By Ann on Wednesday, February 07, 2001 - 06:51 pm:

Hi:

I've been told I have weird elbows and my husband nearly throws up when I lock my arms or extend them as far as I can. If I hold a golf club and straighten my left arm, the crease on the inside of my elbow is staring up at me.

I've been told by physical therapists that I'm hypermobile. I had shoulder surgery about a month ago and while I developed almost complete mobility of my arm within a week or so, the pain persists. The doctor removed about an inch of my collar bone which had bonespurs. Both he and my physical therapists seemed amazed just two weeks after surgery.

Having said all of this, I have two questions:
1. Could my elbows and general hypermobility contribute to my pain while at the same time giving me back my flexibility in short order?

2. What do hypermobile, hyper-extended or double jointed elbows look like?

Thanks,

By Heather on Saturday, February 10, 2001 - 04:08 pm:

Hi Ann! I'm Heather from the UK. I have only recently been diagnosed with HMS, and I have it worst in knees, elbows and back. The description of your elbow when playing golf made me laugh because that is just how my elbows look too! They do lokk very deformed: I remember my grandmother seeing me put my arm up to answer a question in her bible class when I was about 6, and she was so worried that she asked my mum what was wrong with my elbow!!! Of course, at that time, hypermobility syndrome was unheard of, but I was called "double jointed" in my elbows.
I have chronic tennis and golfers elbow in both arms as a result of my hypermobility: I am a violinist by profession, and play in a major Symphony orchestra in the Uk, so my arms are getting overused on a regular basis. But if I had known about hypermobility when I was younger, I might have been able to stop myself having so much damage now. One of the features of HMS is decreased priopreception(spelling?!!)-inother words, we can't tell where our joints are in space, and so tend to over extend them without realising. I have physiotherapy twice weekly, whic is very gentle, not manipulative, and I also have ultrasound on the elbows to help the pain. but I do find that I still misuse my elbows...I also have HMS in knees, shoulders(probably, along with rotator cuff tears) and back, and possible hips too. I do know that having the HMS has made a great difference to my pain levels, and I am also now very stiff in all my joints-explain that if you can!! Hypermobilty syndrome, yet very stiff, and ever since my first consultant's appointment, they have sadi I am stiff, yet have HMS,,,what a mystery!

All the best to you, Ann, and I hope you get some good help.

By Sheena on Sunday, February 11, 2001 - 03:43 am:

Heather, If you can give me any advice about avoiding problems when playing the violin I would be really grateful. I used to play in amateur orchestras and quartets but gave up about 18 months ago due to aching shoulders and neck. That was at the same time as my lower back problems got bad and I was diagnosed with HMS. I want to start violin again, just playing occasionally, not in an orchestra.

By Ann on Monday, February 12, 2001 - 08:17 am:

Heather:
Thanks for the info. Before I found out I'm hypermoble -- no one has ever said I have HMS -- my pain management doctor tried prolotherapy on my SI joint in hopes of reducing hip and leg pain. I've lost count of the number of prolo treatments I had, but without meaning to, I can pop that joint in and out in a heartbeat. When it's out, one leg is slightly longer than the other. I also have experience having my pubic joint out of alignment. I never really thought about it before, but all this stuff is beginning to add up.

You mentioned your pain levels. Mine pain tolerance is practically non-existant. What about yours? In addition to hypermobility, I have degenerative disk disease and have at least two lumbar disks that have left on their own. I've had one removed from my neck and the most recent surgery before the shoulder was to move the ulna nerve in my left elbow. It became impinged and my left hand became a claw. It was moved to the inside of my arm and made my hand more normal.

I still would like to know if my hypermobility increases the pain and makes healing from the shoulder surgery more painful.

Ann

By Gilly on Monday, February 12, 2001 - 10:12 am:

Re. the possibilty of HMS increasing pain. Although EDS 3 research has found that local anaesthetics are not so effective, the experience of chronic pain is very much emotional. As such, we all have approximately the same pain threshold, but as pain lingers our tolerance and perception of pain increases with our Nervous System firing more quickly with less stimulation. Thus, the pain experienced is out of proportion to the long ago acute problem/injury. This does not mean that pain is imaginary in any way, just that living with chronic pain alters our physiological responses - including the level of serotonin in the brain - and our ability to cope i.e. if we think about all the things we cannot do anymore and constantly search for external solutions, rather focus on what we can do and our own resources, we will not fare well and will be more likely to end up with a chronic pain syndrome. So the best approach, as with so much chronic illness, is to mobilise our own resources using gentle exercise, relaxation, positive thinking etc. Hope this helps!

