New rheumy and tested positive for Hypermobility syndrome!!!

[joyous]

Hi Guys,

I had my appointment with my new rheumy on Tuesday and all went well. So far I am pleased with my new doctor as she is really nice and understanding. I didnt feel rushed and managed to ask all my questions. She explained far more to me than any of my past rheumys did. And she noticed something new straight away with me.

I have always been a really flexible since i was young, which came in handy when i was a teenager as i did dance classes and enjoyed martial arts. Then i started suffering from joint pains and fatigue when i was 17. I was diagnosed with SjS a year ago when i was 22, and mainly had joint pains and fatigue. I didnt really notice the dry eyes and mouth till i was tested for dryness, but now its probably got more noticable to me over time.

About a year or two ago, I started to have muscle pains mainly in my legs, and sometimes in my arms. i can sometimes feel really weak to walk, and struggle especially going up stairs. I put this down to the SjS, and so did all my past rheumys. Then my new rheumy on tuesday noticed that i was quite flexible when she was checking my joints. She asked me to do a few quick tests on my flexibiiity like seeing if my thumb could bend to touch my wrist, which i can do easily, also turning my elbows in and touching the floor with my palms without bending my knees. I managed to do all of these tests easily. I thought i could touch the floor easily becuase of my dance experience, and i thought the thumb and elbow thing was normal.. . turns out its not so normal, and im a bit freakish lol. She told me that i tested positive for Benign Joint Hypermobility Syndrome, and that my muscle pain and some joint pain was caused by the Hypermobility Syndrome.
I had never heard of this term before, so she told me that as my joints were so flexible, my muscles had to work harder as they are more supple. Also that my joints can get easily over-stretched etc, therefore causing pain in my muscle which could sometimes feel like its coming from my joints. She did say that I still get joint pain from the sjogrens, as my muscle pain started only 2 years ago. I always wondered way i was still very flexible even though i havent done any exercise or dancing in years. She said that i needed to focus on exercise plans which involved strengthening my muscles, as oppose to the plan my physio had put me on which involved stretching, as it would do me no good.
I also read that im likely to get joint dislocations, in particularly my shoulders which freaks me out. Its weird because i always would say to my boyfriend that it sometimes feels like my shoulders and knees could pop out of their socket, as they feel so loose when i stretch them. Now im so conscious of stretching my shoulders or knees as im scared it might happen for real lol!!!
I was wondering if anyone else has Sjogrens and Hypermobility syndrome, and how you deal with hypermobility in general, and is this a common thing, as i havent heard of it before tuesday. Thanks in advance, and sorry for rambling, this post turned out pretty long...

Joyous x

[eyeamdry]

I have never heard this term before, but that doesn't mean a whole lot.  I am double jointed in my elbows, but nothing like what you're talking about.  Be careful to not overextend!  Lucy

[Scottietottie]

Hi Joyous 

I used to be pretty flexible all apart from my hips. I could certainly touch my wrist with my thumb as you describe. I used be able to lie face down and get my feet either side of my head.

My daughter had to go to a podiatrist. She is ultra flexible apart from her hips. Her knee does pop out of joint sometimes. The podiatrist showed me how he could dislocate her toes and pop them back again without it hurting her. Her fingers can do the same. Her elbows look as though they point the wrong way sometimes. The podiatrist said she had way too much movement in her ankles and the flattest feet he'd ever seen. She used to dance too. The guy didn't say she had a syndrome but did say she was hypermobile.

The physio sounds like a good idea. all that dancing you did probably strengthened some of the muscles or your problems may be even worse!

Take care - Scottie 

[jonnell]

Joyous,  Thank you so much for this post.  I have a 4 year old little girl with sjs.  When we saw her Rhumy last she told us Jenna had hypermobility of her joints, especially her wrists and ankles.  Jenna is also flat footed.  I really didnt understand what she was talking about but after reading your post and looking us the syndrome it all makes sense now.   Jenna has a lot of leg and back pain but no swelling so its not RA.  Her doctor put her on naproxen which is the same medicine in Aleve and Jenna cant walk long distances especially when its hot out.   She also has to wear sneakers with arch support the doc recomended New Balance sneakers.  So I guess it must be related to the sjs.   Jenna goes again on Monday so Im going to ask.  Thanks for the information and good luck with your symptoms                             Jonnell and Jenna

[genko_b]

I have some hypermobility and my son has a lot. Perhaps there is some genetic connection between hypermobility and Sjogren's.

Genko

[joyous]

Thanks for all your responses, I wasnt sure I would get so much feedback. its nice to know that this post helped you Jonell in discovering more about the hpyermobility syndrome for your daughter jenna. Hopefully Jennas rheumy will be able to refer her to a physio to help jenna with some muscle strenghtening exercises which could help her. I need to find a routine myself that will help me too.
I am very flat footed too, but dont have any special trainers or shoes to help this. I might ask to see a foot specialist about this, as i find it hard buying shoes that i can walk properly in. It is something i will look up for definate. it would be interesting to find out if the two syndromes are linked, but so far my research hasnt come up with anything. Thanks again for your posts, and have a nice easter break

Joyous x

[Katybarstool]

Joyous

I have very flat feet too. I heve been wearing orthotic inserts in my shoes for a few years. I thought it was something new for me, but then mum remembered I had needed special shoes as a child. The inserts are fine in boots and full shoes, but not very helpful with summer shoes. However, Crocs have a higher instep, so I try to wear thm when I can.

Kathyx

[Linda196]

I have "very flexible joints" according to my orthopedic surgeon and orthoticist, but never got to the diagnosis of a syndrome. I've always been "double jointed" but in recent years, with the onset of joint stiffness form various types of arthritis, I've sort of balanced out...I'm not as restricted as the doc expects from the arthritis, but I'm not as flexible as I was when I could practically fold my hands and feet back against arms and legs!

Kathy, Propet makes a line of sandals with removable insoles that accept orthotics, and are much more summery than the heavy walking shoes.

[Katybarstool]

Thanks Linda. I'll look into them.

Kathyx

[dolphinwithwolf]

Wow!  I always thought I was kind of unique in the fact that I am so double jointed (maybe that's an old term docs used to use) in my fingers.  I also used to just be walking on a perfectly flat surface and my ankle would give out and not sprain or break ever.  At one time when I went to the podiatrist he was able to take my foot and turn it all the way in towards the other.  That's pretty much went away since I went through a period where he kept it taped for a bit.


DWW

[kim31072]

http://www.jaoa.org/cgi/content/full/106/9/531

http://www.medicinenet.com/hypermobility_syndrome/article.htm

http://www.hypermobility.org/photos2004.php

http://www.chiroweb.com/mpacms/dc/article.php?id=31763

here is a good blog from a girl thats had it(and diagnosed)since she was young
http://archerygirl.wordpress.com/hypermobility-and-me/
hope these help