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Old 10-21-2008, 05:41 AM   #1
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Does anyone else suffer from scary weakness with your RSD?

I have RSD in both my feet. It started in the right foot and has spread. It is now in my right foot and up my leg to my knee. In the left foot it has only spread to just above the the left ankle. It is also in both wrists. But for this issue, the wrists are not the problem.

My question is; If you also have it in your limbs, do you ever suffer from weakness in them? There can be times when my legs/feet feel so weak that I am afraid to walk for fear that they might give out and I will fall.

It seems that when I have these relapses, that is when I will have more pain in the legs/feet but the weakness is what scares me the most. Does anyone else have this problem?

I have been diagnosed with RSD since 2005 when I had bunion surgery. And have not been able to go back to my job or any other job since the surgery.
Thanks for any help you can give me!
Take Care,
Chris

 
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Old 10-21-2008, 09:10 PM   #2
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Re: Does anyone else suffer from scary weakness with your RSD?

Hey Chris!

Weakness and/or numbness in the rsd limb is quite common and very "normal". :-D I have it in all 4 limbs,hips,shoulders and a bit in upper and lower back. It started in february of 2003 after I hurt my knee at work. Almost everyone I've known or talked to over the years have talked about this same thing. I still have my days where it seems worse than others and like you, the days it seems worse is when I'm having really bad pain days.

Hugs,

Karen

 
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Old 10-22-2008, 07:19 AM   #3
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Re: Does anyone else suffer from scary weakness with your RSD?

Hi Chris, same goes for me, I usually suffer the weakness in my knees, legs and ankle especially when the weather changes. Also when we expecting alot of rain and also right before that of the month. At times, I suffer the same weakness in my arms but not as much as I do in my legs, knees and ankles. It's just one of those things that go hand and hand with having RSD.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 10-22-2008, 06:42 PM   #4
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Re: Does anyone else suffer from scary weakness with your RSD?

My foot is very weak, along with senstitive and everything else. I can't even lift it up or down anywhere near the amount I can do with my 'normal' foot. Sometimes my hands feel so weak.. I have to have my friends or family open a bottle of water or something for me. I also feel like I'm going to trip all the time if I don't use the cane since it feels like you're going to trip over it when you can't lift it enough.. I've hurt my knee a few times by stumbling and tripping over my foot.

 
Old 10-23-2008, 06:04 AM   #5
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Re: Does anyone else suffer from scary weakness with your RSD?

I can't thank you guys enough for sharing your stories with me. Even though this doesn't change the fact that I have this weakness that scares me, it does help me feel better knowing that it is "normal" for RSD patients.
I feel badly though that other people do have this weakness. As I was reading your stories about your weaknesses I really "got it" and understood where you all are coming from.

Has any of your doctors suggested anything you can do about this weakness? Or is just something that we have to put up? Like I mentioned earlier there are days that I do not feel this weakness. I may still feel some pain, but then again I always feel some type of pain. My doctor always told me that her goal for me was to get my pain level down to a three or a two.

I have not been able to work since November of 2005. And I think that the stress from not being able to work may add to this weakness. Luckily though I have just recently been approved for ssdi so you would think that some of my stress would be less. But this past week has just been terrible for me as far as the weakness and the pain. I keep telling myself that this will subside and I will be able to participate in my life again. I know in my head that this relapse will go away, but in my heart I am so afraid that I won't get better again. That I will always have this weakness and need to use my cane to even get around my house. I am only 48, I will be 49 on November 14th. And there are days like today that I feel 89!

I'm sorry that I am rambling and venting. But this has been just such a bad week for me. My husband has been very supportive as has the rest of my family and friends. But they don't "get it" like you guys do. Is it wrong for me to ask you people to help me a little bit and remind me that I will be Ok? Perhaps that is being too selfish, sorry. You all have your own issues to deal with. You don't need me feeling sorry for myself. I am glad that I have found this message board though. Just reading your questions and your stories help me. And I always seem to learn something when I come on.

Again , I am sorry for inviting you to my "Pity Party". I need to deal with this myself and pray that this relapse ends soon.

Thank you!
Chris

 
Old 10-23-2008, 07:41 AM   #6
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Re: Does anyone else suffer from scary weakness with your RSD?

