Hypermobility and CMT

[JollyJ]

Hi All. I wondered if any of you have hypermobility?

My daughter is now 35 and has fall badly 3 times in 2 years.

My father had CMT but I didn’t find this out until after his death. I have never been tested.

My daughter wonders if she has hyper mobility as her joints are very flexible and are possibly the reason for the ankles giving way.

Appreciate any input.

Thanks

Jenn

[kyia_boots]

I'm sorry to hear about your daughter's falls-I feel her pain. Ankle weakness is common in CMT and personally along with fatigue it is the biggest cause for concern. I don't know why (various doctors have told me different things) but my ankle weakness leads to bad falls. I wear a talocast brace if I walk any distance or also if I'm hoovering . I find that really helps minimise falls.

[JollyJ in reply to kyia_boots]

Thank you so much for your reply. I really hope she can find some answers and maybe some strengthening exercises that might help. I am sorry to hear you have bad falls too x

[bev5985]

Hi I also have hypermobility and unfortunately the falling over is one part of it as my knee just gives way without any warning. even though I use crutches to get around n the house it still goes and I end up on the floor. In fact my son says I need a Mr Blobby suit so I dont hurt myself when falling. Out of doors I am now resigned to using a powerchair. I would be housebound without it. Hope your daughter goes on ok. I have had various operations to try and give me some stability but none have worked so I would not recommend surgery.

[JollyJ in reply to bev5985]

It is odd Bev as I always knew her arms were extremely flexible and in photographs its really obvious but nothing to ever be concerned about. Now though the falling is becoming a worry for her and as I mentioned we have never been down the CMT route yet nor any other route. If it happens again she will have to push for more answers. Thanks for the response x

[Brobinson1love]

Yes I do! I also get really bad headache do you? I’m always falling I had a bad fall which I broke my right foot it’s been a year since. My daughter also has CMT 1A she’s 10 and doing good I noticed she walks better with doctor Martin boots

[JollyJ in reply to Brobinson1love]

Hi, I have never had the test for CMT although my dad had it but the falls my daughter is having now are a bit worrying. I am sorry to hear you have horrible headaches too. Actually I was thinking that maybe something high up the ankle would help x

[rgeyesl in reply to Brobinson1love]

Helo,I have CMT1a. I am on a night ventilator for 15years now age 64. The head acks could be low co2 because your phrenic nerve is failing. Please look into this. I hope you get the help you need .

[handmaid]

Hi JollyJ

Sorry to hear of your daughter's problems.

I am 62 now, my CMT has crept on slowly over the last 30 plus years.

Both my knee's hyper extend & that can be quite painful, when they snap back it can leave

me in a heap on the floor, I have to ring for an ambulance as I'm not able to get up.

September 2020 my left knee gave way went over on my ankle & broke the tibia & fibia

which needed surgery. I now have 2 plates and about a dozen screws I left hospital in a

wheelchair which I'm still using. I doubt that I'll walk again............

Wishing your daughter all the best for the future.

[JollyJ in reply to handmaid]

Oh my goodness Handmaid you are really going through it. So sorry to hear what has happened to you. I sincerely hope that you do recover some more and that they can find something to strengthen your leg. x