I was diagnosed at birth and for most of my life had no complications aside from cafe-au-lait spots and a few small tumors. In my late 20's I started experiencing pain and sensitivity in my left pinky that has now spread to the ring finger and a couple fingers on the other hand. This is due to the golf ball sized portrusions of NF tumors in my spinal cord they tell me.... Or the scholiosis and resultant issues and complications. I guess my question is; IUs there anyone out there with similar problems or pain issues related to NF? I have several family members who share the disorder and none of them have these problems including my cousin who has severe tumors both internally and externally. I'm being driven MAD with the pain at times and its hard to get people to take it seriously when they dont understand. Especially doctors. If anyone here has similar experience, please message me with anything... even just to complain. Misery loves company and all. I'm just tired of being told there is nothing they can do for me. I'm looking forward to learning more about Gleevec and hopefully trying it out. So if you are on it and can tell me more, PLEASE do. Thank you for reading this and have a good one.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
New to the site.
- By guilty_spork
- Posted May 22, 2009 at 4:17 pm · 6 replies
- Shared with the public
Posted in:
6 replies
- Oldest first
- Newest first
- By PJ59
- Posted May 23, 2009 at 4:17 am
- Report post
I can totally relate to the pain. I have these pains in my fingers - several of them. The pain can come from nowhere or from brushing the fingers over something. God forbid if I hit them on anything.
I've learned to type on the computer with only a few fingers as the rest hurt.
I have other areas of pain such as my legs, arms and neck.
My Dr's too are pretty "no pain meds" also. They think every one is drug seeking.
I take 1200mg of Ibruprofen every 5 - 6 hrs. I know it's not good for me but the alternative is devestating pain.
- By guilty_spork
- Posted May 23, 2009 at 9:33 am
- Report post
YES !!!! Thats exactly it !!!!! OMG, You know. There is a spot on the inside of my left pinky that if touched, even a feather brushing it, feels like somone smashed it with a hammer. The rest of the time, its like stabing pains in the bones of several of my fingers. Thanks for sharing, I'm soo glad that I know now that I'm not crazy. As for the ibuprophen, i can relate. I'm on vicodin now but believe me when I tell you that its marginal at best and there are times where nothing can touch the pain. I even asked about removing the fingers but the doc says that because the pain is caused in the spine, I would still get phantom pains. Bleh.
- By RSERDA
- Posted May 23, 2009 at 12:56 pm
- Report post
I have NF2 and also have pain caused from spinal tumors. I get sharp burning pain in my chest, underarm and upper back area, Doctor has told me regular pain meds to nothing for this pain because it is nerve related. He told me the only Rx for this type of pain is Lyrica. It does help me with the pain but wipes me out (very sensitive to pain medications) so I have only taken it a few times.
- By guilty_spork
- Posted May 23, 2009 at 1:05 pm
- Report post
Tried lyrica... nada. Neurontin... nada. Dont believe them when they tell you painkillers wont help. They are the ONLY thing that helps me. Doctors have an aversion to prescribing narcotics because of abuse. The fact is, if you are in pain, you are not gonna get high off painkillers. I'm on low doses of PKs and it helps slightly with my back and joint pain but my finger pain... just a slight dent. Not much but its better than anything else I've tried. Maybe its just me. Maybe its the NF, but no drug ever effects me the way it does other people. Does anyone else experience this?
- By dragonfly1980
- Posted May 23, 2009 at 7:08 pm
- Report post
I have had NF 1 since birth as well. I live with pain daily. I have pain in my legs back neck and hands. It hurts so bad that I just want to die some days. The only thing that keeps me going is my kids. I dont have ins. So I cant go to the doctor. I cant stand or walk for long periods of time I cant sit in the same spot for long periods of time either. I was on pain killers and muscel relaxers and nothing helped. That was when I was 14 years old. I know how you feel.
- By TwylaWarner
- Posted September 25, 2009 at 11:51 am
- Report post
I am currently on Lyrica right now and Nocro 10s the norcos help some days and some days they dont it just depends on the pain.. Yea i dont get high off them at all but i know alot of people that are addicted to pain pills fpr the buzz when i get mine i have to keep them up my butt, lol cause i am worried about someone breakin into my home for my pills
Add to the discussion