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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-20-2013, 08:56 PM   #1
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Question Recently Dx'd RSD/CRPS, long-time burning

I was recently diagnosed as having CRPS/RSD. Guess you could say I'm in a flare. My OS believes it started with my reconstructive surgeries for deformities in both of my legs about 10 years ago. The surgeries were aggressive. Afterwards, I began fracturing. I've had more than 20 and less than 30 stress fractures in my feet; I never had them before the surgeries. My bones in my lower legs are osteoporotic, but nowhere else is this the case; bone density DEXA scans come out "normal" for my age.

After the surgeries, I developed an INTENSE BURNING in both legs that would act up after only 5-10 minutes of weight bearing. This is my "deep burn" and it's been part of my life for 10 years now. After the surgeries, my sensation in both legs changed; I could no longer walk on carpet, and walking on sand would make me throw up. The only time I've ever punched a person with intent to defend myself was when a doctor or therapist touched my leg light. Between the deep burn, frequent fractures, and gluten ataxia (a beast of its own), I've been a wheelchair user on and off for about 11 years. I walk as much as tolerated.

On December 2nd, however, things went wrong. I was getting nerve pain and muscle spasms for no clear reason in my left leg. Two days later I thought it was a fracture so I stopped WB. Two podiatrists said my x-rays showed no fracture, but low bone density. They told me to stay NWB.

Despite NWB, my leg kept getting worse. It has been turning blue and all kinds of colors, swelling significantly, getting very tight, and I'm so sensitive to touch I can't even stand to touch my own leg lightly. My OS said he thought it was CRPS/RSD, considered it a severe case and wanted me to see a specialist.

About a week and a half ago, I got what looked like blisters on my toes. After a few days they went away, but a very superficial (not deep like the burning I'm used to) burn set in and it feel like it's here to stay no matter if I'm WB or not.

I have an appt with a PM on Friday. I don't know what to expect, and honestly I'm kinda scared. What have you all been through in the first few months after you were diagnosed? I have no idea what to expect, and I guess at the moment, that's the thing that scares me the most. This is my first post. Hoping to receive and later give back support here.

THANK YOU!
GutsyGirl

 
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Old 01-21-2013, 01:24 PM   #2
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Re: Recently Dx'd RSD/CRPS, long-time burning

Gutsy Girl,
I am so sorry that you have been dealing with this beast for so long. By the sounds of it, you have had RSD/CRPS for the ten years of your "burning pain". It also sounds like you now have full blown RSD. You definitely have all the symptoms, including the blisters. Have you looked online at different sites for RSD? That was what I did when I got the diagnosis. I have a friend who has this really bad, to the point that she has a stimulator inplanted in her as well as a morphine pump. It scared me to death to think that that could be me one day. My PM doctor doesnt seem to think it will go that far since it was caught so early. She also believes that the flare that I am in now is going to subside and that I will be able to go back to work. I have been off work for over a month now because a nerve block put me in a major flare and caused it to spread!!! The PM doctor should be able to give you more information as well as something to help with the pain. They may suggest a nerve block. If you can do it, I would. The first block I had gave me relief for three months!!!
I know this whole thing can be scary but you will make it!!! Prayers out to you. Let us know how the appointment goes.

 
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Old 01-23-2013, 08:21 PM   #3
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Re: Recently Dx'd RSD/CRPS, long-time burning

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Originally Posted by jewlz67 View Post
Gutsy Girl,
I am so sorry that you have been dealing with this beast for so long. By the sounds of it, you have had RSD/CRPS for the ten years of your "burning pain". It also sounds like you now have full blown RSD. You definitely have all the symptoms, including the blisters. Have you looked online at different sites for RSD? That was what I did when I got the diagnosis. I have a friend who has this really bad, to the point that she has a stimulator inplanted in her as well as a morphine pump. It scared me to death to think that that could be me one day. My PM doctor doesnt seem to think it will go that far since it was caught so early. She also believes that the flare that I am in now is going to subside and that I will be able to go back to work. I have been off work for over a month now because a nerve block put me in a major flare and caused it to spread!!! The PM doctor should be able to give you more information as well as something to help with the pain. They may suggest a nerve block. If you can do it, I would. The first block I had gave me relief for three months!!!
I know this whole thing can be scary but you will make it!!! Prayers out to you. Let us know how the appointment goes.

Hi Jewlz,
I feel like I've been getting the "crash course" in RSD by reading online.

Are you able to drive after a nerve block if it's for your legs??

Sounds like from another post we're a bit similar in that the pain isn't as bad as some of the folks I've read around here. My pain is a bit different I think. Lately my left leg is flaring since December 2nd. But hoping it gives us more information and I can get proper treatment.

Thanks for writing!

