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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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"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: |
03-22-2010, 09:54 PM | #8 | ||
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New Member
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well I went to my first physical therapy appt today, and she said to me this looks like the beginnings of RSD She treats other people with RSD, instead of just a consult today she started right away with therapy, electric stimulation,and light messaging somewhat painful!!! but she says she wishes I had been sent to her much much sooner. She said remmision is best with early treatment so she has me comming in 4 xs a week she's not sure weathr or not this will work but that I must get and keep as much mobility back in my foot as possible and even though it's very painful to exercise this foot as much as I can, she wrote a note to my second neuro I will see March 29th telling her what she thinks. She said something about using ultrasound next time I go?
Crssing my fingers hoping it's not to lte |
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"Thanks for this!" says: | ginnie (10-24-2012) |
03-30-2010, 01:17 PM | #9 | ||
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New Member
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When I read your post, I was aware of how many of your symptoms were identical to what I went through. My foot did the same thing at the doctor's office, the purple color, and the temperature change. One of my first symptoms was that I could not handle even the weight of a bed sheet on my left side of my body. It caused a lot of pain. I have a problem with my left side in that I have intense sensation. I can feel my left eye moving around, my left nostril, my left ear, etc. One thing you mentioned was the drug cost. I was laid off of work in December, and am now on my husband's medical insurance. However, this is a preexisting condition, so his insurance will not cover anything regarding my RSD for this year. My doctor's office contacted the drug companies for compassionate care, and now I get my Neurontin from Pfizer Drug Company at no charge. If you have no drug coverage, talk to your Doctor's office for help.
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"Thanks for this!" says: | ginnie (10-24-2012) |
10-24-2012, 01:37 PM | #10 | ||
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"Thanks for this!" says: | ginnie (10-24-2012) |
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