Well I usually post on the pn but they directed me here. I actually just got back from the day program at cleveland clinic pain clinic where the head doc speciality is RSD. Anyhow I have pn in both legs but my left inner ankle/foot/calf is the worst and up till last month kept me in bed for 4 months from the pain. It was a lot of testing and ruling out with the final dx pn. Anyhow all the current docs say I need to treat it like RSD though I don't have some of those symptoms. That is why they want aggressive rehab and why they want the epidural catheter for me so I can work through the pain. I have been doing more every day without even on some days a 15 minute walk but really pushing like errands. Anyhow anyone with RSD here and what you do to help? The doc said that he wants me to be able to run again which I will never do again but would love the option so why the rehab is important. He kept saying you need to exercise on it and it feels worse at the time but better in the long run. He said since I fear damage that its not just feeling it will. Thats huge the fear of making it worse cause it was so bad and still but don't want to go back down that hell again. Have people found they have made huge progress with more activity?I'm looking into a lower level pt program then was at CC to see if I can do it witout the catheter. Also I have the on and off dizzy and shot in the neck feeling. I get super shaky and no tests or meds seem to have the reason of why. It comes and goes like a few days I will have it then a week not and I even baught a carbon monoxide detector thinking that may be why. The alarm never rang though. I worry about having a seizure almost. Is this a symptom of rsd too or pn? All the docs just look at me like we don't know why and my sugar and bloodwork has been tested so many times. Of course at the program it never happened. Also my leg seems to get very painful in the cold more then when warm or even a breeze kills it. Just any ideas and I found a rsd support group so I'm hoping to join since similar right now to my pn. Thanks

i would question if you have the right doctor. it seems he wants you to will yourself well, but you can only do what you can. we are our best caregivers. so please do not think he knows more about your body than you do. do not overdo, but keep moving. that is waht i do. when it hurts, or you get dizzy, your body is telling you, you have done enough. also, you may be holding your breath a bit because you are scared and because you are on pain and that may be the cause of the dizziness.
take care of you, and tell your doctor you are doing your best, or better yet, get another doctor! joan

Thanks. I have voiced my concerns. I actually have seen 2 neuro's, rsd specialist at cc,the whole staff at the pain clinic there,gp,endocronolgist,foot/ankle doc,and the anasteseolgist who said the same. I still fear damage but am trying to follow the guidelines. The docs did say just increase every day and push as far as I can and then a little more so taht is what I'm doing. I really want to rehabilitate without the need for the epidural so just trying to do more but not to the point of the rehab where I couldn't take the pain and so far I am making progress through some bumps. I used to think the dizzy was sometime when my pain got so severe but now its not going with that and is more random.As for the docs though I really have started speaking up more. The pn forum helped me with that and at my last apt no one touched me I made sure. The last time the doc did and I said not to I was crying for days in pain. So your right you need to speak up. Thanks

Sorry I would not do what you are doing I have done things to try to push myself with PT and I feel it made me worse! It is your body and I will not tell what you can do or not but if you study RSD you will find out that sometimes you will do more damage than good.

I hope you well, I know my body and my docs and PT all say I could never do anything like that it would KILL ME to be blunt! I wish you well and hope you can talk to another doctor about this, at another teaching hospital docs do not know about RSD as VICC and others say I feel we are guinnie pigs er my sp! if you like what you are doing dont stop! but if you dont like it get another opinion!

Thank you. I guess a big fear of getting the tunneled epideral catheter well one being the side effects but also I have to push with extreme activity to make it stronger. I have been pushing so hard now without it but not like bike riding or pt exercise like that cause I fear that but doing a lot of daily errands or even a small walk. I'm in so much pain and I feel sometimes damage is being done. So if I get the catheter and its only for pain relief and they have me doing the bike so on and then after the 6 weeks with the catheter it makes it worse then what there is no accountability. Also there is nothing to take the pain away. The reason why I could not do the pain program at cc was cause it was all day walking around plus the pool,yoga and they wanted me to do the bike or eliptical but I drew the line. I have seen so many docs like I said and all say the same that I need to be on them and in the short run it hurts like hell but makes it better in the long run. The last ones were the ones at Cleveland clinic who do specialise in this issue. I keep going to more docs for more opinions for the same response. I still don't get how it makes it better and when I ask they say it makes it stronger and so it doesn't atrophe. That the pain is when its not used to being used. Does it just take so long to see improvement and why are there some days where its better then the next to be horrid pain?Thanks

The one Physical Therapist that I didn't stay with at the first of my therapy wanted me to do therabands and the bike. I couldn't do either. I switched and got some Therapist that didn't believe in that kind of strenious exercise for the RSD and TOS.

I haven't walked in awhile but at my other home I walked 3 to 5 miles a day for years out there. I love walking. I would walk and cry, walk and cry. My arms and hands though were the worst at the time. I would try to keep them in my pockets or inside of a jacket to keep them from swinging.

Since yours is in your foot and ankle, I would definatly take it easy and set your own pace.

When I moved over to my new place I overdid the moving and walking and am now having problems with my feet and haven't been able to walk for months.

You sound like a very enthusastic person that was very active and it will take you time to find your own pace but you will in time. Don't give up doing what you want to do though. Just take your time at it.

Ada

Daniella
My RSD started in both hands and spread to both feet back in Feb of this year. I walk everyday in hopes of keeping the swelling down and my mobility. My feet actually swell more when I sit but the pain of standing is bad too so a little of everything works for me
I take my pain meds, put my lidocaine patches on my feet and do multiple short walks. My PM doesn't push me he just said keep moving and I truly believe it helps. Mentally and physically. My pain meds mess with my brain and balance so I always take a walking buddy, it makes me feel safer.
Trust your gut and listen to your body
Jeanne

I have my thoughts of this I was thinking and boom it hit me why I had second thoughts of RSD.ORG and why I like RSD HOPE it was the doctors who are invloved with the site and the INC. company aspect I do not like since I am fighting for care in WC! it hit me why else would a doctor from that site also in Clevland push for such harsh treatment to people with RSD! remember the old saying NO PAIN NO GAIN is not for RSD!
So this doc who is one of the board members for RSD ORG is working for IC interest sounds like what IC try everyday to people with RSD in WC RRRRR

Thank you and I'm sorry for all your suffering. I'm freaking out cause my major issue is in my left but the past 2 days and a few months ago for a short period my right got the same pain and in similar issues. My neuro said that pn is usally in both but one a lesser degree. That is my actually dx is pn but everyone wants to treat it like rsd. I feel so confused and I feel I damaged my right protecting my left.I am going to look into another program but at a lower level. I have been non stop doing errands for a week and the pain just got unbareable last night and tonight where I was crying again. Now I have both legs in pain and fear not being able to walk. The right I was so thankful wasn't affected cause of driving etc. Now it is and I'm lost. This did happen a few months ago too and I told my fears and they said it just feels that way but there is no damage. Flippnout I'm sorry I'm confused by your post. Do you mean that at the cleveland clinic they push to much? I felt like while I was there I was doing more then the normal. I was on my feet the whole day plus all the activities. They did say when I was leaving they wanted to see how hard I could push. My pain though is also the after math and lasts for like a week.
I know with rsd they say aggressive treatment is needed so I don't understand what that means? I'm going to go to another doc to see of alternatives to the catheter or maybe try more shots or a different type since the meds are doing nothing like cymbalta so on. Thanks so much

Oops sorry nikonkid I have those licodine patches and have used them a few times but did nothing and I almost thought it made my ankle swell. I was thinking of trying them again. Have you seen relief often? Or is it hit or miss?