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madelungs deformity

las03
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would like to talk with people that also have this so I can talk to in helping me cope with this problem and new problems that are coming about because of this disorder. Thanks so much.
Lori

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Surgery Pain

8 replies

mamabecky75

Hi las03 I also have madelungs although I'm not in as much pain as I believe you are. When I am in pain their are things I do that help me. My condition may not be as severe but If you would like to talk I'm here.
You may also be able to inform me of what I could possibly be instore for

las03

I have had one surgery on my left wrist back in 2000. It helped up until about 5-6 years ago. Now I have been going in for injections in both wrist every 3-4 mo to help with pain. Now my problem is I get alot of pain in my elbows and I am slowly losing strength in my hands and arms. I have even tried using 3lb weights but that makes it hurt. Sometimes I have found that ice helps alittle, but does not last long. I tried heat and that does not work at all. Let me know what helps for you. The only thing that has gotton worse over the years is the added pain and loss of strenth in arms and elbows (outside of wrist pain). Keep in touch. Where do you live and how old are you? Thanks
Lori

mamabecky75

For me, I found that when I am in pain, I use an immobilizing brace at night. I found it in a drug store. It's cushioned and does not alow my wrist to turn or bend at all, by morning it feels much better. I've tried heat but I'm not sure it's done anything I like to think it helps relax the muscles before I use the imobilizing braces. I don't use braces during the day because they seem to do more harm then good for me unless I'm already in pain. I also try to take much care not to over do the movements that I know will end up putting me in pain. For example driving, I now drive with both hands. I try to do the hand over hand thing when I'm turning corners because using one hand twists your wrist around. I always use a drill instead of a screw driver. I have an electric jar opener, an electric can opener, things like that to help cut down on over use. I also try not to type to much. I also have noticed a loss of strengh in my arms and weired pains in my elbows. Especially if I'm carring somthing heavy (when I shouldn't) I can't straighten my arm back out it's like the bones in my elbow get caught on each other and I have to bend my arm back up to rest them and try again. I've never tried weights but I've been thinking about it though I've noticed my arms and wrists have been weak my whole life. Even before I was diagnosed, which was when I was 23 I am now 34.
I did at 21 have a doctor try to tell me that my ulna was upside down but that was without an x-ray.
I'm originally from Ontario, Canada but I lived in Las Vegas fo 6 yrs now I am in Georgia. I have not yet seen a Docter in the US. I would like to talk to a Dr with more experience in the area, because mine didn't do much for me only to tell me that they would fuse my wrist together by the time I was 50 (Gee Thanks) Everything else I've learned has been from my own researh and experience. Thank-you
Cynthia
(ok I'm feeling a little tingling in my elbow now so I this my be my typing limit)

las03

I too have tried the wrist splints at night that the doctor gave me. But they seem to make my wrist sore and stiff by morning. I also started using two hands in turning while driving as well. As far as the can opener, I should maybe invest in one. That might help me out. Becareful with the weights, I tried them to help with strength but it hurts. I use 3lb weights. Start out real slow. I can only use them in certain ways cause my arms and wrist won't allow certain movements without alot of pain, you will understand what I mean. I have only been doing that for about 2 wks now and have not noticed any improvemnet in strength yet. It was real hard for me to find an orthopedic that specializes in this deformity. My doctor gives me shots for pain every 3-4 mo. I am a secretary at work and it gets harder all the time. I am going in for gentetic testing in Oct. They say most people who have this deformity have some form of darwfism. I only stand 4' 11". My fathers side are all 5ft and under. I was curious as to how tall you are. Ice does help with pain, have you tried that? also Ibuprophen. I usually take 600 to 800mg twice a day. (which is probably bad). Take care and keep in touch.

mamabecky75

My wrist are pretty stiff in the morning after using splints at night but as they losen up they feel better. If I need pain medication I usually take Ibuprofin. I have read in quite a few places that Madelungs is usually found in Darwfism, but I am 5'10 and all my younger siblings are over 6 feet but my older sister is about 5,6 and so is my grandma. Ok I'm on the phone with my sister and she's tellin me that our grandpa had a drawf in his family. I'm going to have to look into that. My grandpa himself was over 6 ft. I know that's where my siblings get their hieght and I actually do not know my biological father. I haven't tried ice I'll have to give it a try next time. Take care I'm going to call my mom and ask her about my grandpa I'll get back to you.

