More An Eds Question Than A Pots Question

[delphicdragon]

Hey, I figured since a lot of you have concomitant EDS along with your POTS (oh Joy, right?) this might be a good place to ask a question related to EDS.

I slipped two nights ago on some sand. Barely slipped, just got knocked off balance for a bit. Went to bed without much pain, and woke up virtually unable to move my right leg. I saw my ortho yesterday and was told that I either irritated the gluteal bursa (the one that lets you sit) or tore a tendon in my hip. It's NSAIDS and rest for the next week until I see him again. I've got a couple questions for those EDSers out there.

1) Have you ever injured yourself without really "doing" anything? Up until this time, there was always a true cause. This time I had a really hard time pinpointing what happened, and can only trace it back to the little slip.

2) How do you handle the embarrassment factor/ explaining to everyone what happened? Maybe I am more sensitive than most as I was teased unmercifully during childhood for always getting hurt and never being able to run and play. (I was on crutches for 6 months in 4th grade to try to heal an ACL tear) I hate that I am on crutches and will throw them off to the side if I can get around without them. This time the pain is so bad, I can't. I'd rather deal with the invisible illness of POTS sometimes because you can just say you have a heart problem and no one questions that.

Thanks.

Sara

[erickamcc0523]

I don't know for sure if I have EDS.. but I'm going to a geneticist next week since I think that I might have it. I'm hypermoble and I have some really funky looking scars so, because of that, I have suspected that I have it for awhile... Since I've been diagnosed with POTS, I'm even more sure.

To your questions:

1. There have been many times (too numerous to count) that I have injured myself without even remember how... I also get unexplained bruises, especially in my thighs. I don't remember hitting anything or bumping up against anything. I suspect that a vein just bursts, because before the bruise even forms, in the same spot, it'll be hot and itchy (I try not to scratch, as that makes the itching worse, actually)... the next day, I'll have a real shiner there. There have been many joint injuries just from jumping from a 2 foot porch... or the 4 years I was in marching band, I had to constantly wear a knee brace, because that's such a weak joint for me. Sometimes, when I'm just walking, my ankle will just sublux with no warning... it hurts like **** for about 5 minutes, and I have to sit down, because the pain makes me not be able to walk, and the pain also ramps up my POTS, so I get really lightheaded when I am in severe pain.

2. As for dealing with the embarassment... I have a self-depricating form of humor that works well in my advantage... when I was on a cane late last year, a close friend at my church kept calling me "peg-leg".. "I'm not peg-leg.. I'm gimpy!". If it's a stranger, I'll just say that I'm a klutz and they should go away before my klutz karma rubs off on them. If they are somewhat mean, or saying "you don't LOOK injured" (this also goes well with the "you don't LOOK sick" comments), I ask them where they got their medical license... For the most part, they won't have one and will say so, so I just tell them to quit practicing medicine without a licence and hobble away as best as I can.

I'm sorry that you got so much teasing as a child... I was one of the clumsy children, too, so I got some of it too... Kids can be mean, very mean. It's been healing for me to tell some of this to my 10 and 8 year old niece and nephew (not too many details, just enough to make an example), and letting them know they have to be nice to everyone (that is, unless, the other person is mean to them, in which case they should just ignore them... and don't start fights, but finish them if the other person is spoiling for one) because they don't know how much they're hurting the other person's feeling and how much that other person might hold that within them the rest of their lives.

[anna]

Hello Sara,

Hope the hip pain gets sorted out soon.

1) Have you ever injured yourself without really "doing" anything? Up until this time, there was always a true cause. This time I had a really hard time pinpointing what happened, and can only trace it back to the little slip.

Oh yes many times, the annoying thing is that most of the time people especially DR.'s have great difficulty believing you could have actually hurt yourself as there was little or no trauma!! My son had a wrist fracture, due to tripping while running, but it took a month for Dr.'s to look a x rays properly!, (as only old people break stuff in low impact falls apparently)! then it was too late to immobilise etc. his wrist is now very weak!!

2) How do you handle the embarrassment factor/ explaining to everyone what happened? Maybe I am more sensitive than most as I was teased unmercifully during childhood for always getting hurt and never being able to run and play. (I was on crutches for 6 months in 4th grade to try to heal an ACL tear) I hate that I am on crutches and will throw them off to the side if I can get around without them. This time the pain is so bad, I can't. I'd rather deal with the invisible illness of POTS sometimes because you can just say you have a heart problem and no one questions that.

