still helping to retrieve lost shoulder function.

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!!