Yesterday I went to the specialist expecting to have a steroid shot in my wrist (potentially both of them).
I left with altogether different results.
My right wrist has been killing me for ages now - set off by pregnancy, exacerbated by housework, babies, and typing, I regularly hold my wrist between my arm and my chest at the end of the day to try to keep the feeling of fire from taking over my arm. I'd been put on anti-inflammatories and tested for arthritis - the pills didn't work and I am arthritis free.
So I was referred to a specialist.
I strode into his office yesterday (after finding out I'd put a few pounds on and I'm not happy about that). Our local hospital is both an NHS and a military hospital, so in the room was the specialist - I'll call Dr. Seamus - and a military physician.
I immediately liked Dr. Seamus. Very rough, dressed in a football jersey, and speaking with a thick Irish accent, he put me immediately at ease with jokes and an easygoing manner. I explained the problem and told him I was told I'd developed tendonitis while pregnant.
"They tell people such bullshit," he replied.
Oooh. A doctor who swears. How cool is that?
"Let me see your arm," he said. He immediately starts moving things around. He looks over at the military doctor. "See this?" he asks him.
"I do," the doctor replies, staring.
Dr. Seamus looks at me. "Does that hurt?" he asks.
"I just popped your hand out of the wrist joint. I'd say that should fucking hurt," he replied.
Wow. A doc who says the F bomb. I was so distracted by that I didn't even notice the hand, until I looked down and saw that things weren't looking so normal down there. My hand looked like a bulb hanging loose via a stretch of skin.
"No, that shouldn't happen," he confirmed with a smile.
He starts moving my fingers around. "I'm very flexible," I tell him.
"This isn't flexible, Helen," he replies. "This shouldn't happen." He bends several of my fingers backwards more than 90 degrees. It doesn't hurt at all. He then bends my thumb down so that it touches my arm. That doesn't hurt either. He looks at me and he and the other doctor try to bend their fingers back. "See, you shouldn't be able to pull your fingers back more than a max of 45 degrees," he tells me. Both doctors' hands are representive of this fact.
"Have you ever dislocated anything?" he asks.
"Yes. Both my knees. Sometimes I have to push them back into place. And I can pop both of my shoulder blades out at will."
"Not really," I admit. "Good fun when you're drunk though."
"Can you stand up and bend over and touch the floor with your palms without bending your knees?"
"Yes. I always thought that made me a good catch, not that it was something weird."
"Well I've always been flexible. I'm good at yoga."
"You're not good at yoga, Helen. You have - " and then he made a noise that sounded like a sneeze.
"What?" I ask.
Hey there's a song in that. "Yes."
"Can all of your joints - hips, ankles, the like - bend in ways others shouldn't?"
"Dear God am I clumsy. I always have been."
I think I'm losing my hearing. "I'm sorry?"
"You have Ehlers-Danlos Syndrome. No question about it. I'd say you're types II and III. It basically means the collagen in your joints is not synthesizing. We all have joints, and these joints are filled with collagen that act as connective tissue. Basically your body's joints aren't in great shape."
"I don't understand. I'm only 34."
"Well, it's genetic. And there's a 50% chance you've passed it on to your children. You should watch them for flexibility."
"What can we do about the pain?" I ask him.
"There's no treatment for this. You're almost certain to develop arthritis, which we can treat, but medications can't help. Using a brace or avoiding using deteriorating joints might help."
Oh of course. Because I don't need joints, what with a house to renovate, twins, a day job, and a novel I'm trying to finish. Is it too much to ask for a fucking break?
"You mean I'm going to live with this pain forever?" I ask. "I just have to suck it up?"
"Aye, it's pretty bad fucking news, I know," he replies. "I want to do some scans to check on the wrist joint of yours. I think there might be an actual injury to the wrist, in which case we can do something. If there's no injury then I'm afraid there's nothing we can do."
I can't believe it - for the first time in my life, I'm actually hoping I have an injury.
"Not even for the pain?" I ask weakly.
"Not even for the pain. And you have to make some changes now - no contact sports. No more yoga. You need to start weight training to strengthen your muscles enough to handle your joints. I'd also recommend pilates and potentially start some physiotherapy. There's no cure for this, I'm afraid. This is one of those conditions for life."
