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  • RSD in the facial area? Docs think I'm delusional.

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    Old 01-10-2007, 07:56 AM   #1
    maddy36
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    RSD in the facial area? Docs think I'm delusional.

    Hi, I'm new here. I am so frustrated I don't know what to do. I've met w/ over 10 doctors (OD, Ophthalmologist, neuro-opth, neurologist) since having a mole removed near my eyebrow in June 2006....the nurse actually TORE the stitch out because she couldn't see it well enough...ever since that happened, I had a stinging/burning pain in my eyelid area that OD's mistook for dry eye; I couldn't sleep because an unidentifiable sensation woke me up every night like clockwork every two hours...I was exhausted all day b/c I didn't sleep. As day progressed, eye area started burning again and I would get stabbing pains as well.

    MRI negative. Cat Scan negative. Eye exam...great, except I complained that the color that I saw out of right eye (damage area!) different than left eye. Vision seemed blurrier but eye looked fine to docs.

    Neuro opthalmologist injected corticosteriod in 5th nerve by eyebrow in September...within a month, the area became depressed, sunken and blue. I now have permanent tissue/muscle atrophy above my eye according to docs.

    Neurologist put me on Gabapentin in October...up to 900 mg/day...in December noticed lots of hair falling out...and my scalp was feeling like it had suburn. Now my face all over feels the same...sunburnt. Docs blowing me off ... told me pain would go away by Xmas...it did not and now these symptoms are showing up. I've mentioned RSD to two neurologists and one neuro opthalmologist and they say it's not b/c it only affects limbs. Is this true? I feel like I'm suffering more than I ever have in my life over this...my mood/personality has changed dramatically...I cannot believe my husband hasn't left me yet because I've been unbearable w/depression...I having crying outbursts all the time and am inexplicably distraught nearly all the time....just quit a super high paying job too b/c I feel like I can't deal w/it right now b/c my body is not acting normal...thoughts? I'd appreciate it...the medical community is of no help at this point. Sadly enough, I'm in a part of the country where there are the best doctors!!! Help?

     
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    Old 01-13-2007, 09:51 AM   #2
    Sunnycal
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    Re: RSD in the facial area? Docs think I'm delusional.

    I just wanted to welcome you to the board. I'm sorry I can't really help you out with your questions, but maybe someone else can. I know that people have had RSD spread to their face but I have not heard of it starting there. I searched this board and found a thread entitled "rsd and your eyes" (from 2004) that says that it can spread to the eyes. You might get some information there. There is also some information from Dr. Hooshmand on that thread.
    Sunny

     
    Old 01-14-2007, 04:05 PM   #3
    maddy36
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    Re: RSD in the facial area? Docs think I'm delusional.

    Thank you.

     
    Old 01-15-2007, 08:57 AM   #4
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    Re: RSD in the facial area? Docs think I'm delusional.

    Hi Maddy

    Iam not sure if this will help. But I do have RSD on my face. I had shoulder surgery. Just within a couple of weeks the burning started in my shoulder, neck and face. But it was my my lower face. And yes it is RSD....if you search you will find that RSD does affect the face. I can't stand to have the air conditioning or the heater in the car to blow on me. Or the wind out side to blow on me. The cold is the worst. I cover up. My vision has been affected since the beginning also. Do not give up you are not crazy. I do not even apply make up to my face....just eye make up. So I don't know if this will help you...since mine is on lower face. I wish you well. Keep fighting for the Dr. to do something. Take care, Dee

     
    Old 01-15-2007, 12:30 PM   #5
    maddy36
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    Re: RSD in the facial area? Docs think I'm delusional.

    Quote:
    Originally Posted by dee_navymom View Post
    Hi Maddy

    Iam not sure if this will help. But I do have RSD on my face. I had shoulder surgery. Just within a couple of weeks the burning started in my shoulder, neck and face. But it was my my lower face. And yes it is RSD....if you search you will find that RSD does affect the face. I can't stand to have the air conditioning or the heater in the car to blow on me. Or the wind out side to blow on me. The cold is the worst. I cover up. My vision has been affected since the beginning also. Do not give up you are not crazy. I do not even apply make up to my face....just eye make up. So I don't know if this will help you...since mine is on lower face. I wish you well. Keep fighting for the Dr. to do something. Take care, Dee
    Thank you....it makes me feel like I'm not alone...I'm sorry that you're having this problem...how long have you had it? Are you taking medicine? Because the neurontin/gabapentin is causing all of my hair to fall out....ugh....

