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Re:Hi, it has been a while...sorry
- 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!):
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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, melanie
I 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 Intergalactic Allied Forces, Horsehead Nebula bound
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"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
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