Hi Nora & Everyone!
Yes, getting pain management is difficult because so many people are scamming
doctors trying to get pain killers or any other prescription drugs they can get
their hands on. Sadly, if a patient tricks a doctor into giving them
prescriptions when they really don't have a provable pain condition, the doctor
can lose their medical license, have to shut down their clinic, and even go to
jail, so most doctors
really have to have "proof" of pain, including cause & effect diagnosis. Most
neurologists, neurosurgeons and your primary care doctor will not take on the
responsibility of prescribing pain meds, they will send you to a pain clinic
that specializes in pain management.

The pain management for NF is difficult, because you have to learn to use the
pain "language" that the medical profession uses in order for them to properly
prescribe effective medication. If you have the spinal tumors and they grow
large enough to cause pain, you will most likely be prescribed a muscle
relaxant, and that is due to the "charlie horse cramping" that compression of
spinal nerves causes. A tri-cyclic anti-depressant is often the first and most
consistent medication prescribed for chronic pain conditions, it particularly is
helpful to patients who are in such severe pain that they no longer sleep.
Narcotic drugs are sometimes used, but they are a last resort, and they tend to
disconnect your brain rather than stop the pain. It is sort of like they try to
distract your brain so it doesn't allow itself to admit there is pain even
though you still DO feel it!

Sometimes using a heating pad and/or ice packs can help those who do not want to
take medications. Physical therapy can often teach specific exercises to stretch
and relax muscles that are spasming. Particularly if you are not prescribed
anything to help deal with pain, the physical therapy can be very important.
When you have numerous tumors affecting your ability to function or sleep, you
may have to use an adjustable bed, or a recliner or other creative positioning
for sleeping.

My Dad uses the TENS unit and finds some relief from it. I can't use the TENS
units, they make my pain worse. I haven't tried acupuncture, so I don't know if
it works or not. The only resort sometimes when a nerve spasm has made muscles
"charlie horse" cramp, is to have someone squeeze the spasming muscle very hard
until it relaxes. It hurts like heck, but it is the only way I know of to make
those stop. If no one is around and you have this kind of pain, it helps to have
a hard ball of either rubber or like a tennis ball. You can use your bodyweight
to lay on top of the ball, placing the ball right under the spasming muscle.
You will feel it is almost impossible to allow yourself to make the pain worse
by lying on top of the ball, but I have had to do this a lot, and it does help.
Sometimes the area will feel bruised afterwards for a week or more afterwards,
but sometimes it is your only option.

I appreciate everyone sharing their tips for dealing with these diseases.

Becky tumorfarmer



--- In neurofibromatosis2@yahoogroups.com, Nora Fletcher <littlenloud78@...>
wrote:
>
> hi Becky,
>
> It has definitely been frustrating trying to get treatment.  While my
neurologists are knowledgeable enough about the condition to realize that
radiation/chemo would NOT work, i really can't get much help.  they don't want
to remove the ones that would be too risky to remove, yet, they basically don't
have any solutions for dealing with the pain they cause.  I actually had my
neurologist tell me that he's seen alot worse neurological cases than mine and I
should just learn to deal with the pain.  ACtually, since i wanted to treat my
pain with something other than drugs (because of pregnancy/nursing), it was like
I got blown off.   I know there's other pain treatment, like massage, TENS
therapy, ultrasound, etc; I've actually had ultrasound treatment for a while
which worked, but my insurance at the time only covered it for a certain amount
of time.   It's definitely a condition where you feel like you know more than
your doctors!   they admit
> they don't know alot, but that doesn't help.   Hopefully, once we move, I'll
be able to find better doctors/neuologists.   It is nice to talk to other people
who understand.     Well, baby is crying, and husband thinks watching Southpark
is more important so I guess I gotta go. 
>
> Thanks,
>
> Nora