Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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deleted_user 10/24/2007

Dad has NF. He is 73 but doesnt talk about NF very much. I grew up in a family with several relatives having NF. It was just normal to me. Just recently I have found that their are various kinds of pain that come with NF. Before I approach dad about his experience, and to see that he gets the best treatment. I would like to know a little more about NF pain. We have a very good GP who has taken wonderful care of all my family. I have FM and several other conditions that cause chronic pain, so I am fairly well informed about pain reduction medication and treatments. What kinds of pain are present in NF...I know a bump on a bump can cause pain or bleeding, what other types of pain is experienced. I am grateful to find this site where everyone gives such great input and great support for each other.

May all beings be happy,
Marty girl

deleted_user 10/24/2007

well...NF affects nerves..muscles....joints...basicall everything. Pain varies for different ppl. My tumrs are 99% on the inside..from outside they look like bruises. I hurt and achy a lot...i cant stand ppl even touching me some days...or poking me it hurts. joint pains...and a lot of others....but it varies...days are different...

deleted_user 10/24/2007

I can relate to the touch even causing pain. With my FM a small soft poke can alert all my nerves and take any touch as pain, until I can settle them down, which usualy means apin medication. Dad has never talked of pain even though we discuss mine. I will talk with him soon and see if he has the same problems. As a parent I know we don't always share those things, but I'm 50 now...so no more waisting time. Thanks GMM. He made you very kindly!
Marty girl

Marah 10/25/2007

Most of my tumors are on the outside. They more itch than hurt, but when they rub on clothing they hurt and sometimes bleed. I have had a couple attached to nerves on the inside which were agony every day until I had them removed. I can't imagine the pain of peeps who have them on their spine. I wish we could educate docs on this.

deleted_user 10/25/2007

I don't have any pain at all from NF & in listening to Dr.Scott Plotkin (Harvard Med Neuro-oncologist) at a recent medical symposium, he strongly believes that pain is associated with Schwannmatosis (part of NF) which is a sub-cateogory of NF. So many docs have different opinions...

deleted_user 10/25/2007

Thanks Tigergirl,
I will look into this sub catagory of NF. I hope any progression you may have does not include pain. Chronic pain sucks! ;>)
Marty girl

deleted_user 10/26/2007

Hi there. I dont really get alot of pain except in my fingers. They are especially bad when it is cold, the pain is agonising, also when I knock them. Sometimes it feels like an electric shock, the pain can last seconds to minutes. I do get slight back ache sometimes but I think that is my posture. I get alot of headaches too but I dont drink much, I know I should. Your dad may not have pain, everyone is different. My sister gets pains in her fingers and toes.

deleted_user 10/26/2007

I* also have NF and FM pain is like GodMadeMe said for me mine are on syatic nerve and main nerve in foot in a hip and now I also have one in my left hand shoulder and in my neck.Pain is constant for me.I do take Kadian it is controlled release morphine and you can't even tell you have takin it cause you feel no doppyness.It starts at 10 mg and goes up to 100 they do help alot!I also had a recomendation from a friend here for Zanaflex, it was used as MS muscle relaxant but has also helped with pain.Cold packs can also help, tried patches but they hurt to put on and off tumors, mine are very sensitive to touch.

deleted_user 10/28/2007

Hi
Im 44 and in the last 2 yrs I have had pain mostly in my arms and wrists I have had numbness in my hands. Is FM common for people w/ NF.

deleted_user 10/28/2007

Thank you all for sharing your experiences about NF pain. Having FM my experience with pain is a mix of roaving dull pain to fixed acute pain. One or the other is always with me. As for Dad, who has NF, I think I can talk to him with a better understanding of what he may be experiencing. Thank you all so much!
Marty girl

deleted_user 10/30/2007

I have a lot of pain (most of my tumors and growths are on the inside) mostly sciatica and spinal where I have a tumor compressing on my spinal cord.

deleted_user 11/17/2007

The Neurofibromas I have are all on the inside. They always hurt when the got hit, pushed or bumped. It wasnt until recently that some of them just stared hurting without getting hit. The only ones that do ache are the ones in my biceps. My hands are also starting to ache. i actually had a neurofibroma removed off my ulnar nerve (the nerve that goes through your arm, elbow, and down to your pinky and half the ring finger) this past week.

deleted_user 11/18/2007

Thanks again everyone,
I'll be heading out to Dad's a few days before Turkeyday to help get things set up. We are expecting about 21 family and friends. I should have some time to talk with him and scope out if he needs to see Doc. for pain. I hope everyone has a great day. Thanks again, I'll let you know how it goes.
Marty girl

deleted_user 01/26/2008

Hello everyone,
I did talk with my Dad and was very relieved when he said he was in no physical pain. That being resolved, I do know he strugles daily with his looks. . I have tried to be supportave but know that this is his battle to fight and my urging him to just 'get out there' is not what he needs. My Mom was able to 'get him out' socialy , but with her death over seven years ago...none seam to compaire to her in delivering the encouragement he needs in seeking the company of others, even those with NF. I will continue to try and listen deeply so I can help him when he is ready.
Thanks to all,
Marty girl

deleted_user 02/04/2008

i have nf2 and most inside but the one on the outside are like bumps

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