Hi Chris, I have just learned to live with it and on those bad days I still try to do as much as possible. I might do as much as do on good days but I try real hard to not let it get the best of me. Sometimes my knees get better the more I try to get around. Then there are sometimes I just give in and sit around and do much of nothing like reading, watch the tv or get on the computer. I don't think there's nothing really that the doctors can do to help with the weakness.
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Arthritis

 
Old 10-23-2008, 06:54 PM   #7
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Re: Does anyone else suffer from scary weakness with your RSD?

Today was a little bit better for me. I got some laundry done and I went to church with my Mom. We go every Thursday morning from 10 - 11, as we signed up for the adoration of the sacrament. It's a catholic thing! Ha! Ha!
I did try and do whatever I could possibly do. The steps down to our basement were hard for me to do. But I just took my time just in case my legs would give out on me. This has happened to me before and I ended up falling and the first thing to hit the steps was my right cheek bone. I was home alone at the time. I just sat there for a couple of minutes crying! Ha! When I think about it now, I must of looked and sounded ridiculous.
Emotionally I feel better today as well. And I think this is because of you people. You let me know that you too suffer from weakness in your legs or arms and that not only was this normal for "us", but that there is nothing that can be done about it.
You wouldn't think that that wouldn't make be feel better but it does. Perhaps knowing I am not alone with this and seeing that in writing brought some peace to me.
Again thank you for making me feel better. I hope that I am able to return the favor some day.
Take Care,
Chris

 
Old 10-23-2008, 08:54 PM   #8
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Re: Does anyone else suffer from scary weakness with your RSD?

No one in the world understands like we do! Some of you might want to do what I do. Once a month, whether you "need" to or not......clear a day and night or, like most of us, can't do that, then schedule 2 nights to throw yourself the best Pity Pary For One Ever!!!! LOL I do it! It really does help me feel better and gets me through the bad days that can sometimes turn into a week or more. Ugh, hate those times, but rsd is a hard task master!

Take up writing in a journal, not one for rsd but just for you. If, like me, you can't write much, then make a file on the computer, with some name so no one will know it's a journal. I've always written and it's kept me.....ummmm....I was going to say sane but that would be a lie....I'm sooo not sane! ROFL Ok...Ummm...it's helped me. LOLOLOL

Cut pics from newspapers and magazines and make collages. Keeping busy is good to help your mind off the pain, well as much as it can be anyway. Oh...having an angry day...go in your room and beat the crap out of your pillow! :-D I love doing that one. LOL

We're here to help out and give anyone and everyone here a "shoulder" to cry on. Don't ever apologize for venting. Better you come here and let it out than keep it inside where it just makes your pain worse. You're are so not selfish at all and having a good cry is sometimes what we all need. *hears inside my head the song...That's what friends are for* :-D

Hugs,

Karen

 
Old 10-31-2008, 06:58 PM   #9
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Re: Does anyone else suffer from scary weakness with your RSD?

Chris,
Karen is right.. We are all here to give that shoulder to cry on... We all know its not easy.. and we all have had our share of good and bad days..
I experience a lot of weakness. Especially when I was first dx with rsd.. I couldn't open anything.. My leg and arm muscles were so weak.. When ever I walked up a couple steps I would have to stop... I felt like I was dying.. Its really weird.. Now things are different for me.. If I am laying on my back and had to hold my leg up in the air.. I couldn't do it.. but I can stand.... When I have a flare up. Forget.. I am beat.. I feel like I have the flu.. My whole body hurts.. I just keep on going.. Either way.. I still get the pain no matter what I do..
I just want you to know.. We are all here for you... good and bad..
Take it easy... Michelle

 
Old 11-01-2008, 10:15 AM   #10
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Re: Does anyone else suffer from scary weakness with your RSD?

OH, you guys are so great!!! Thank you !!! Thank you!! And to think for the last couple of years I really thought that I was the only one that experienced this weakness. I know that that sounds strange. But I really felt so alone as far as anybody else ever feeling the weakness.

I am so glad that I came across this message board. To be able to release and vent how I am feeling is such is such a good thing. I can feel my shoulders relaxing as soon as I come onto this website.

I have learned so much as well. I hope that somehow, someday I will be able to help something else, just like you guys do for me.
Take care and lots of hugs,
Chris

 
Old 11-06-2008, 02:01 AM   #11
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Re: Does anyone else suffer from scary weakness with your RSD?

