RSD and Exercise

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From: bethanna Sent: 2/13/2008 8:46 PM
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From: DocSuess Sent: 2/14/2008 4:51 PM
I have been going to PT sent April of 07". I got a scs put in March of 07'. Before the scs I could not even put my foot on the ground. Now I can walk with the use of a cane. I go to PT two times a week. First I start out with riding a recumbent exercise bike for 10 minutes. Then they have walk up steps for 2 minutes. then they have me walk side steps in the parallel bars. Then I work out my legs with weights. MY left leg is still not that strong. But, they believe the more that I work out the less pain I will have. Still the days that I go to PT, I can not do much more then go home and but my foot up. So, who knows what is the best thing to do.

Lou


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From: byrd45 Sent: 2/18/2008 1:32 PM
Hi Everyone,
I think what is best here is what you are most comfortable with and what keeps you moving without sacrificing your health. That means something different to all of us but as long as we each don't push ourselves into flare country I figure exercise is a good thing to keep our bodies healthy. Best scenario talk to your doctor if you haven't to find out what would be best for you so you don't hurt yourself. We each have different abilities so just exercise to your body's ability and you can't go wrong. Sounds like that is exactly what Bethanna, Glenda, and Lou are doing. I think we can each find a way to achieve this even if walking is all you can do it is better than nothing and if you are wheelchair bound or bed bound ask your doctor about isometric exercises or maybe low weights if your body can accommodate that type of exercise. Anyway we can find to keep ourselves moving can defintely help keep our heart strong and our circulation moving so we don't develop clots. I know that we sure don't need these added problems along with RSD. Keep it moving my friends and I will too and good luck to each one of us!
Love,
Robyn


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From: byrd45 Sent: 2/18/2008 2:00 PM
Hi Bethanna,
I never answered your other question...And another question. . .does RDS ever START off in a higher joint? Like the wrist instead of the fingers or the knee or hip instead of the foot? Yes RSD can start anywhere that it wants to including a wrist,knee,hip,breast,etc. and have talked to people with all of these. I even know of a case of a person with RSD of the anus(that is the only place the person has RSD how horrible for them) and I myself have RSD of the inner ear (which was the second place my RSD showed up)which I'm told is rare but can happen. I also met a lady in the hospital that had RSD of the eyes(which is where hers started), light was agonizing for her,the brightness caused horrible pain and burning as well as wicked headaches.RSD can start from a gunshot wound,a heart attack,surgery,a break,a sprain, any injury really sometimes minor one even and sometimes not. Carpal tunnel and brachial plexus lead to RSD alot of times as do surgery and broken bones or sprains. My RSD started in the brachial plexus nerves which lie deep in the chest and affect your arms. My injury was to both sides but worse on the right which was my dominant hand. Since then it has spread full body-systemic as you know already. When the nerves were injured they stretched and sprang back like a rubber band which caused a nerve injury that set off RSD. Well I hope this helps answer things for you and I hope you are enjoying your day!
Love,
Robyn


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From: byrd45 Sent: 4/1/2008 10:19 AM
Hi Everyone,
Guess what! My Hubby bought me a recumbant exercise bike for my birthday! I'm so excited about using it and hopefully it will help slow down or stop the progression of the Atrophy in my right leg, stomache, and back. I hope so! The isometric exercises I have been doing help some but not enough to slow the progression down for me to the degree I would like it to be. I went with to pick it out and try it in the store so we would know for sure it was comfortable enough with my disc problem in my lower back.That has become a very chronic pain issue again for me but I am trying to hold off going for another injection as long as possible.I'm hoping the exercise might help it by making the muscles stronger there.Anyway it just got delivered so now he has to put it together and move some things around.How is your week going?I hope you are all having a good week so far! My new lawyer is coming tonight so I can meet him. I'm praying he will do a better job than the other one and not leave me hanging like that.Trying to think positive but anyone who could say a little prayer that things work out I could sure use your help right now. I received a notice yesterday that they are assigning the petition to stop my pay to a judge and they will send me the date and time when it is appointed.Anyway, hoping for the best there. Matt is home and has been yesterday too sick with a virus. I feel so sorry for him but he is doing the best thing he can sleeping through it.Wishing you all a low pain week!
Love,
Robyn


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From: Mexico_Steve Sent: 5/5/2008 8:01 PM
I try to exercise everyday. Well, it's my goal to exercise everyday. I manage to lift weights at least 20 days a month. My RSD is mostly in my right foot. I find if I can force myself to walk even if it's 20 feet I feel better, less pain. Many days at the gym I do upper body stuff. I've found by working out I feel better overall. If you can keep moving, lying around only makes it worse, IMHO.


