(edited to pop in some paragraphs)
If anyone manages to read all of this post you deserve a medal, please don't feel obliged to comment. I guess I am venting my spleen somewhat - bet you can tell.
Over here some years ago I had the benefit of being on a long term management plan, it served me well and I benefited from a specialised shoulder rehab course.
It was intensive and ongoing and concentrated on 'good shoulder behaviour' which was brilliant as having very poor proprioceptive skills locating muscles which had been switched off because the brain is a clever thing and does this to muscles which have endured dreadful pain. I believe its the brains way of coping with the pain, unfortunately this also meant that I ended holding my shoulder in what over here is known as the pain position and that is bad news as I was continually walking around with a dislocated shoulder.
With this specialist programme I practiced with a very patient physio who had worked with the English Rugby Team and specialised in shoulders, returning to 'hospital physio' as he was fed up with treating people with self inflicted injury! This marvelous man taught me and my brain to literally 'hold' my shoulder in and therefore woke up the muscles which support the area. It is not a cure but boy was it helpful.
Obviously they still dislocate if I were for example to sit on the floor and use my hand and therefore my arm to push myself from the floor to stand up. So I never sit on the floor alone and require a lift up from another person from under the arms to get me up again if I am down. But I don't walk around anymore with my shoulder just 'hanging out' as a result of the laws of gravity.
My daughter benefited from a years worth of twice weekly core stabilising physiotherapy,(the muscles inside which support the back and pelvis if strengthened help with posture and can help gait problems by taking the load away from the knees/ankles/hip simply by learning to locate these internal muscles and strengthen them as much as is possible with weakened/altered collagen fibres can literally get people who may have been previously wheelchair bound at least able to walk in the house.
She also benefited with a physio who took the time and trouble to learn about the condition and also take the advice of Professor Grahame's team at University College Hospital London. Strengthening the muscles from the inside out is felt over here to be extremely important as it is thought to benefit the hypermobile immensely, she now backs this up with Pilates. It was hard and locating again specific internal muscles is difficult with EDS if proprioception is difficult so patience dedication and tenacity was required. The experts in London recommend appropriate physiotherapy as an absolute must tailored specifically to the hypermobile.
I will keep my fingers crossed that the long term management plan is funded by medicare for you Veronica.
Here chiropractors/osteopathy is contraindicated although there are a few who find a good one who will align and relocate! few and far between though. The ethos here I believe is that a physiotherapist educated in EDS can really help the patient strengthen the muscles which in turn help to hold in the joints!
Physiotherapy particularly for children at Great Ormond Street Hospital in London is done on an in patient intensive fashion which is hard but parent's have reported good results. My daughter was diagnosed before these schemes were designed and I really really wish she had had the benefit of them from a young age.
Pain management courses tend to concentrate on managing pain from a multi-disciplinary approach incorporating pacing, distraction techniques and more. It is thought that many medications do not have good efficacy with the EDS patients but there needs I think to be more research in this area as to the cause. My personal opinion is that they can be of help we just probably need more!
I am not a great believer personally in NSAID's as some with EDS feel that if there is no swelling then their use 'may' make the hypermobile joint more vulnerable to injury but this is a subject with a definite 'for' and agaisnt' team. I also am allergic to nsaid's which precludes their use for me at least.
I do take neurontin for nerve pain which is an anti epileptic in essence but increasingly popular for chronic pain patients in lower doses. Others benefit from topomax also an aed. I don't get on with amitriptyline or dothiepin which is an anti depressant often used in very low doses to treat chronic pain, it gives me arythrimia which gets a little out of control but many swear by it and it is considered a useful med, popular with those who have fibromyalgia acommpanying their EDS.
I think medication is such a personal thing though and I have a history of bizarre and strange reactions to the most mundane of meds (am allergic to piriton a med here used to treat allergies) I do benefit from seeing a pain management specialist and do take a combination of medications some of which are pretty strong and opiod based but this has happened more recently as I have osteoarthritis, osteopenia etc.
Its weird how different approaches are in US to UK. It may also be the result of different health care systems and over here the funding is unlikely to take place for surgery if the end result is not as successful as it would be in a non EDS patient. I also think its a personal thing as I have chosen not to go along the surgery route as some have, as stories of failed surgeries have put me off somewhat to be honest. I do know that at some point I will probably have to have some but for now I guess I am surgery shy!
Wow that was a ridiculously long comment on my own blog! (now a post as it obviously was too long)
I agree Veronica, blogging is a sanity saver.
In a way I suppose perhaps naively that I would want to be able to unload the dishwasher after surgery! Currently don't do it anyhow and frankly am happy not to have it on my to do list for as long as I can get away with it!
As i have aged in my forties I am more of the hang loose type of dislocater - a permanently dislocated thumb for example is not an event traumatic to me and does not require painful relocating it just slides in/out and about at will. I am supposed to wear rigid splints at all times but I am afraid too much splinting renders me all claustrophic and I worry that my muscles will waste away completely if they are supported by exterior stuff. I think its important to go with what works best for each individual as despite the condition having a name common to all that suffer with it I really think that each person's experience is unique to them with common denominator's linking us all.
Well I can't type or think about what I am saying anymore and am worrying I am being pedantic in the extreme- deep breaths............ (repeating to myself .. it is OK to have an opinion)
Goodness me no one would ever think looking at me I had a sensible thought in my head. I love the blogging world I can talk and discuss away the ins and outs of EDS with people who understand implicitly about it without continually having to explain. Its great.
thank you for your comments.
4 comments:
As usual, I am yet again educated as to how different countries, and maybe even health plans within certain countries, effects EDS patients. I do believe, however, that at the moment, that most every other EDS blogger I read about is in far worse condition than my daughter.
Although EDS has been traced back through her Dad's family, none of them had dislocations that caused even moderate impairment. They did have significant problems with wound management (Dad lost a chunk of flesh from leg wound that wouldn't heal) but at that time they didn't know it was due to EDS. So I'm of the belief that had my daughter not been so physically active, we might not have ever even known she had EDS. Nor would her father. But years of Cheerleading (gah!) and track have obviously contributed to her dislocation problems.
My daughter did have physio for about 3 months to strengthen her shoulder - then they realized it was just falling out of socket and physio said there's nothing we can do to improve this situation.
When my daughter had surgery last year they used the thermal capsular shrinkage procedure which is typically not used for shoulder surgery anymore - except for EDS patients (in the US anyway). It seems to have a higher success rate than traditional shoulder surgery. Just repeating what I've been told. The surgeon also had to tack down a few of the truly hyper-extended ligaments to the shoulder bone.
Should the shoulder joint become unstable again, we have been told they will use cadaver ligaments to stabilize the shoulder which will also really limit shoulder mobility. I guess it will be up to my daughter as to how much dislocation she is willing to bear before repeating surgery.
And sorry for the long reply, but thought this might clarify my earlier comments as well.
Please don't ever apologise for your blogging. It is just so nice to come over here and read your words.(though the long paragraphs make me squint a bit lol)
My son David dislocated his thumb today, for the first time *sigh* Veronica's thumb dislocates all the time as well.
I often have a hard time commenting because I cant seem to get the depth of my feelings into the words.
I agree it is nice to be with fellow bloggers who 'get it' and I am looking forward to getting a proactive 'treatment/physio' plan in place for both my children. I firmly believe that you either use it or lose it. Honestly, the thought of either of my children having surgery makes me shudder with dread.
Take care, Kim
I can't get a cohesive comment together, but thankyou for sharing how things are in the UK. I'm pretty sure I'll have bucketloads of posts to share about how things are down here soon.
xx
Thanks for the comments.
Post a Comment