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Diagonsed with RSD Can anyone help?

ceecee41cceecee41 Posts: 114
edited 06/11/2012 - 8:42 AM in Back Surgery and Neck Surgery
Yesterday I went to see my Dr about my constant pain in my leg and back and he told me that physical therapy will help but also said if the therapy doesn't work that he thinks I might have SI Joint pain. But today I got a second opinion from a spine specialist who just diagnosed me with RSD and wanted to admit me to the hospital due to my pain. I will have to get a bone scan done and he wants to treat me with sympathetic nerve blocks and also ordered a second MRI I don't know what to do .But I feel like the dr with the second opinion is right because all the symptoms I have are that of the RSD but I also have the pelvic pain which could be the SI JOINT CAN anyone give me more information about RSD AND SI JOINT PAIN OR PLEASE SHARE YOUR STORIES.


  • Hi,
    I wish I knew more about RSD to help with your questions. I've read a bit about it and there can be joint pain associated with this disorder but what I wonder is how the spine specialist (was it an Ortho?) arrived at his diagnosis? Was it solely based on symptoms? Looking at your ticker, you are not even 2 months out from your fusion. This is very early in the recovery/healing process. I know that I had an incredible amount of inflammation still at this stage which contributed greatly to my nerve pain. I hate to suggest it but since you have two different opinions would you consider getting one more? Have you talked to your primary care doc about the possibility of getting lab work done for any Rheumatological or other Autoimmune disorders? Just throwing some ideas out there - which are the same suggestions my NS gave me. I know how you feel, I am basically in the same boat. My legs feel like they have been rolled in crushed glass. My latest MRI revealed that there is foraminal narrowing at L5/S1 which was fused last year. I have no idea how much this is contributing to my current nerve pain but something tells me it is only part of the problem. Has any of your doctors suggested that the nerve pain could be from scar tissue?

    I hope others who have been diagnosed with RSD will respond with better information. Sorry, I am not much help. I just wanted to say that perhaps there is something else that is causing the nerve pain besides RSD it does sound like it is a difficult disorder to diagnose.

    Hang in there and keep searching for an answer.
  • Hi Ceecee,

    I have RSD but mine is under control. I have gone through all the treatments and what not. There are some distinct characteristics of RSD, and my only fear is that someone grouped you into this category without finding the real source of the pain. I had the 3D bone scan to confirm it. I ended up getting RSD from a foot surgery, not the actually surgery but when they pulled the pins in my foot. At first they thought I was allergic to the internal sutures and that was causing it, but soon enough it was obvious. The bone scan should confirm it for them. I did the whole gammit of sympathetic blocks in my back along with some very excruciating physical therapy and lots of meds. By the time mine was diagnosed I had lost the use of my lower right leg and it was moving up the leg. But I am here to say my leg works just fine today, well other than what my spine issues do to it. Don't get me wrong it is there and always in the back ground, without a doubt.

    One of the most important aspects of RSD is they have to get the joint moving. For myself I couldn't be touched at all. For example before mine was under control a shower would feel like nails being spit at me. Back then I couldn't even put a sock on let alone anything touch my foot or leg. When i say anything I mean sheets, air, water you name it. My therapy started with going from warm water to cool water. Then working in a pool with a therapist. We eventually worked up to the sensations where they would take different objects and touch me with it, while I basically bit a towel and screamed bloody murder. I still say it was harder on the therapist as they knew they had to hurt me to get past it. But the other choice was I would loose the use of that leg and mine was clearly traveling. I will never say it is easy to get past it and it is brutally painful, but then I didn't see another choice in it. The only reason we know I will always have it now, is once I beat the first round they had to go repair the bones it tore up and once again when the hardware was removed it came back. Initially they thought I was good to go till the hardware that was internal/external hardware had to come off. I once again started the same process and got back the use of it. The difference being the second go around it was caught rather quickly and the damaged I sustained isn't to bad, well not bad enough I will risk getting back.

