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Neurofibromatosis

Aug 15, 2015 10:15 AM

Hey there, I'm ashley I'm 23 and I have neurofibromatosis(NF) type one. I'm curious to know if anyone else here in the community has NF as well. I'm on many different medications and 4 of them are for pain the only pain medication I'm on that's not a narcotic is Gabapentin.

Aug 15, 2015 11:42 AM

Delilah2420, welcome to the community. I'm not familiar with NF so I can't help you there. You're very young to have a chronic condition. But just know, we may not all have the same issues but we do share chronic pain. We're here for support, comfort through rough days, and suggestions. I'll keep you in my prayers. And I hope you'll find answers from others who may share having NF. πŸ™πŸŒΌ

Aug 15, 2015 7:22 PM

Hi, I'm looking up your diagnosis, because the roots are roughly nerve fiber. I have nerve pain, but not NF. Just from the first few results, I am sure that is very painful, and genetic. I have some gene mutations, but they are more about sensitivities to chemicals, smoke, and certain vitamins.
Does gabapentin help? I took it for a long time, but then it stopped helping.

Aug 17, 2015 2:24 AM

Thank you FlappysLady81!
I'm so glad I found this community, I have friends who have NF but everyone's pain is different. You're right I am young to have a chronic condition, I've had NF my entire life, I was officially diagnosed at 3 months old. Thank you for keeping me in your prayers. It makes me feel safe and better knowing I have a place to come for comfort and support, I have lots of support through friends in family but it's nice to know I have support from people who know how I feel and understand, my pain isn't always pain from NF it's from weather and scoliosis and old injuries and so I need advice from people who have or had the same injuries or have the same or similar pain from weather and even those who have completely different issues I can come here and ask for help or give my own advice to someone who needs help. It's good to know I have a place to come to ask for help. I have medicine for breakthrough pain but sometimes I want to start off with a home remedy rather than go straight to medicine, sometimes all my NF,weather,injury pain needs is rest and heat or it may need something else that I don't know about. Thanks again for keeping me in your prayers and if you'd like to know more about NF check out www.ctf.org
ferretbandit NF can be extremely painful, I've ended up in the hospital several times with severe chest pain. I have tumors everywhere and one goes from the left side and back of my skull down my neck and wraps around my carotid artery. My intercostal nerves are just coated with tumors. I've had many surgeries to "debulk" and remove tumors I've had to have the one in my neck removed twice, the first time was when I was two and then when I was 16. Yes gabapentin helps, it helps a lot, I've had to adjust my doses over the years but it's never completely stopped working and I pray it never does. I'm sorry it stopped working for you. I strongly suggest to check out www.ctf.org for info on NF because not everything online is accurate. But I want to thank you for taking the time to research my disorder.

Aug 17, 2015 7:09 AM

Delilah2420, I am sorry that you have suffered with this chronic illness as long as you've been on this earth. From your posts, I can see you have been through a tremendous amount of trauma with this for such a young person. I read the info on the link you provided and it's scary. As far as your other pain, I have chronic pain from several autoimmune diseases. I suffer anxiety and depression and this family of wonderful people has been a Godsend for me as well. As soon as I introduced myself, I was greeted by Flappsy, Profiler, Weezie, Oregon and several others with whom I've formed very strong bonds. This is a great place to come for support and comfort and understanding because even though we all suffer different conditions, the common denominator is chronic pain. I'm glad that you found us. I will keep you in my prayers and thank you for educating me on the illness you suffer. I wish you all the very best. πŸ’•πŸ™πŸ»πŸŒ»

Aug 17, 2015 9:22 AM

Than you Delilah, I will fully read up on it later. From the little I read, you are a very strong young lady. I'm praying research finds a way to stop the tumors and soon. May God keep you from having any new health problems! πŸ™πŸŒΌ

Aug 24, 2015 12:55 AM

Hi Delilah2420,
My user name is vivacious libra. My Name is Ariela Antonia there are a few Facebook support groups that are really good just friend me and say you have NF I only accept others who have it or their families. I am also doing an NF awareness project. I am on Twitter Vivacious_Libra and Facebook Ariela Antonia. Or just email me vivacious.libra.4ever@gmail.com

Sep 04, 2015 9:52 AM

My friend her daughter is 15 and Being tested today .

Sep 08, 2015 12:29 PM

About two years ago I had a 2cm acoustic neuroma / vestibular schwannoma removed and about six years ago I had a 6cm brachial plexus schwannoma removed. Whilst I haven't been officially diagnosed with NF2 (my doctors tell me I am simply statistically very rare) there are suspicions that I have this condition and I am currently waiting until my next tumour shows up.

I also have a colleague who has been diagnosed with NF1.

At the moment we are both taking pain relieving medication but different types. Currently my medication includes Panadeine Forte, Brufen, Cymbalta and Lyrica (Gabapentin). I hope you find a way of managing your pain and I'm sure you'll find this pain diary help in that regard.

Good luck with your treatment.

Jul 13, 2016 8:34 PM

I have NF!!:0 I've never seen anyone else here with it!

Jul 13, 2016 9:04 PM

I'm so thankful for this community! How else would we all meets others who can understand chronic pain, or especially our specific illnesses?

Frailfairy, I hope you and the others with NF can become great support and help to each other!

Hugs love prayers and hopefully sweet dreams to all! πŸ™‚πŸ’•πŸ™πŸŒΈπŸ˜΄

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