And that's where I am. I apparently am not a flexible bendy-yoga girl, it's just my joints are fucked up. I've done more research and it's bang on - I'm always covered with bruises and always have been. I can pop all kinds of joints out of place. I can put my leg behind my head (but would rather not, as it seems to make me pass gas like nothing else). And now I'm staring down arthritis and a lifetime of pain (according to the info I can find) as when the joints start to really degrade there's no treatment for the condition or the pain. And the pain is apparently hideous. I guess the upside is I can now start a conversation with "You wanna' see me pop my hand out of its socket? It's pretty gross." and ending it with "I hung up my Championship Handjob Belt. I'm retired."
It's not the end of the world, and in some ways it's a bit of a relief to have a name for something. I'm no longer just a useless fucking klutz. We're going to do more research and find out what this means in terms of running, in terms of future, in terms of injury. I'm also conscious that Nick and Nora are still in the hyper-bendy baby stage that all new babies are in, but at some point I'll be watching them to see if they have it, too. But what it all boils down to is that I'm going to have to be a lot more careful with myself. The research I've been doing all points to one thing: pain. Huge, scary, immense fucking amounts of pain. And personally, I'm not that fond of pain, I think I should do all I can to give that one a miss.
No shots for me yesterday.
In hindsight, I think I would have preferred the shots.
1
Oh, sweetie. I'm so sorry to hear this.
Posted by: BeachGirl at October 18, 2008 02:30 PM (U+oUO)
2
That really sucks...
Sorry
Posted by: Beth at October 18, 2008 02:39 PM (KELSj)
3
"Pregnancy can be life threatening in this variant" that's something you really don't want to see. I'm just surprised that you came across someone who caught what it was without you needing sixteen weeks of referrals, X rays and the like. Isn't life a bitch?
Posted by: Caroline M at October 18, 2008 02:56 PM (x3QDi)
4
I am truly sorry to hear this. Pain really sucks.
I don't know what it's like in the UK but in the U.S. it can be a challenge to get effective treatment for pain. My wife lives with constant pain - even on a list of meds that would shock you.
Start looking into finding a good pain management Doc.
Posted by: Stephen Macklin at October 18, 2008 03:15 PM (R7LgM)
5
Well, I'm at least pleased to see you blogging about this because your twit put me in a worried tizzy. I'm sorry you've had this diagnosis, but word of advice - don't go crazy with the googling. Like most other health problems I'm sure there are varying degrees of seriousness, and typically you'll only read about the worst cases. No point in scaring yourself silly.
On a related note, that doctor sounds awesome. any doctor that drops the F bomb is A-OK with me. WHYBAML, my wandmonkey, called the people who didn't buy his house "wankers" and "a bunch of bastards", and that was enough for me to fall in love.
Posted by: MsPrufrock at October 18, 2008 03:20 PM (LXMti)
6
I am sorry to hear that. I have always been able to put my hips out of socket, and my fingers used to bend back like that, but no more. I have artiritis in my hips and knees, so maybe that's why. OUCH! I hope the babies don't have it.
Posted by: kenju at October 18, 2008 03:38 PM (MvNh+)
7
young children tend to be flexible in general though, so while you're watching the twins, do bear that in mind. xx
Posted by: Mei at October 18, 2008 04:16 PM (Tv2ya)
8
If there is anyone who can fight her way through anything and help others learn from it, it's you. You're tough, you're resilient and you're strong enough to overcome this obstacle just like you have before. I have nothing but admiration for what you've done in the past and I plan to admire how you handle this new situation.
My thoughts and prayers are with you as always.
Posted by: Vicki at October 18, 2008 04:57 PM (gROjS)
9
I am so sorry to hear this. No one wants to have a doctor say "there really isn't much we can do." WHAT?!
Do you think this should have been caught earlier in your life? Do you feel some of your past doctors were remiss?
Posted by: Judi at October 18, 2008 04:59 PM (1Y+4Z)
10
Oh helen, this is just bollocks, I'm so sorry. Dunno what to say except it sucks, and I know you will get through it, and I will hope that nick and nora have escaped it.