    The best course of treatment I know is the bone scan to confirm it. Then a combination approach of therapy, injections and meds. Like I say while the therapy is brutal it has to be done, if not you risk loosing that joint and a lot more. There is 3 stages to the disease and i would think if you do have it they have caught it early enough to stop it. I have participated in several research studies and have been asked to talk to others about how it works and my experience with it. I will say to this day when I feel it coming or something isn't right I instantly start the target exercise i have for that area. I just figure now it is a part of life. Be careful what you read on the internet as there are people like me who got past it. When I got it my doctors cautioned against reading the internet on it, and I did as they asked. I am very thankful to this day for that advice. If there is anything I can help you with don't hesitate to pm me. Let me know what the bone scan shows.
  • Tamtam,
    Do you know what a bone scan reveals in someone with RSD? Do you take medication for RSD? Did you have numbness with the pain and what symptoms do you currently have? Was it a progressive pain or was it present immediately after surgery? In terms of diagnosis and treatment what type of specialist was the most helpful to work with? Sorry to ask so many questions but it is not common to find someone who has overcome this very painful disorder. I admire your courage and dedication and hope that you can keep the pain and dysfunction at bay.
  • I would think there is no reason why it has to be either or. I can't comment on the RSD but the situation tamtam describes are the symptoms I read about most often when people are diagnosed with RSD.

    The pelvic pain to me sounds more like an outcome of your recent surgery. A 360 surgery is really like going through two major surgeries, and, you are still VERY early in your recovery. First of all, when you have this much surgery, it takes the soft tissues and muscles quite a while to relearn their position and function in your new structure. I don't recall if you had any spondylolisthesis, but if so, it is even a bit more pressure on these tissues to get realigned, etc. I only had a one level PLIF and it took a good nine months to begin to get the various issues sorted out...and I am still working on resolving some of the issues.

    Pelvic pain can result from something as simple as the positioning of your body on the operating room table. I have been told the patient can end up in some awkward positions. Sometimes a nerve can get pinched, a blood vessel can be compromised, etc. Many of these things run through the pelvis, such as the femoral artery and the lateral femoral nerve, and can cause long-lasting problems. And, it's been my experience that the spine surgeons aren't that good at diagnosing this type of issue. They tend to discount that something like this can cause a great deal of pain.

    I guess my point is that you are still so early in your recovery that it will be difficult to pinpoint the source of your pain. I would not rule anything in or out at this time. It certainly sounds like you could have RSD, and you could have an additional problem as well. I would think a MRI will show if the SI joints are involved, unless it is a matter of movement within the joints. You might also want to read up on the psoas muscle. It is an incredibly important muscle that wraps from the spine around to the pelvic area, and when tight, can be responsible for any number of issues and problems.
  • It was a 3D bone scan, the placed the dye in and had me come back 3 hours later. I am not sure technical what it means but they showed me on the scan the parts of my bone that lite up(i want to say blue but not really sure of the color). The scans were done through the nuclear medicine department. I also have a plate in that ankle and the dye pooled on the up take(not really sure what that means), which is how they know it is still there. In that leg I have a peroneal nerve and a the tarsel nerve still trapped but they said the dye wouldn't do that because of those issues. My last scan was just a year ago. I don't really remember having numbness back then just pure blown pain and heat. The heat was intense like someone had a flame going near me. The pain itself started about a hour after they removed the hardware and it got worse over time as it moved and encompassed more of my leg and I lost more and more motion. Mine was very progressive. I might add the other part of that was I didn't want anyone near me for fear they would touch me. That does become a real fear. Within 6 weeks I was no longer weight bearing or moving from the knee down. My leg was swollen really bad and looked like I had first degree burns on it. You could feel the heat coming off of it. As far as my current symptoms, I sometimes can still feel the inside stitching on a sock, kind of like all of a sudden I notice it thing. You know when I am having a bout of it as you will see me take my shoe and sock off or will do something odd like that involves that foot. The worst is the sweating I still have. I have to always wear two socks for that reason. One to absorb the sweat and the other one to keep my foot warm. Because of the sweating it is a breeding ground for bacteria so I am very cautious about keeping my foot clean. I do have numbness but sense both of the above nerve groups serve the foot we are not sure if it is result of the RSD or the nerves. As far as who treated me initially they sent me to a physiatrist. She then sent me onto a anesthesiologist who has done a lot of research in the area. The injections would be to my sympathetic nerve(sympathetic blocks), I was fully conscious for them and they would wait till I could feel it get even hotter in my foot. When I say hotter I mean heat like someone just lite a match and held it up to you and you wanted to jerk away from it. For that reason they would strap me down to do the injections. I can honestly say it is the only time I have yelled at a doctor to stop it and he would say I know I hit it. Then they would send me straight from there to the physical therapist. As far as the meds one was for blood pressure that went directly on my foot along with a lidocaine patch. The heat my foot would put off would actually melt them and I would have to go have the burns lanced. I still have several little square scars from the burns. I could only keep a patch in a area for a few hours before it would begin to melt(adhesive). I also used bexta and I want to say percocet. But out of all of it the most important was to move the joints. When we first started I couldn't move them so they would have to do for me and just them touching me would put make me in tears. Part of the reason it was done in a pool and something about the pressure.

