Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-11-2010, 01:17 AM #1
loretta loretta is offline
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Originally Posted by hipgirl9109 View Post
I will apologize in advance for such a long post. I am so frustrated with my injury and every dr i have seen acts as though they don't want to talk about my problems or what is going on.

I was a runner before this happened. On 9/1 i hurt my hip and could barely walk home after getting only 2 miles into my run. On 9/10 i went to my FNP and she too Xrays and said it looked normal. Probably a muscle.

Saw Orthopedic Surgeon DR on 9/26 (that i found myself, no referral) i believe. he looked at previous xrays taken at my primary care on 9/10 and they did appear normal. He lifted my leg up and to the side slightly. He asked what my symptoms were. Based on clinical he said he suspected i had a femoral neck stress fracture. He told me to take it easy. But no specific "do not do's" were given. If i had pain don't do it. If it got worse i was supposed to call immediately. I was given an appt in 4 weeks. Went back in 4 weeks, xrays were taken. Xrays some forming of callous on top and bottom of femoral neck. My pain was still present. He moved my leg up and side to side slightly. He said since it was showing signs of healing he felt i would be good to go. He said i did not need another appt.

Called on 12/7 spoke to nurse complaining of continued symtpoms and seemingly worse. Dr suggested i come in. Came in on 12/8. Xrays taken again and appeared the same as they were at my last appt late in Oct.
Dr said at this point he suggested surgery because there could be issues with loss of blood to the femoral head and then that could lead to hip replacement etc. I asked specifically "how do we know its not completely healed?". He said at this point it was purely clinical. He also said in hindsight had he thought it was this severe he would have had me on no weight bearing w/crutches. Surgery scheduled for 12/11. (in hindsight i am now wondering why we didn't eliminate other possibilites, ie give me an MRI).


Went thru surgery, woke up in anethesia recovery and right foot was cold. Mention from nurse regarding this and asking about it. Couldn't feel my leg, but i didn't put anythought into it because of the screws i knew were just put into my leg.
Went out of that recovery back to my "room". Foot extremely cold, recovery room nurse told my room nurse and a sock was put on my foot. She asked if i could move my toes, at that point i couldn't. I mentioned i couldn't move my leg either. She asked if i had a nerve block and i told her i did not think so because we had agreed to general. I would say within about 45 minutes i could move my toes up and down enough the nurse was satisfied. Given pain meds, etc and was discharged. My instructions were basic. I had a preop scheduled 10 days later.

For the first few days i could not move my leg w/out physically lifting it up. Foot cold and numb, wore two socks at all times. Constant muscle spasms in leg for first 5 days or so..mostly at nite. Had constant twitching, spasms in thigh.
5 days post op, called DR about foot numbness and coldness and slight swelling. I went in and he looked, said it felt cold, said he could feel a pulse on the top of my foot, checked my incision site and said it looked fine. I asked when i could drive and he said now.

10 days sutures taken out, incision site looked good. I mentioned the foot, said it hadn't gotten worse, but still the same. He said it was probably part of healing and was not concerned. I had to ask for what excercises i could do.

3.3 weeks post op, called and spoke w/the nurse about my concern with the foot. Explained it was numb, purple when vertical, cold up to my knee and sometimes my thigh. Dr called the next day. He asked/said "so your foot is still bothering you" i said yes. I told him what was going on and he said it wasn't really something he's seen. He said it could be because i'm thinner than most of his patients? I asked specifically about nerve damage. He asked again what my symptoms were. I told him. He suggested i see a PT and get some massage in my leg to get things circulated or compression stockings. I chose PT.

Went to PT following day. No massage was done..bummer She did some sensory tests, looked at the color and told him to do 4 excercises which were similiar to the ones from the list i had gotten from the OS previously. Said she felt there was nerve involvment, but there was nothing she could really do while i was not weight bearing. Said she'd call and talk to my DR. Never heard from her or him, not sure if she called or where that ended.

Went in to see my PCP who is a CNP 1/12. She noted foot color, lack of pulse or hard to find pulse on foot and coolness of leg up thigh. Sent me for venous ultrasound. US tech immediately asked if i was here for a venous or arterial ultrasound because although my symptoms sounded arterial the paperwork said venous, i did not know so she confirmed it was venous. She appeared miffed by that.
Ultrasound negative for bloot clots. FNP told me to go back to my OS and have him look at it again, or have a collegue look at it. Basically, she didn't want to deal with it i guess.

Spoke with operating surgeon right before my ultrasound to let him know i had gone to my PCP and what was going on. He said he had no idea why i was having these problems as open reduction/internal fixation for a stress fracture is a simple procedure.
Called OS back 1/14 to let him know the ultrasound was negative and that i would like to figure out what is going on or be referred to a collegue in his office who might better help me if he is uncertain of my condition.

Called me back to schedule appt. Told me after i asked of nerve involvment and arterial involvment that neither were in that area.

Saw ortho on 1/15 said he felt a pulse just fine in foot. Acknowledged the coolness of my foot. Said he wanted me to go weight bearing. Mentioned that there might be some nerves that got rattle up during surgery, some peoples bodies just don't handle surgery well. Only a day ago he was telling me no nerves in that area.

Called FNP after this appt, to tell her what was done/said. She told me to just try to "get better", go to therapy, whatever it took and try hard. WTF? I was insulted and hurt because that is my life motto..try hard, don't let anything get u down.

