Responses

I wrote to many different forums yesterday. I needed to do a survey of chronic pain sufferers. I need to feel legitimized about my situation. When I posted Facebook, I got back a few responses, but it wasn't the type of thing I was looking for to help me feel better. I didn't really relate to the people who responded.
I also wrote to my NF list about the issue. I hadn't written in a while, and I realized that is most likely the place to really do the survey- to have people who went through what I went through. The answers I received filled the entire “digest” of the list today. It really helped to know that I am not alone with this type of pain.

The letter that I wrote had basically what you guys know about my history of NF, surgeries, PVNS, etc. I ended my letter with this:

“...You [NF list people] can pipe in here and enlighten me if you relate to this every day pain thing, or if it seems unusual to you. My last MRI was clear. My doctor said "It is a map of a war zone, but it is free from disease." He referred me to the pain clinic in our hospital.
All input welcome! I need people to identify with me- it feels so hopeless sometimes.”

Now the responses:

"I don't post very often and can't remember the last time but had to respond to this.

I have constant pain in "Bailey", my residual limb. [see! I am not the only one who names wounded body parts!] I had NF 8 years ago, my pain varies from day to day but is always there. I see a pain doc who put me on Lyrica as well as some other pain meds. I was told that it may never go away, there is just no way of knowing. On a scale of 1 to 10, 10 being the worst, on a daily basis I average a 6 sometimes a 3 or 4 on a good day which doesn't happen very often. Daily exercise of the affected area helps to minimize the pain as well as massaging the area daily. I hope this helps you in some way, I know it's not easy but all we can do is cope as best we can with the pain.

This next response is one I was so grateful for:

"I am just 6 weeks shy of my 2 year NF survival anniversary. I have pain daily also. Pain medication works for me most of the time but it also knocks me out, and my doctor recently put me back on Lyrica too, but I don't know how much the Lyrica actually helps. I try not to use the pain meds except when it the pain is too much. My left leg was what was attacked by NF, and when I have been on it too much or doing to much is when I am at my worst pain, though I do have pain even when I am doing nothing. Sometimes I feel like it is because the nerves may be coming back to life because the intensity of the pain is so random. In fact, I have to go for both an arterial and a venous doppler study to see if there is something else going on in my leg. Walking long distances is painful and tiring, but like you I am taking care of kids and doing errands and doing what I have to because I have to and because I am not going to let what happened to me bar me from my everyday life.

Are you working with a doctor for pain control? While my doctor seems willing to write me prescriptions, she doesn't really seem to understand the management that is needed for the after-effects of this disease. I am not sure that too many doctors would or do understand it unless they have been through it themselves. Some of us may look completely healed (physically) and functional from the outside, but it is not necessarily the case."

Now this next response talks about a technique that I had heard vaguely of, and now I know someone who is doing it.

"Sarah has brought up a very good topic, which I believe is a subject that all of us NF Survivors have dealt with and still deal with on a daily basis. I don't know about the rest of you, but following my case of NF, I was said to have a medical condition termed an autoimmune disease. Regardless, in my particular NF case, after trying most all of the relevant pain medications in existence at the time, including morphine doses even being doubled without any relief from pain; I was given a referral to an Anesthesiology/Chronic Pain Specialist, who after much thought and study of my case, decided to try epidural (steroid/pain) shots to my various nerve bundles coming off of my lower spine. With the help of special medical equipment and lighting, my pain specialist could see within my body the nerves associated with my feeling of pain in my mid section as well as legs, and he deadened them, which gave me immediate relief from pain for the first time in my life since my case of NF. Consequently, I see my pain specialist as needed for more of the same type of epidurals. After receiving my last dose, I have gone for almost three years now without having any significant pain in the lower half of my body. Oh, I still have feeling in the lower half of my body where my NF occurred, and can walk and have self control of my body as usual, however; I am minus the constant pain that I was in prior to my beginning of the nerve deadening epidurals. It is up to each individual's body as to just how long such epidurals last, as everybody's pain threshold and tolerance level are different."

And this in from Hawaii:

"Pain is a big problem. As the years go by the pain lessens, but its still there. I am fortunate that I live in a state where medical cannabis [marijuana] is legal. I am a staunch advocate for it. As least I can use it and function normally."

There were more, this is just a sampling. Seeing these letters helps me emotionally, and also gives me the push I needed to get an appointment with the pain clinic at Soroka. I hope my doctor can help push it along so I don't have to wait so long.
The pain can be so debilitating.