Posted by: thalia at October 18, 2008 06:43 PM (kxMVd)
11
Shit. I'm so sorry, Helen. Not what you want to hear on a Friday. Any Friday. Fingers crossed (but not bent) that you are in for the very mildest progression possible of this bendy/sneeze syndrome. And I can see why you might be worried - but nevertheless, that is such a fabulously cute photo of Nora.
Hugely disappointed to hear that putting your leg behind your head results in gas-passing. I have always aspired to be that flexible, and now I discover that what (I thought) would make me extremely interesting in bed will merely put me at risk of getting hurled out of it in disgust. I also discover that bendiness is Not Always Good.
Posted by: Hairy Farmer Family at October 18, 2008 08:15 PM (P4Fom)
12
Wow - as someone who always thought I was double-jointed and has a child who has unusually bendy joints and constantly pops his fingers and whose elbow popped out of socket too easily when he was younger, I'm suddenly rethinking things and intend to make a doctor's appointment to have him checked as soon as we have insurance again. Holy moley. I'm sorry for your diagnosis, and thank you from the bottom of my heart for sharing the information. Some of those pictures look all too familiar. Yikes. And hugs your way. I hope you are granted a reprieve from pain in some miraculous way.
Posted by: Lisa at October 18, 2008 08:40 PM (hkgEp)
13
What if you get a second opinion? Can you do that? This guy may be wrong - lots of people are double jointed. Also - if it turns out he is right, what about trying various herbal/alternative remedies like accupuncture?
Posted by: suze at October 19, 2008 03:16 AM (GDXRT)
14
Acupuncture worked wonders for my pain post-car accident. It's worth a try.
My heart goes out to you, my dear. I'll keep you in my thoughts. As always.
Posted by: Lauren at October 19, 2008 05:48 AM (Pt1kf)
15
Crap. That is not the diagnosis anyone would want to hear. I am so sorry you had to. And while I am positive that your strength and resiliency will help you through any trying times that may come your way because of this, I sure do wish you won't have to use them. If only I had a magic wand to wish it all away for you. (good Lord I'd wear that wand out with all of the things I'd make better for us!)
Hugs, Helen.
Posted by: Stacie at October 19, 2008 06:17 AM (p6L8W)
16
Gosh. This is no fun at all. You have me a bit worried too - I have always been hyper mobile with clicky joints and easy to bruise. I thought it was just one of those things. Maybe not. Was your doc an ortho or someother specialty? Really rotten news any day of the week though even if accompanied by appropriate expletives. I'm sorry.
Posted by: Betty M at October 19, 2008 07:14 AM (6jiFj)
17
Helen, Did they discuss Vascular Ehlers Danlos? Many EDSers are initially diagnosesed with hpermobility EDS and then discover they have Vascular type, which is much more serious. There is a genetic test, for which I am awaiting my results. Please consider joining the National EDS Foundation and when your life allows attending attending the conference held every 2 years. EDS has been in my family for at least 4 generations and I would be happy to answer any questions that I can. Email me at kregis@comcast.net. My kids are also hyperflexible, but we have known since an early are and have taken preventive measures so that they won't be as impacted by pain and disability as they may otherwise be as they age. Take care.
Posted by: Melissia at October 19, 2008 01:36 PM (IBnue)
18
After I reread your post I realized something. The pain can be controlled with a wonderful invention called Lidoderm patches. They are prescription topical patches that allow topical lidocaine to be absorbed directly into the skin over 12 hours and then work for 24. They work like a charm, are very unattractive and have to be hidden from the dog and children because allot of lidocaine is still left in the patch after it is taken off (I have left mine on for longer than 12 hours without detrimental results). Also a good pain control specialist is an important part of any EDSers medical team.
Posted by: Melissia at October 19, 2008 01:48 PM (IBnue)
19
ugh, ya not something you want to find out any day. And really not on a Friday!
