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RSD Questions

baseball2005bbaseball2005 Posts: 77
edited 06/11/2012 - 8:30 AM in Chronic Pain

I was just diagnosised with RSD 4/8/09 in my left foot. The pain doc is ordering a caudal inj., sympathetic nerve block, and is going to use a catheter to break up scar tissue in my back that is wrapped around a nerve. I have done some research and have learned that RSD can go to my other limbs. I have also learned that lidoderm patches help(is this true)? I have also learned that acupuncture helps RSD(is this true to)? Any experience that anyone has with RSD is greatly appreciated or any information that anyone has. My foot is in terrible pain. Thanks.


We have been made right with God because of our faith. Now we have peace with him because of our Lord Jesus Christ. Through faith in Jesus we have received God's grace. In that grace we stand. We are all full of joy because we expect to share in God's glory. And that's not all. We are full of joy even when we suffer. We know that our suffering gives us strength to go on. The strength to go on produces character. Character produces hope. And hope will never let us down. God has poured his love into our hearts. He did it through the Holy Spirit, whom he has given us strength to go on. The strength to go on produces character. Character produces hope. And hope will never let us down. God has poured his love into our hearts. He did it through the Holy Spirit, whom he has given us.


  • Kate,

    What kind of pain are you having? What kind of test did they do to confirm the RSD? I have had RSD in my right foot twice and over came it both times. I went through the sympathetic block to nerve in back as well as extensive therapy and of course anti-inflamatory meds. If it is RSD the most important thing is to get the joint moving. The longer the joint doesn't move the worse it gets. How did you get this you have a injury to the foot? Are you currently in therapy and if not they need to get you there asap. RSD has some serious concerns and many surgeons won't touch someone who has had this. The fear of the return is so high once you get past it. For myself everyday i start the day with the exercises so as not to let it ever get out of control. I also have my safe box i call it to stretch that foot. I used one in therapy and had a family member make one for me as well. If there is anything i can explain to you about it don't hesitate to pm me.
  • Hi Tamtam,

    thanks for responding to my post. These are the symptoms I am having right now for my left foot. I have sensitivity on my foot( I cannot have anything touch my foot it causes so much more pain), I have burning pain,severe pain constantly in my foot, my skin on my foot looks funny, my nails grow too fast, I have no reflexes in my foot, I have stiffness in my foot, as for temperature changes(my left foot feels no temperature changes)the rest of my body will be cold but there is no temperature change in my foot heat or cold don't affect my foot it stays at the same temperature. My pain doc to treat this is ordering a sympathetic nerve block, caudal injection, and he is planning on putting a catheter up my back to break the scar tissue up.

  • RSD is tricky to diagnose. My doctor told me that really the only way to know for sure if it is RSD is to do an injection and if the injection helps, that means it was RSD. Isn't it crazy how medicine is just a game of practicing until you get it right?

    I hope you get some relieF. I agree with tam that you need to keep it moving, because if indeed you have rsd, the weakness will continue worsening. My issue is with my left arm, some docs say it is rsd, I'm not so sure, and since they can't get to the ganglion nerve to do the injection because of my hardware, there is really no way of knowing for sure. but I do know that when I go a few days without doing the exercises on my arm, it gets worse and I can't raise it up. RSD is brutal, and as the condition worsens, apparently teh pain becomes unbearable. Thankfully I'm not to that point. I hope that you get yours under control before you get to that point.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Could I ask how do doctors know if scar tissue is playing into the factor of someones problem!? do they see it in scans, xrays!?? how do the know!!!
  • I have RSD. I was involved in a hit and run accident 6 yrs ago and to make a long story short I had every tendon torn in my foot, my Achiles tendon contracted and had to be lengthened in left leg and that's when I developed RSD. I sympathize with everyone who has this horrible disease it is the most painful thing I have ever experienced. I am a nurse and I can no longer do a career I worked so hard at. The RSD is spreading. It was in my foot and now is going up my left leg and into my lower back. Let me tell you I would rather any day just have in my foot. I have had Sympathetic Nerve Blocks for years every 6mths (basically 6-7xs a yr) these are no longer working. Last June I had a Spinal Cord Stimulator implanted it has helped some. This winter has thrown me into a serious exacerbation due to the weather turning cold and then warm. My left foot temp is 15 degrees colder than the right foot and burns something horrible, the sensitivity to touch is insane and forget about going upstairs to sleep. My life has changed dramatically within just 6 yrs time.

    I understand fully what you are going through. If you have any questions feel free to respond. I can only give advice, obviously, on my experience but I am willing to share what I am going through and offer encouragement and prayers.

    My RSD is so severe I am going to be going through a trial for a pain pump and if it relieves the pain I will have a permanent one implanted within the year. Mine has gotten so severe I am facing disability at 45 yrs old and it is devastating.

