~Remission~
 

Back after long absence. I had to re-register to get back on.

I have been in remission for about six years, something I never had reason to believe was possible. Do not give up hope! It's your strongest ally through the hell you may be enduring.

My RSD resulted from a major stroke and involved my right side: hand, shoulder, leg, foot. Flaming, burning pain, swelling of extremities - red, hot, shiny, painful. Between the effects of the stroke and the RSD, my life was a terror. :mad:

Do not give in. I will be glad to answer your questions but answers will be based on my experience only.

I'm here now because I am afraid to submit to a toe amputation for fear the trauma will set off the RSD again, which for my foot, got set off from prior toe surgery two years after the stroke. All the joints were sawed off and steel pins inserted for 11 weeks. The subsequent pain was beyond excruciating for many years.

I have continuous pain from spinal stenosis, badly torn rotator cuff, surgically messed up foot, arthritis, but not the RSD pain. After a short stint of fenatanyl?, doc just switched me to Butrans patch. Much much better! Though I don't know if it's useful for RSd pain. I feel much better this week.

My foot needs surgery, really more extreme than the toe getting lopped off, but I have not proceeded. Least that can be done is the 2nd toe comes off or at the minimum, the broken end comes off. I can't get any assurance that the RSD would not flare up again, so I just go day to day, having difficulty wearing shoes, standing or walking.

So, any questions or comments?

Attachment 7972 Belted Kingfisher - male

Welcome back :)

I merged your previous account *Sage* into this new one so all your posts are together now

Welcome! I have a few questions (since you made the mistake of asking :-)
How are the stroke and the CRPS related? What happened to the toe? I'm so happy for you that you achieved a remission!!

Hi and welcome back! :)

Wow that's amazing that you've had remission for six years. I understand your fear of further surgery though, I'd be freaked out as well...:rolleyes:

What kind of doctors have you got behind you, and do they 'get' you situation? Is there any chance of them meeting up and discussing a plan for your surgery? I've read research that believes that if the pain in the affected area is really controlled before surgery, and then after surgery (using a continuous epidural if necessary) then the risk of further CRPS pain and spread is greatly reduced. Something to do with the pain signals being turned off in the brain, in that area where the CRPS is actively overdoing your body's response to injury. That means that your pain centres kind of snooze through it, rather than being on high alert and ready to overreact. If you know what I mean lol.

You can also take Vitamin C 500mg daily before and after surgery to help reduce the risk of spread, pretty low-key, but it has been proven to help, and doesn't do any harm.

Take care of yourself, and I hope you have a good day today.

Bram.

Yes Vitamin C. I've been taking it since I found out my newest little goobernwas breech and I had to have a C Section. I take 6000mg a day. Take it for 2 wks before surgery, and 45 days after. Also have them do a very dense block when they do the surgery. It's supposed to help keep spreading and reactivation at bay. I wish you all the luck and will pray for you.

Interesting, RSD from stroke.... Did anyone ever mention Central Pain Syndrome to you? It is also rare, but I believe stroke is the most common cause. However, I don't think CPS causes the hair and nail changes that RSD does. If you have CPS and not RSD, that might make a difference as far as spreading and your toe. You might do a little reading about it, see if it fits better than RSD.
http://www.ninds.nih.gov/disorders/c...ntral_pain.htm

CPS can also be caused by RSD, which is what my neuro thinks may have happened with me, and why I know a little about it. Me? I think the RSD just moved into my spine, as it has spread over time.

Sorry you are having to deal with this!

omg! when I tried to post the detailed response I wrote to you, the forum had kicked me off. Chemar tried to help but eventually I gave up and went to bed. It was saved on the clipboard of this new Macbook but disappeared after I had to copy something from a NeuroTalk email a few minutes ago. I am trying to make a transition from pc to Mac. :o

So briefly, [QUOTE]RSD PUZZLE #55
STROKE AND RSD

Stroke can be the cause of pain in approximately 5-7% of RSD patients. It can be self-limiting as in most cases of central pain, or it can be persistent. Stroke (similar to heart attack) can be the cause of frozen shoulder and shoulder-hand syndrome, which leads to RSD.
/QUOTE] Just had to remove link to Hooshmand's page.

toes were so contracted that two years later, all the joints were sawn off and steel pins inserted for 11 weeks. That set off RSD terribly in the foot. The second toe end broke off when I dropped a litter pan on it and over the years, it has bent and turned upside down. Of course I cannot wiggle the toes free after I put them in a shoe so my foot is in continual pain from that and issues from the other toes as well.