Fast forward to 1/24..hands are turning, pale, grey/blue/purple, the entire hand is molted looking, then gets red like sunburned. Both feet are now turning purple when dangling in a chair. I get cramping in my foot, calf and up in my thigh. Pain is worse during the late evening and thru the night. Bottom of foot is dried out looking and has a constant, burning type feeling to it. I have a great deal of pain over my incision site still and when i move i can feel a grinding/catching pain that feels as though it is in the bone.
I still have the same groin pain that i had prior to surgery. I am having a hard time with internal and external rotation of any kind. Specifically when i have recently tried doing yoga. Stretching seems to aggrivate symptoms. Stationary bike ok for 5 min..i have been pushing thru the pain and if i cock my leg a certain way can go about 20 min. Weakness and shakiness in leg aftewards, but that is probably from lack of use.

Went to another family practitioner 2/9. Assumed i would at least get blood work done. My hands are constantly red/blue/purple in color, both feet hurt and my legs are beginning to cramp at calves when i sit in a chair. She checked for pulse in feet, felt a solid one. Told me she didn't know why my Dr did the surgery and that she didn't know what was wrong. I got flustered and she could tell and asked what i wanted her to do? I said i didn't know but how come u won't do blood work. She said i had complete blood panel included ana, sed, ra 10 months ago and the did a red/white blood count before surgery.

But i have symptoms now that i didn't have before... she said she would do some research? OK??
No one seems to want to address any of my issues. I am so frustrated and confused.

Any thoughts, experiences etc would just be nice to hear.

Thanks so much!!
Hi Hip Girl, Under pictures on the opening page, you'll see different hands arms,legs feet with various colors. blotchy red, bluish-all temperature change and circulation issues. You mentioned the groin area-is it red/hot? Lymph glands are in that area too that can swell up, like under our ears. Right now my feet a freezing cold, but I have burning red places on legs and upper body.
I just glanced over your letter a couple more times. Have you actually been diagnosed with RSD or CRPS They are really the same thing. I'll explain the difference another time. Take care, loretta
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Old 02-11-2010, 01:50 AM #2
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babs74 babs74 is offline
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Default Sorry bout ur trouble

Hi!.
I read ur story. I am sorry to hear about your story and it sounds a little like mine.. Mine was a work comp thing and they really kept throwing me around to different doctors and not telling me anything.. Wouldnt give me anything for pain and saying i was faking or whatever.. but i decided to call a lawyer and he gave me great advice and told me to find a doctor and not tell them i was involved in a case until i was in a room then they couldnt refuse treatment.. So i would suggest you go to a major ortho doc in another city who you have never seen before.. Explain about your pain and every thing, then when you get in there to see them tell them bout ur surgery and u can even take ur records with you so u have them if u like.. Then if they are a good doctor they will run some tests to find out what is exactly wrong.
I hope this helps you.. Hopefully your new friend Barbara
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Old 02-11-2010, 11:41 AM #3
hipgirl9109 hipgirl9109 is offline
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Thank you kindly to everyone for their warm responses.

I actually have not been diagnosed with RSD and only began searching on symptoms via the internet when an internist from a running forum i participate in suggested RSD (when only my foot was turning colors and having temp changes).

I think my initial post was a bit convoluted. I was having a very bad day, full of frustration, disappointment and after re-reading my feelings definately made the post hard to decipher. this one may be too (i'm still having a hard time explaining all i'm going thru)

My confusion lies in severeal areas:

1. is my pain that is actually in my hip from part of the healing process, the screws causing irritation, or something else. The pain is electrical shock, burning in the hip (yes I DO HAVE A SWOLLEN LYMPH NODE IN MY GROIN, larger then 1.5 cm. )Some of my fellow runners have suggested a labral tear. (unfortuantely, this is where i was getting the run around from my ORTHO. he was simply saying after surgery he had no idea why i was having so much pain because it was a simple surgery) I think the pain is a combo of healing from surgery and something else going on.

2. Had it stayed in the hip area i would have dealt with that by getting a second opinion with another ortho.

3. Now my right foot is numb and burns or feels more like icy hot (the feeling u get one it's so cold, it travels up my leg to just below my knee. Then my hands started changing colors and having the same "icy hot" feeling. Then my left foot is showing the same symptoms. All my extremities look like there is no oxygen being supplied thru the blood to them. What is causing this? My hands aren't tied to any nerves that could have been damaged during surgery. At least nothing i've read indicates that.

4. So with these "unrelated to injury" symptoms (or at least i assume/assumed they were) I go to see two family medicine practitioners. Both of which just don't seem to want to go any where near the issues i'm dealing with. I am SO SO surprised by the "i dont' know's" I mean if i walked in to the office and didn't mention my surgery, i think they would be all over finding out why i'm having these issues.

5. I don't want to say the OS did something wrong or did not properly diagnose me. What i do know is that i still have very similiar pain in my hip, new pain in my hip, severe temp changes in my feet and hands w/icy hot pain and my left foot has a pins and needles feeling. My feet and hands look very similiar to pics on here.

I wouldn't say the pain i have now is severe. The pain i had for the first 10 days was severe. The pain i have now is extremely uncomfortable and gets more irritating as the day progresses. Night time is the worst (in bed).

My next step is to get a second opinion from an Ortho in another city.

I've always been a very holistic medicine type person, firmly believing alternative medicine and that your body heals itself if given the opportunity. I can't say that this experience w/DRS. has made me any more faithful in western medicine.

I appreciate the opportunity to vent. I think just being heard and knowing that someone can symphathize with you when you can't get any answers makes all the difference in your mental health. I believe 100% that your mental being can harm or improve your physical being and even thought i believe that I find myself falling in that "woe is me" mentality.

Thanks for allowing me to come on here and just vent away regardless of what condition i may have.

I wish you all a day of normality and free of pain or discomfort (as much as you can).
hipgirl
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