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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-05-2011, 04:00 AM   #1
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Question How can you tell if RSD is spreading?

Hi everyone,

First, I'd like to say that after several years, I still do not know whether or not I have RSD or a nerve injury. To this day, I have not had SEVERE burning pain (I have some mild to almost moderate burning sensations in my toes that come & go) or redness/swelling or skin or nail changes that are typically associated with RSD, so it's been difficult to get diagnosed. Only one doctor said I have RSD, but he didn't even want me to take my shoe off of the good foot for comparison. I am in severe pain almost every waking moment. And the pain is getting worse.

When I first injured my foot, the chronic pain was localized to the ball of my foot. A podiatrist had injected my foot twice with Kenalog which immediately led to fat pad atrophy...the manufacturer of Kenalog states in its literature of Kenalog that it can cause muscle atrophy (and I think nerve atrophy). Because I've had Kenalog injections that can cause damage inside the foot, it's hard to know whether the Kenalog caused the damage/pain in my foot or if it could be due to a combination of nerve damage from the injury, plus the injections and possible RSD.

So onto the question about the possible spread of RSD. In the past five years, I haven't been getting much exercise, because it's like a damned if you do, damned if you don't situation. When I try to do more activities, the pain gets so bad that I need a full day in bed to recover. I know I've lost muscle tone in my body from not working out. Within the past couple of years, I noticed that the muscles in my toes on the bad foot are much weaker than on the good foot where the toes are all normal. The toes look thinner than the ones on my good foot and three of them hurt very bad. Currently, my forth toe has atrophy around the joint of the toe, and the toe is very painful...it looks like someone took a small bite out of my toe on the side of it. I had gone to doctors to complain of pain along the side of that toe way before it atrophied, but they brushed me off and one of them laughed. In the last few months, I've noticed some muscle pain around my ankle of that foot. And in the last few weeks, the muscle pain has spread up to my calf on the leg of the bad foot. I also feel some minor muscle twitches in that calf that come and go. Sometimes it feels like a pulsating muscle pain or like someone is pressing hard into my calf. However, I don't have any pain whatsoever in the other calf. I think that if the muscle pain was due to lack of exercise, I would have the pain in both lower legs/ankles. The fact that I have pain in one calf but not the other worries me that something bad is happening or that I actually do have RSD and it's spreading.

Please let me know what some of the signs are that RSD is spreading. Do my new symptoms of the calf muscles aching/twitching sound like it could be the spread of RSD? If not, what would cause muscle pain in one calf but not the other? If this is RSD spreading, what should I do? I don't know what doctor to go to since none I've been to so far have a clue.

By the way, how do you manage to exercise with the pain?

Thank you for any help. Right now the pain is so bad that I can't wait to be able to fall asleep.

Last edited by sealover; 09-05-2011 at 04:58 AM.

 
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Old 09-05-2011, 11:11 AM   #2
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Re: How can you tell if RSD is spreading?

Mine spread from my foot/ankle to entire leg after an emergency surgery on that leg. When the block wore off in the leg the pain was unbearable, so much that I was readmitted to the hospital. It's never gone away, although it has decreased in intensity. But, I also noticed other changes...increased hair growth, sensitivity, swelling, color changes in leg, other things that told me there was more going on in the leg. I do have muscle cramping, but some days I don't have it and other days I do. I always have the burning, the squeezing, the sensitivity, and odd color.

As for exercise, it is hard. My PT told me this spring that even if all I could do was 2 minutes on the bike on low, then do that. I started really slow and then worked my way up to 30-45 min on the bike about 4 days a week. Now, with that said, I haven't worked out in 2 mos due to increased pain and 2 surgeries (scs put in and then taken out due to infection) as well as IV antibiotics. I need to get my self going again. It is hard because when you don't exercise, it feels worse and if you do too much, it hurts as well. It's a fine line, but I do know that the days I do nothing but sit I feel much worse than the ones I'm up and about.

 
Old 09-07-2011, 06:01 PM   #3
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Re: How can you tell if RSD is spreading?

K Lana, I'm so sorry that your RSD spread after surgery. The symptoms you had would definitely be a red flag that it's the RSD. I hope that you are feeling well enough soon to get back on your exercise bike.

 
Old 09-08-2011, 09:19 AM   #4
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Re: How can you tell if RSD is spreading?

Swimming or just being in the water can be of great help. Its just getting up and getting there thats hard. I like you mostly have the pain in my left foot. I have a very GOOD doctor. My RSD was caught in the first 2 months. I fell and fractured my foot didnt know untill the mri 4 weeks later I was told to just walk on it. Doc sent me to a Ortho spec and I kept telling him it hurts and its so blue and purple they said I was still on track for the fracture to heal. Mean while I was still going to see my reg doc for pain meds. He took one look and me and told me rsd is what you have go home and look it up on med doc. The wierd thing it the Ortho's wife has rsd and he never even thought about mentioning it untill I told him what my reg doc said. So it really depends on the doctor you see.I just happen to have a good Doctor that can dignose but he has bad bed side manner.

 
Old 09-13-2011, 03:35 AM   #5
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Re: How can you tell if RSD is spreading?

I can tell you from my own experience,my rsd came from blowing out my acl and the nerves around it.Initially my pain was confined to my knee only, its been 4 years and now it consumes my whole left leg.for whatever reason it can spread at least it has for me and I dont think there is anything you can do to contain it?I like you have more pain with exercise but like you said what do you do?atrophy comes quick if your not using the muscle.And it seems nobody can help im on my 16th dr in 4 years and they all say something different I dont think any of them know what to do.good luck to you.

 
Old 09-14-2011, 10:06 AM   #6
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Re: How can you tell if RSD is spreading?