I have always been told that I am hyper mobile. I have had back problems since my twenties and the physical therapist's told me that it may seem nice to be able to bend my leg behind my head but, it really isn't lol. I haven't been able to pop my joints out, thankfully, but two of my three children have. One it was the elbow. To the point I thought the DR's where going to start thinking child abuse. He seems to have "outgrown" it as the DR's told me he might. It hasn't happened in a few years. Though he is mindful of it. My daughters is her knees, and they still do.
I just had a back fusion done (best thing ever to have done if you have prolapsed disc's).Which I have been told is not uncommon to happen to a person that is H M. We also have a rare skin condition (can't remember the name at the moment.and its the same two of three children that have it also) which is not uncommon again, and I have a thyroid problem also, that I still need to address as I am starting to have funny heart things going on. So guess its time lol.
And there are a couple of other things too. I just never realized that they could all be related.and or uncommon to have one if you have the other type thing.Did that make sence? lol.
I have to say, I am ever so glad that I can not pop my joints out. That would freak me right out! I freak when it happens to my kids.We go to the DR's every time it has happened. One showed me how to pop my son's elbow back in so I wouldn't have to come in every time. NOT. No way. What a wimp I am. Ok, enough babbling.
I hope your wrist is ok and that there is something that they can do for the pain. It is not fun to be in chronic pain. I know, been there done that.
Will be thinking of you and waiting to hear what they have to say.
Posted by: Justme at October 19, 2008 01:56 PM (H7HmL)
20
I have come here several times to read and every time I do, Babylove does something else that causes a big mess and I have to fix it.
I have no words of wisdom - just love and hope. Never resign yourself to a condition, just fight. And that, I know, you can do.
If there's anything you can think of that I can do to help, just say the word, babe. And hang in there. Life is what happens when we've made other plans, eh?
Love, love, love -
Posted by: Margi at October 19, 2008 06:42 PM (Ch9ak)
Posted by: Margi at October 19, 2008 09:07 PM (Ch9ak)
22
Uh...type II which in that chart on wikipedia says you shouldn't get pregnant??? Wow.
That seriously sucks.
Posted by: Tracy at October 19, 2008 11:13 PM (eiiGE)
23
Wow. Bad news is bad news even if from a cool doctor who curses. I am so sorry you got such suck ass diagnosing. I'd say a pain doc would be a good option. Hang in there.
Posted by: sophie at October 19, 2008 11:44 PM (XxDnO)
24
AGH! What an awful shock. Goodluck finding some pain relief that works - oh and sounds like Melissia is going to be a God send on this topic! Don't you love the networks blogging creates.
Posted by: Flikka at October 20, 2008 05:19 AM (o19Kc)
25
Well, that just really, really bites. And I have no other, less blunt words to describe it. More vulgar ones, probably, could be named, but I'm sure you've thought of them all.
I have a handful of random and obnoxious health problems, all of which have, at some point, been undiagnosed or rediagnosed by another doctor. So I definitely recommend a second opinion, just as a precaution. But the bottom line is that it sucks, and yeah, letting those joints just take the day off is pretty impossible-sounding, so whatever you can do to take care of yourself in your spare time, do it, and don't feel bad if you have to be "selfish" about some me-time. The suggestions for trying alternative remedies - acupuncture, massage, herbal - are all something I second and third. And perhaps looking into some experimental studies, too.
I really am sorry you have to deal with this, and would totally offer up some of my own collagen, if that were transplantable, which I vaguely suspect it is not. But the sentiment remains.
Posted by: D at October 20, 2008 05:37 AM (bg2kM)
26
OMG!
I am hyper-mobile. Have had knee surgeries, back-pain, been tested for endocarditis and am good at yoga!
Just thought I was flexible and a good date!
My son is also very bendy.
Never thought for a second it could be anything in particular. Thank you for alerting me, now I am off to google and worry more.
(Does it have anything to do with repeated miscarriage, if so, then I can rest knowing it IS my fault)
Posted by: E at October 20, 2008 09:14 AM (/jsNo)
27
That surely sucks, Helen.
So sorry...
L
Posted by: Lily at October 20, 2008 10:28 AM (iaCQg)
28
I noticed in your links that an associated condition of EDS is Irritable Bowel Syndrome. Well, that explains THAT then.
