Hand deformative

I am a very creative person. I like to decorate cakes, to cook, to quilt, to scrapbook, to paint and to draw. All these activities are stress relievers for me. The only draw back are my hands. I have had pins and rods put in my thumbs to straighten them and to keep the joint from slipping. I have had my tendons on my knuckles on each hand tacked in place because they fell off causing my fingers to deviate off the joint. I have had 2 surgeries on each hand to correct this issue. The last time the surgeon even moved tendons in my arm above my wrist to see if that would help prolong the results. He told me that my hands would probably need the surgery every 5 years because with my Lupus, my ligaments will continue to get loose and fall off the knuckles again. I can’t use my pinkies at all especially on my right hand. They are drawn up and I cannot straighten them. The one on my right hand, I can’t hardly move at all. It locks down against my hand. I continue to use my hands doing the things I like and I will almost do anything to keep them fuctional. I am going to see a different hand surgeon at Emory University. She has been in the newspaper for performing a hand transplant on a college student who lost her hand from illness at the age 10. My mom is a Nurse Practioner who referred me to her. Of course I am not going to get a hand transplant, I just want to know what can be done to help my hands become functional. Each day they get a little worse. My husband or my 16 year old son are constantly opening things for me even my bottle water and cutting my food if it needs to be
cut. I hate having to rely on them. I have trouble picking up a full glass of drink, holding a plate in one hand (my wrist starts bending down causing everything on my plate to slide into the floor. I have to ask people at work to pour me tea from the pitcher because I cannot hold it with my hand without my wrist collapsing. I am anxious to hear what this new hand surgeon thinks. I am also a little scared because I really do not have the time to deal witjh it. School starts back for us teachers the last week in July. The children come August 1st. Please keep me in your prayers as I go today to the hand surgeon and that she will be able to help me. Does anyone else have this issue with the hands? 

Kim...

I have notice that my hands lock up as well....though nothing like your talking about. So sorry to hear that your having some many issues. I have lumps in my hands, feet, spine, and neck. My once long slender hands are now knotted. These lumps are visible to the naked eye and show up on x-rays. I am told it it rhumatoid artritis and it will only progress. I too have to depend on others to open and carry things for me at times. It is to the point where I am about ready to buy software that types what I say, rather than me typing.

This may be a dumb question but has your Doctor every suggested phsyical threapy for strengthening and range of motion? Also, why would your Surgeon not shorten your tendion or replace them?

I truly hope that this new Doctor has some good news for you! Please keep me posted and I will keep you in my thoughts.

Be Blessed...

Melissa

Melissa,
I really like the doctor. She went into being a hand surgeon in order to help people with Lupus and Rhematoid Artheritis as well as hand transplants. She said my hands will continue to get worse but she could help me make them functional. She is going to have braces made for both hands to wear at night so they might not get any worse. She told me about a surgery that she could perform to help me use my pinky finger again. It is a simple surgery. Then we would go from there. She wants to do the least invasive procedures first to see how much mobility I get.

M. D. Callender said:

Kim…

I have notice that my hands lock up as well…though nothing like your talking about. So sorry to hear that your having some many issues. I have lumps in my hands, feet, spine, and neck. My once long slender hands are now knotted. These lumps are visible to the naked eye and show up on x-rays. I am told it it rhumatoid artritis and it will only progress. I too have to depend on others to open and carry things for me at times. It is to the point where I am about ready to buy software that types what I say, rather than me typing.

This may be a dumb question but has your Doctor every suggested phsyical threapy for strengthening and range of motion? Also, why would your Surgeon not shorten your tendion or replace them?

I truly hope that this new Doctor has some good news for you! Please keep me posted and I will keep you in my thoughts.

Be Blessed…

Melissa

Hi Kim, My hands are becoming more and more of a problem over the tears, I lke Melissa C. have the lumps & bumps too, they hurt are shily and swollen esp. int he mornings…Have u been checked for Rheumatoid arthritis? I hve thew “typical nodules” as seen in RA, but tested negative,?? Who Knows??? I hope u feel better so soon, I hate that you are suffering so much from them and I pray the surgeon comforts you with compassion & care. & answers and teatment too! Keep me updated! …Be Well My Friend! Suzie :0)

Hi Kim, I am so sorry about your hands. I, too, am very artistic and one of my biggest fears is losing the use of my hands. They are also my livelihood, as I do medical transcription for a living. This weekend I noticed for the first time that my hands are constantly aching. I have had issues with swelling and achiness before but usually I take Motrin and/or Lortab and it kicks it. This weekend, and today, they still hurt. I also noticed I kept dropping things too. I broke two glasses this weekend and spilled stuff, as well. I hope it is just a coincidence and is nothing more.

I will keep you in my prayers.

