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Old 01-31-2006, 06:51 PM   #1
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Question Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

I desperately need feedback about what could be going on with my foot...

I was told for over 2 years that I don't have RSD, yet today when I had my first visit with a pain specialist, he told me that I have RSD (milder form). Even though he didn't perform any tests, he made this diagnosis from my history of symptoms with the injured foot. He said that it's not normal for an injury like mine not to get better and to keep producing pain for over 2 years. He only offered treatment with a sympathetic block, and said that I should have received a block much earlier (of course!). I don't know anything about sympathetic blocks or if they would be of use 2 years after an injury. He told me to look up sympathetic blocks online for info about them.

I injured my foot back in November 2003 when I accidentally hit the top of my toes on metal. No broken bones. Just immediate excruciating pain, nerve pain, tingling, hypersensitivity to touch and hot & cold, some swelling of forefoot, some redness, inability to move my toes or bear weight on that foot. First treatment given was 2 steroid injections into my foot (bad treatment)...I ended up with the fat pad on the ball of my foot severely atrophying.

I have been through physical therapy. I have had MRI's, a 3-phase bone scan, an ultrasound, a few x-rays, an EMG. However, based on the test results, I was told that I do not have RSD. But the pain specialist today told me that those tests would not necessarily show RSD if someone is in the early stages. If someone is in the later stages, then a bone scan would show the abnormalities associated with RSD. Is this true?

Currently, my foot has fat pad atrophy in the ball of my foot (steroid injection most likely caused the atrophy), plus perhaps muscle atrophy. The toes on the bad foot look slightly thinner than the toes on the good foot. I have severe to dull aching bone pain, plus burning pain in my forefoot. I feel like I am walking on bone due to loss of fat padding. That foot at times feels slightly cooler to the touch than my good foot, but not all the time. When I expose that foot to very warm water, it turns redder than my good foot. Sometimes the forefoot feels cold, but when I touch it, it doesn't feel cold. I also get muscle spasms in the ball of my foot after I treat that foot with a whirlpool foot bath.

However, the burning pain in my forefoot is not constant. I have pain in my foot every day, but not every second of the day. I never had the extreme swelling in my foot. My foot never turned mottled or purplish. My foot never sweated, and I did not have changes in nail growth.

Do my current symptoms sound like RSD?

I am so frustrated because some doctors say I don't have RSD, then this one expert in pain management says I have RSD. If I do have RSD, then I am very upset that a precious 2 years have passed before receiving a sympathetic block or other appropriate treatment for RSD.

Any comments will be greatly appreciated. I just don't know what to do...I don't know if I should get a sympathetic block and if there are risks involved or what the block will feel like. I can't stand being in pain and not being able to be on my feet like I used to.

 
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Old 02-01-2006, 12:45 AM   #2
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

Hi, my case sounds a bit like yours only I had constant burning pain, but no deep color change, although my knee would swell and be inflammed. No change in nails and no muscle or bone loss because of the exercise described below. I am hypersentive to touch and heat but not cold which is different than most. Do research the condition on the net so you understand what treatments are available and what you should be doing. Exercise is most important to keep the muscle atrophy from setting in. I cannot do physio therapy or other land exercise so I go to the pool three times a week and wear a flotation belt and run and kick and do sit ups in the water. I am in a regular exercise program now and have gotten so I can keep up with everyone else and have actually built more muscle than I had before the accident. I stretch for 15 minutes after as the muscles tend to shorten after exercise and more in people with RSD so one must cool down slowly and make sure they stretch all their muscles. My pain is 30% of what it was and my strength and balance are 200% of what they were. You can do a lot to help yourself. Each article I read taught me something new or gave me a new idea of what was happening to me. Look up other things I have written by doing a search under my name "aicirtapo" if you want to know more about what happened to me and what I have done. Good luck Laura.
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Old 02-01-2006, 06:20 AM   #3
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