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From: byrd45 Sent: 5/5/2008 9:40 PM
Hi Steve,
I am so glad you posted! That is great good for you! I'm finding once you push past the pain barrier it gets easier. I had heard that endorphins are released as you exercise and am starting to believe that myself, because it does feel good as long as I don't push too hard. I did 4 minutes on the bike today my first time lol. It told me I burnt 8 whole calories! I laughed and said to my husband look honey I buened off a whole lettuce leaf aren't you proud of me?I'm proud of myself though because it was more than I thought I would be able to do. It felt so good to be riding again even though it wasn't outside, it has a mode where you can pretend which is cool. I was an avid biker before getting RSD and have missed doing it so much!This recumbant bike was such a great idea and I am so hopeful that it could help my leg and stamina too. I had to think of something my leg was turning outwards affecting my walk and pain levels, and getting weaker each day from the atrophy in it due to RSD. It's been like that since my RSD spread and went to other places and not just my arms. It's full body these days and I am noticing atrophy happening in my hips, lower and upper back and shoulders too. You are so right you have to keep moving no matter what. Throughtout this whole thing I have always pushed myself to walk and do whatever exercise possible to stay mobile I think if I hadn't I would most likely not be walking around still. It surpises the doctors that I am still moving without aid, but RSD pushes and I like to push back it feels better to me somehow. Lying around does make it worse if you do it too often. Taking breaks help me alot between activities so I don't overload my system. Give yourself a big pat on the back you should be proud of how you are pushing through your pain to help your health. I'm real proud of you! How's everything else been going on with you? I hope things are going better and life is being nicer to you.
Love,
Robyn

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From: byrd45 (Original Message) Sent: 2/13/2008 9:39 AM
Hi Everyone,
I had read a post from Bethanna about exercising and realised we have never discussed it so here it is... first here is her post and what the discussion said....
I've been in the bed for most of the day today. I have a question for those of you have been there and done that: How on earth do you know when you're doing to much with exercising? Right now I'm doing an eight minute warm up and 12 minutes of aerobic work - either stationary bike or low impact beginner level floor aerobics - and some very light weight work. I haven't done enough to get even a little sore, yet here I am in bed with my legs and hips and right arm hating me right now.

And another question. . .does RDS ever START off in a higher joint? Like the wrist instead of the fingers or the knee or hip instead of the foot? Yeah, I know, I'm weird, but I kinda like being weird. This seems all backward to me. (Wait. No. .. not THAT weird. . .I'd kinda like to follow something at least reasonably understandable for a change. . .yeah . . that kinda weird. . .just a little weird. . .ok. . .back to message.)

The second question is a eh, if you happen to know, I'd love to know that I'm really not THAT weird after all. But the first question is really very important. I think I'm pushing it because the Elavil doesn't seem to be handling the pain any longer. Or maybe the Elavil has just run out it's usefulness and I'm needing to change it?

I'm having a bugger of a time figuring this one out. Help please?

Thanks!
Bethanna

PS: **Sticks tongue out at everyone 'cause yer ov'r due.** **giggles**


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From: shellie Sent: 2/11/2008 11:06 AM
That is it. There is no way to know when it is too much. One day I can do dishes, vacuum, and even get a load of laundry done and dinner cooked and the next day it could be that I can only let the dogs out. What I try to do is a little each day and take rest time every 30 minutes. I know it's a drag but in order to adapt to things you have to know the rules and what to expect and RSD is not something you can count on to give you 20 minutes consistently.I go with the flow do what I can when I can and the rest can sit on the "to do" list till I can get to it.

