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I don't feel like i'm being taken seriously with my Hypermobility

Posted , 4 users are following.

vikkieyESM
vikkieyESM

I have known about my hypermobility for many years, but now it has become unbearable!

I am struggling to walk as 1 knee constantly gives way underneath me, I'm in constant pain despite attempted physio, pain killers and many other treatments.

I dont know what to do next. 

Can anyone help me?

1 like, 8 replies

8 Replies

  • sarah92c
    sarah92c vikkieyESM

    Posted

    Hello im sarah

    I have hypermobility syndrome (only recently diagnosed) im 24 but my signs for it were obvious just people put me down as "clumsy/accident prone"

    Have you ever dislocated ethier of your knees ?

    • vikkieyESM
      vikkieyESM sarah92c

      Posted

      Not as far as I am aware, and I hope that I would have known.

      The last specialist I saw said he couldnt find anything wrong (rediculously unhelpful) and ive been left signed off work, unable to walk or drive- but not been really told any further

    • sarah92c
      sarah92c vikkieyESM

      Posted

      I understand flower after 14 broken bones and many many many dislocations its took them 24 years to realise ive got hypermobility syndrome .doctors when it comes to hypermobilty can be in the nicest way possible useless.

      The only way I managed to have someone look at me properly was through me dislocating my knee a few months ago.

      But you need a referal for a rheumatologist.

      do you hyper extend your knees ? If so that will most likely be the cause of your problems they told me that the reason myn dislocated so easily(I stumbled putting on my jeans) because my knee was already very weak from hyper extending my knees and the smallest of stumbles completely popped my it.

      If you are hyper extending your knees you have to know the difference between where your knee is and where it should be but im guessing physio have already told you that but you need realy to get a scan done on your knee to cheak

      The joint its self to cheak theres no underlining condition.

      The ligaments,something as simple as walking with your knees hyper extended will strain and put little tears in these

      And also to cheak the cartilage in the knee to make sure that basically its still there

    • vikkieyESM
      vikkieyESM sarah92c

      Posted

      I do hyperextend my knees, and the specialist Im currently seeing is aware of this fact,

      Im awaiting an MRI next week (to confirm that I have not damaged anything) and then seeing my specialist again mid Feb, but he didnt seem to think there was a lot to be done.

      The main issue im having is that being unable to use the bad leg is now causing pains in the strong leg (knee and hip), making it impossible to walk even using crutches which is all I have been supplied with.

      This trouble has worsened since roughly 3 years ago when I had surgery, which I was told was only exploratory, but in fact they removed a mass of cartialige from behind my knee cap which has made it SO much worse sad

  • beth87561
    beth87561 vikkieyESM

    Posted

    Hi Vikkiey,

    I'm 45.  I tested positive for RA at about 37.  Whe

  • taligal
    taligal vikkieyESM

    Posted

    My right knee dislocates. My husband has to pull it straight to get it out. Have you tried special braces from an orthotist? I bought a compression sleeve for my knee which really helps.
  • Rebeccarockchic
    Rebeccarockchic vikkieyESM

