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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-15-2013, 07:58 AM   #1
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Quick Update!

As I mentioned before I was to see a neurologist this month. This was my 17th (!) doctor in three years. It wasn't a good visit. He doesn't believe I have RSD. He believe's my original Tarsal Tunnel Release was incorrectly done or my tunnel wasn't released all the way. This isn't the first doctor to say this, a pediatrist told me he thought this before. I did some quick research on scars from the surgery and low and behold, my scar stops halfway through my tarsal tunnel. Does this mean we've found the cause of my pain? I don't know.
My regular doctor doesn't believe this though since my most recent nerve conduction came back negative. I basically am stuck. I don't know what to do. Why does it take 17 people to decide I could have one of two things but no one agrees? I've looked for the best foot/ankle specialist in the Triangle, heck even the state and I think I have found some people. At this point I may just look into exploratory surgery because I do have a massive amount of scar tissue around the scar. It's so disappointing to believe you have something then someone else say you have something different. This is how it's been since the beginning for me.
The worst part of it all is that I lost my job, thus I lost my insurance. I'm working on getting my COBRA from my job, but they have refused to send me paperwork. This means my meds alone are costing me over 150 for just the two of them. I haven't found a new job yet, but thankfully I did get accepted for unemployment as of right now. It's not what I want, I want to be better and working. I don't want to cry and break down and not understand why the people I pay to fix me can't fix me!
My thoughts are now to go back to a Ortho and talk about Tarsal Tunnel re-release or an exploratory surgery and a bone density scan to see if maybe I really don't have RSD. All this just weighs on me. It's been a rough week and trying to keep a positive mindset is hard. Hope everyone is doing well.

 
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Old 01-15-2013, 09:05 AM   #2
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Re: Quick Update!

I am so sorry that you are going through all of this. I can't even begin to imagine the amount of frustration that you are in right now. Let's pray that it isn't the RSD though. I hope the doctor is right and that there was just an error on the surgery and that it didn't correct it. I hate to say this but, since you lost your job, are you able to get Medicaid due to the disability and the amount of money it is for the medications alone? I work in a doctors office and we get a lot of Medicaid patients because of them losing their job due to illness or injury. It's worth checking out and you have paid into this program when you were working so...give it a shot!

I know it's hard to be positive when all this is going on but try to keep it all in prospective. If it is RSD, one of the triggers for it raging is stress. This is another thing that is great with this site is because you can express what you are going through and people really KNOW what you are going through!!! I will help you pray, not only for answers but for peace for your mind as well!!!! Hang in there hun!!!

 
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Old 01-15-2013, 08:26 PM   #3
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Re: Quick Update!

Hello Bryn481,

It has been a while since I been on this board. I read your old posts and you are kind of stick in between a rock and a hard place. It looks likes you have been dealing with RSD for at least 3 years. With this disorder, the more time past then the harder it is to get the pain and other symptoms under control. And you have also discovered that almost every doctor you see he or she will offer a different opinion. If your diagnosis is correct and you really have RSD then the last thing you want to do is to have some doctor cutting on you and performing exploratory surgery. Most likely it is going to make all of your symptoms 10 times worst because RSD and surgery is a big No, NoÖ. Read some of the old posts on this board concerning RSD and surgery. A majority of the people said they wish that they would not had ever done it.

 
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Old 01-21-2013, 07:02 AM   #4
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Re: Quick Update!

Bryn,
I live in the Triangle too. Newly diagnosed RSD/CRPS in legs, though I've likely had it for 10 years with the burning pain since my surgeries. At this point I have lots of questions and few answers too. Wishing you the best.

GutsyGirl

 
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Old 01-21-2013, 09:35 AM   #5
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Re: Quick Update!

Thank you so much for your response. That's my big worry right now. I have an appt. w/ a leading foot and ankle specialist I was supposed to see a while ago to rule out bad surgery. Basically he's my last "second" opinion. The only problem is that I'm basically out of options. It's come down to Implant or exploratory with all the docs I'm seeing. Medicine doesn't help, at least any and all of the combos I've tried before. Hate to see all these people on here who have had it longer than I have (well longer then I've been diagnosed) and I complain when I'm sure everyone is obviously in just as much pain or worse as I am. Any ideas/things you have tried in response to your diagnosis that have worked? I'm worried that either way I decide to go I'll just cause myself more pain.

 
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Old 01-22-2013, 07:00 PM   #6
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Re: Quick Update!

What medications have you tried in the past and what are your current medications?

Everyone is different but what medications worked for me were Lyrica and Pamelor. In addition, I was diagnosed and started my treatment within 3 months of the onset of symptoms. Lyrica eliminated the burning sensation within a matter of days. It was about 3 months later before antidepressants were added to the treatment. I tried trazadone then cymbalta which gave me zero relieve. I got lucky and tried Pamelor which eliminated the other symptoms of cold intolerance, extreme sensitivity and deep achy pain after 6 weeks of taking it.

Make sure your medication include an anticonvulsant such as Lyrica, Neurontin or Tegretol. Plus an antidepressant medication such as Elavil, Pamelor, or cymbalta. Your doctor will have to play around with the combination but these two classes of medications are the building block for your treatment. Soaking your foot/ankle in Epson salt and warm water is excellent for controlling the edema. Talk to your doctor about trying an epidural or paravertebral nerve block. It is the next step when you are not getting any relieve from sympathetic nerve blocks.

Try to avoid the narcotics because they donít work well with long standing, chronic pain such as RSD and they are a slippery slope. Also try to avoid the spinal cord stimulator. It helps very few RSD patients and most likely you will have it removed it in 1-2 years due to problems such as infections, failed batteries/unit, bad leads, increased pain near the incision or poor coverage.

There are some smart people on this board and many have been dealing with this disease for years. Just ask about a treatment before trying it and I am sure someone will give you some good feedback.

 
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Old 01-23-2013, 08:46 AM   #7
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Re: Quick Update!

Thanks for your reply. I have tried many of those meds. I am currently taking a break from new meds, and waiting on my insurance to come through. I don't have any right now and thus am in kind of a waiting cycle. I will speak with my doctor about your recommendations as soon as I get back in his office. I haven't ever had relief from any meds I have taken. I also, do soak my foot in epsom salt. The problem is a lot of my symptoms are more similar to tarsal tunnel then RSD. Therein lies our problem. Thanks again for your help.

 
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