DizzyGirls Posted July 16, 2017 Report Share Posted July 16, 2017 I am trying to figure out a new problem of my youngest daughter (almost 19). Her knees keep buckling under her and she falls. Maybe as many as 20 times a day. She can walk pretty good in the morning, but by evening, they won't hold her up. She said it feels like her hips are unstable now, too. She's got a brace for each leg to hold her knee caps in place, but when she was fitted for them the orthotist did indicate that these would not hold her up. They were just to keep the knee cap in place. She started this last year. We were at a wedding (lots of stimulation, hot, loud, a lot of people) and when she stood up and went to walk after the ceremony was over, she fell. Not once, but the next three steps she tried to take ended her up on the ground. I have told her at home for a while now, make sure you have your legs with you when you start to walk. I'm not sure if this is Dysautonomia, EDS, some form of ataxia, a spodylesthesis in her lower back, but I needed to start somewhere. So, please let me know if you have leg problems, too! Maybe somehow we can make sense of all this! Thanks! Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted July 16, 2017 Report Share Posted July 16, 2017 That sounds familiar. I get weak in the knees and sorta melt. When it's worse I collapse. Worse yet I fall outright. And I've fainted 2x. However, I've noticed it doesn't necessarily correspond with tachycardia. I wonder what is going on. Maybe some NCS? I will find out in a couple weeks with tilt test. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted July 16, 2017 Report Share Posted July 16, 2017 I forgot to say that my weak knees/collapses/falls/faints are related to drinking water. More water = more falls. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 16, 2017 Report Share Posted July 16, 2017 Hi, Dizzy. This happens to me. I feel like a baby giraffe trying to take it's first steps some times. I can be standing up, completely still and one of my knees will suddenly collapse backwards. This throws off my balance and my next step to try to right myself is unsteady, then the next one and suddenly, I am on the ground. I wasn't even moving. I was just standing there. I didn't feel like I was going to faint. I had no warning. I don't know what happened. It is like my joints just go any direction and my muscles can't hold them in place. I am suddenly a rag doll. I don't have any answers for you. Keep us posted on your daughter's surgery. Kim Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 16, 2017 Report Share Posted July 16, 2017 Buckling legs is one of the things that led me to being diagnosed. It wasn't so much that I had weak knees but more that I would suddenly lose the capacity to hold my body erect, like something had suddenly drained every molecule of energy from me. I would consider taking your daughter to a neurologist and ask for a prescription for physical therapy as she needs to strengthen her entire body to help keep herself erect. PT has helped me a lot, I have been able to hold on, to endure, so maybe it might be helpful to your daughter. I hope your daughter will feel better soon. T Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 17, 2017 Author Report Share Posted July 17, 2017 Hi all! Thanks for your input!! Another question for you: do you all have Ehlers Danlos? What's happening to you three sounds like the same thing that is happening to my daughter. Kim, you said you are suddenly a rag doll. Yes, that is exactly like her. She does look like a baby giraffe when she tries to walk sometimes. Sometimes she looks a bit like an ostrich because of how she is trying so hard to get her body to move where it's supposed to go. Often this is worse while she is just standing. Momentum seems to be her friend right now. She'll say it's like her bones in her thighs (pardon the brain fade on the anatomy right now!) have to balance on the bones in her lower leg. No muscle strength to hold them together. BuffRockChick and WinterSown, maybe it is neurological in nature. We are a little shy on neurologists right now because the one we were seeing is on the 6th floor and my daughter can't take the elevator up because of her vertigo. So, right now he is out of the question. Her knees can't go up one flight of stairs, let alone 6! Does this happen sporatically in you all or is it progressive. My daughter's seems to be progressive. It just keeps getting worse. In the morning she's not too bad, but the later in the day it gets the worse it is. This also happened in Costco one day. Do you all have Costco (big warehouse store)? Anyway, we got inside the door, fortunately we brought her crutches, but she about crumbled. Her knees went limp and about ripped her arms off trying to fall and hold on to the crutches. Seriously wondering about a wheelchair at times. Thanks for your help! Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted July 17, 2017 Report Share Posted July 17, 2017 I don't have EDS, it's pre-fall/pre-syncope symptoms for me. It's sporadically, follows the pattern of ray dizzines/collapse/fall/faint symptoms rather than tachycardia. Her pattern of getting worse as the day goes on sounds different from what I experience. