Well said Mark,
Once we realize it is what it is and understand such things as wheelchairs or any sort of assistance is in fact just that. A means of helping and not an alert of our inabilities.
I had to overcome the same thing. My balance is bad and so I'm in a wheelchair most of the time and yes it was depressing but it keeps me from falling. Mobility, how ever it's gotten, is a good thing...

Hi, my name is Alisa and I'm new to the forum, although I've been a lurker for awhile now.

I first developed RSD in my left knee in April 2009 when I slipped and fell on my knee on a hard ceramic floor. After several months of having the pain get worse instead of better, I finally saw a doctor. Thus began the long process of seeing an orthopedic surgeon, who eventually performed arthroscopic surgery on my knee in October 2009, still not knowing what was wrong. Shortly after this surgery, the pain began to spread to my right knee. The pain just kept only getting worse in both knees as I went to several different doctors, only to hear them all end up telling me that they didn't know what was wrong with me and couldn't do anything more. It was really discouraging and a took a break from doctors for awhile but I eventually saw a pain management doctor who at my first appointment with her, was able to give me the diagnosis of RSD. It was such a relief to have a name to put with the pain that had taken over my life and I couldn't believe that there was finally something that fit all of my symptoms perfectly.

I had 2 series of 3 sympathetic nerve blocks each with her (all but one with ketamine as well), and while she was very nice, things were moving way too slowly so I started going to a university hospital and seeing a doctor in the pain center there. I first tried 5 bier blocks, but there was only temporary relief as was the results of the nerve blocks too. The next step was to do a 5 day inpatient epidural. That went well, so we decided to do a tunneled epidural catheter for 6 weeks, which brings me to where I am now. I am a little over 4 weeks into this epidural being in. While it has provided me with some pain relief for which I am very grateful, I still have burning most every night and sometimes throughout the day, I still have all of the sensitivity, and I sometimes still have swelling and inflammation and redness when I've been on my feet a good amount that day. Obviously I do a lot more in the real life than I did in the hospital. Like I said, though, I am grateful for the relief it has given me. When this comes out, if the pain comes back full force, the next step is the SCS.

I've tried lots of different meds, the only one that has done anything for me at all is nucynta. I have a TENS unit which can really provide some nice temporary relief sometimes. And I've done a ton of physical therapy which in the last several months has been a real help and it's the only thing that's ever provided me any lasting relief. I did a total of 19 weeks of PT before the diagnosis and then May of this year was the first time I went back since finding out I have RSD and everything fell into place. I have the best therapist and before my hospital stay she had me running for 2 minute periods. It was an amazing step at feeling more normal again, and I can't believe how my pain is less when I leave there then when I come in!

But still, I'm only 21 and I just feel like I can't accept living with the pain until I've tried everything I can. It's taken away so much of my life since it started over 2 years ago. I'm a full time college student and a part time nanny and sometimes it's all way too much for me to handle. I decided to finally register and I look forward to talking with you all!

Welcome to NeuroTalk! I am glad to learn you have received some relief through your hospital visits with the catheter treatment and also in the meantime with your TENS unit. If that is helping your RSD, then approaching a Trial for SCS implant if it has been recommended as a possible course of action for treatment AND you are in the US where the Trial lasts up to a week or more, you can truly give a good try to the unit while temporarily emplaced.

Many, many folks will reach out and offer help, information, and support while you are among us. Just ask away!

Caring,
Mark56

Mark56, thank you for the welcome! Although I'm trying to stay positive, realistically I fear that my pain will go back to baseline after the catheter comes out, so I have been doing research on the SCS implant and I think the trial is definitely something that I want to pursue as scared as I might be about all of it. If it can be the answer to bringing my pain level down for a long time or even getting rid of the pain, there's no way I'm not going to give it a try!

Research all you can regarding the efficacy of SCS as it may relate to RSD. I had talked it over with my Sis, Terri, but, then she is way to far down the road timewise and has lost so much weight, the doc would not recommend it for her. If you are earlier on in your RSD dx, then you may still have a good deal of muscle mass, and the rest of that stuff some of us would like to lose which makes up the body. There is NO REASON not to consider possibilities.

Since I am an SCS permanent implant patient, I have some experience with it, especially with the Trial, written about in early May 2010 on the following thread: http://neurotalk.psychcentral.com/thread117854.html

I have tried to chronologically give the process some points of reflection for others, so, there it is. If you have any questions in particular, fell welcome to run them out for us to ponder and respond. You are surely welcome to take a stroll over to the SCS subforum added here at the long suffering request of Rrae, our SCS leader of sorts. She is fun and full of information AND wit. The forum thread listings are found at: http://neurotalk.psychcentral.com/forum118.html

Many warm hearted friendly folks are found there willing to share of themselves with you as you wish.