I'm going to post this now before something happens again! ;)

Bram, docs? :rolleyes: There are no experts in RSD here, even though this is a med school town. The usual array of other docs of course in my advanced age group.

I had not gone to my PM doc for years now, and just returned mainly because of the need for toe surgery. And because of painful living, though I do not consider it to be RSD pain. I told her I don't see the point in living when I wake up in such pain every day from various things even if it's not RSD, I am so afraid to risk setting that off again, you know? :confused:

Allanira, you had a baby while struggling with active RSD? :eek: I cannot imagine! Did the Vit C and everything else you did work for you?

daylilyfan, I'll look into that. Thank you. Since I was in remission I was not keeping up with the research. I felt I needed to keep the whole subject in a little box in the back of my brain. ;)

Thanks for this Daylily! Interesting. So, my spine surgeon never really came out and told me what happened :confused:. I figured out for myself that I had CRPS based on tons of internet search. However, after reading about the Central Pain Syndrome I wonder if that applies to me? I had an Artificial Disc in my spine that broke, and the metal was migrating towards my spinal cord. It was an extremely difficult surgery to get the broken device out of my spine, and I woke up with the CRPS monster in my bed (HaHa). I have "painful numbness" in my right foot and ankle along with the temperature changes, skin color changes, burning sensation, sharp stabbing zingers & muscle atrophy. I haven't heard anyone else here say they have the painful numbness as part of their CRPS. Now I see it in the description of CPS, so I feel more confused :confused:

I have painful numbness. The largest area of numbness goes from right side of my calf to my toes. The right half of my foot. And also where the sciatica runs down the back of the thigh of that same leg is also numb. Some of the worst pain and spasms I endure is in that leg. I woke up from surgery with this numbness that has gotten better but has never resolved to normal again. Upon waking from surgery I also felt as though my ankle was shattered. Literally.

So, I'll co-sign the painful numbness part. :hug: Along with all those other things we deal with.

Vrae, that's why I'm so nervous about even a small surgery as in lopping off the end of a toe. From everything I've read, ANY trauma can set off RSD. And no surgeons we're likely to get know much about it, not enough to make me comfortable anyway. A stroke IS brain trauma and discectomies are definitely trauma.

The lightning bolts of pain that enter my toes can cause my leg to fly up in the air. Peripheral Neuropathy. That happens much less now but is still often the result of removing a shoe and my foot is screaming, even without the lightning bolts.

Can you describe a bit more about painful numbness? I'm wondering if my foot qualifies... :confused:

I can tick that box too...sometimes it's almost as though that part of me just isn't there...very unnerving. Particularly when two minutes later it can be hurting like hell for no apparent reason.

I suppose the numbness part doesn't get mentioned as much because compared to the other symptoms it's a frickin walk in the park :rolleyes:

Take care all, and sleep well if you can.

Bram.

The way I have described it to ohers is this - imagine your leg submerged in ice water for 30 minutes........that is painfully numb!, :eek:

Mine worsens with weight bearing, improves with elevating the leg, but is constanly there.

Vrae - our stories are remarkably similar. So interesting.

I used exactly that phrase describing it to my husband yesterday! It's horrible. Hope yours is easier today.

Bram.

Hi Sage and welcome back. I'm sorry you're having such tough time and hope and pray that you will feel better soon whatever you decide to do with your toe.

As I remember, my hand still felt like it was burning while submerged in ice water. :(

RSD RENEE, I think I've already read enough of the experiences of others to not chance the amputation. :( Risking the RSD is why I have been putting it off all these years.

My foot and ankle are such a mess, one recommended MD who specializes in foot/ankle stuff, said he'd have to break all the bones in my foot and ankle and rebuild me a good foot. That was 5-6 yrs ago.

He did get me out of the AFO with about 6 months of 3x/wk PT, so that was good. :)

Thanks for the feedback, everyone! I didn't know that others felt the painfully numb, icy sensation too because I read so much about the burning. I had a lot more of the burning back in the beginning, when I woke each morning my leg looked & felt sunburned. I still get the burning but not as intense. I also get some odd sensations like my leg / foot will feel wet when it is dry - I go through a ridiculous number of socks each day because they feel cold & wet to my foot LOL :-)

LOL. Thought this one was just me Lottie!!!

I actually carry around another pair of socks with me because mine will just feel like I've soaked them in ice cold water, wrung them out and put them on. Yeuch. I feel like I've been walking round in wet shoes, outside, on a cold day.

Bram.

I see many people suggesting you take Vit C before and after surgery. Everyone becareful taking Vit C. I am not able to take Vit C pills due to the fact they case me to get kidney stones