I say to heck with embarrassment, if being on crutches etc. if it helped me get around then brill as I want to get on with things! Time is too short to have to worry about what others think, fact is what ever happened, happened and you are dealing with it not them!

Anna

Sara

[flop]

I can injure myself just turning over in bed (thankfully not often though!).

I think my friends have got used to seeing me on crutches / in a splint, they had a harder time dealing with my wheelchair. When people ask I usually tell them what the injury is rather than how I got it - eg "I sprained my ankle" rather than saying that I was just walking and my ankle gave way on me.

Kids can be so mean, often without realising. Plaster a big smile on your face and use those crutches, at least then you can get out to see people and not be stuck in bed.

Hope your hip gets better soon,

Flop

[mkoven]

I also rarely have a good adventure story to accompany my injuries. I currently wear a neck brace for cervical and cranial instability. Since it's winter, I can wear a scarf to downplay it, but only so far. When people ask (and strangers do all the time), I just say "long story," when they want to know more, I say "chronic condition," if they still want to know more, I explain eds. I think it bothers people to see, so I know the explanation is more for them. Although I wish I didn't have to wear the brace, I feel tons better in it. but yes, I can get injured rolling over in bed.

[juliegee]

Sorry Sara,

Yes, I can relate to major injuries & I NEVER know how they occurred. My left hip was recently out of alignment- big time w/o my realizing it. I still tried to run, etc. My PT (specializes in runners) was horrified. My right leg was two inches longer than my left- causing tremendous pain in that ankle and my left hip had to be put back in the socket- causing horrible grade 2 (almost 3) groin injury- I'm still dealing with that weeks later.

I have a bad habit of ignoring pain & working through it. I'm older now & realizing that doesn't work I try to listen to little aches and pains before they become big ones. THAT"S my new years resolution.

I don't formally have EDS. My geneticist has DXed me with an unknown connective tissue disorder.

SORRY you're dealing with this too. You are NOT alone.

Julie

[delphicdragon]

Thanks for the well wishes everyone!!!!!

I'm not 100%, but back to a baseline. Actually went to the ER Friday night because the pain was SO bad in my hip. I was seen right away, which was good, but no one knew what to do with me. I mentioned Ehlers-Danlos and they just nodded with ZERO comprehension - I didn't dare mention POTS. (What was funny was in severe pain my BP was 128/77 - so I guess it was probably running low beforehand.) My shock however didn't end there - I had to get X-rays and the X-ray tech took a pic of my pelvis and said it was crooked. I replied that that was probably the reason for the pain. She said "we can't have pictures like that - your pelvis needs to be straight" and before I knew what was happening, she took my poor injured leg and pulled it!!!! A loud pop ensued and she looked panicked and quickly snapped another shot. After which she told me my pelvis was now straight, so she didn't have to take any more X-rays. Well the intense pain stopped after that, which was nice, but I don't like my joints being relocated by inexperienced people. I got lucky she didn't pull it all the way out and dislocate it in another more painful position. I'm a little upset because the X-ray tech didn't SHOW the doctor the crooked picture, so he diagnosed me as having a muscle strain, not a dislocation. OI!

Sara

[juliegee]

Sara-

I swear you had the same injury that I did. It was sooooo painful and I not only walked, but ran m-u-l-t-i-p-l-e miles (like an idiot ) with one leg not properly set in my hip socket for weeks/months. My PT was truly horrified. He also re-set the leg that had slipped out. He is TRAINED to do that (unlike the X-ray tech) who popped yours back. I was told that having a leg slip out of the hip socket is a common runner's injury. I am still recovering. I have had to do months of PT and exercises. I am slowly getting back to running without pain.

I suspect that the orthopedic you saw missed (or misunderstood) this. The X-ray tech figured it out, but didn't get the significance. Once the leg as properly set, the docs reading the X-ray had nothing to see . You've really been taken for a ride. Your leg was definitely dislocated out of the hip socket.

If you are interested, I can give you a link from my PT for exercises you can do to firm up your newly corrected leg/hip placement. Keep feeling better!

Julie