las03

I made an appt for the end of Sept for shots again. I think it has been about 6mo or so since my last one. That is pretty good for me. But the last few weeks have also been pretty bad. I went back to try the wrist splints at night again and your right they do seem to loosen up during the day. They were only stiff for part of the morning. One day was real bad at work, I even had trouble putting a stack of papers up on a shelf. I almost felt pathetic. lol Typing sometimes gets hard at work, depending on how busy we are. Sometimes my fingers will even hurt to where I can feel it in my wrists. I've had those nerve conductive study tests done before on my wrists like they do for carpul tunnel and mine have come back normal. So I guess its just from the bone structure causing pain on themselves and ligaments. Have you ever had shots in your wrists? They are wonderful. They kind of hurt at first, but not real bad, and after about a few days to a week the wrists feel alot better for a few mo. They use some kind of cortizone. The doctors say its safe to use 3 to 4 times a yr. Its the same kind they use for sport players. Well keep in touch. Take care and I'll talk to you soon.

mamabecky75

I've never had shots in my wrist, but then you seem to be in a lot more pain then I. I know when I had an administrative job, that was the point when my pain really started and I first went to the Dr. about my wrist. I only had the job for 3 mths but I quickly learned that it wasn't a job that I could do for life. I was having pain that I had never experienced before. In fact I don't generally blog or type letters or anything and since I have been talking to you I'm noticing a twinge and slight numbness in my right wrist when I type. I had already finished nursing school at that point, so I got a nursing job. I also had a job in retail and that was no good either because stocking the racks with new merchandise was to heavy and repetitious and I was in pain. I did find out that my great great grandpa's sibling had drawf children but that could have come from the spouse's side. My mother insists that my biological father had wrist like mine which now makes me want to look for him. I also have other joint issues and I wonder if they are linked together some how. My right ankle aches sometimes and I can't wear high heals for a min and it aches. A joint appears to be missing in 2 of my toes but that doesn't cause any problems. I have TMJ (temporal mandibular joint) disorder. I can't open my mouth to wide or it will get locked open and ocassionally there is a weird clicking pain on one side when I chew. I recently found out that my neck is too straight. I was experiencing a clicking sound which turned into cracking and then painful cracking when I turn my head. It causes headaches that last the whole day and my neck is usually sore and stiff. I can't find a comfortable pillow to save my life. I actually have more headaches right now them pain my wrists
And it is very fusterating to hear there's nothing I can do but take pain medication for either problem. I do not like to take pills and I'm the type that will wait untill I can't function to take them. Especially when it comes to my wrist because I figure the pain means that something is wrong and if i can't feel the pain then I may be doing something to further aggravate them and cause more damage. But then I'm not working right now so that easier for me to do. Which is probably also another reason why my wrist arn't causing me a whole lot of pain latley. Talk to you soon.

las03

You sound alot like me in some ways. I am currently a secretary. Which is why my wrists hurt so much all the time. (adds to the madelungs deformity) I used to be an emt, but my knees started giving me too many problems and my strength in my hands and wrists, so had to give that up. (which I loved that job). I also have TMJ, and a straightning of the cervical spine, which may explaine alot of my severe headaches and migraines that I get alot. As far as my toes, well, their just short and fat. lol I just do the best I can and will work for as long as I can. I am only 44 so I have a long way to go. Its gonna be a battle. How are you with moving pt's? I work in the x-ray dept as a secretary, but I also help the techs out alot at night and weekends moving pt's (and some can be quite hard). It can be touch on me with my hands. Especially trying to move a pt up higher in a bed when the pt does not move themselves or something or pulling a pt onto the x-ray table from there bed, it hurts the wrists and hands. Didn't know if you had any trouble with that being a nurse or how much you use your hands for that job. Well, my hands need a break now. I will talk to you again soon. Take care
Lori

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