From what you have described,it definitely sounds like at the moment of impact from that blunt force injury that started this whole mess,it does appear that a nerve was either destryed completely or at the very least suffered some very extreme damage.the symptoms you had right away would indicate that.the fact that you do indeed have atrophy would back this up as well.when you mentioned the cortisone injection,was that just one or did you have many more?I am just wondering as it really would take quite a bit or cort to actually cause any sort of atrophy.I DO really think the atrophy is from the loss of innervation.i have this happening to the fat pad on my hand at the base of the thumb/since my spinal cord was severely damaged due to a surgery that was done on the inside of my cord,i have many many bizarre secondary injuries/conditions and sensations from hell.the sns damage caused the RSD to actually appear in my R knee.
the thing is,with RSD,not all symptoms will actually show up in all 'victims".I did not actually get any big color changes with my knee til just recently and my Dx was made like a year and a half ago.i now get these reoccuring 'dots'.little blue/purple dots that will just show up and cover the R knee area only.these do not really look like actual bruising?but they have a real "dullish,almost chalky type of surface,not the more shiney type of appearance as you would see with an actual bruise under the skin.But before that started,the only 'changes" were occasional reddening of the skin from time to time.the pain,while now,is always there,used to be more intermittant.the worst is the deep burning that at times feels like someone is sitting inside the knee burning the actual flesh from the inside out with a flippin blow torch,the very deep bone ache that at times actually resembles a migrane headache inside the bone,at the head of the femur.just nasty.i do think that the reason they changed the name of RSD to complex regional pain syndrome is just because of the wide range of symptoms that are possible to actually have when you have RSD.it all really depends on just what other damage has actually occured and other possible underlying conditions.with my RSD,because my pain pathway(within the thalamic tract inside the spinal cord)was severely damaged,the thalamic also governs the way you percieve hot and cold and surface pain,but i also have a condition called brown sequard syndrome that really has caused some really incredible things to happen to just my R side from just below the R breast on down,strictly on the R side only.this also has an effect on the way my particular RSD has shown itself and really contradicts some of the normal way others symptoms would present.It is all really bizarre.
but getting back to you,(sorry,sometimes I tend to ramble on,just slap me,K?)do you know the exact nerve that has been "deadened"?once a nerve becomes so damaged that it no longer actually sends out signals to anything,including the muscles it used to actually innervate,the affected muscles will just wither and you do end up with "just bone'this is what I currently have left at my thumb base,there is like no nothing there even slightly,just down to the actual bone.so when you said that it "feels' like you are actually walking on bone/you are.I lost innervation to alot of the many intrinsic muscles that make up the fine motor functions in the hand.most of this was not actually really noticable(although some was very devistating as far as making specific finger and hand movements,and some actual clawing of my fingers and hand)but what started to happen over time was the loss of very specific areas of muscle mass that now is very very apparent like the thumb base.Depending on just what actual nerve was damaged in your foot,and what it actually innervated will show itslef over time as loss of muscle mass.like your toes,my fingers are becomming much slimmer and i actually keep losing my dang wedding ring off the ring finger.

what this all boils down to though is that you DO definitely have some form of the CRPS,just given your symptoms.They are all 'RSD-ish".The main thing here though is that your new pain doc knows this and appears to be treating you in a much more aggressive manner than any of the other docs had.he is doing the 'right' things as dictated by an actual Dx of RSD,as opposed to before,when they were just treating symptoms and not an actual Dx of something,do you know what I mean?this could also be the key to actually being able toobtain disablity benefits should the need arise.having an actual Dx of RSD now,since they changed the criteria,is a huge plus now for any actual RSD patient.hopefully now that you have a good PM who knows what the heck he is actually doing,things will at the very least,become a bit more stable for you.I do feel for ya.this all just soooo sucks!good luck.Marcia
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Old 02-01-2006, 02:56 PM   #4
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

Thanks so much for the replies. Laura, that's great that your pain has lessened and that you have more strength and balance...like you said, exercise helps a lot. Marcia, I'm so sorry to read about all of the pain you have and about the atrophy in your hand. Have you had a nerve block yet?

I am perplexed as to whether my symptoms are due to steroid injections and irritation of the small nerve fibers from my injury or if my symptoms are related to RSD.

It's so hard to know what to believe when several doctors have told me that I probably don't have RSD, that my symptoms are due to fat pad atrophy caused by steroid injections and to nerve irritation from the injury and from steroid injections. Then one pain management doctor spends little time going over my history and barely examining my foot and says I have RSD. I'm not sure if I want this pain doc to treat me because he didn't do a comprehensive examination, plus, my foot didn't have the actual appearance of what the physical manifestations of RSD are, except for fat pad atrophy.

I have had a total of 2 steroid (Kenalog) injections into the top of my foot following my injury. I have done a lot of research into steroid injections, and it is actually possible to get fat pad atrophy from just one steroid injection, especially if the needle is accidentally inserted close to or into the superficial fat layer. I noticed the fat pad atrophy occurring soon after the steroid injections directly beneath where the injections were given. The podiatrist hit a nerve the second time he gave me a steroid injection. What is not good is that if someone has RSD, then needles probably shouldn't be inserted into the area of injury because it can exacerbate the RSD.

Anyway, I looked at my toes again last night, comparing the toes of the bad foot to the good foot. Looking at the toes from the top of the foot, they are the same for both feet, however, looking at the toes from the bottom of my feet, the fat padding on the tips of the toes on the bad foot are smaller than the fat pad on the tips of the toes on the good foot. So some of the fat pad on my toes on the bad foot has atrophied.

