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03-20-2010, 10:40 PM | #1 | ||
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New Member
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Hi, I am new here. I was wondering if maybee some of you who are going through this could help me. I had surgery 3 and a half months ago on my foot to remove a Mortons neuroma. Now I cant bend or flex my toes, I have pins and needles 24/7 , And so many weird pains sometimes it feels like someone is sticking me with a really long needle, then at times it burns, sometimes it feels wet sometimes it feels like my sock is full of sand. I cant cover my foot at night with a blanket it feels rough and really heavy, when I take a shower(which now is maybee twice a week) the shower water feels like someone throwing rocks at my foot at times my foot will turn a blue/ purple color and feel like it's on fire but when I touch it it's cold cold.Just when I think I've experienced every kind of pain imaginable in this foot last night it felt like some one stuck a butcher knife in my ankle and ripped my skin all the way up my calf???? today that pain now feels like my skin is ripping apart. My neurologist thinks I have peripheral neuropathy, but is sending me to a professor of neurology at USF to have an EMG and nerve conduction test. when I saw her my foot turned purple right there in her office and she said it was colder than my other foot, but she did'nt know why. She gave me a prescription for lyrica, wow expensive, I have read alot about Lyrica and am weary of trying it. Sorry this post is so long I have no where to vent or ask questions. Do you think this sounds like RSD or peripheral neuropathy? any help I feel like I am going crazy
thanks Kelly |
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"Thanks for this!" says: | (Broken Wings) (03-21-2010), Lady (03-31-2010) |
03-20-2010, 11:00 PM | #2 | |||
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Grand Magnate
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I am SO sorry you are dealing with this! You have INDEED come to a wonderful place tho! Both the PN and RSD forums here are very active full of fantastic/knowledgable people.
You have asked a VERY valid question because I've seen it time and time again Drs passing it off as one in the same.... I personally have the constant 'burning' nerve damage PN type of pain in both legs. What you describe certainly sounds like RSD! But I encourage you to check out BOTH forums here because you've also brought up another VERY valid point Re: Lyrica! As a matter of fact, there is a very active discussion on the PN forum about Lyrica. You need to see this! Let me know if you have difficulty finding these two forums here at NT and I will provide the direct links for you. Go to the main menu and scroll down....you'll see them. You need to get some answers ASAP! I'm active on both those forums, so I'll be seeing you there! Hang in there! Help is on the way ..... Rae |
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"Thanks for this!" says: | (Broken Wings) (03-21-2010), Lady (03-31-2010) |
03-20-2010, 11:02 PM | #3 | |||
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Elder
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Hello Kelly and WELCOME to Neurotalk!!!
I'm sorry to hear of your pain. I'm not a doctor so it would be impossible for me to say that you have one over the other. Your symptoms could describe either or both....your doctor(s) would be the only one to help you with an accurate diagnosis. Here is a link to National Institute of Neurological Disorders and Stroke Peripheral Neuropathy Fact Sheet: http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm Here is a link to National Institute of Neurological Disorders and Stroke Complex Regional Pain Syndrome Information Page: http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm Other good sites for RSD: www.rsdsa.org, www.rsdrx.org, and www.rsdhope.org Here is the link to our Peripheral Neuropathy Forum http://neurotalk.psychcentral.com/forum20.html Here is the link to our Reflex Sympathetic Dystrophy (RSD/CRPS) Forum: http://neurotalk.psychcentral.com/forum21.html Please feel free to roam around and join in anywhere. Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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"Thanks for this!" says: | (Broken Wings) (03-21-2010), Rrae (03-20-2010) |
03-20-2010, 11:23 PM | #4 | |||
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Grand Magnate
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Those sites you provided are the most informative info I have seen! Thank you for providing those!
I need to figure out how to bookmark those! |
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"Thanks for this!" says: | (Broken Wings) (03-21-2010), Abbie (03-21-2010) |
03-21-2010, 03:21 AM | #5 | |||
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Grand Magnate
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Just wanted to drop in a welcome you to Neuro Talk!!
Looks like Abbie gave you some good information on where you might find answers to your questions. We have a huge group of folks who are the best support ever...take care!!
