Hi everyone since breaking the ankle and now out of plaster all hell has broken out i'm down to shuffle on both feet because of pain top of both legs down to top of foot all i want to do is rub them no sleep likewise i was diagnosed by a vascular spec and have been left on the heap and as what dr's i have had in the past and currently when i mention the word em they shake their heads at least my new dr is trying with a beta blocker which i feel has contributed to the pain. no one has tried me on gabetin. any answers for those in nz who suffer silently without support.does someone know of a medical person here in this lovely city of nz that might be able to help.
I’m really sorry that you’re not getting the support you need from medical staff in NZ… Can you take some information to them to read to give themselves more knowledge about EM…? I also suffered after a break in my foot about 4 years before symptoms of EM started. After a year of hideous pain (same pain as the original break) I was diagnosed with something called RSD which is a problem either the central nervous system… I wonder f there was some kind of link…?
Thanks for that i'm also thinking that i was misdiagnosed with fibro instead of em and fibro is a secondary, i'm having flash backs to the days when my late mum was like me and she got the run around back then 28yrs hence she passed away 26yrs ago so as i have seemed to inherit alot of other health issues then maybe this is the last one.yes i wonder if there is a link and will google it as like u when i broke my left ankle 9 yrs ago my em symptons flared to the top just like in doing the right ankle and i can tell with experience of pains what is em and what is break pain. i'm going to give them websites etc and will ask them to research before i come back also i might get them to refer me to a rhuem in another city for 2nd opinion. we r 2 day in the midst of election of goverment it has been good as i have been able to have 4 weeks employment much needed cash for xmas.
do you have similar in face and arms and legs i have noticed while i was living in another city called christchurch and was very much affected by the earthquakes the reason why we have moved to another city that what was mild em has become moderate to high now.
cheers jenny
guess what i googled rsd and was me to a t.... and today after going back re my ankle the spec also diagnosed it and it showed up on the xray. whew i'm so pleased and thank you again for being so helpful.
lauraflora1 said:
I'm really sorry that you're not getting the support you need from medical staff in NZ... Can you take some information to them to read to give themselves more knowledge about EM..? I also suffered after a break in my foot about 4 years before symptoms of EM started. After a year of hideous pain (same pain as the original break) I was diagnosed with something called RSD which is a problem either the central nervous system... I wonder f there was some kind of link..?
Wow, so glad to be a help gossie… Hopefully now they will give you intensive physio to start the healing process… I know it sounds really harsh but if you don’t work through the hideousness of the pain it won’t ever get better. My doctor told me its either use it or lose it… Hard to take but a kick up the bum. A friend of mine was disabled because of un diagnosed RSD which was left far too long… I really hope doctors are getting you right treatment…! Good luck.
Thanks for that support i'm not looking forward to intensity but i'm a person who must up and doing things my dad used to say there's the ants in the pants again always have been a mover and shaker.
lauraflora1 said:
Wow, so glad to be a help gossie... Hopefully now they will give you intensive physio to start the healing process... I know it sounds really harsh but if you don't work through the hideousness of the pain it won't ever get better. My doctor told me its either use it or lose it.. Hard to take but a kick up the bum. A friend of mine was disabled because of un diagnosed RSD which was left far too long... I really hope doctors are getting you right treatment..! Good luck.
Hi Last week my specialist re broken ankle xray it again and showed me the gray area on the bone siad it was softening and described it as rsd. Finally i have seen a dr who has listened to me in nz and we r going to try new meds she looked up a website in nz re em and in new year will sort me with tests for rsd and perpheral artery dieease.the beta blocker the other dr gave me made my feet unbearable to walk on.
lizzi said:
Laura,
Very interesting that you have RSD too. I've done a ton of research this year, and it amazes me how similar EM and RSD are in some ways. I actually had a dr take one look at my feet and say that I had RSD. I was sitting with my feet hanging down and they were cold and dusky red, but not painful at that moment. He had never heard of EM so he didn't understand any of the similarities. For awhile I considered the possibility that I did have RSD but finally determined that I don't. (My symptoms mainly come on during a heat-triggered EM attack. When my feet are in a "dependent" position, they turn red because of poor circulation caused by not only EM but also a nerve injury in my feet. I've also read it's common for people with EM to have extra cold feet in between flares.)
