Hi Kelly,

Thank you so much for your kind words, I really appreciate them! I'm glad that I could help you, even if it was just in a small way!! I really hope you get some much-needed answers real soon and I am thinking about you!!!

I was born with Hypermobility Syndrome (HMS) and believe I got it from my father has he has it pretty badly like me. I wasn't diagnosed with it though until we went to the hospital to see what was the matter and found out that I had RSD. I was always VERY clumsey as a young child and couldn't do some things like most of my friends but we never thought anything of it really and I guess all along, it was the Hypermobility Syndrome! 2 of my Pain Management Doctor told me that nearly everyone with RSD are Hypermobile to some varying degree and it is believed that that can be a trigger to most peoples RSD if they start from an injury as people that are Hypermobile have VERY flexible joints that can get into lots of strange positions! My RSD started from an ankle sprain and my ankle has been severely rotated to the side ever since so I DO believe that me being Hypermobile could have made it worse! I would speak to your Doctor and see what they say - it might just be that you are slightly Hypermobile and they can perform some simple tests on you such as bending your limbs to see how far they can go and they can run some blood-tests that can determine how badly affected you are!!

A lot of the people that I have spoken to with RSD are Hypermobile - in fact, I think nearly everyone that I have spoken to have ALL said that they have found out that they are Hypermobile to some varying degrees!!

I also developed the Dystonia from the RSD. The Dystonia started straight after my injury and it can be even more debillitating than the RSD at times as I can't move my foot at all to put it into any proper shoes or socks!!!! Most of my shoes have ended up seriously moulded to the shape of my foot because of the Dystonia and I have ruined LOTS of shoes!!!! My foot is rotated out to the side in eversion at a 45 degree angle and the PT's and my Doctors have tried everything to try and get it fixed from muscle relaxants to splints and nothing as worked unfortunately so far!!! I am due to go onto an Intense Physical Therapy Program in April and have been told that if things don't improve, I will HAVE to have my leg casted as a last resort ... that is something I definitely don't want to have done so I really hope and pray that things get better before then!!!

I developed the Myoclonic Spasms after I had an ingrown toenail removed and they are extremely painful and cause my legs to move up and down all the time without me being able to control them!!! The spasms have settled down a little but they are still no where near fully better!! My PM Doctor said that the Myoclonic Spasms are a severe complication of the RSD AND Dystonia and my Neurologist wants me to try Keppra if they don't get any better as I am loosing lots of muscle tone and my ankle gives out all the time!

I have always had Dyspraxia but never found it out until my Physical Therapists began to notice it during some of my PT sessions. They noticed that I couldn't co-ordinate my legs much at all and I often couldn't tell where my legs were and couldn't perform even simple tasks that they asked me to do! I am supposed to go and see someone soon to get an accurate diagnosis however my Doctor said he knows for certain that I have it! Dyspraxia works in a similar way to RSD and is caused by the brain sending wrong singles to your body so that you don't know what to do!!!!!

I'm not sure how long I have suffered from Arthritis however my PM Doctor thinks that it is caused by the RSD as I never really had any problems before I injured my ankle!

I really hope that you get some answers soon as I KNOW how hard it is to cope with all of this and how confusing it can be at times!!

The weather is a bit better here in the UK now but we are expecting more snow storms real soon - ugh!! My leg can definitely tell that the weather is cold as the pain as gone up a lot - I really hope things improve soon as I hate the winter!! On Monday, the weather was terrible and you couldn't do anything or step foot out of the house!! I fell going out to the taxi cab that takes me to school the other day and I hurt my leg a LOT - the pain has been so much worse ever since!!

Well I need to go as my arm is hurting a lot from typing. If you have any questions though, please let me know!!