Hello from Gerroberts

Gerroberts

I have been living with CMT for all my life, condition gettting worse daily.
All my joints in my legs ankles knees are aged 82 years old.
Hands no longer functioning as usable. I saw the billboard while out and thought I have to have a look at this.

I have had to stop work and from flare-ups losing 20 weeks in recovery. CMT and Arthritis I thought time to find out more.

I know I am not alone but there seems to be no local help?

PIP issues how far the pain is unbearable and there is no medication and the PIP people one day they will feel the pain( I hope not).

Looking to find like people and buddy up and share, I try to do voluntary work on good days.

dreamdaisy

Hello, it's nice to meet you. I know lots of arthritis-related initials but cannot for the life of me work out CMT. I have psoriatic arthritis (PsA) which in turn led to osteoarthritis (OA) and fibromyalgia. I began aged 37 and am now 60, no joint replacements but lots and lots of lovely pain.

I had my PIP interview just over two weeks ago and fully expect to be turned down despite being in receipt of higher-rate mobility DLA for the past twelve years. Obviously my conditions have improved over the past 20 plus years and I will soon be cured! DD

[Deleted User]

Hi Geroroberts
Welcome to the forum. Everyone on the forum understands about pain as we all have various levels of pain and various forms of Arthritis it is good sometime to have others who suffer as you do to talk to and become buddies to encourage and help one another. The most popular forums are Living with Arthritis and Chit Chat.
All the best and enjoy the chat Christine

stickywicket

Hi Gerroberts and welcome from me too.

I'd never heard of CMT either so I googled it and found that it stands for Charcot-Marie-Tooth Disease. Is that right?

If I'm right I don't quite see the connection with arthritis. It seems to be a disease of the nervous system, maybe with more in common with Multiple Sclerosis than with arthritis. (Not that I'm trying to get rid of you )

I did find this site for it which might be useful. https://www.cmt.org.uk/ I found the site a bit irritating and difficult to follow. 'Irritating' because, like this one, every page begins not with the information you were looking for but with a full screen picture of a person who means nothing to you. 'Difficult to follow' because each page has its own mini-menu right at the bottom. So the irrelevant bit's at the top and the relevant bit, almost concealed :roll: at the bottom. Good luck with it

Gerroberts

CMT is a strange thing, it affects muscles, ligaments and joints.
Through your life it gradually pulls the alignment of joints to rub against the top bottom of the joint, knee patella is worst.
Arthritis sits behind the patella and picks great times to flare up.

Not well known CMT but it has a very twisted way of making your joints 72 and 82 years old. No surgery can help as legs are weight-bearing in the Knees and Ankles.
54 years it has been pulling me apart, at 16 they gave me surgery to my Achilles because they thought this would help me put my foot down better rather than walking on my toes, NHS and orthopaedics did not know it was CMT and going to create arthritis in my joints as I matured.
It certainly is a learning curve for joint issues with Arthritis.

I hope this helps clear up how CMT and Arthritisare connected.

Adam
Gerroberts

stickywicket

Thank you very much for that clarification. I see now that the CMT thing, which sounds very nasty in itself, has caused arthritis which is equally nasty. It sounds as if you have learnt to accept and deal with both but it can't be easy. I hope you'll find us friendly and useful on here. We are, at least, all in the same arthritic boat. It's not exactly a swish cruise liner but we get by.

dreamdaisy

Crikey, more living proof that the body is a weird and wonderful thing i.e. mostly weird and rarely wonderful.

Life must have been tough and now arthritis comes along to challenge you further. I genuinely do not know what to say as your situation is, as far as I know, unique on here and certainly a new one on me. It's not often that the online presence known as DD is rendered speechless - I think some of my fellow forum members would award you a gold star! Seriously, if there is anything we can do to help, inform, encourage etc. then we will. You sound to have a pretty good handle on things already, which is often the case with those who have always had to face challenges to their health, but everyone needs a shove up the backside every now and then to get them over yet another hurdle. As I age I am coming to the conclusion that the hurdles are not becoming bigger as I think, it is myself who is shrinking, waning in strength and energy. DD