It seems to me that the commonality is a dysfunctional sympathetic nervous system (although they say that's not always the case with RSD, and it's not always the case with EM either). It makes sense to me that someone could end up with both horrible conditions.
Elisabeth
lauraflora1 said:I was diagnosed with something called RSD which is a problem either the central nervous system... I wonder f there was some kind of link..?
2moro i start taking gabpentin in small 100mg doses for a month then when i go back to in january we will see how it is going it takes 6 weeks to get into blood stream and some side effects. 2day i'm feeling very low within self as walking only very limited not good for this person especially as xmas just around the corner. but being able to talk to u and others even of the far side of the world gives me hope.
lauraflora1 said:
Wow, so glad to be a help gossie... Hopefully now they will give you intensive physio to start the healing process... I know it sounds really harsh but if you don't work through the hideousness of the pain it won't ever get better. My doctor told me its either use it or lose it.. Hard to take but a kick up the bum. A friend of mine was disabled because of un diagnosed RSD which was left far too long... I really hope doctors are getting you right treatment..! Good luck.
Hi gossie… I was browsing the net for information while lazing in bath with my feet hanging over the edge and found this article. I only read the first couple of paragraphs but thought that it was something I really needed to share with you regarding RSD. http://www.rsdhope.org/ice-and-crps.html
I hope you find this informative, I did all the wrong things through lack of info before my RSD was diagnosed many years ago… Fingers crossed you haven’t.
great info web site have saved it and will scan thru when have time i'm not a great ice person and don't emerge my feet in cold water to cool down as havoc occurrs, well this time in nz it will be xmas day and this week coming will be full on doing preparations if we don't get to chat again i wish u a very merry xmas and all the best for 2012. cheers jenny nz
lauraflora1 said:
Hi gossie.... I was browsing the net for information while lazing in bath with my feet hanging over the edge and found this article. I only read the first couple of paragraphs but thought that it was something I really needed to share with you regarding RSD. http://www.rsdhope.org/ice-and-crps.html
I hope you find this informative, I did all the wrong things through lack of info before my RSD was diagnosed many years ago... Fingers crossed you haven't.
I didn't have any problems until I broke a bone in my foot (1 of 3 over 2 year period) I was in sever pain for much longer than the usual with broken bones and my leg turned purple/grey. I was told to ice it to reduce pain and swelling. I wasn't diagnosed with RSD for a couple of months but by then I think the damage had already been done. A good friend of mine was left in a wheelchair after getting RSD after an accident. She didn't get proper medical diagnosis so had been left with permanant damage. I was much luckier than that becasue the RSD went into remission after just over a year. I don't feel very lucky to now have EM tho and wondering more and more if there is a link..?
I'm also getting ready for Christmas so a very busy time for me. I hope that everybody who celebrates manage to have a great time x
I was lucky that the spec re xrayed the ankle and bon es in area and it showed up the gray areas which intergate rsd. since they have taken me off the beta block and onto gabpentin i'm feeling less pain and things are getting better although my leg is still blowing up bright red in heated conditions.
lauraflora1 said:
I didn't have any problems until I broke a bone in my foot (1 of 3 over 2 year period) I was in sever pain for much longer than the usual with broken bones and my leg turned purple/grey. I was told to ice it to reduce pain and swelling. I wasn't diagnosed with RSD for a couple of months but by then I think the damage had already been done. A good friend of mine was left in a wheelchair after getting RSD after an accident. She didn't get proper medical diagnosis so had been left with permanant damage. I was much luckier than that becasue the RSD went into remission after just over a year. I don't feel very lucky to now have EM tho and wondering more and more if there is a link..?
I'm also getting ready for Christmas so a very busy time for me. I hope that everybody who celebrates manage to have a great time x
Hi I live in nz and have recently been diagnosed with em mine is secondary I think because I have also been diagnosed with essential thrombocythaemia. Your message 4 years old so hopefully things have gotten better for you.