Charcot-Marie-Tooth UK
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Feels like something dislocates!

I suffer from cmt type 1a. For about 8 years now my right knee has been causing a lot of pain and it (in the only way I can explain) gets stuck in a bent position and then has to be pulled and cracked back into place before I can walk on it again. It hurts but I'm so used to it now I can handle it. However recently when I've woken up or sat down for a while a bone right on my inner pelvis feels like it dislocates, I can't stand and the pain brings me to tears. The other day I was forced to slide around on the floor in agony while dealing with my two young children until it cracked back into place (which was also excruciating). Has anyone else had any experience of these sorts of pains and any advice on how to deal with them? I can't take any medication aside from co-codamol as I am breastfeeding.

8 Replies

i suffer with both happens when walking to


Hello to xrawrkittenx ....

So sorry to hear about your most distressing condition: Dislocations at a bone joint normally rare, and only occur after a joint has been subjected to a "force":

A knee dislocation occurs when the bones that form the knee are out of place. A knee dislocation, more specifically, is when the bones of the leg (the tibia and fibula) are moved in relation to the bone in the thigh (femur). The bones of the knee are held together by strong bands of tissue called ligaments. Each ligament is responsible for stabilizing the knee in a certain position. For a knee dislocation to occur, these ligaments must tear. A partial dislocation is referred to as a subluxation. In some injuries, the kneecap (patella) and its ligaments are also disrupted:

Inappropriate or delayed treatment, of a knee dislocation may result in loss of permanent strength of that particular joint:

Knee dislocations are rare. They usually happen only after major trauma, including falls, car crashes, and other high-speed injuries. If the dislocation reoccurs then I suggest you attend your nearest A & E Hospital for early examination, x-ray etc, and if required, ongoing referral to the appropriate specialist: Do not try to "fix-it" yourself ?

If the knee is dislocated, it will look deformed. The usual straight line of the leg will be crooked or angulated:

Sometimes, knee dislocations relocate (go back into place) on their own. In this case, the knee will be very swollen and painful. Even if the knee relocates, usually significant damage (tearing) of ligaments has occurred:

You must speak to your G.P. and request an urgent referral to a Consultant Orthopaedic Surgeon for his/her diagnosis, as with any bone joint dislocation, the surrounding ligaments holding the joint in place, will also have been damaged :

Best of luck ! ....

John (Glasgow)


I had trouble with my knee frm the age of about 13 when my daughter was little I used to change her on the floor or play with her but would get stuck and not be able to move for ages.It was a real problem. After many visits to the doctor I was told it was arthritis and I now have 2 replacement knees.


Hi xrawkittenx,

So sorry to hear of your knee & hip probs. I know about knees dislocating and my lower back clicks into place when I lay down both at night and in the morning on waking - but not sure about the hips. Tho I learned in first aid that knee problems can cause hip problems.

My knees have been dislocating since the age of 20 (45 now).

The first 2 times I went to hospital I had to wait 2 1/2 hours in casualty to have the knee put back into place, at which point, I required 6 weeks in plaster each time and 3 months hospital physio, and another month or two of physio exercises at home, to recover the wasted leg back to 'normal'.

Since then whether its full, partial, or quarter dislocation I put it back myself because I can do it in seconds to minutes. Usually just standing up straight whilst holding on to something does the trick or I use my leg muscles to help gently push backwards at the joint.

I then immediately ice the joint over a towel periodically for an hour (I have done a first aid course so only ice for 10/15 minute increments then have a break and repeat otherwise you can cause further nerve damage). I then elevate my leg over 1 or 2 cushions. I don't do anything except go to the toilet the first day it happens. I strap my leg up with a blue neoprene ski support (found on an internet market place 'A') which has spiral metal stays in it and a gap for the knee cap. I elevate my leg for 3 weeks and put occasional ice on it. When I feel able to I use my Tens machine (found this out from my physio) and this helps to prepare before doing gentle leg raising excercises to try to strengthen the area. Doing all this means a two to three month recovery instead of a 4-5 month recovery.

However, may I add that this works for me but that, I in your particular case I really do recommend that you see your doctor or go to hospital a.s.a.p. to get your hip problem checked out too. Your doctors can also refer you to 6 free physio treatments on the NHS at your local health centre, after you receive any necessary treatment for your hip/knees.

I had a friend of my sister's in hospital with a broken hip and she basically just had to lay down all the time for it to heal.

I empathise with your having to care for a baby/children. Can you get someone come in (friend or family member) to help you with home stuff to give you a chance to rest?

I was told by my father who had a friend experiencing disloctions, that once people dislocate a joint it always retains a degree of weakness and therefore can dislocate again at any time. I always keep my knees strapped up and have to walk with a walking stick. Two doctors and a consultant have told me I can have a ligament tightening operation but I've chosen not to because even my doctor was waivering in his voice when explaining it; I got the impression from him that it doesn't work for everyone - but that doesn't mean it wouldn't work for you.

Because my legs are now bowed at the knee joint and to help prevent my dislocations I do everything S l o w l y. Avoid sitting down quickly (dislocated my knees sitting down fast twice), avoid kneeling altogether or kneel on a cushion, and especially avoid turning round or twisting when standing - so I turn round by moving both my feet individually a little at a time like a penguin - I've got this down to a fine art now. But you know it's always a constant worry. I've got it on my mind with everything I do.

I really hope you get the help & support you need with your hip and knees x


All I can say echoes what John has said above - PLEASE get a referral to an orthopaedic surgeon as soon as possible and get it all checked out properly - none of that sounds remotely "normal" - even bearing in mind the "normal" CMT problems.



Yes and yes. I have always dislocated my knees and my hips have felt like they have come out of the socket in exactly the same way that you describe. For my knees, they got so used to dislocating that even if the covers moved over them the in bed they would pop out and would pop back in as easily because everything had got so stretched and weak. I would just carry on as usual. I know now that this was the worst thing that I could have done, but whenever I went to the hospital for this they would put me in plaster and that really wasn't the right course of action either, even though I didn't know about the CMT back then. Over the years the bones had become so damaged with all the dislocations that there was NO cartilage at all on the back of my knee cap/ head of femur and walking became extremely painful. Three years ago I had major realignment surgery and had ligaments tightened which has been amazing for me, I have also educated myself since being diagnosed and now do regular physio/ pilates/ swimming which has really strengthened my hips and they do not pop out like they used to at all.

I am also hypermobile which I really don't think helps at all with this. Remember when you are pregnant all your ligaments loosen especially in the pelvis. I know that with my first pregnancy (which was before I was dx and had the surgery/ physio) my hips were excruciatingly painful and used to 'pop out' all the time.

Please don't leave it. I know that if I had known about the CMT, stayed as strong as possible and was given help for these problems in my teens I would not be facing more knee surgeries in the future. Good Luck. x


You have a tear in your meniscus for sure! Go and see a doctor instead of asking questions online :p Dont leave it like this cause each time your knee locks and you have to pull it, you are causing more damage!!!


Thanks for all your advice. I've been to the surgeon who has sent me for three different mri's and can't find anything that he thinks would cause it. There was a small bone cavity, a bone cyst and a tiny hairline fracture that has healed. He's now referred me to a pain management clinic as he says there is not much else he can look for. :(


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