     
    Old 01-15-2007, 12:51 PM   #6
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    Re: RSD in the facial area? Docs think I'm delusional.

    Hi Maddy to help ease your frustration I have RSD to my face and head also! I have notice quite abit of hair loss in the shower which is very depressing, yes it does feel like your scalp is sunburnt the water is very painful I've already cut my hair short because of the pain of longer hair causes me. I'm starting to get more and more of these painful lidsons from my flare ups. Try and be strong Maddy we have all hit those bumps in the roads with the doctors who don't believe us but in time they do.. my doctor didn't believe me now with all the discoloration he is seeing it.how sad, ...oh well what can we do! HE'S THE BEST! so I stick with him..no regret!! were here for you Maddy!
    Ask your doctor to get you this facial cream..it has Gabapentin in it I will write what is written on my jar and you take it into your doctor and he will know what it is..help really helps me

    "GABA-2K-L"-Gabapentin
    10%/Ketamine 10%/Ketoprofen/%5Lidocaine

    best pain free days Maddy
    eunie

     
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    Old 01-16-2007, 10:45 AM   #7
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    Re: RSD in the facial area? Docs think I'm delusional.

    Hi Maddy,

    You ask what medications I take. I first want to tell you I have tried many different ones. So everyone is different with what works for them. I am currently taking cymbalta, topamax, fentanyl patch, catapres patch, lortab. And I have a SCS. Isn't is just crazy what we do just to find some pain relief. So Maddy we do understand the pain you are in. And the pain can make us feel like we are going crazy...we sure don't need some Dr. telling us. I even tell the Dr I feel like I am going crazy. THe pain can take over your life. That is why we will beg you not to back down to the Dr or tell you to find a Dr that will listen...because if you can find some pain relief...and get some control back then you can really start fighting to get your life back and start learning to live with this RSD. I know I sound like I am in control but let me tell you Maddy I am not. But I refuse to let RSD take everything from me and my family. So Maddy fight. We are here to support you. I can't tell you how much all these wonderful people have helped me. Take Care, Dee

    Last edited by dee_navymom; 01-16-2007 at 10:47 AM.

     
    Old 02-05-2007, 04:54 PM   #8
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    Smile Re: RSD in the facial area? Docs think I'm delusional.

    Hi Maddy, the answer is yes it can be in your face and it can cause you scalp to get dry and scatchy. Before I was diagnosed, that's what my scalp felt like and I lost hair, had little red sores all over my scalp and would get severe headaches. My vision would also get blurry at times and sometimes I couldn't focus on things and sometimes I would get get real dizzy all of a sudden. Thank God I finally find a doctor who knew was was going on. Now I 'm doing better, my hair is growing back and those little sores are no longer there and my hair is smooth now and not brittle and itchy as before. So good luck and I hope your can find a doctor who will help you because you're right about one thing some of these doctors do not understand, I know.

     
    Old 03-05-2007, 03:52 PM   #9
    maddy36
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    Re: RSD in the facial area? Docs think I'm delusional.

    Thanks so much for the positive words of encouragement. I am getting very sad again--my doctors are acting like I'm nuts and that RSD isn't in the face. Only gabapentin has masqued the pain and in trying to go from 900 mg/day to 300 mg I suffered sleeplessness and burning pain again. To add insult to injury due to a corticosteroid injection above my eyebrow a penny-size patch of soft tissue has died and will not come back (face is totally caved in!). Ugh

     
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    Old 03-05-2007, 08:20 PM   #10
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    Re: RSD in the facial area? Docs think I'm delusional.

    Maddy,.
    Like Sharon and so many others I too have it in my face. The nuerontin does help me in the burning, numbness and pain. My scalp and left side of face is on fire always... I pray you find the right answer. I don't know if scraping the area is a good idea or not... Get a 2nd or 3rd opinion because more surgeries cause more pain cause more RSD... Please think it thru thouroughly and pray hard as you face a tough decision ahead (no puns intended)... God bless... Bernie

     
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