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 17, 2017 Report Share Posted July 17, 2017 I have POTS and vertigo. I haven't fainted in a while but can't escape presyncope several times a day. I have not yet found a pattern as to why I am suddenly symptomatic though before the Vestibular PT, side to side movements as when you are shuffling back and forth at the kitchen counter when you are making dinner, or standing and turning to the right like when you get up from your desk chair, nailed me everytime. Now, I have to go lie down if I exercise too much while standing. I can do exercises on my back on my bed no problem but I have to limit my time on the balance board, I've recently noticed that using it too long makes my feet turn purple so that accounts for those feelings. I have to go to BJs really bad, we are out of everything. If you search a particular store on google they will show up in a sidebar with store information. Look for a graph at the bottom of the box that shows the stores peak business hours. I try to set up my shopping time for their least busiest times. This gets me through a lot faster. T Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 17, 2017 Report Share Posted July 17, 2017 Mine is not related to fainting at all. All of those issues can be under control and then suddenly my joints will just quit supporting me. Do I have EDS? Good question. They are considering that diagnosis for me. I have craniocervical instability which is putting pressure on my brainstem, which they think is causing my dysautonomia. Maybe. If I have it, it is EDS III. Neurosurgeon wants to do surgery. I'm in the process of getting fitted for a neck brace and trying PT first. Neurosurgeon said PT will probably make it worse and to stop if it does. I should get test results back this week. One time I had a rag doll episode and a near syncope episode together at my attorney's office. (I was drawing up a will, power of attorney, etc.) It was a little warm and I stood up to leave. My whole body went limp and I hit the floor. I managed to walk out of there, but ended up in the ER later that day. I had 2 sprained ankles and a sprained knee. One ankle was so bad I had knocked bone marrow lose inside the bone. They sent me home with crutches that I couldn't use because the RA was so bad in my wrists and elbows. That was a difficult few weeks. It took 2 months to get back to 'normal'. I get no warning when this is going to happen. It is almost like you live your life balancing on a balance beam, but one slight wrong movement and you fall. I don't have any answers. I hope you find some. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 18, 2017 Author Report Share Posted July 18, 2017 Thanks gals! This is all very helpful. Even if you don't know what to do, it gives me some ideas. It does definitely seem to run with those who have EDS or think they might (Kim : )!) We are dealing with more issues as we are getting closer to my other daughter's surgery for cervical instability. But, this does really seem to run with fatigue. In the beginning, it seemed to happen with POTS symptoms, syncope, etc. But now, seems to be strictly fatigue. She has no endurance to begin with and when she pushes herself, well, like anything, it makes it worse. WinterSown, she has learned to shop online, A LOT!! At 19, you just can't take that shopping bug out of the girl! Both of my daughters just love Forever21 and it is so much easier to find things online than in their store. I absolutely loathe going to their store, but online, piece of cake. Stores, the music is too loud, their stores are a mess, no organization, and they are really busy. Can you say POTS attack!! There is so much more selection online, too. The only time she goes to warehouse stores like Costco is when we've ordered her new glasses and she had to go pick them out and then have them fitted when they came in. So glad we only have to do that every 2 years!! Didn't think we were going to get past the doorway! All the commotion, merchandise, she just collapsed. She's going to the orthotist tomorrow to see about new braces. We'll see what he says. He's somewhat knowledgeable about EDS as far as the joints, just doesn't understand the dysautonomia part of it. I'll let you know what he says! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 20, 2017 Author Report Share Posted July 20, 2017 So, went to the orthotist this morning (8:15!!!) and he spent a good hour with her watching her walk and fall, walk and fall. He tried some of those braces with the knobs on the sides to adjust how far your knee extends, but when she walked, the knobs were rubbing as her legs moved. When that happens, it would through her gait off so much that she was walking in circles!! He said, well, she's not going to get anywhere at that rate!! With the big braces on and stabilizing the knees, it then made her hip joints and ankles really unstable because it was putting more pressure on them to take over. He has a friend who did his master's thesis on Ehlers Danlos and joint instability and has been contacting him regarding my daughter. So, couldn't have found two more knowledgeable people, but, nevertheless, he was a bit stumped. That being said, he did try some simpler versions with the metal boning within the brace and she could actually walk in them and her knees felt more stable. I explained to him that it started as sort of a pre-syncopatic episode thing, but now is just totally joint instability. He tested her muscles and said that her muscle strength was good. He wished it were her muscles, would be easier to treat. Thinks it's the ligaments or possibly a spinal issue. He's recommending an MRI of her lumbar area to see what's going on in there. When she was little, she actually sat down one day (she was about 4) and said that her legs were tired and couldn't move any more. So, the leg weakness has always been a problem as far as endurance. Now we've got POTS and joint instability thrown in there too! Quote Link to comment Share on other sites More sharing options...
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