Hypermobility and RSD
 

Hi everyone,

I just wondered how many of you with RSD are also RSD?

I was diagnosed with Hypermobility Syndrome around the same time as I was diagnosed with RSD and was told by my PTs that people with RSD are often Hypermobile as well. Apparently when you are Hypermobile, your joints bend more than in a 'normal' person, thus making you more likely to develop a Chronic Pain Condition such as RSD.

I was just pretty interested to see if anyone else was Hypermobile and whether there could be a link between Hypermobility Syndrome (HMS) and RSD.

Thanks!

Hi Ali,
 

I read up on Hypermobile and that is sure not me. I am 57 but as definatly sure I wasn't even as a child.

I am sure I had CFS and Fibro as a child and in school I couldn't do a lot of the sports and activities that other kids do. If I did it was a joke. I barely can move my joints in a normal way. Years ago a Dr. in NM told me that the tendons that go down the back of my legs were too short, that could explain why I had problems in sports but I'm definatly not able to bend like hypermoble people do.

I have seen people who can do some of the things that hypermoble people do though.

Interesting that they say most people with RSD have this. It will be interesting to see how many if any do.

Ada

Thanks for your input, Ada!

What you described about not being able to do sports sounds a lot like I was. I can't do sports now because of my RSD but when I was in school, I could never do anything in gym other than swimming.

I could never figure out how to do any of the sports and really hated having to do sports every week as I used to feel really stupid when I couldn't do any of the things that the other kids could!

I was diagnosed a few months ago with Dyspraxia which is a co-ordination problem and my PT's and doctor believe that that is probably the reason why I had so many problems in gym. No one ever picked up on it before I was diagnosed with RSD but I definitaley always had problems with it. In PT, I am always having to get the PTs to show me how to do anything as I can never figure out what I have to do which is really annoying!!!

Sorry you had to deal with that also as I know how stressful it is!

hi Dubious,
 

The symptoms sound like what I have but I sure don't meet the criteria.

Thanks for that. Very informative.

Ali, you sound just like me dear. You should have seen me trying to run the 60 yard dash as a child. I probably came in last walking and then the 500 yard dash, I can remember finishing that in practically a crawl. Funny what we can remember from our childhood.

I know nothing I had was delt with as a child. Back then people didn't go to Drs. much, they used home remedies. Dad did try me on one a day vitamins but I couldn't even take them, they made me sick.

As kids, I don't think we think anythings wrong either even though we know we aren't like other kids.

Ada

I voted no. :-) I am not nor have I ever been hypermobile. I think some people spout off with a line like "most people with rsd are/have/etc" when they know nothing of the kind.

Hugs,

Karen

I put that I don't know....

I know pre-RSD I could lay my hand down flat against my arm... no pain.

Now... I have trouble just grasping things...

:o
Abbie

hi Ali,
way back when I was told I had hypermobile syndrome. I used to be able to put my foot in back of my neck, and my thumbs in back of my hands. Like I said, back in the day.:winky:

With bi-lateral lower extremity CRPS-1, I can still "solve" an ancient Zen koan* and produce for anyone interested the sound of one hand clapping, by flapping my fingers of my right (dominant) hand against the palm, about 4 -5 times a second. One of my sons can do this too, in addition to dropping down effortlessly into a full lotus position, legs crossed, both soles up.

So, in keeping with the theme of a large scale study of saliva from 5,000+ CRPS patients that Childrens' Hospital LA is now wrapping up - supported in part with a grant from the RSDSA - an aspect of this may well be in the genes.

Mike

*Formally: a paradox that transcends the logical or conceptual, the solution of which requires a shift to another level of comprehension. The Shambala Dictionary of Buddhism and Zen (1991) pp. 117-118.

No this is not me. I am sorry though that you face this. I read that article but was wondering Ali does that not make you or others have to do even PT in a different fashion? As a kid/teen I was very active. I would get injuries to heal but when this happened well 2.5 years later still high pain.

Thank you all for your input. It's interesting that most of you aren't Hypermobile as I know on most other forums, everyone has been hypermobile lol - guess everyone is different though!!!

I'm not sure if people that are Hypermobile have to have different exerices in PT Daniella, i've never really thought about it - thanks for bringing it up!! I know my PT's have always said that they have to be more careful with what they do seeing as though I am Hypermobile and I was told by the PT's at Great Ormond Street Hospital in London that even if my RSD ever goes into remission, I will probably always have to have PT due to being Hypermobile as my joints are pretty weak.

Thanks again everyone. It's nice to see if others have the same issues as me also !:hug:

Again I am clueless especially on the PT and activity with rsd in general but just a thought that came to mind. Also how you have stated other areas hurting too. I am always looking for a connection with myself of all my different pain and conditions. You may have mentioned this before but do you know anyone else that is young and with rsd or similar in you area. Just thought it may be nice to have that connection. We have support groups in our area though they rarely go and I have not been. I am mixed on my feelings I guess. I am so thankful for everyone here though.

