| Shooting pain again!! |
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02/01/2011 00:17
susanelizabeth 
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02/01/2011 00:17
susanelizabeth
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Re: Shooting pain again!!
Thanks for responding. Today I noticed differences in my hands. So it occurs to me that the active DD is what is painful, its the "activity". Scares me as I really want to get the RT before I progress too far and can't. It would appear that it is a race right now. I pray that it just subsides for a few weeks after last night. My right foot has been hurting too and I am fearful of what that means. This thing is being so damn aggressive.
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02/01/2011 08:02
LubaM. 
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02/01/2011 08:02
LubaM.
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Re: Shooting pain again!!
susanelizabeth:
Thanks for responding. Today I noticed differences in my hands. So it occurs to me that the active DD is what is painful, its the "activity". Scares me as I really want to get the RT before I progress too far and can't. It would appear that it is a race right now. I pray that it just subsides for a few weeks after last night. My right foot has been hurting too and I am fearful of what that means. This thing is being so damn aggressive.
Susan,
Sorry to hear about all your troubles and dealing with pain is certainly not easy. Your DD does seem to be aggressive and the best decision you could have made is going for the RT while it is still at the beginning stages. Many doctors don't know enough about DD and will advise to wait for contractures and then have surgery.
I had four surgeons tell me to wait and do surgery, which is the reason why I wound up with a "messed up" small finger in my right hand, needing NA for that finger.
For my left hand (nodules, dimples and itching) and left foot (nodules) I decided to go with RT while the disease was in the early stages, and have been able to avoid contractures, so far. I had RT with Dr. Tripuraneni in LaJolla and was very happy with the doctor, his staff and the treatment. It has been over 14 months since my RT and the progression has stopped in the radiated areas.
Hope you are able to have RT in March as you previously posted.
Good luck and keep us posted.
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02/01/2011 20:19
susanelizabeth
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02/01/2011 20:19
susanelizabeth
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Re: Shooting pain again!!
LubaM,
Thank you so much for answering my post.
I have had blunt pain in both feet, almost like they have gotten too cold and that numb but pain like feeling when they start to thaw. Thats the best way I can describe it. I have not identified any nodules or anything but I fear that it is the disease.
Somewhere on here I saw somebody had a place to rent near LaJolla for $50 a night. I need to find that and ask about it. We have friends in Irvine but with the price of gas, we might as well find a close place to stay.
I will keep you posted, and thanks again.
Susan
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02/11/2011 15:21
debrr 
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02/11/2011 15:21
debrr
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Re: Shooting pain again!!
Hi Susan!
I understand the sensations you are talking about...not pleasant. I usually don't cry, but it has made me very close to tears. I am so sorry for your pain, but do understand.
When are you going to La Jolla? I am going back March 14th. I am the one that posted that I was able to get a place to stay in San Diego for $52 a night because I am retired military...LubaM. suggested to me to make it enjoyable and I would repeat his advise!
Take care! Debbie
susanelizabeth:
LubaM,
Thank you so much for answering my post.
I have had blunt pain in both feet, almost like they have gotten too cold and that numb but pain like feeling when they start to thaw. Thats the best way I can describe it. I have not identified any nodules or anything but I fear that it is the disease.
Somewhere on here I saw somebody had a place to rent near LaJolla for $50 a night. I need to find that and ask about it. We have friends in Irvine but with the price of gas, we might as well find a close place to stay.
I will keep you posted, and thanks again.
Susan
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02/11/2011 19:48
Soonerfan 
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02/11/2011 19:48
Soonerfan
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Re: Shooting pain again!!
debrr:
Soonerfan,
Don't be a crash dummy!!! Be a success story!!! Where did you get RT done? Are you finished?
Quote:
Debrr, I have not had a lot of trouble with shooting pain, just occasionally, my issue has been with cramps. I had them before, but seems to have increased since I started RT. I have finished my RT on hands and feet and already notice an improvement. I work with 3 people, one brother and sister and another man, all have it in their hands and feet. I am being the crash test dummy for all. They are waiting to see how it goes with me, then they are going to have RT done.
debrr - I live near Oklahoma City, so I went to OU. Could not afford Germany ever so I was thrilled to find it so close to home. All done now about 2 weeks ago. So far So good. The nodules in my feet are shrinking slowly and I have had a few cramps, those have just about stopped. My hands, I had a large nodule at the base of my forefinger where the web starts..yea! just about gone also. The larger nodules on my feet and hands seem to be getting softer, I would settle for stopping the progression.
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03/07/2011 17:12
Sentinella
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03/07/2011 17:12
Sentinella
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Re: Shooting pain again!!
debrr:
Thanks Sentinella! All empathy accepted!
Very interesting your twin has no signs....can you think of any reason why this could be?
Sentinella:
Sorry to hear about your shooting pain.
