Yesterday I had a biomechanical assessment at a sports injury clinic. I chose them because they mentioned both hypermobility and marfan’s on their website, so at least they seemed to have some idea of the kinds of problems us bendies encounter. They also work with professional dancers, who often also tend to be hypermobile. The assessment lasted 90 minutes and cost £48 so wasn’t cost prohibitive.
The reason I went is that, over the past 2 years, I’ve had both hip and knee pain that I haven’t had before and I wanted to know what the cause was. When I see the podiatrist on the NHS all she talks about is my foot arches, and when I see the Physio she treats me but doesn’t diagnose. No-one diagnoses, probably because they’re clueless – not having an EDS specialist in the north of England is a pain in the arse.
There was more talking than actual physical assessment which was a tad disappointing, although she did fully take on board my mast cell issues (ie no manipulation, massage or drugs were on the cards) and my skin fragility (pertinent when using braces or insoles). Having said all that I totally disagreed with her conclusions, so feel I’m not much better off than before I saw her.
She thinks that it’s the looming menopause causing my joint problems and my EDS is largely irrelevant. Hmmmmm. She’s just gone through the menopause herself and told me “her joints fell apart” which I’m not disputing. But was she on crutches for 9 months? Did she have to use braces on her knees? Did she dislocate anything? Of course not. So how my EDS is irrelevant is hard to understand. I know my fluctuating hormones are causing havoc with my body in all sorts of ways. I also understand my collagen is buggered. But I still want to know exactly what’s going on with my joints because until I understand why my joints are playing up I won’t know how to either stop the rot or manage it properly and I can’t see how anyone else could know how to manage the situation either unless they understand the cause.
She did assess my feet and concluded they weren’t that bad. She did slate my current insoles, however, which I’ve known for some time aren’t right. My NHS podiatrist has referred me to orthotics to have a moulded insole made, but the woman yesterday says they won’t be suitable for me because they’re made of very hard material (which to be fair the podiatrist had warned me about too) and will simply rub my skin off. One of the reasons I went to the sports clinic is that I knew they did a much wider range of insoles and I wanted to see if they had something more suitable. Which they did. So I had a mould taken of my feet, using a foam box rather than plaster of paris as she was concerned that the force used to remove the plaster mould might affect my joints, and am having some custom made insoles done which are super shock absorbent which should minimize the impact trauma of my weight bearing joints, eg. hips and knees. They cost £40 per pair, which isn’t too bad considering I pay £16 for my NHS ones and they’re next to useless. Buying my own insoles also means I can get as many pairs as I like. The NHS provide one free pair and after that you have to pay, if you can get them at all – I requested 2 pairs last year, waited 3 months, and then only received 1 pair!
She felt my knee pain, which is on the inside ligament of both knees, is due to my knees rolling inwards and, although insoles help, they don’t cure the problem. She has given me some minimal exercises to do to strengthen the muscles on the inside of my thighs which are very weak. To be fair she was very cautious and appreciated I can’t do normal exercises because of my ME which was great. I have to sit in a chair with a soft ball or towel between my knees, raise my legs no more than 40 degrees and at the same time squeeze the ball or towel for 5 seconds. I do as many repeats as feels comfortable, never getting to the stage that my muscles or groin area ‘burn’. I then have to rest for 3 days to allow my body to heal (it’s the healing process which actually strengthens our muscles, not the exercise itself) before repeating the exercises. It will be a very long process but at least it’s better than doing nothing at all.
I have been icing my knees at night and taping them during the day and have found that this is helping the pain, so she just said to carry on with that for the time being as the ligament is obviously inflamed and supporting it should help it to heal. I struggle with regular joint supports, as the pressure sets off my dermographism (mast cell hives), and proper physio tape makes my skin itch like mad, so use a self sticking bandage from Boots which works for me as I can alter the amount of pressure applied and also means I can bend my legs without the support digging in the backs of my knees making my skin raw:
The clinic offer a 3D gait assessment which I thought would be really useful, but after chatting to the woman I don’t think she has enough knowledge of EDS to make doing this worthwhile. She just seems to think that once I’m through the menopause everything will settle down and has no concept that I could actually end up in a wheelchair if my joint pain progresses much further.
So, was it worth going? I think yes, if for no other reason that if I hadn’t explored this avenue I would always have wondered if it would have been helpful. I also think the insoles will be great and just what I need. However, I’m no further forward in finding out the cause of my progressively painful, stiff and unstable weight bearing joints or what to do about them.