Reviewing SDO's

After having used these for a few weeks. If I wear them for more than two hours, I get a lot of hip and lower back pain, they reduce the circulation in my legs and find I get very painful cramps in my calfs, behind my knees and upper legs, worse during the night and that can last for several days after taking them off. They don't stay up in position, the zips are too small to handle. No Back to square one.

[HorshamMalc]

Hi Ulrich, I'm sorry to hear that your experience with SDOs hasn't been a happy one. I've never tried them myself but what I've found works for me are MBT (Massai Barefoot Technology) rocker-soled shoes. I tried a pair, on a non-CMT friend's suggestion, and for me they have been a life changer. I can walk almost normally without 'slapping' my feet noticeably and have never tripped whilst wearing them, something I'm very prone to in conventional shoes. My knee joints are also much less painful since I started wearing them. I know they would not work for everyone with CMT, as there are so many differing symptoms, but I personally wear nothing else since I discovered them over 2 years ago. The downside is that they are quite expensive in the UK, around £130 a pair according to style, but they can be found on the internet for about half that price. My suggestion would be to find a high-street retailer who stocks them and try a pair on. If you find they work for you then order them on-line.

Best wishes.

[Amanita]

Hi, Ulrich,

I looked up SDO and find it means either Sensory Dynamic Orthosis (made from Lycra), or Silicone Dynamic Orthosis. From an earlier post of yours, I realise you mean the former.

I'm sorry they have turned out to be such a disaster, especially as they were made to measure. In addition to everything else, zips for people with CMT should have big enough tabs to get hold of properly.

But I do find that my Sporlastic and Ossur (Elastic left and laced right, respectively) orthoses have caused alarming-looking and permanent large purple patches on my calves. The orthotist regards it as outwith his area of responsibility, and my GP ( not a very good one but you don't get a choice in rural Scotland) seems to think it's of no consequence, but I'm absolutely sure something's going on with the circulation. Fortunately though, I am able to wear them all the time, as pain is rare -though really unbearable on my instep when I do get it- but stops when I take them off.

I think you need to see your orthotist -or whoever fitted you up with them - PDQ.

[Tandarts]

Hi Ulrich,

MBT shoes work for me as well

Keep the chin up

Tandarts

[Hidden]

Thanks for your replies, the MBT shoes mentioned are not suitable for me. I'm seeing the orthotist at the start of July, I will see if anything else can be offered.

[Amanita]

I think Karen warns us somewhere about MBT shoes only being suitable if you have stable ankles - which certainly don't come with my type (1A) of CMT.

Ulrich - good luck with the orthotist. I hope he/she will be prepared to discuss your problems constructively, and find something much more suitable for you.