    Posted

    hi all my name is becks and i am 35 years years old. I was diagnosed in sept 2015 with joint hypermobilty syndrome/ehlers-danlos syndrome. Having a hypermobility syndrome is a very complex thing. It has a wide variety of symptoms, ailments and condtions that some people will have and some people will never have. There are also diffent degrees of how much someone suffers with it. I had mild symptoms all my life but it got progressivly worse over the last 2 years and i use crutches to walk every now and then, i have become more disabled by this condition and its ailments. i have never dislocated a joint, i do however have subluxations (where the joint partially dislocates).i do have a lot of problems and i suffer with chronic pain every day. Unfortunatly a lot of doctors are not up to date on the terms used, how severe the issues are and disabling and even physiotherapists do not have the right training to deal with it. The collagen in the body is faulty so it affects the ligaments, its makes them loose in the body, so all the joints in the body move around too much. This can then cause early on set osteo arthritis of the joints and injuries of the tendons and ligaments and micro tears in the muscles. A lot of the time the injuries and pain does not show up on mri scans or xrays and this can be frustrating for us, unless a secondary problem has happened like cartlidge damage or arthritis. The physio should teach pacing techniques to not over use each of the muscle groups as it is harder for us than a 'normal' person to stand up straight. My physio also ran a pilates class, pilates is one of the exercise recommended to build up the core muscles in the body so the joints stay in place and it teaches you not to over extend the joints. You can also be referred to a podiatrist for custom made insoles if you have foot problems like flat feet or high arches, they can help with painful legs and hips too. I was referred to congnative behaviuor therapy to i could learn techniques to cope with loving with a long term chronic condiiton. There are also epsom bath salts for the bath and invest in a good tens machine, these can be used for all different body parts aches and pains and sciatica. you can also use different types of heat rubs that you can get off your GP, have a chat with your GP about tens machines/rubs and pilates i always asked before doing something new to make sure its ok to do. I use re usable ice packs re usable hot water bottles and try and stay as active as possible.(I know its hard i really do), i dont know if you have tried taping the joints you can ask your physio how to do this proper too. You could ask to be referred back to rheumatology but my doctor said there was no point sending me back, i went once got diagnosed got given a leaflet and sent on my way. there was nothing else they can do for me. I have been referred to surgeons but you need to be careful with surgey make sure you discuss with any surgeon about your hypermobilty as sometimes its not recommended sometimes for example poor wound healing. It is horrible being in pain all the time, hope this helps  xxbecks
    • beth87561
      beth87561 Rebeccarockchic

      Posted

      I was diagnosed about 10 yrs ago and was not able to find a single case involving adults. So, things are bad enough that I looked it up a few weeks ago, and found this blog among new information from more recent studies.

      I also have RA but wasn't diagnosed until last year. (Always tested positive for it so was referred to the doc that diagnosed the benign Hypermobility syndrome.). Wheni was asked how he ruled out RA last year I had no idea. Doc asked why I didn't get a second opinion. I didn't because it made sense. I do not have the typical signs of RA. Looking back, I did have pains as a kid that explain the Hypermobility. But, that was a long time ago and I don't think it was even on the radar then. Had flat feet...which now I know are fallen arches, double jointed which we know is Hypermobility, etc.

      The hardest thing about all of it is finding a good team of doctors that understand it. Almost impossible. I am lucky in that, for a short time, and just in time, I had that.

      My neighbor is a well known doctor and referred me to a couple that he knew well. A pain management doc and an orthopedic surgeon. A few years ago I went to orthopedic that said there was nothing he could do for me. I talked him in to scoping one of my knees. It was crazy. I was black and blue and swollen from the top of my thigh to the bottom of my foot. I went last year to the doc my neighbor recommended. He did an X-ray and told me there was nothing wrong with my knees. Luckily, I had taken pictures with my phone of the MRI images. As soon as he saw them (on my phone) he agreed I defintely needed replacement and the following week I had one replaced.

      About 8 weeks later I went for a follow up to another surgeon because the discs in my neck were falling. Pain doc found this in films from my previous doc and sent me to the neurologist who said we needed to watch it. (So this was the follow up appt 3 months later.)

      I expected to go in and be told I was still okay. Instead I was pulled from work, driving, riding in a car, etc. said if I jerked wrong I could be instantly paralyzed from the neck down. Shortly after, I had an emergency anterior discectomy and fusion done. (2 removed and a plastic cage put in.). Unfortunately, it didn't relieve any pain. (And he told me it probably wouldn't...that we had to do it to stabilize my neck.)

      So, I'm pretty much where I started as far as pain. Continues to get worse. I see the RA doc next week. The meds they put me on can attack your vision so when I went to the eye doc 6 months after starting the meds, I had lost @ 50% vision in one eye and 30 in the other.

      That was when I started lookng in to the Hypermobility issue again. I called the RA office and asked if the doc was familiar/up to date on the latest studies. He was out of the office. When they called back the following week they told me he said I do not need to worry about that because all my pain is being caused by the RA. I feel like a hamster in a wheel. I wish I could find a doctor with a clear, informed and up to date knowledge about both...sorry for the very long message. Nobody else to tell that has any idea what it's like to live with this.

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