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Hi! I've recently noticed some pain in my left arm, hand, and fingers. I thought maybe I am getting arthritis soon in my life. I have been using Ben Gay and it seems to take the edge off but, it still hurts. I've always had pain my legs but never in my hands or fingers. Does anyone else experience this? I am also getting a little cluster of little tiny bumps on my hand. At first I thought it might be dry skin but, it is growing.. any thoughts? Thanks!
OMG yes. I have terrible pain in my fingers and hands. It is sharp and feels like stabbing. Also, if I have something brush up against it or hit it lightly it is like dropping a cinder block on my hand. Also cold really bothers me. For example, I took my son swimming yesterday and the pool water was cool and I was in pain. (We live in GA). I have tried several things with my Dr., but am not finding any help. It is only since reading posts on this site that I realized that it was NF. I hop you find some relief. Sometimes, putting pressure below where it hurts helps some.
Google subungual glomus tumors. I have the same problems. I made a post a while ago and it souded almost word for word the same as this. Its TERRIBLE pain and I have a hard time getting doctors to understand or take it seriously. I have an appointment in oct and if this guy cant help me... i honestly dont know what im gonna do. I want my finger gone at this point.
I feel the same but, I feel phantom (spelling ?) pain. Thanks for your replies. My legs have always hurt but, the arm, hands, and fingers are new for me.
Spork, what doctor are you going to see in October?
Dr Ibrihim at Albany Med. It was supposed to be Dr Murnane. I'm kinda worried now because I alreday saw somone at albany med and it didnt go well. What I need is to get a regular specialist that I can see as this Progresses
My pain seems to shift between my fingers & hands and my toes. Last night was a toe night, it sure makes it tough to relax and sleep when its like someone is switching a light switch on and off between pain and no pain. When the pain is in my fingers they twitch involuntary which bothers my wife to the point of looking for duct tape to tape my hands down.
I have had pains in thumb and occasionaly fore finger, accompinied by mucho numbness. Dr. said I had carpel tunnel and even did the electrode test on the arm like we did the frogs legs in high school & Jr. College. After surgery...no change. Now the neuro Dr. has given me 300mg Gabapentine (Neuronton) 3X da and 50mg Tramadol 3X da. Doesn't stop it but does help.
Thank you for your reply. I know I can't take neurotin at all. It literally makes me crazy.. like I can't hardly even speak and I lost control of my bodily functions. I'm not sur eabout Tramadol, I'll ask my doctor.
Neurontin is bad. Made me FREAK OUT. I dont see the problem with good old fassioned pain killers. They work. Have minimal side effects, especially compared to stuff like neurontin. Who cares if they are "addictive" If you have a chronic disoreder that can't be cured and is progressing to the point that life is unlivable, it doesnt really matter at that point. But pharmeceutical companies dont make money off the OLd stuff. They want research funding and proffit. The simple fact is... 99.9% of all people are addicted to NOT being in pain. How you get rid of the pain is irrealevant.
I was diagnosed with a glomus tumor earlier this year and had it removed about 2 weeks ago. I am encouraged at the results so far. I accidentally hit my operated on finger the other day and normally the pain would be an 11 on a 1-10 scale. This time it was only a 9. About what you would expect from hitting an already tender finger.
For the surgery they need to take the fingernail off to get to the tumor, then they just put it back in place to protect your nail bed. I am so afraid of getting it snagged on something that I have a bandage on my finger all the time. It looks like a smashed fingernail, but the pain is not that bad. Especially compared to what it used to be.
I have lived with this pain for most of my life. It started hurting when I was just a little kid. No one believed me. It feels so good to have someone know your pain is real and then tell you what to do to fix it.
HannahRuth,
I am glad to hear your pain has improved. I made an appointment with a dermotoligst to look at the little tiny bumps on the right hand. Weird, my right hand and fingers don't hurt.. my left one does!
hey spork,
i so agree with you! neurontin is bad...i like the good ol' fashioned pain killers also.......i don't like the anti-deppresents and whatnot.
i had to tell my doc not to give those to me.....he's giving me a new rx for morphine and oxycodine..we'll see how that goes..:)
I am a 33 Fm and have had NF1 my entire life. Just in the last 8 yrs or so i have developed sharp pains from my elbows all the way down to the tips of my fingers. There have been so many times that i have woke in the middle of the night crying in such pain. i have to go to a county health doctor because i am on the county medical service program and the Dr. i see knoes nothing about NF1&2 so he see's nothing wrong with me. so yes i do very much understand how you are feeling
rosered184
I understand about being on the county medical system. However Children's Hospital will see me though I'm an adult.
Yah, cyanide, I never had a good reaction to antidepressants either. Terrible cuz I also suffer from terrible depression. Painkillers seem to help. I dont know if it's just cus easing the pain helps of if they are actively helping my moods.
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