I have RSD in both legs, and I do get weakness in both legs, sometimes heaviness (lead weight kind of feeling). I have had my fair share of falls and tumbles, too. this past February I fell down a flight of stairs. I laughed about it for 5 days straight my legs just gave way. got some bruising in the thigh area. I laughed about it, because if I didn't, I would have been crying about it instead. I can't even remember how many times my mom had to lift me up off the floor. another weird experience I also had was, I had to go the bathroom, I took two steps out of my bedroom door, and I swear my left leg felt paralyzed and glued to the floor, it wouldn't move, longest 2 minutes ever.
It was like Uma Thurman in Kill Bill, when she was in the car, paralyzed, and she kept telling her toes to wiggle, but it was like your brain and body weren't communicating or registering

for those of you with RSD in the legs, have your leg or thigh muscles ever felt sore and painful like you've been working out and doing a million squats? even though you haven't?

hang in there everyone

 
Old 11-06-2008, 05:53 AM   #12
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Re: Does anyone else suffer from scary weakness with your RSD?

Iliananj,
My legs feel like that all the time.. Actually whole body feels like that when I get a flare up.. I find just taking motrin helps alot.. Do you feel like you have the flu?
I finally went back to work after 8 yrs of having this.. I was so scared.. I think me working help build the muscles up.. Waking up after my first day of work I felt like a train had hit me.. Oh my god.. My whole body hurt so bad.. Just touching my body hurt.. It is getting better and I think its from the muscle building up.. Its been a lot of yrs where I haven't used them at all..
Today is my day off.. Thank god... I started out 3 days a week.. and now Iam on four.. Its hard.. Cause I still have a family at home.. and coming home to cooking etc.. Just kills me..
Some people don't realize I am the average person.. I would love to come home and sit on that sofa for the rest of the night.. Its just not possible...
The one thing about me going back to work.. It has helped my mental state so much.. Keeps my mind off of things. I am not making all that much but that little bit helps so much.. and I feel so proud..
I hope all of you can get to where I am..
I was suppose to go for ketamine treatments next month and I cancelled it.. Today going to call Dr Schwartzman and talked to him.. I am curious to why out of know where can I go back to work.etc.. Did the RSD go in remission? Questions I would like to know.. will it come back?
Does anyone have RSD and got to the point where you can lead some what of a normal life..?
I'll let you all know what the DR says.. Maybe there is hope for all of you.

Thinking of you all..
Michelle

 
Old 11-06-2008, 07:53 AM   #13
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Re: Does anyone else suffer from scary weakness with your RSD?

Hi Michelle, I lost complete use of my left arm and most of the use of my right arm due to RSD and Cervical Dystonia. I've recently decided to contact the local Vocational Rehab place to see about working because I can still use my hands. I'm also able to walk around even though some days my legs, knees and feet can give me a fit. After being out of work for over 5 yrs now, I got were I can relatively deal with the day to day pain and try to live a half-way normal life. This yr, I've pushed myself through the pain and took a trip to NY with my daughters and also two trips to the beach with them. Also during Labor Day weekend, my husband and I took a trip to the coast and done a whole lot of walking doing the sightseeing thing. I even climbed up this big hill to see the Wright Brothers Musuem. Even though I paid for it that night, I really enjoyed going and it really help my leg muscles. So it's just a matter of how determined you are to let it get you down. I do receive disability for RSD but I hate having to still at home all the time. Even though I do stay busy while I'm at home but I really would enjoy getting out and being around people. I get tired of being stuck at home since I worked from the time I was 16 untill I became disabled at 39. I'm 44 now and have a long time to go so I want desperately to be able to due something.
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Arthritis

 
Old 11-12-2008, 04:27 PM   #14
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Re: Does anyone else suffer from scary weakness with your RSD?

Dear Chris,

Just a couple of days ago a really scary thing happened to me with both legs. I was standing in the kitchen behind my husband who was grinding coffee beans, and my legs started to shake and just gave out on me. I dropped to the floor like rock. I sat on the floor trying to get some strength back. After a bit, I got back up & the same thing happened again. I know it happened 3 times, but with my memory it could have been 4. I wonder if this is what every RSD patient is facing or is it just going on with me? It hasn't happened again, so I'm hoping it's a one-time thing.

Wish for you lots of pain-free days,

Sansy

 
Old 11-12-2008, 07:10 PM   #15
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Re: Does anyone else suffer from scary weakness with your RSD?

It happens to me a lot more often than it used to. As far as I've been able to tell it's just the action of the muscles working that will set off the shaking, then the weakness kicks in and down we go! LOL I'm always making a joke out of things and laugh about it more than anything.

Hugs,

Karen

 
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