Quote:
Originally Posted by tayden View Post
I can tell you from my own experience,my rsd came from blowing out my acl and the nerves around it.Initially my pain was confined to my knee only, its been 4 years and now it consumes my whole left leg.for whatever reason it can spread at least it has for me and I dont think there is anything you can do to contain it?I like you have more pain with exercise but like you said what do you do?atrophy comes quick if your not using the muscle.And it seems nobody can help im on my 16th dr in 4 years and they all say something different I dont think any of them know what to do.good luck to you.

 
Old 09-14-2011, 10:30 AM   #7
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Re: How can you tell if RSD is spreading?

To Tadyen
I was in a car accident and the rsd has now spread to my hands ( I was holding on to the steering wheel) I was hit from behind at at a red lght. The pain is not as bad but I sure can feel after I have been typing alot. I also have some of the same syptoms in my right foot which was not dammaged at all. My right leg will be freezing and ache but its not the same deep ache I have in the ball of my left foot. I have also notice small bule dots on the areas that seem to be affected. I was in a black hole for a while and just could not see anyway out I have pounded my foot using it like they tell me to but Im getting no where pain is still here. I'm going to start Hyperbaric Oxygen Chamber treatments soon. I will be keeping my fingers crossed and hope I see a light a the end of the tunnel. I hope I have help you in someway. In my case it seems to be spreading I do think if you injure yourself you have a great chance of the rsd spreading there also . Im trying to stay as postive as I can but as you know its hard.

Sending out postive thoughts to all who suffer
Nancy

 
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Old 09-24-2011, 10:44 PM   #8
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Smile Pain and exercise with RSD

K. Lana,
I hear you about not doing anything. If I do too much I hurt and swell so bad I can't stand it. Sitting all day is a sure fire way to get depressed in a hurry. I'm about to have a spinal cord implant too. I am assuming yours was not successful. Did it help at all? This seems to be one of my last resorts. Thanks for any info you can give me.

Boat Girl

Last edited by Boat Girl; 09-24-2011 at 10:57 PM. Reason: easier to search for

 
Old 09-25-2011, 09:05 AM   #9
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Re: How can you tell if RSD is spreading?

Hi Boat Girl!

I loved the SCS. It took away much, but not all of the pain, but made it manageable. I didn't have it long, not even long enough to get it set just right. I had a MRSA infection in my back from it, all along it, and so it had to be taken out exactly 13 days after I had it put in. I will get it again. I was planning on doing it soon, but I also have an ankle surgery scheduled in Dec. and my dr.s didn't want to risk infection before my ankle surgery which will also require hardware. So, I'll probably look at getting the scs again early in the new year. It couldn't get here soon enough. I hate being in this limbo of pain until then, but all my dr.s seem to think that this is the best way to go about both surgeries....ankle first and then scs.

 
Old 09-26-2011, 05:11 AM   #10
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Re: Pain and exercise with RSD

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Originally Posted by Boat Girl View Post
K. Lana,
I hear you about not doing anything. If I do too much I hurt and swell so bad I can't stand it. Sitting all day is a sure fire way to get depressed in a hurry. I'm about to have a spinal cord implant too. I am assuming yours was not successful. Did it help at all? This seems to be one of my last resorts. Thanks for any info you can give me.

Boat Girl
First thing is NEVER give up. RSD is such a mental disease. The pain is so tough but the hopelessness sometimes seems much worse. BUT as long as you fight you'll be alright!

I've had RSD for some 4 years now and have tried so many things. I have had a SCS installed now for almost a year and it helps about 30% IMHO.

I have found the only way to fight this disease successfully is by keeping as busy as possible. Family, friends, computer,read, TV, ANYTHING to keep your mind going. I have tried every drug and lots of them. Some will work for you others will not and then others the side effects are just too much. The next thing I hate to say but you need to know. There is NO cure for this disease and it will spread most likely. JUST KEEP FIGHTING with all you've got. MAKE LIFE FIT YOUR DISABILITY DON'T TRY TO FIT YOUR DISABILITY TO YOU LIFE. You are different now, learn to accept that and find ways to do most of what you love any way you have to. I can't sit longer then about 25 minutes so I take a portable bed and canopy everywhere we go and I lie around and am with the family. Life around me not me around it! Keep your head up and remember you can't lose unless you give up! NEVER GIVE UP, NEVER GIVE IN.

Prayers to all,
Rocky

 
Old 09-26-2011, 09:07 AM   #11
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Re: How can you tell if RSD is spreading?

I was in the Marine Corps for years, so I loved to work out any chance I could. But since my RSD has taken over my left foot, I am just able to work and get the necessary things in my life done with the help of pain medication. I have a gym membership, but I think the last time I went was in August sometime...? It's so depressing to see the great body you worked for and kept up just melt away. I'm barely able to work, and I have a desk job! I plan on going to medical school soon, and I'm wondering how I am going to do it. I also need shoulder surgery, and I'm worried I will have RSD come up there too - but I need the surgery. I already have RSD spreading up my left foot/leg! I can definitely identify with what you all are going through! How has anyone been able to get to trying to stay in shape despite the RSD being such an inhibitor?
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Old 09-27-2011, 06:29 AM   #12
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Re: How can you tell if RSD is spreading?

I was worried when I had a small cancer spot taken off my nose. But no problems so far and its been over a year. I find it very hard to keep in shape. I could where a binki untill I got rsd now I have gained 25 lbs and want to get it off bad. I tried swimming and biking and some walking but nothing has worked. I can get inches off which is good but you have to keep it up and Im so tired alot of the time. I'm going to be trying the hyber baric oxgyen chambers treatments soon. I will keep you posted on how it goes. And a big THANK YOU for serving our country

 
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