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My best friends live in my computer.... . Suffered with back problems since birth...7 back surgeries to date, the last one being on 5/13/2015. Fibromyalgia, PTSD, Chronic Pain “Being my sweethearts full-time care partner, I have to remind myself, when some well-meaning friend or relative questions my methods or motives, that I know more than they do because I Live this life 24/7, and they only come for short visits.” Tamiloo . Gotta love my Olhipie! Dx'd RRMS 1986, SPMS 2004 . Watch my Olhipie Skiing.... . |
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"Thanks for this!" says: | (Broken Wings) (03-21-2010) |
03-21-2010, 06:12 AM | #6 | ||
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Magnate
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--though I'm sorry about the situation that brought you here to us.
I agree with the crew posting above; while this could be a peripheral neuropathy problem, it does sound like an onset of reflex sympathetic dystrophy/complex regional pain syndrome, and the sad fact is that many doctors, even neurologists, have little familiarity with this--it often takes a tertiary specialist to know what to look and test for. You've already been given the forum links here which have a lot of info--I also recommend looking at the info at the very comprehensive Washington University-St. Louis Neuromuscular disorders website (which may help you make distinctions in talking with doctors): http://neuromuscular.wustl.edu/sensory-pain.html#rsd |
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"Thanks for this!" says: | (Broken Wings) (03-21-2010), Rrae (03-21-2010) |
03-21-2010, 06:46 AM | #7 | |||
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Wisest Elder Ever
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I am leaning towards RSD... also. RSD is a neuropathic condition too, but different from PN, in that it is a reaction of the sympathetic nervous system to trauma, a specific type of neuropathy.
Have you had any blood work to show infection (elevated white count?) I would also get another opinion to make sure you don't have some infection or nerve entrapment. (who knows if this podiatrist did the right things, etc). Early treatment for RSD may stop it...so getting the proper help soon is important. Please visit our RSD forum and discuss this with those there. http://neurotalk.psychcentral.com/forum21.html Sounds like a frightful thing...you are going thru.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: |
03-21-2010, 07:35 AM | #8 | |||
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Senior Member
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Welcome to NT
There's lots of info and caring people here to discuss your problems with. We're here for you.
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(Broken Wings) . . |
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03-21-2010, 10:37 AM | #9 | ||
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New Member
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Thank-you for so many responses and all the helpful links!!!!!
Before I had the surgery my podiatrist told me that in 6 weeks I would be able to do everything I did before surgery only better and pain free, I still have not been pain free, and went back to work only last week 3 and a half months later. I am really afraid I will lose my job and insurance because the pain and swelling while I am at work is horrid and instead of working my nine hour shifts I am lucky to get through four hours and have gone home early every day.I have told my podiatrist every thing thats going on, I can not bend or flex my toes the discoloration the pain he just tells me this is normal and the pain is something I just have to work through(well how can he say its normal when he told me 6 weeks in the beginning) So I finally made an appt with my primary care she said this was absolutely not normal she did do a blood test,no infection. She sent me to the neuro. The neuro also said absolutely not normal!! funny thing is the next day I had appt with my pod,I didnt tell him I had been to a neuro! and I asked him if there could be some kind of nerve damage he actually laughed at me a big laugh and said you need to quit investigating online and leave the doctoring to the doctors hahahah he than said that none of my symptoms fit with nerve damage and I probably have a very low pain threshold well I had a 10 lb baby natural child birth and would rather do that agin then deal with this nightly pain. needless to say I wont go back to him ever again. March 29 is my EMG hopefully It will be able to tell me something definate for sure. And if it is rsd hopefully it's not to late to start working on it!! My fingers are crossed so would my toes be if I could Kelly |
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"Thanks for this!" says: | Lady (03-31-2010) |
03-21-2010, 12:07 PM | #10 | ||
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Member
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Hi and Welcome! I have RSD and your symptons are very much like mine. Mine came from a sprained ankle though. My foot is very cold to the touch and when I take a bath it feels horrible on my foot. My foot turns purpleish blue then. I can not sleep with my foot covered up because it feels like sand paper rubbing it. I have very limited movement of my ankle and foot. I have not ever saw a nuero, just a pain doc and ortho. My pain doc did temp test and a triphase bone scan for a diagnosis. I waited a year after diagnosis to pursue treatment and now its like too late. It is full blown and theirs nothing helping now. I had the Spinal Cord Stimulator implanted and it is the only thing I get any relief with. But not to advise one as I have had a very very difficult time with mine. Multiple Surgerys. I hope if this is what you have you can get treatment in time to make a difference. Good luck on your journey and any questions feel free to ask.
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"Thanks for this!" says: | Rrae (03-22-2010) |
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