RSD causes your blood vessels to constrict. So does working out no matter how little you are doing. It also opens up if you work hard enough. With RSD you can not get past that point so you deprive your body of blood flow, oxygen and so on. This is why you are in bed today and most likely for a few days.

When I first got RSD I kept trying to do everything and it made me nuts to see nothing in it's place. That was many years ago and I made it worse trying to get things done and it put me in bed for days then I could go for a week again and then right back into bed. I found out that the slow steady turtle wins with RSD and less pain. I still over do but not like I use to. It takes time and when you figure out your warning signs then you will know how many days you will be in bed for that extra 10 minutes of fun you did 3 days ago.

When I hit my knee in the accident my RSD was just in my lt ankle. The injury caused it to go to my rt knee and my neck. I think once you have RSD even if you bump another body part it can spread to it. Mine jumped.

Remember each person is not the same we just have a lot of the same symptoms that react differently with each person. I could hit my arm and curse for 20 minutes and yet you hit your arm the same way and curse and end up with a super bad bump and not able to move your arm for a week. That is the RSD The next time I bump my arm it could break a bone. There is no way to plan a life, no way to plan a work out because RSD likes to dictate our life. Trust me the minute you think you have it all worked out, RSD throws you a curve ball.

Hope it helps a little. Rest and find something little you can do from bed.Reading,crafting, surfing the TV. I do know the more rest I can get and take a nap during the day the less I get wore out and can hang with doing more.

Love and (((HUGS))) Shellie



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From: bethanna Sent: 2/11/2008 11:26 AM
This is a huge help, thank you, Shellie. I'm beginning a work out / cause / effect log to see if I can learn what to look for and slow things up a lot. I know the first time I worked out my hands and feet went white in the splotchiest and weirdest way - looked like my fingers and toes had a line drawn straight across them and everything above that line was white white and everything below it was flushed the way it should be after a work out. That hasn't happened since, and the color is much better in my hands and feet now after I work out.

The night before yesterday I slammed my finger and hip into a dresser trying to walk around my bedroom in the dark. . .so so soooooo not smart. Drew blood on the ring finger of my right hand and really bruised my hip good. I didn't work out yesterday.

:-/ I did start a log to try to figure this thing out so that I know what to look for to let myself know when to take a break. Not an easy thing to figure out I think I will start with what you suggest with a rest every half an hour or so, and see how that goes.

I always hated jigsaw puzzles when I was a kid!! **laughing**

Thanks, Shellie!! This your post is a huge help!!

