Debra,

Sorry for the delayed response. My computer use is limited bc/ of muscle pain.
This is excellent feedback. Thanks for posting it.

Sharon

________________________________

Date: Tue, 30 Sep 2008 15:55:16 +0000
From: CEFSFB@yahoogroups.com
To: CEFSFB@yahoogroups.com
Subject: [CEFSFB] Digest Number 133


1a.
Hi, it has been a while...sorry From: D. G. Khattab & K. Siegel


Posted by: "D. G. Khattab & K. Siegel" dgkks@... debrasciafu

Mon Sep 29, 2008 10:07 am (PDT)

Dear Melanie,You have my sympathy with the pain you are dealing with and the
difficulties you are experiencing with doctors that already seem to have their
mind made up so they aren't listening. I tried to give a few suggestions below
and since I thought some of them might be helpful to others in the group, I've
sent this reply to everybody (please let me know if this was wrong - thanks!):



Hi, it has been a while...sorry

Posted by: "Melanie Phelps"
mrsmoggles@...


mrsmoggles1



Sun Sep 28, 2008 10:17 am (PDT)

I have been having horrible headaches and pain in my legs and am

frustrated. I have been working on getting sugars lower and am doing

pretty well on that front. I have started going back to gym despite

pain wot walk in pool and sit in hot tub. I have pushed myself to

clean up house a bit and help mom more. And pain clinic doctor still

not willing to give me anything stronger than zanaflex...which helps

with muscle spasms, but I have so much more pain!!

Questions:

1. How do you describe pain feelings to doctors when you can't find

the words for the different pains you have?
Doctors are typically focused on a scientific approach rather than a human
approach due to their medical training and background. I would try to use the 1
to 10 scale to describe the differing levels of pain from different parts of the
body and/or the different causes for the pain (in my case, my back might only be
a 5 out of 10 most of the time but my gut can easily be a 10 out of 10). I
would also try keeping a daily log of what hurts, when, and how bad the pain
was. If you are able to, I would have that log give any details you can about
what kind of pain it was, ex. a burning sensation in my right calf, a throbbing
sensation at the back of my neck, etc. The more detailed and specific,
especially if you can show with a log how often break through pain is happening,
the more likely you are to be taken seriously. It is no guarantee but being
businesslike and scientific sometimes gets through better to medical personnel.
And adding in to the
log and to your testimony the fact that this type of pain caused you to miss a
specific appt. and this other type of pain left you so depressed that you
couldn't get out of bed to go to the park that day - sometimes giving exact
details even of emotional problems caused by the pain will help. When I got a
new doctor at Kaiser recently, I told him that I needed the handicap placard for
my car because we had to turn around and leave when we wanted to go to the Zoo
three times in the previous 4 months, because we had to park so far away that I
couldn't walk up to the front gates AND walk around in the zoo itself without
being in too much pain to function. I immediately got the handicap placard
without any more questions. The doctor obvioualy agreed with my reasons and
liked the fact that I was trying to get out and walk around places with my kids
who are homeschooled.

2. How do you get a doctor to listen to you?
If you have trouble being impartial and businesslike due to the stress from your
pain (and the stress from having to deal with medical personnel to begin with),
I would try to bring an advocate with you. I have had so many years of stress
dealing with Kaiser that I now bring my partner with me to help be my advocate.
If you don't have somebody available to help you, I would write up everything
you need, preferably typed, with supporting documents like your log or a copy of
those pain questionnaires I have had to fill out for various clinics or doctors.
If you have something to refer to, you are less likely to forget some important
detail that might help sway the doctor into listening to you, taking you
seriously and coming up with some suggestions or new meds that might help you.