By Ann on Monday, February 12, 2001 - 10:49 am:

Gilly:
And 100 mgs. of Zoloft every morning makes it easier too.

Ann

By Sharon on Monday, February 12, 2001 - 03:33 pm:

Gilly,
In my Opinion and from what I have learnt:-
Everybody actually has a different pain threshold which has to do with how our individual nervous systems and brains register and recognise pain. With HMS/EDS the problem is usually not long ago and is ongoing as dislocations/subluxations and muscle strain can be and are a daily occurance which can and do cause minor ? injuries and can not be compared to a lot of chronic pain problems due to the fact that the injuries are ongoing and the body is almost always in a state of repair/recovery (the acute stage)from SOME injury or accident . Also HMS/EDS ARE CHRONIC PAIN SYNDROMES so we aren't likely to end up with one WE HAVE ONE, but yes we could get more (I also have Reflex Sympathetic Dystrophy along with my hypermobility problems).So HMS/EDs is actually a Chronic and Acute Pain Condition. The experience of Chronic Pain is "not very much emotional", chronic pain can be affected by emotional issues but can not be started/controlled by emotional issues. It is believed by Scientists that Chronic pain may originate by changes in the :pain systems" of the body so that the brain is being given false pain messages(ie new nerve connections can develop in the spinal cord after prolonged stimulation from pain nerves).
Sorry to be so negative to what you said but I had to as I am sick of people say and telling me that my pain is caused by nothing whaen there is a biological factor to it ie. HMS/EDS.

Ann,
I have the same problems with the healing from surgery being more painful and slower (after my last ACL knee reconstruction I spend 6 months in a wheelchair, partly because I couldn't use crutches because of a shoulder sublux/dislocation/pain problem) I was diagnosed with Reflex Sympathetic Dystrophy (RSD) about 5+ years ago, it is a chronic pain condition of the sympathetic nervous system, but I also have a hypermobility problem and think that it could be HMS/EDS 3. I just wanted to say hang in there. From what I have read the Degenerative Disc Disease could be caused by your EDS/HMS , I personally think that your pain tolerance levels could have been lowered by the fact that you are always in pain and they never get a break so that each new pain seems soooooooo much worse, the nerves are being over stimulated in a BIG way, I was put on Anti epileptic drugs such as Epilim to try to stop my nerves from firing so easily but I have been one of the ones that does not respond to these treatments.
Hope this helps and don't give up, stay positive and know that there are others out here who KNOW what you are going through.
Sharon :-)

By Ann on Monday, February 12, 2001 - 06:04 pm:

Sharon:
Thanks for the support. I sort of discounted Gilly's opinion about chronic pain. I've had degenerative disk disease since I was 30+ and I'm 50+ now. As I told by orthopedist today, I had the disk between C5 & C6 removed about 12 years ago, so shoulder problems, headaches, upper back problems all seem eventually to reach my neck. My neurosurgeon -- a dear man -- calls the headaches cervical headaches. Anyway, I can't convince the surgeon who did my shoulder that the pain medicine I'm taking for chronic neck, back, hip and leg pain is not sufficient to handle the additional shoulder pain. The last time I underwent surgery, my pain doctor wrote the same thing to my surgeons, but he has left the state, and I didn't think to write and ask for a message.

I tried one of the anti-seizure drugs, too, but, like you, it didn't help me either. I'm unfamilar with RSD, but any chronic pain syndrome of whatever nervous system is tough to go through. Good luck, and thanks again for understanding. I hope the people who believe it all depends on a good attitude don't actually have the problems you talk about. And if "emotional" means depression, you can bet your last dollar that one builds on the other and managing one can very much lead to helping the other. That's why I faithfully take Zoloft every morning. I've also found that Oxycontin, a long-acting narcotic pain medicine is better than taking a pill every four hours. You don't get the euphoria, but just a steady dulling of the pain.

Ann

P.S. I collect useless information. Did you know that humans and giraffes have the same number of vertibrae in their necks? Giraffes must have REALLY big ones.
a

By john quade on Tuesday, April 17, 2001 - 09:28 am:

I have a prolem with swolen joints it takes a very little thing or nothing to set it off it lasts a few days then pops up at some other joint it is very painful my doctor only gave me ibuprofen it hasent helped much what type of doctor should I go to. also what helps with the pain