I think the fat pad atrophy could be a combination of damage from steroid shots and from nerve damage. I don't have any numbness/loss of feeling in my foot, and the severe hypersensitivity to touch has gone away soon after I started PT in 2004.

I don't know what specific nerves were hurt in my foot. Dr. Hooshmand wrote about "water-shed zones", and that these are the areas that are more susceptible to develop RSD. The specific area of my foot that banged into metal is a water-shed zone. Lucky me! That is where the small C nerve fibers are located.

 
Old 02-02-2006, 11:58 PM   #5
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

Hello again. Remember that you can have two things at once in a limb. I have arthritis and RSD. Different kinds of pain from each and different drugs. Water exercise helps both. Do not dismiss the possibility of RSD because it is possibly such a horrible thing. If you catch it early you a great chance of conquering it. If I had had nerve blocks with six months I might have gotten rid of this. Because of delays and poor diagnosis by doctors and my wishful thinking that I did not have it, I did not get any treatment for over a year and a half. Doctors do not want to diagnose this and some don't even believe in it (all in the head kind of attitude). Your steroid injections could be causing atrophy or other problems associated with cortisone but it could also have left you with RSD. There are a number of articles about people who have gotten RSD from a shot in their arm. Do a search and see if you can find them. Good luck, keep up the hope, but get the treatment too. Laura.
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Old 02-03-2006, 09:09 AM   #6
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

Hi Sealover!
Welcome to the world of wc! It's a wicked game of chess that they have the power. I too saw sooooooooo many doctor's, that it was my full time job! They do this on purpose so that you will try to close your case, because their job is to break you down! My RSD is in my upper left extremity, They gave me cortizone shots--which they say I know am allergic to cortizone because of the bad reactions that I had. They then tried lidocaine, & alas no relief. They did triple phase bone scans (which my dr. says was a joke, because they didn't even do that test on the specific left shouder--they just did a full body scan!) So I had a repeat one and it showed up in my upper left jaw. Well I have had alot of dental problems which could be a result from the NeROTTEN, or the RSD has spread into my left jaw. I've had all the tests that you did and you must understand that the wc people don't want you to have RSD, due to the settlement. Finally one of their dr's flew over to see me, and I was pretty much bedridden at the the time. He said I had RSD and ordered the nerve blocks which was a about 18 months too late. And they hurt so bad that I'd rather give child birth1 Just kidding--but it was too late. I felt like I was a lab rat with all the injections they were giving me. Enough all ready. RSD is hard to prove, for them at least, and the more doctor's that you can get to document it the better. My pain mgt dr. said I had RSD after the 2 blocks and an EMG test, and the next day he met withmy nurse case mgr., and he changed his story and said that I didn'[t have RSD! Talk about crazy and messed up. I sympathize with what you are going through.
The best thing that you can do is try to close your case, and a tremendous stress burden will be lifted off your back. If you get SSDI and have alot of meds, (mine are $420 a month) with medicare they are now $2 a prescription. So you have to weigh all of these when you do decide to close the case. I'm just so much happier not dealing with them.
And as Laura mentioned the injections could have inflamed the RSD! I also would avoid a chiro, because I wa seeing one too and he snapped my neck good one day and that's when the burning pain came in like a tidal wave. I was showing color changes too way before this, as they too were denying treatments. At least with medicare, they don't deny treaments. In Feb. I have to repeat my neck MRI, because the last 2 were not good. It's now showing a possible tumor at the C6 level. But I take 1 day at a time. I hope I helped in some way, and keep us posted, or if you have anymore ?'s pleas fire away! Aloha Skooze

 
Old 02-13-2006, 12:15 AM   #7
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Re: Confused: for 2 yrs I'm told I don't have RSD, now I'm told I have RSD!

Thanks everyone for the feedback so far.

Just want to clear something up: I'm not fighting for worker's comp. I currently have disability benefits, not worker's comp.

I've been to a lot of doctors because I am getting no concrete answers and my foot is not receiving treatment currently. The most recent doc (pain management) didn't even compare my bad foot with my good foot. I think common sense would tell a doc to compare the good limb with the bad...duh. So I am pretty frustrated with doctors right now. It seems like the answers and diagnosis I get from a doctor depends on what the doctor's specialty is.

A lot of the problem is the fat pad atrophy and the pain it's causing because I'm practically walking on bone. I have nerve pain in the area of atrophy, too, plus sensitivity to cold. My foot turns more red than my right foot after being exposed to warmth (like a shower). I may have a neuroma also.

I'm really afraid to have a sympathetic nerve block (it's been a little over 2 years since my initial injury). I don't know how a block will help or if it may cause other problems.

 
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