Posted by: B. Durbin at October 20, 2008 12:36 PM (9NgqI)
29
That sucks. I've heard that glucosamine and chondroitin can be helpful with joint pain.
http://arthritis.webmd.com/tc/glucosamine-and-chondroitin-topic-overview
Posted by: Meg at October 20, 2008 01:07 PM (1OdWO)
30
I'm hoping the wrist injury isn't related to the fact that
the doctor popped your hand out of joint!
Know what my #1 pain reliever is? Weed. I don't know if it's that the pain is subsiding or that my tolerance for giving-a-shit drops out. But in any case, it's definitely a favourite remedy of mine. But um, keep it from the kids or you'll be the
best PSA ever. (Though my friend Jaime unknowingly rolled her dad's joints as a child. Apparently, little fingers make for tighter doobs.)
But WORD on the pilates. You'll be in traction the second day after your first session. But you'll also see a difference after about 3 sessions.
Posted by: Ms. Pants at October 20, 2008 03:32 PM (+p4Zf)
31
Oh Helen. I am so sorry to hear this.
Different malady altogether, but my sister suffers from fibromyalgia. She's in constant pain, but refuses to give in to it. She goes to Curves a few times a week to exercise and is much better off because of it. Unfortunately, the leading pain medications do not appear to work for her. I keep up with the latest research in the hopes of finding something new. New stuff comes down the pike every day.
Whatever happens, don't despair. You've got a family to take care. My bet is sooner, rather than later, there will be some treatment for this malady.
I'd offer help, but I don't think that I've got anything other than my well wishes and prayers.
Posted by: physics geek at October 20, 2008 04:17 PM (MT22W)
32
That's freakin' insane! Who even knew this kind of stuff existed?
On the other hand, your doctor sounds awesome!
Posted by: kellyangelo at October 20, 2008 08:57 PM (l6kUb)
33
I'm surprised and disappointed that the typical pain therapies for arthritis/tendinitis/carpal tunnel can't work for you. Really sorry to hear this news, Helen.
AllTheBest,
Rob
Posted by: Rob at October 20, 2008 09:20 PM (IIIq+)
34
Whoa. So many memories come flooding in...
I remember living in Taiwan, I was 12, and walking to the bus, and there was a young man, who when he walked, his knees bent backward too. I wondered often if I didn't really see that, but now wonder if he had this hypermobility as well as this other disorder.
I remember as a child, we'd all play with our fingers to see who get get them to bend at that top joint the most. There was a kid in my class who could do all those tricks you see in that Wikipedia article you linked. Played with his thumb, "Oh yeah! You think you're cool, look what I can do with my thumb!" and we'd all be like, "Ewww! You win!" Holy crap. I wonder if he knows... he could do ALL of that.
Posted by: Bou at October 21, 2008 02:32 AM (PyX9Z)
35
Didja know I got a popup on this? Asking me if I wanted a survey about Nielsen ratings?
Anyway...I also have a medical condition they can't do anything for. It isn't physically painful (well, sometimes it hurts a lot but...it's not terminal so...whatever..) but it does make me (well *made* me) want to kill myself from the non-stop neverending constant noise in my head.
Sucks when the docs say, "hey, you know what? Sucks to be you!"
I get this, I get what you are feeling and...I'm sorry.
Good news, you will deal with this.
Oh yes. You will.
The mind is an amazing little organ. Muscle. Well, whatever it is...it's pretty freakin' (I would say the other, but...anyway...) freakin' amazing tool.
{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}
I do know what you are going through.
And I also know you are going to get through this.
Posted by: Amber at October 21, 2008 03:29 AM (zQE5D)
36
Thanks for posting this. It sent red flags that led me to contact my sister, who has written back to me today: her kid can do all the hypermobility things on the wikipedia page. I'm glad my sis has the chance to ask her doctor about this now. She'd never have known otherwise.
Posted by: isabel at October 21, 2008 04:17 AM (0H+t6)
37
I'm so sorry to hear this. Can't imagine what you are going through to deal. Here's keeping good thoughts that the babies won't have it as well, and that something can eventually be done to help you.
Posted by: sue at October 22, 2008 08:32 PM (0K+AI)
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