  • wow after reading your posting, we are so similar, i have rsd in my right foot, it started in the foot has spread up to the right knee, and when it is really bad goes all the way up the right leg and into the left knee, its horrible.... i feel also it is worse in the winter here in ny, or if it is really damp outside... i hate these days with a passion, there is nothing i can do between socks and my brace and my stim.... i get nerve blocks every two months, and have since my surgery two years ago... i also am on 100 of fentynal every two days.... RSD is the worst, im not sure which is worse the fact i have two levels in my back that didnt fuse from my back surgery and that pain, or the RSD pain!!! im a sitting knowing the doctors want to go back in and do a plif, but i also know the rsd will not change or get worse if i do it, and then there is no guarantee the back surgery will make anything better!!!!!!

    we could wish they could do more for people with rsd, i had my spinal stim put in about 9 months after my back surgery - that was after they tried many different meds, physical therapy and injections... nothing helped. i could watch my foot change from blistering red, to almost a blue color and then the fact it was so swollen...... now i feel it all inside, when its at its worse i feel like i have a rod of ice in the center of my leg, and if i could just reach in and pull that center rod out of my leg my rsd would go away., but its in the inner core of my leg, the place, no socks, no heating no nothing can help.... it feels so good when the sun comes out ( i live in new york - so we dont get many months of it) but i just lay my leg on a foot stool and feel like i left it melt in the hot sun... it feels so good......... rsd scares me..... i am here to chat if anyone needs to !!!!
  • john, just wanted to leg you know i am 47 , so i feel your pain!!!! we are going thru very similar things!!!
  • When I had my SCS implanted I also had a Laminectomy at L8-L10 I was told this was going to take care of 80% of the pain. Indeed it did for about 3mths and then of course the winter months hit. I live in Ohio so you can only imagine the weather we experienced. Its is so nice chatting with others with the same disorder because i did not realize how serious this was and I was told this was very rare. Yah, right it is every where I look on the internet. All I know is the pain is near maddening at times. I have HTN also and all my meds were doubled due to the severe pain I am in. The unfortunate thing for me is I found out very quickly how many pain meds I have an allergy too. I am so limited to what I can take. I am on Lyrica, Zanaflex, Norco, Opana ER. I have just recently started the Opana so I am praying it relieves some of this pain.. I am now just waiting on insurance approval for the trial pain pump. I am so scared they will not approve considering I already have a 75,000 SCS implant and I can only imagine how much the pain pump is. I thank God every day I am alive and I don't have Cancer and suffering as bad as others. I try and stay positive and keep as mobile as I can but I am now using a cane and it makes me want to cry thinking I used to work 12-14hr days just 2-3yrs ago.

    I am sorry by the way my name is Barb. My husband is the user ID on the computer and I did not realize..so I apologize thinking you all were talking to John. Thank you so much for listening and being supportive.
  • have you tried fentynal patches, they started me on 12.5 i am on 100 now, but it does help... may be another option, i started them with one every three days, but im on them ever two days now!!!! am here anytime you want to talk, i know how scarey this disease is, and i felt i was doing alone also, till i found this site....... its been so helpful!!!!!
  • Here again I found I was allergic to that also. I broke out into hives head to toe and oh my goodness..funny but not funny I saw huge spiders on the wall and started screaming so needless to say I cant use those either. I am allergic to percocet and morphine...I have had diluadid injections after Sympathetic Nerve blocks and have never had a reaction so my PM DR is hoping with the pain pump he can utilize that med for me. He has never tried any other narcotics maybe because of issues I encounter, not sure. The Opana is helping some and my PCP may put me on Cymbalta which helps with pain receptors. I just don't like being on all this medication at such a young age at all. I'm not one to go in and say can I try this and this I surely don't want him thinking I am seeking drugs because if anything I would rather not be on them. But I tell you this pain is excruciating I guess I don't have to tell you.

    I was talking to my PCP on Thurs and he to tried to tell me this is so rare and I told him you should go and see how many sit in the PM office and see how people have this disease, it is amazing. My MD is one of the top pain specialist in the state of Ohio and I am so fortunate to have gotten into him. So I know I am in good hands.
  • Can anyone give me an estimate on recovery time from the permanent intrathecal pain pump. I will be having a trial one first. When I had my SCS it was a brutal recovery. It was near 10 weeks before I felt 1/2 human. My PM DR told me I would have to have home health take come in the home for a short while. Has anyone had one of these implanted along with the SCS less than a 1yr apart?

    Thanks in advance!
  • I have rsd and may get a spinal pump will this affect My rsd I have already
  • How long did it take for skin changes such as shiney skin or swelling etc after your first injury? Was it immediate, or later and did it come and go with any treatments?
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