Hope to see you there,
Mark56

Hi my name is Samantha and I am 23 and a Fine Arts Studente.

I live in Dieppe New-Brunswick and I have had RSD sens my accident on the 30th of September 2010. and I have completed 3/4 of my Fine Arts Bac. During my last year of my Bac I was having troubles getting my student loan an was forced to leave university to work for a semester and it just so happens that I got injured at work and developped my rsd in result of the accident.

I love art , Painting lage paintings (5x8 feet) and ceramic suclptures. I love playine with Texture in clay paint and drawing. I was very talented and my University teachers had hight hopes for me. I find it very hard thinking about what I love to do because I wont be able to do it again. I hope that some day ill have a chance to find my art again in another form.

Almost a year later and my leg is unusable because my spasems twisted in into a hook and im starting to loose function because the spasmes moved un my spin into my shoulder blade and my armes. I am in a whealchair & havent been able to straighten my leg of walk for over 4 months ( sens may 12th)

Of course i was early on cut off from worksafe & my doc from the pain clinic is furious because during the whole 10 weeks i spent at the rehab clinic in st john was a waste of presious time. They changed my diagnosis and gave me treatements not related to my rsd. During this time i could have had beter treatment at the pain clinic and my leg would never have gotten were it has.

In my opinion the centre(in place of wsnb) had noticed the signs of the advancement of my RSD it was planly ovious that all the times i had told them about the jumping in my foot, the ligament in my knee would jump out of track when i bent it(I know know that this is cause by to much tension in my ligaments), the seperation of my knee from swelling and all the different kind of nerve pain. The last exame i had my whole foot had been taken in a huge spasm.... the signs that the spasmes were increasing should have been clear to the staff if they actually knew what they were doing.

So know im waiting for 3 braces to help & prevent my limb of being pulled out of place. I need a brace to straigthen my leg, a brace for my knee to keep it in place and on for my hand to stop my thumb to spasme backward and keep the wrist in place.

I forgot to say that im allergic to anestetics and most treatments arent a option for me ... but we are trying the laser ... im also waiting to know when my apeal with wsnb is going to be.

Here is a basketfull of hope that your WSNB appeal will go to your benefit. I am in the US, and the corollary to your benefit system is referred to as Workmen's Compensation. I will say the system has been extremely beneficial to me in providing the medical care I required throughout and without the need for the appeal process you are enduring, so, from one sufferer to another, I well and truly hope your situation in that regard is resolved VERY soon!!

In the meantime, those medical issues regarding handling the RSD are complicated more especially given your body intolerance of some of the therapies commonly used to attempt arresting the pain RSD can and does cause. I will pray, if I may, that your situation is brought to the forefront of those who are your caregivers and to the effect that your treatment may be beneficial to you. There is a forum on NT regarding RSD specifically so you may tie in with them to compare notes, discuss therapies, grieve over the pain and gain their support. It is found here: http://neurotalk.psychcentral.com/forum21.html

May all ultimately be well with you, may all be well with you, and may all manner of things be well with you,
Prayin,
Mark56z

Hello everyone! I have been reading and posting on here for maybe a week or so and I figured maybe I should tell a little of my story. I had a lateral release with chondroplasty on both of my knees at the start of this year. After surgery #1, the toes on my right foot started to get meat locker cold and then set your oven to broil hot. Then the left foot did the same thing. Then all the other symptoms started to come along one after the other. Edema, red hot shiney skin, burning pain, and all the other fun things that come with it. Fast forward 7 to 8 months and I am seeing a neurologist and pain specialist. I did not get a diagnosis until about 6 months in or so. Anyway, I'm now just starting to get my head around this disease and what comes with it. You all have been so wonderful and helpful to me. Can't ever thank you enough. Really. Thank you, ALL of you for being so generous with your time and thoughts and prayers. Karen

Soak in epsoms salts, Lukewarm works both ways. It hurts like crazy but after an hour or so relief comes. Get ready for winter, it's hard. Before my accident I wore size 6 boots, now I have size 8 but they still cause major pain. Hard bottom slippers are my preference, which means I only go where it is cleared of water and snow in winter.

I have a soft piece of light weight fleece that I use to wrap them in at bedtime, but sometimes even that is too much to bear.

Glad you found this place, a gold mine of resources, support and friends. Thanks for adding me as one of yours. Forgive me if I miss seeing a post or message, I don't get the opportunity to check everyday.

Have a less pain weekend
GramE