Thanks again Daniella! I'm pretty clueless about PT also, I only know what my PTs have told me but even then don't agree or understand with some of the things they say. The PT doesn't seem to be helping me so we have basically told my PTs that if things don't start improving any time soon, we are going to leave the PT as it seems to be making me worse sometimes. I think we will see how the intense PT goes if/when they decide to do it and then if that doesn't help, we will leave it and just go to sessions every few months and i'll do my own exercises at home as it's really stressful having to go to sessions every week when I have school. My PTs want me to go more but it's impossible sometimes. I wish they'd start understanding that the PT flares me up sometimes but they don't and just want to continue on with it. I've been having PT for over 2 years now and it hasn't helped that much (other than the inpatient PT program when they got me walking short distances) so I don't really see the point in going if theres no improvements.

There doesn't seem to be hardly anyone in our area that has RSD. My PT's arranged for me to meet up with a girl who had RSD and it has now gone into remission but we couldn't meet up as her mum got took into hospital. We tried arranging to meet up again but my PTs couldn't get ahold of them. Me and my mum have set up a website for kids in pain to give support and i'm hoping that when the word goes round, we will get some kids joining from near us. I'd post the link but know you can't - if you have a look on my Facebook profile though, you will find the link if you want to check it out. It's really stressful sometimes not having any kids to meet up with with RSD in our area. I don't think they even offer any support groups round here for kids with RSD as there doesn't seem to be that many for some reason!!!

I'm thankful that I have all of you guys on here to talk to also. I honestly don't know what i'd do without you all. I have my mum but it's not the same as she doesn't understand fully what RSD is like so it's nice knowing I can come here and get some support!!

Thanks again for your input! I hope you're doing well!:hug:

Hi Ali
Im not flexible at all,, my hamstrings are tighter than guitar strings, but my neuro said he believes there is a coralation with people that have rsd, and being hyper,anxious, chatty,, kinda of like our nerves are already in over drive just waiting on a injury ot blow a gasget,,, it kinda makes sense,,,they keep telling me to calm down and that worring and being nervous will exasperate rsd,,, one of many reasons to have a seditive,,,,,,,,,,bobber

Ali I am sending thoughts to you always. Have you tried pool therapy? I am thinking of it again and wonder if that may be a good way to get you more mobile with less impact. I went on your blog and I saw the concert you went to. How fun. I am sorry though you are in so much pain. If you want there is a girl I know who runs a group obviously not where you live but anyhow she is I think 17 or 18 now but has had rsd for years. She is the one who used to be in a wheel chair but now is doing so much better walking and even went to prom. If you want I can set you guys up for email buddies or on facebook. I am always here too for you. Sending many thoughts

Thanks Daniella and Bobber, for your input.

Bobber - It's strange that your doctor said the chatty people seem to get RSD as I am nearly the opposite lol. I am chatty but only to the people I have known for a long time. I'm nervous and shy around people I don't really know whenever I see them in person. My dr told me that RSD seems to attack people like me that are shy and have a Type A personality. It's interesting how so many doctors have different theries on how RSD develops. I hope you're doing good!:hug:

Daniella - I tried pool therapy (hydrotherapy) before I was diagnosed with RSD and it didn't really help me. When I was diagnosed, my PT's said that it probably wouldn't help due to my additional problem of Dystonia as my muscles are tight all the time, even when I am in water. I do think that they mentioned they were thinking about trying it not so long ago when I have the intense PT to see if that makes a difference so will have to discuss it with them then. I have an appt with them on Wednesday so will hopefully have some answers then as this pain is really getting me down now. It would be great if you could get me in touch with the 17 year old girl that you know if you and her wouldn't mind - thanks so much!! I think it would really help me to see someone who has RSD but has managed to make progress, especially lately with me feeling down so i'd love to talk to her! Thanks again for your kind words, I really appreciate them and hope you're doing well!!:hug:

I don't like the whole grouping personality in conditions of any kind. The reason is for someone who does not fit the criteria it becomes confusing and often I think a different approach needs to be taken. I know I am not type A and even with my past anorexia I did not fit the typical. In therapy I was often confused and I felt professionals came in with a certain approach when it did not fit me.
Ali I am going to try to hook you up through facebook. I will tell you more through there too. Sending thoughts

i had it in my back for some time. we tried prolotherapy but it did not work. eventually i had a few spinal surgeries to fix the disc problem and the pain.

when i went in for a chiro adjustment on the low back it would last one second. the chiro would adjust me then said get up and as i pushed up we would both hear my back pop back out so he said lay back down and he would adjust again only when i pushed up off the table my back would pop out again. thats when he said you need some prolo work.

i dont have that problem now when i go for adjustments, but now the chiro mostly adjusts the mid back and neck.

My 16 year old daughter has RSD and Hypermobility as well, She knows of other young RSD friends that are hypermobile as well. You PT person should be able to help you with that. Good luck.





QUOTE=ali12;524889]Hi everyone,

I just wondered how many of you with RSD are also RSD?

I was diagnosed with Hypermobility Syndrome around the same time as I was diagnosed with RSD and was told by my PTs that people with RSD are often Hypermobile as well. Apparently when you are Hypermobile, your joints bend more than in a 'normal' person, thus making you more likely to develop a Chronic Pain Condition such as RSD.

I was just pretty interested to see if anyone else was Hypermobile and whether there could be a link between Hypermobility Syndrome (HMS) and RSD.

Thanks![/QUOTE]