KNEEtalk

The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: Amanda1975 on March 05, 2008, 09:43:34 PM

Title: Question for those of you with diagnosed hypermobility
Post by: Amanda1975 on March 05, 2008, 09:43:34 PM
I have been having problems with my knees since 2005 and now I am getting an awful lot of ankle pain.

My physio asked if I have hypermobility.  My question is, would I know that I had this, is it something that can go undiagnosed for a long time?

Thank you in advance.

Amanda
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Silkncardcrafts on March 06, 2008, 10:37:38 AM
Hi Amanda,

Your physio should know whether you are hypermobile or not. It is something that can go undiagnosed to someone that doesn't have a good understanding of this problem.

I think you need to find a new physio that understands this problem well.

It took me a while to find the right people to treat me. I have loose ligaments and am hypermobile. As a result I have had problems with both shoulders, knees and my left ankle. I also seem very prone to injuring myself if I'm not careful. I have found having a regular exercise program which includes a gym program, swimming and clinical pilates have been very beneficial and helps minimise my pain and instability issues with my joints.

I would strongly encourage you to find a good sports physician/doctor that can diagnose your problem correctly.
Where abouts are you based ? I know of a good sports medicine clinic in London.

Good luck !!!   :D
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Amanda1975 on March 06, 2008, 11:01:23 AM
The problem seems to be in my knees and ankles.  I am always going over on my ankles and have had some very bad falls in the past because of this.  I know that my daughter has issues with her elbows, very bendy and has had 'pulled elbow' 3 times, she is 7.  My physio told me I have flat feet, and I had surgery to correct a maltracking kneecap, which is very loose, I can almost dislocate it by pushing it with my fingertips.  I think these could be classed as symptoms.  I also fell badly and put my hands out to protect me, the Doctor at A&E said that having really bendy wrists might have saved me from fracturing them.

I have an appointment with my physio next week.  What type of questions do you think I should be asking to find out if it is hypermobility?

Amanda
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Silkncardcrafts on March 07, 2008, 08:27:26 AM
Hi Amanda,

These are signs of being hypermobile. It sounds like you have loose ligaments too. You shouldn't have to ask any questions, your physio should know. If I was you I'd be changing physios and finding a good sports physician/doctor. Where are you based ? If you get the wrong treatment physio can be a total waste of time. Does you surgeon have a good understanding of hypermobility and loose ligaments ?

Let us know what you think.   8)



Title: Re: Question for those of you with diagnosed hypermobility
Post by: Amanda1975 on March 07, 2008, 09:21:19 AM
I wouldn't know where to begin to change physio's.  I cannot afford to go private.  As for my OS I don't think he can be bothered, he always seems to be in a rush and can't wait to get me out of his office.

I never know what to say to either of them.  They ask what my pain has been like and I just feel like I am moaning all the time. :(

Amanda
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Silkncardcrafts on March 07, 2008, 10:46:55 AM
Hi Amanda,

I wouldn't worry about complaining to your physio and OS. They are there to help. It shouldn't be just about pain, it's also about instability.

There is a fantastic sports medicine clinic in London called Pure Sports Medicine. I was a patient there for a couple of years when I lived in London. Unfortunately I had to see my sports physician regularly and they reduced the consulting fee by about half. They are more interested in helping patients than charging a high fee. Definitely look into it. Their website is www.puresportsmed.com

I think you really need to get a private opinion regarding your knee. Pure Sports Medicine should be able to help.

It's hard when you don't have a medical background, but it's important to get the right treatment and advice. I've just learnt from experience and also starting work as a sports trainer.

What do you think ?   :)

Title: Re: Question for those of you with diagnosed hypermobility
Post by: Willow-Star79 on July 24, 2008, 12:36:43 PM
I changed hospitals because I wasn't happy with the service and support I was getting. I am doing much better now. As soon as I saw my consultant PT he diagnosed me straight away, and suddenly I could understand why I wasn't healing well and knew it wasn't just me. I have now receiveD my insoles and once all pain dies down I am hoping to see an improvement. I have been told that my hypermolbility won't effect me until I injure a joint. So I have a swollen left ankle that will never go back to normal, which gives me instability, affects my shin, then affects my knee which then has an effect on top of the joint problem, dislocation problem etc. And also suffered whiplash 10 years ago which has never healed and means I have flare ups all the times.

The one thing I have learned from this is that I will never be back to normal and have just to work out how to be 'comfortable' easier said than done.
Title: Re: Question for those of you with diagnosed hypermobility
Post by: rkd1987 on October 16, 2008, 05:55:02 AM
if you have BJHS (Benign Joint Hypermobility Syndrome) or anything like it i'd suggest seeing a Rheumatologist or an immunologist. there are medications that can help the pain and swelling with impressive effectiveness. I'm 20 years old, and i have BJHS. sometimes my hands get so bad that it hurts to move at all. and it's not arthritis at all. I'm prone to dislocations and i'm heading in on Nov. 20th for my third knee surgery. but some of the drugs that work on autoimmune conditions work very well on my joint pain.

check it out!
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Willow-Star79 on October 16, 2008, 12:44:59 PM
I have never heard of benign.....tell me more about yours.....sounds interesting.
Title: Re: Question for those of you with diagnosed hypermobility
Post by: rkd1987 on October 17, 2008, 05:09:04 AM
http://www.jaoa.org/cgi/content/full/106/9/531  (http://www.jaoa.org/cgi/content/full/106/9/531)

http://www.cchs.net/health/health-info/docs/1700/1722.asp?index=3971


Well, those are a couple links that explain it and how it's diagnosed...

As far as my story goes, i went to see a rheumatologist thinking i may have had some form of arthritis (which would have been a bit weird since i'm only 20). My symptoms are general joint pain - from my neck to my back to my hands, wrists, knees, and ankles - my joints were (and still are) just sore all the time. There were times that i'd wake up in the morning and hardly be able to move my fingers at all because they were so sore and stiff. 

After all the blood tests came back negative and getting a detailed medical history and description of my symptoms, my doctor concluded that i have Benign Joint Hypermobility Syndrome. Basically, my tendons and other soft connective tissues are any combination of too long, or too loose to hold everything in place as it should be. I can take my fingers and pull them away from my hands (like popping a knuckle), only i can pull them farther out to the point where it looks like my finger is separated totally from my hand under my skin. it's creepy..

Nabumetone worked really well for me as far as pain management goes.

as far as your question about having it and not knowing it... i could certainly see that as a possibility. I had it for about 8+ years before i was diagnosed.


Good luck to you!
Title: Re: Question for those of you with diagnosed hypermobility
Post by: welshbabe on December 16, 2008, 01:19:13 PM
hi there , hypermobility can go undiagnosed for a long time . ive had knee dislcations for 4 years now and its only within the ast 10 months or so they diagnosed me with very very bad hypermobility ! i even diagnosed myself with it before the doctore picked it up !! it shows that they dont know everything !  :) you could ask ur physio to test you to see wether or not you have it ? and to what extreme if you do have it ... michelle
Title: Re: Question for those of you with diagnosed hypermobility
Post by: Linds on February 16, 2009, 07:28:34 PM
agree with some of the previous...
A. yes it can go undiagnosed for a very long time...pretty much you are born hypermobile...

B. your physio should be able to tell.. my Physiotherapist was the first one to pick up on how hypermobile I was... rather than the Orthopod I have been seeing for 20 YEARS!

Goodluck