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Neurofibromatosis

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Neurof
Neurof

Hello my name is Jake and I am new to this forum. I was curious if anyone here has ever been diagnosed with neurofibromatosis or any types of growths on nerves in arms or legs. I have pretty sever fibromas growing on my radial and ulnar arteries in my right arm. I have been operated on 3 times to remove some of the fibromas (cysts) and it is continuing to grow and cause more pain. I would leave to hear if anyone has this, what do they do for pain, how bad the pain is and things like that.. I can't take this pain anymore. Thank you.

1 like, 4 replies

4 Replies

  • Peonygirl1
    Peonygirl1 Neurof

    Posted

    Hi Neurof, I have not heard of your condition do I can't help you thre. I do deal with nerve damage pain and it is a full-time job to monitor yourself and research the ways, procedures and medications. I read an article that helped me and the main message is (WARRIORS)!  We are indeed just that , we fight a. Invisible disease and quite often are not understood by others in our lives. It takes a warrior to keep on fighting for help and some kind of life. Our new normal is a challenge and it I also depressing.  I hope you will find relief. You need help to handle this 25/7!  Pain management professionals are best suited for this malady. Run don't walk to them as they can help. Best of luck and hope you can get some solace from this site. Hugs are on the way!!

     

    • Neurof
      Neurof Peonygirl1

      Posted

      Thank you peonygirl, it definitely is a full-time job. I am in kind of weird spot right now. I have. Send on pain medication my whole life. I was tired of doing the same thing all the time so I went back to school and got my bachelor degree in respiratory therapy. I started looking for a job but no one would hire me while taking the pain medicine. I had a tough decision and ended up stopping all my medication.. the hardest thing I ever had to do. So I got a job and was working a good job but I'm no longer am able to do it with all the pain. I know.. stupid but I went to school for 4 years to do it. So now I have a doctor, in the process of getting a neurologist, neurofibromatosis surgeon and pain management doctor. The doctor gave me some 5mg hydrocodone and cymbalta. Better then nothing but I was on 30mg oxycodone q3h and 2 80mg oxy. So you think pain mama will take that into consideration? I've only been off for 6 months. Also, do you take any SSRI or SNRIs like cymbalta? I've been getting crazy muscle twitching, trouble sleeping and fast heart rate with cymbalta.. wanna know if there's anything that won't do that because it does kind of work. My doctor said to keep on it for a month but there is no way. So what do you do for your nerve pain?

  • Peonygirl1
    Peonygirl1 Neurof

    Posted

    Hi, I too take cymbalta and it raised my blood pressure which was handled wan blood pressure pill. Worked well! I have Nevro implant nerve stimulator which I am still trying to find the correct settings for best results. Not sure this is really helping me that much. Also on morphine for pain etc. The cymbalta and morphine give me insomnia (painsomnia), but need help w morphine to have a somewhat workable day. I feel so lucky that I have easy access to pain management Drs. Who truly have the knowledge to help and know what procedures etc. might work. I have had them all, nerve blocks, steroid shots and on and on. None work for my nerve damage do that is when we tried this implant device. I am so sad to have lost me and still trying to find me in the new normal reality. Read an article that helped me to better understand the effort it takes to sorta have a life. Term is WARRIOR! It is true it does take a warrior to cope with all of this. I am sending many hugs and my best wishes are w you! A long journey ahead!!!
    • Neurof
      Neurof Peonygirl1

      Posted

      There's gotta be a drug that works like cymbalta without those HORRIBLE side effects. I too could not sleep on it for the life of me. I'm going to ask my doctor the next visit for something similar. It's funny how different medicine effect everyone differently.. morphine knocks me out even small doses. I had best results with oxycodone. I am slowly finding out that the key to successful pain management is finding the right doctor. Nerve blocks didn't help? Pain does take away your ability to have a 'normal' life. It does take a warrior mentality to deal with! It's hard to explain that to people who don't know what it's like to deal with 24 hours a day.. kinda lonely

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