 
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Old 01-24-2013, 03:55 PM   #4
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Re: Recently Dx'd RSD/CRPS, long-time burning

If it were not for the fact that you have to go under anesthesia, you would be able to drive. After the first nerve block I had, i probably could have gone back to work, I felt that good. The 2nd and 3rd not so...but that's a whole different story. Even though I had some problems, I would still recommend it! If it weren't for the fact that I'm afraid of the same thing as last one happening, I would do another block to see if it would ease the pain. My pain scale usually consists of a 3 although there are times where it is highter. Four weeks ago, I would have rated it as a 6 or 7, just depends. I have good days and bad days. I started having pain that feels like somebody is jamming a nail through my leg. Not fun. Anyways, you will need a driver only because of anesthesia. My husband and I went out to breakfast right after the first block....come to think of it, I went out for breakfast after the last nerve block too. It was after I laid down when I got home that I had the problems.
Your best resource is reading online...although some suggest otherwise. I asked my PM doctor if she had any information and she is the one who suggested to go online and look it up. Some information out there is helpful, others not so much. I had an appointment with my neurologist today and he told me that the best thing you can do for yourself when you have RSD is to keep moving, even if it is only for a little bit at a time. Range of motion is key. He said the worst thing you can do is be sedentary because you run into losing bone mass. This disease already affects bone mass as it is, the last thing you want to do is make it happen quicker!!! By the way, I see the neurologist for migraines, not this. Today was his first day learning of this. I know the whole thing stinks, but once you realize that this is what you have to deal with, then it's time to just make the best out of a bad situation. Most days I can do that but I have my down days...yesterday was one of those. But...you pick yourself back up and just live every day to it's fullest! Life is to short to dwell on what we can and cannot do. It was depressing for me to get on a scale today and find that I gained 16lbs since I hurt myself!!! I had dropped 25lbs in 9 months before I hurt myself just to gain 16 in 8 months!!!

 
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Old 01-24-2013, 09:06 PM   #5
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Re: Recently Dx'd RSD/CRPS, long-time burning

Sorry I'm too tired to respond to your post at the moment. Trying to pull together all my papers for my first visit with my pain management doctor in the morning.

Do you have any suggestions for questions I need to ask my doctor at my first visit? I'm nervous.

Gutsy

 
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Old 01-29-2013, 05:17 PM   #6
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Re: Recently Dx'd RSD/CRPS, long-time burning

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Originally Posted by GutsyGirl View Post
Sorry I'm too tired to respond to your post at the moment. Trying to pull together all my papers for my first visit with my pain management doctor in the morning.

Do you have any suggestions for questions I need to ask my doctor at my first visit? I'm nervous.

Gutsy
Hi, how did your appointment go with the pain doc? Hopefully he/she was knowledgable about rsd. were you happy with the appointment and what did they suggest? Let us know how you are doing please. I am new to this site and this is my first post. I've had rsd since 96 following surgery and now full body. darlene

 
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Old 01-30-2013, 06:12 PM   #7
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Re: Recently Dx'd RSD/CRPS, long-time burning

My PM said that it was all in my head. I sure hope that you have a better experience. I am just recently diagnosed CRPS/RSD stage 3, (in Nov. 2012) and they treat me like an idiot, mind you I have seen my x-rays they freaked me out. I have been desensitizing my left leg for 2 months starting with a soft silk cloth, then a wash cloth, and so on.... just so that I can wear socks. That's why they decided I don't have it.. I have to wear an Air-Cast in order to not break my legs ( in Germany they call this stage the stage of the "glass bones") I've been wearing this since July...My advice to you stick to your guns, don't let them tell you, you don't have what you know you got and best of luck.

Last edited by Administrator; 01-30-2013 at 06:42 PM.

 
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Old 02-05-2013, 02:11 PM   #8
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Re: Recently Dx'd RSD/CRPS, long-time burning

First appointment with pain mgmt doc was awful because....
wait for it...wait for it...

I never was allowed to see the doctor!!!

Yup.

Nurse Practitioner said I wouldn't see the Doctor until I had A) 3 more MRI's of various parts (I brought the CT scan with me plus 6 new x-rays); B) a neurological evaluation (I already had EMG/Nerve conduction results in my hand from 2009 - they were normal) and; C) I must have FAILED Physical Therapy. I asked her, "Why would you want me to fail PT? My whole point is to NOT fail PT and get better!!" She told me that's just the way its set up. She also said I wouldn't see Dr. Wadley at all until I needed a PROCEDURE like nerve ablation or a nerve block or spinal. So that was a huge waste of my time and safety (driving on icy roads) and gas money.

Since then, I started physical therapy. I have every intention of making progress in PT - :P to the Nurse Practitioner. I'm doing exercises at home, desensitization, all without pain relief. I'm going to do the best I can.

Trying to get into another doctor. Sigh.

 
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