<3
Bethanna


Thanks Shellie you made so many excellent points here!
What are your thoughts on exercising and RSD? Do you exercise? Have you found a particular excercise that is working for you personally? Not that we are referring any exercises to anyone please always check with your doctor first and foremost they know best and so do you....listen to your body it will tell you what it needs. This is how I feel on the subject.....
Hi Bethanna,
Everything Shellie said I definitely agree with, that is how I manage too... do an activity have a break... until I feel ready again. Really listen to your body that is the key. You will learn to see the warning signs ... for me they are lightheadedness, nausea, increased numbness, sudden increased pain, cramping of body part or parts, color change in skin of legs or arms (I have full body so this might happen differently for you or not at all not sure), cold sweats, shaking;tremoring, stumbling, and sometimes headaches. Now sometimes it can all happen at once if I have really gone overboard and when it does I know I had better rest most of the rest of the day or at least for quite awhile or I can assure myself a flare up and bed for a few days to a few weeks depending on what set it off. Exercising is tricky that way and that was what I meant in my other post about taking it real slow. It is hard and I went through something similiar when I was newly diagnosed. I was an advid biker and loved to bike for a few hours in my area four to five times a week. I was doing it to get in shape and because I really enjoyed the natural high I would get from exercising. I miss it so much and had to give it up seven years ago. I just couldn't keep the level of activity I had grown used to back then. My brain wanted it, craved it, still does, but my body just couldn't handle all that exercise and the continued stimulation to my nervous system. Just like Shellie said, RSD does affect your blood vessels like that, your bones, and muscles too. You have to be careful that you aren't to hard on your body or it will pay you back and make you miserable, but don't lose hope it doesn't mean you can't exercise. You can just do it in smaller doses and if that doesn't work then switch your workout to exercises that are more RSD friendly. Water exercise is an exellent way for us to exercise if you have access to an indoor pool or can find a way to get access to one. That is the main exercise my RSD doctor and pain management doctor have recommended even when I was real sick with full body RSD. Almost anyone can do isometric exercise too, and I think you mentioned in your other post about possibly checking into Tai Chi. I would give it a try and see what happens. It is a slower movement and balancing type exercise and I've heard you can get just as good a workout body wise as aerobics yet it is gentle on your body which is why it is perfect for anyone with physical challenges. I have a feeling that if you are doing jumping, running, or any kind of jarring motion in your work outs that this is what is putting you in bed or making your pain levels to go up. RSD causes the nerves to misfire and become extremely overexcited and there is swelling involved as well, so if you add any kind of jolt to that or vibration(which is why so many of us get sick from the car or other vibrations) it just excites the nerves to an even higher level which causes more misfiring which in the end sends signals to our brain to feel excruciating pain. The more excited the nerves get the more nerve ganglias form(that's the nerves that are sending out the pain message) and more signals are sent to other nerve fibers in other areas and this is how RSD is spread. That is why if we push ourselves to hard into flare(when you are in so much pain you are forced into inactivity)after flare it can cause your RSD to spread and even to other areas than where your initial injury is. If we don't recieve treatment for our RSD and messages are sent over and over day in and day out the same thing can happen to some of us(RSD spreading) not everyone though because we are each individuals. That is why some spread fast, some slow, some go into remission some not it just depends on you and how early you are diagnosed and how agressively they treat the RSD. With RSD the sooner is better and being diagnosed during the first 6 months - 1 year gives the best prognosis yet it doesn't mean if you are diagnosed after that you won't go into remission. It can still happen with the right doctors and the treatments that are needed, and proper care if your body decides to cooperate lol. Whenever you injure yourself you can have a flare up or spread of your RSD or both. Having blood drawn also can cause flare ups and spread of RSD as well that is why it is important that they try to get the vein in the least amount of pokes and if they can without moving the needle around in there once they are in which breaks blood vessels and causes me a flare up everytime. I really don't think it is just the elavil at work here unfortunately I wish it was. Well I figure the known is less scary when you come down to it and if you don't look at it like I did at first you will be just fine. I used to feel like a ticking time bomb as I found out more and more I was just waiting for the explosion and in hindsight I can tell you the only explosions are when they are leveling buildings and the fourth of July but we are all going to watch them as a spectator not be the source of one.I would love to hear how you deal with exercising and RSD. Walking is the number one greatest way for us to get some exercise yet not hurt ourselves, but don't forget please take those breaks when needed and bring some water. Has anyone else noticed they drink more now than before they were diagnosed? I like to drink water alot and I'm sure alot of my meds could have a hand in this. I figure it can only help my kidneys flush through all those medications going through them everyday! Take care and talk to you all soon! I would love to hear your comments or experiences with exercise and RSD you just add them to this post.
Love,
Robyn




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From: glendapullum Sent: 2/13/2008 10:52 AM
As most of you all know I got my scs in july of 05 and my goal was to be toatally off meds and get back to a real life once again .When I went for my 6week check up on the scs I asked my doc what I could do and what I couldn't do .the only thing he told me he didn't want me doing was swimming or anything that would stretch out my leads .Bike riding ,working out as I felt comfortable ,power walking I could do . well I tried to play volley ball and I paid dearly for it but I have worked out at Curves for Women its a 30 min workout that I was doing 3 x a week I loved it there is one only 1 machine I can't do so I just move on to the next .I missed most of last yr doing it due to being with my mom when she was so sick but while I was at my moms I power walked 5 miles every night when the hospice nurse would come and stay with her .That was my stress relief .I have continued doing this weather permiting and love it I'm looking for a recumbent exercise bike to put down in the basement for bad weather days .In the summer I ride my bike alot . I feel very strongly that we need to keep moving I know there are days we can't tho .
hugs
glenda