    As far as the prognoses I say I am cured but my doctors always remind me that it is there and to make sure I am aware. Of course my foot talks now and then and lower leg. There are a few words embedded in my head and they are heel toe, heel toe. So when i feel it I instant think that and start doing it. They need to do surgery on that foot and so far I am not willing to take the risk. There is one thing I always think is important to me developing RSD. I had a broken bone and it chipped off into a joint and caused some other issues. Anyway I was very busy at work and didn't want to take off work for the surgery. So I basically walked in a walking cam for 7 months till I was ready for the surgery. In my walking cam I could do anything, those work just like shoes for me and unless you looked you couldn't tell I had one on. Then of course the non movement following surgery I don't think helped at all. That is why I am such a proponent on getting the joint moving along with my doctors.

    As far as me answering questions in reference to it, I never mind. It is not a common diagnoses. I have ran across a few people who I suspect have it and are not being diagnosed. Some doctors still believe it is in your head and don't have faith it really exist. But then there are some doctors who throw it out there when they don't want to look for the real diagnoses and they don't really treat the patient aggressive if they really believed the diagnoses they gave. So anyone who gets that diagnoses I try to push them to push their doctors to treat it very aggressive. I have to say I was truly blessed from my foot surgeon to all the doctors and therapist who treated me.

    Ceecee one thing I was thinking has anyone checked your C-reactive protiens with your pain being so high? Or have they run any other blood work?
  • I'm sorry to hear about your RSD. I had both sides of the SI joint injections 2 weeks ago but I had an ESI and facet joint blocks at the same time and feeling less pain in that area. I hope you get some pain relief from the injections and soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • GWennie the reason I feel it is RSD i can't stand stuff to touch my leg I scream both my hands swell and my left leg swells and stays really inflammed the second dr I saw was a ortho dr and he took 3 hrs with my case did different test HE does want to do the bone scan but everyone's bone scans don't come back positive and they still have RSD my pain is so crippling I was almost admitted in to the hospital tonight,. The first dr wants to start me in physical therapy for 6 weeks and he said if it doesn't work he will look at my si joints both hands are swollen and I have severe bruising and swelling and can't have anything touch my leg. please keep me in your prayers.
  • All I want is pain relief this has been a difficult road for me and I get frustrated sometimes. I can bearly write my hands are so swollen.
  • No was has done blood work yet but he did a physical exam for 3 hrs and wants to get me a bone scan and another mri my hands are so swollen my left leg is very swollen and red and if somehting comes to close or touches it I scream so hard.
  • for the information pain is awful and I have arm pain and hand pain and swollen hands hard to write they are swollen so bad and my leg is inflammed I know the surgery was big and for me scary I just want the pain to stop but I know everything takes time.
  • I will let you know what the bone scan shows when i get it done.
  • I agree with you Ceecee...unfortunately, it does sound like RSD. I wonder why your hands are so swollen? I wonder if you might be having a systemic reaction to the hardware?

    I don't see how you could even do PT feeling the way you do.

    I hope you can get some answers soon.

    XX Gwennie
  • With RSD, especially in the first 1-3 months, there's significant swelling of the limbs. It can also be a part of the trigger that sets it off.

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