Subject:  Re: Thank you for the invitation |
Author:
Casey
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Date Posted: Wednesday, December 04, 08:23:22pm
In reply to:
Tess
's message, "Re: Thank you for the invitation" on Wednesday, December 04, 05:48:22pm
Tess,
The flexible plan is really quite simple from the perspective of my doc. We try drugs for 30 to 60 days at a time (added to my gentle stretching and veeeeeery limited T'ai Chi (the complete idiots guide to t'ai chi))to see what works best. She has put me on the "I will call her back ASAP list" so when I call in and tell her nurse I am in pain, she gets back to me at the end of whatever patient she is with.
So far we have tried the following -
1500 mg of Relefen daily
20 mg of Lexapro (replaces Celexa, almost no reported side effects, and certainly none of the worst from Celexa)
50 mg Ultram up to 8 daily(as needed)
65 mg Darvon 1 or 2 every four hours (as needed)
.50 mg Xanax (occasional use as needed)I use this for audio and visual overstimulation (when my huusband's family comes to visit, there is a party...), stresses me out to the extreme.
10 mg Ambien (as needed for sleep)maybe twice a week (If I can get at least two sound nights sleep per week, the flares don't happen as often, and are not as severe. I have always had trouble sleeping, and fibro only exacerbates the problem. More nights than not, I sleep 3 ok hours, then catnap till morning.
I am trying to map environmental triggers like weather, activity levels, travel, meetings, and the like. There are some things I cannot cut out of my life, so I try to make sure they are not in conjunction with other more optional activities. I try not to stay in the office any later than 6:00 PM each night (some days I only make it till 4:00 PM), and try not to have any consecutive nights past 6:00 PM, I do not start any earlier than 8:30 AM on any given day, and I give myself permission (very rarely) to sleep in if I had an exceptionally bad night. I am the boss, so I really work hard at not abusing that because it sets such a bad example.
My doc turned me onto the website, and has asked that I share anything new I find regarding alternative treatment methods. Should pain become unmanageable with what I have in my "pharmacy", my doc will meet me at the ER and administer something else.
Since I began treatment, I have eliminated Darvocet N 100 and Ultracet. Both have acetominophen. My liver does a really poor job of filtering any tylenol like products and causes me to feel much worse, increases fatigue and pain, and have decreased Lexapro to 10 mg daily.
I am usually under control with just the Lexapro, Relefen, and an Ultram in the morning and one again in the afternoon (today I have only had one and feel GREAT). On exceptionally bad days, if Ultram does not help withing 1.5 hrs, I will take one Darvon, and then start the every 4 to 6 hour routine on that. Fortunately there have been very few of those.
I have accepted the fact that what I used to consider a day at 70% feeling good, may now be my new 100% level, so I celebrate the days where a couple of Aleve can cover the aches. So much of it has to do with being diagnosed (I think), it has helped my ability to deal with the pain. I am taking a very active and aggressive approach to learning what I can about the disease, my doc supports me in that, and helps any way she can. The more I learn, the better able I am to deal with what life deals out. That is a big parrt of my control freak coming out (lol).
Sorry this has been so long. I hope it makes sense, and hope too that you find something you can use. I am more than happy to answer any questions you might have, and will answer any e-mails you pop my way clau@compositesone.com.
Have a great night with deep and restful sleep and pain free days to come..
Casey
You are very welcome Casey - glad you are here! I'm
>also very glad to hear that you have a good,
>supportive doctor who is working with you. That is
>key! In agreement with you on how validating finally
>getting a diagnosis is for us. Particularly if you
>have gone a long time before getting diagnosed. Nope
>we aren't crazy and it isn't in our heads.
>
>Any tips or recommendations you would care to share
>about your flexible pain management treatment plan?
>Sounds interesting.
>
>Hugs,
>
>Tess
>
>
>>Tess,
>>I appreciate your response to my "I thought this was
>>an informational support group" post on WebMD. Thanks
>>too for sharing this site with me.
>>
>>I am new to boards and new to FMS as a whole, just
>>diagnosed a few months ago (though it seems I have had
>>it for many years). It was good to find out it a.) was
>>not all in my head, b.)I am not a hypochondriac, c.) I
>>am not just falling apart after hitting a 46th
>>birthday.
>>
>>Doctor is good and very supportive. She and I discuss
>>the treatments, and she offers helpful suggestions on
>>resources, as well as a pain management regimen that
>>is flexible to the ebb and flow of the disease.
>>
>>Have a great night! I have to try and catch up on
>>some rest.
>>
>>Casey
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