I actually know quite a few people that have this disease. My uncle (1/2 Swedish) had surgery on his hand about a year ago. One of my friends (from Norway) has had surgery on both of his hands at least twice and has HUGE nodules in both of his feet. My brother, a year older than me, has it in both of his hands. He didn't know what it was until I was diagnosed. My two other brothers including my twin do not have any signs of the disease, lucky them.
My twin and I are Fraternal Twins, not Identical. We are genetically just brothers. We are also only 46, so in time he [b]may come down with it as well. My uncle started showing signs at age 60, I started showing signs about 42. So I guess it is just the luck of the draw.
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03/21/2011 08:42
Cyclist
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03/21/2011 08:42
Cyclist
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Re: Shooting pain again!!
Hi Debbie
I've been wondering how you are? I've had my first treatment cycle and had to smile when I thought about your story about lining up for sprinkle cupcakes while I did my version of overdoing things .
Now we don't know if we're suffering more effects because we've both got aggressive ML or whether we just over-did things!
My feet have been a bit more to manage than usual, worst at night as before, but more tender during the day as well. I've posted the details in a new thread call News from Germany. In a nutshell, my feet feel tight, hot, sore pretty much all over and extra lumpy, so it's affecting me when I walk. My skin doesn't appear affected. but I've been looking after it with 20 % urea creme.
It's good to get support from fellow sufferers and also to let others know that what they are experiencing is normal. I had a big day today and my feet were aching quite badly so I had to jump online to find out if it is normal or if I should consider getting some medical advice. Now, after reading posts from you and some others, I think it's just that I'm tired and so are my feet. Thank you for sharing your story!
(Edited to let others considering treatment not to be scared by this ibuprofen is enough to help the aching. My feet recover overnight and feel much better in the morning).
I hope your second treatment cycle is better and you can hold back on doing too much this time! I know I will be more careful next time 
All the best
Di
debrr:
Hi Di!
Thanks so much for your post! Sometimes it just helps to know someone empathizes!!
I am home now. Haven't had any more shooting pains since getting home. Feet ache though, and interestingly it seems that standing barefoot, and on a flat surface is more uncomfortable than before (i.e. shower) Can't quite figure that out yet. I was thinking perhaps since it seemed so hopeless before....I managed to block out most pain and now I am much more alert to it!
Do yourself a BIG favor and don't stand in line for cupcakes like I did for the first 3 days of RT!! 
Please keep us posted when you are in Germany! When are you going?
Debbie
Cyclist:
Hi Debbie
I'm so sorry you have to be on your own with those shooting pains 
I'll be on my own in Germany when I have RT next month, so I appreciate your sentiments about having in-person support!
A generous thought, thanks
Di
PS You made me smile when I read you lined up for cupcakes after RT 
Edited 03/21/11 10:48
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03/21/2011 15:54
marjorieb 
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03/21/2011 15:54
marjorieb
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Re: Shooting pain again!!
susanelizabeth:
I don't know about anybody else but I have seen the worst pain set off by cold. Last month while cleaning strawberries in a sink of cold water, I almost could not even finish the task of washing just a few pints. The pain was excruciating. Now I am in Utah and of course it is cold, the steering wheels are cold, holding a cold drink, and things like this I am learning to avoid. I have tried not to let this diseases mess with my daily activities but now I wonder what else sets it off???? Tonight I am close to tears and I don't cry. I would appreciate hearing how others have dealt with pain and this disease and what they/you have noticed makes it worse??????better???
susanelizabeth,
Cold definitely is the worst for me. I hate when I have to get food from the freezer, or refrigerator.
I live in TX, and the weather has warmed-up. My pain has decreased significantly. I find that warmth and keeping my hands moving is best. I think night pain might be related to immobility. Also, gripping things tightly, i.e.: knives, steering wheel, tools, etc. I have considered getting a padded cover for my steering wheel. Jar lids can be terrible. I have an under the cabinet mounted jar opener. It is a hand saver. I use a vapor cleaner for my floors/etc. Since I couldn't pad the handle, I purchased padded gloves. That is a very big help.
Being an occupational therapist helps me figure ways around these tasks (I used to teach everyone else how to). I'm happy to offer suggestions to anyone for specific tasks that are painful.
I'm thinking about purchasing a home parrafin bath. I know it will feel good, but won't cure anything.
There are wraps for your cold drinks. You can velcro them together, and they can be washed. That, or double walled acrylic tumblers.
Different gloves for different jobs is a good plan.
Hope this helps!
Beth
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03/21/2011 16:31
Larry
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03/21/2011 16:31
Larry
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Re: Shooting pain again!! Self massage ...
May be that helps for you ... massage for Ledderhose Foot
Today I posted in another thread this hint which might be helpful for you ...
Prof. Seegenschmiedt suggested to me for better metabolism and perfusion to use a special ball for my feet to massage my self wherever it appears painful and tender ...
In Germany its quite cheap and costs about 5 Euro maximum. They come in differen sizes ... and colours !
I am using the RED one with good success ... All the best to you, Larry
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