Mel :)

Kim

Hello my name is Kristi and I Have very similar manifestations of lupus in my hands.Unfortunately my luck with hand orthopaedics has not been successful at all.Instead of saying they have some options,they turn me away with only one possibility.Which is not an option for Me! The answer is to fuse the bones in my wrist.Now in 2009 I did get lucky to find a surgeon who would attempt it. But once he got in he found ny bones and ligaments were too deteriorated and unfortunately had to fuse my rights wrist.Now this was gonna be the first of a series of surgeries,but because of health issues others were never done.Then his office stopped accepting my insurance.He only got to work on my right hand and didn’t get to do the knuckle replacements he was going to do. I have serverly deformed hands.I can not grab thingd or open things either and I too need help. My fingers are permanently pretty much closed and my pinkies stick out at a 90 degree angle.All this is so devastating because I too am an artistic person.Although I may never play my violin again I continue to make jewelry and do what I still can.

I have never met anyone with the same hand issues from lupus as me. So my question is to you if you don’t mind where are you located and what is the name of the New Dr you saw.I would definitely love to look her up and see if she might have any options for me! Thank you so much and good luck!

I live in Locust Grove Georgis. She is a hand transplant surgeon at Emory Medical Center. I will have to get you her name. Email me at ■■■■■■■■■■■■■■■■■■ and will send you my phone #

Kristi said:

Kim
Hello my name is Kristi and I Have very similar manifestations of lupus in my hands.Unfortunately my luck with hand orthopaedics has not been successful at all.Instead of saying they have some options,they turn me away with only one possibility.Which is not an option for Me! The answer is to fuse the bones in my wrist.Now in 2009 I did get lucky to find a surgeon who would attempt it. But once he got in he found ny bones and ligaments were too deteriorated and unfortunately had to fuse my rights wrist.Now this was gonna be the first of a series of surgeries,but because of health issues others were never done.Then his office stopped accepting my insurance.He only got to work on my right hand and didn’t get to do the knuckle replacements he was going to do. I have serverly deformed hands.I can not grab thingd or open things either and I too need help. My fingers are permanently pretty much closed and my pinkies stick out at a 90 degree angle.All this is so devastating because I too am an artistic person.Although I may never play my violin again I continue to make jewelry and do what I still can.

I have never met anyone with the same hand issues from lupus as me. So my question is to you if you don’t mind where are you located and what is the name of the New Dr you saw.I would definitely love to look her up and see if she might have any options for me! Thank you so much and good luck!

I live in Locust Grove Georgis. She is a hand transplant surgeon at Emory Medical Center. I will have to get you her name. Email me at and will send you my phone #

Kristi said:

Kim
Hello my name is Kristi and I Have very similar manifestations of lupus in my hands.Unfortunately my luck with hand orthopaedics has not been successful at all.Instead of saying they have some options,they turn me away with only one possibility.Which is not an option for Me! The answer is to fuse the bones in my wrist.Now in 2009 I did get lucky to find a surgeon who would attempt it. But once he got in he found ny bones and ligaments were too deteriorated and unfortunately had to fuse my rights wrist.Now this was gonna be the first of a series of surgeries,but because of health issues others were never done.Then his office stopped accepting my insurance.He only got to work on my right hand and didn't get to do the knuckle replacements he was going to do. I have serverly deformed hands.I can not grab thingd or open things either and I too need help. My fingers are permanently pretty much closed and my pinkies stick out at a 90 degree angle.All this is so devastating because I too am an artistic person.Although I may never play my violin again I continue to make jewelry and do what I still can.
I have never met anyone with the same hand issues from lupus as me. So my question is to you if you don't mind where are you located and what is the name of the New Dr you saw.I would definitely love to look her up and see if she might have any options for me! Thank you so much and good luck!

Hi Kim,

I was just wondering if you received my email lat week?



Kim said:

I live in Locust Grove Georgis. She is a hand transplant surgeon at Emory Medical Center. I will have to get you her name. Email me at and will send you my phone #

Kristi said:
Kim
Hello my name is Kristi and I Have very similar manifestations of lupus in my hands.Unfortunately my luck with hand orthopaedics has not been successful at all.Instead of saying they have some options,they turn me away with only one possibility.Which is not an option for Me! The answer is to fuse the bones in my wrist.Now in 2009 I did get lucky to find a surgeon who would attempt it. But once he got in he found ny bones and ligaments were too deteriorated and unfortunately had to fuse my rights wrist.Now this was gonna be the first of a series of surgeries,but because of health issues others were never done.Then his office stopped accepting my insurance.He only got to work on my right hand and didn't get to do the knuckle replacements he was going to do. I have serverly deformed hands.I can not grab thingd or open things either and I too need help. My fingers are permanently pretty much closed and my pinkies stick out at a 90 degree angle.All this is so devastating because I too am an artistic person.Although I may never play my violin again I continue to make jewelry and do what I still can.
I have never met anyone with the same hand issues from lupus as me. So my question is to you if you don't mind where are you located and what is the name of the New Dr you saw.I would definitely love to look her up and see if she might have any options for me! Thank you so much and good luck!