3. Every time I talk to a dr. I am told 'o, you are on cymbalta,

nuerontin and nortriptyline, that should be helping!' Ummm yea it

helps, but what about break thru pain???
Again a log to detail the times when breakthrough pain isn't being helped by the
above medications might help get you pain remediation for the breakthrough pain.
If your log shows that you are having this breakthrough pain on average of say 3
times a week, it might also help show them that you only need a small
prescription to take care of those times. I would also include in your log how
much non-prescription pain relief you are using since doctors are well aware of
the long term affects of using too much ibuprofen for instance and that also
might help sway them. I would also request that they review your meds and make
sure you taking appropriate levels since increasing only one of them might give
you some relief. Reviewing your meds and checking their side effects against
the types of pain you have been recording might also help the doctor ensure that
you are taking the best combination of drugs at the best levels or else he will
need to review
and rethink what he has prescribed to you. Please keep in mind that all of
these suggestions will only be effective if you have a doctor that will listen
to you and take you and your information seriously. Sometimes it really is a
problem with a specific doctor and you might have to look for another doctor to
ensure that you are taken seriously, but that is never a fun or easy option so I
generally try other things like logs and details first before switching to a
different doctor. One thing I did find out though is that if you are working
with a pain clinic, asking the pain clinic for recommendations for doctors that
they found worked well with them can definitely make life easier and get you
pointed in the right direction to finding sympathetic ears.

4. They are having me take tons of classes, right now i am in a

depression group for 6 -10 classes, i will be going to a pain class in

oakland for 3 hour chunks at a time. I am supposed to go to anxiety

classes and I forget the rest. Some days I dun want to get dressed and

most days going out without someone there next to me is hard.
I would carefully calendar out all the classes you are taking and then take a
long look at how much running around you are doing and whether all of it is
effectively helping you or whether you are so overwhelmed that much of it isn't
doing you enough good in exchange for the stress. Personally I would either
take a depression class or an anxiety class, but not both at the same time. If
you need both, than pick just one to take now so you can focus on getting as
much good as possible from that class without too much added stress (just
getting out of the house and transporting ourselves to classes can be stressful
so I think that should be taken into consideration). I would then sign up for
the next class once you have finished the first one. Any class or workshop on
pain I think should be prioritized myself over almost anything else because the
root cause of a great deal of depression in people with FM or CFIDS is caused by
the severe pain and
exhaustion they suffer. Both I and my son have dealt with and tried a number of
classes since Kaiser offers a number of them, but I have put my foot down and
either walked away from classes I disagreed with (for instance, we didn't need
parenting classes, we needed help getting my son pain remediation and I got
tired of being sent there instead of getting our real needs met) or taken a
break from classes and workshops when they were taking too much time away from
doing things that really helped us like playing board games with friends or
having quiet evenings at home watching a movie together.

5. what works for breakthru pain? in legs and joints and ughh??
That is a hard question and I don't have any good answers other than ask the
doctor. I know that my son got a special prescription painkiller just to use
when his migraines are completely out of control, and it only works on
migraines. I have been prescribed tramadol to help with your type of
breakthrough pain, but I really can't endorse it since it hasn't offered me much
help. Sometimes I have found that heating pads or warm baths has helped with
some leg and joint pain. Occasionally when I have painful sensations of what
feels like deep itching and nerve twitches inside my feet or legs (this is not
on the skin surface, the sensation is usually from deep in the leg), I have used
cloth ice packs to bring down the sensations in my legs but they are neither
pleasant nor easy to use so for me it is a last resort. I would also check out
possible non-traditional solutions as I know that some of my leg pains decreased
when I started taking evening
primrose oil.

6. oh yeah, i finally had enough of pain in middle finger and went to

dr. and was told i have tendonitis in it...what helps with that?
Sorry I don't have many suggestions on that because I thankfully haven't had to
deal with that yet. I would check out a new symptom like that in various ways.
Googling the problem will get you pointed to some expanations that might get you
some suggestions that will help. I would also consider libraries, both public
and medical libraries. Kaiser for instance has libraries in most of their main
facilities and sometimes you can either check books out or just read them there
and get some suggestions.

Ok, sorry, I think I will await answers on the questions I remembered

to ask...don't mean to bother y'all. thank you, melanieI also wanted to
encourage you to find something you are passionate about and using that to focus
on when you are in pain if you can. My son uses videogames and manga (Japanese
comic books) to help him cope and wait it out through bouts of pain. I use a
variety of things from emails and online groups to music to writing (which
includes getting out of the house to go to poetry readings) to favorite shows to
computer puzzles and games (interestingly because my hands don't always work as
well as they used to, I've found doing computer puzzles and computer solitaire
easier because it is easier for me to manipulate the mouse than pick up pieces
or cards so it keeps the frustration level lower). Best of luck with all of
this and try not to feel too alone, we've almost all gone through similar
things.
Debra Grace Khattab

Debra Grace Khattab & Ken Siegel

Homeschooling Jeremy (17) & Vanyel (13) Siegel

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the
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