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Old 12-12-2012, 09:02 PM   #1
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Fibromyalgia, pain meds, & how to talk to my doctor

Hi,
I'm new to this sight and I'm not quite sure what to do. I have been recently diagnosed with fibromyalgia. I really don't know too much about it, and other than the commercials I've seen, I've never heard of it. I was actually a little angry when my doctor told me that's what he believes it to be! I figured there was something wrong with my back, like it was broken! lol! Anyway, I have begun to come to terms with it. It actually makes a lot of sense to me now, I've been in pain for so long, have had stomach problems, terrible migraines for years, and most recently, (maybe past 3-4 years) deep all over aching. I think what is the worst for me is the lower back pain in and around my tail bone, hips, waist, legs,, etc. Without going on for too much longer, I am lucky to have found a pain specialist who, so far, seems to believe and understand me. I've been on pain meds for a year I guess, and just recently was prescribed Lyrica and Cymbalta. The Cymbalta has helped me so much with depression and migraines. The first dosage of Lyrica really had no effect on me. He's increased it once so far to 75mg. twice daily. For the first month it made a huge difference. I was shocked to feel better...I had forgotten what it was like to actually feel good and have energy. This is now my 2nd month on it. But I feel like its losing its effect. I'm exhausted. I hurt and I'm feeling depressed. Is this normal? Is this a "flare"? I'm wondering because I had more energy earlier, if I overdid things. I have let things go for so long that when I was feeling good I started tending to it. Paperwork, housework, etc. I don't know, I just don't get this stuff. I'm sorry!! I said I'd try to keep this short!! Ooops!! My last question is how do I talk to my doctor about my pain meds? I think they need to be tweaked a little. I do think I know my body a little, I can almost tell I guess, when things are changing, either for the worse or for the better. There is so much crap associated with pain meds that makes it difficult to discuss. Thank you for listening...good luck to all of you.

 
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Old 12-12-2012, 09:37 PM   #2
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Keep in mind that neither Lyrica or Cymbalta are considered "pain meds" in the traditional sense. Even though they help with pain, they are neither narcotics nor addictive. So there is no stigma associated with them, and dosages can be adjusted to fit the need. I wouldn't hesitate to just tell your Dr how you feel. It is not uncommon for some meds to work at first, then lose effectiveness a bit, and the dose can be bumped up then as long as you are not at maximum dose.

 
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Old 12-13-2012, 06:14 AM   #3
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Just tell your doc like it is, the meds are not working as well as they used to. I got started at the lowest dosage and when i feel its not working I say so to my dr and the dose is increased.

It's entirely possible you are in a flare, it's so easy at first to over do things and push yourself to the edge the first few times you feel almost normal. In time you'll learn when to stop so you don't push yourself into a flare.
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Old 12-13-2012, 07:46 AM   #4
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

hello and welcome,
just be honest with your doctor. of course you know your body best! you live in it. when i deal with a doctor i make sure they know i am tuned in to my body and i have final say over what will or will not be done or taken. i have 15 doctors and they must be on the same page as i am or they are useless to me. be your own advocate. do research and go in with your questions writen down so you don't forget any.
as far as talking about pain meds, it's the same as talking about any other med. use caution with dosage as you do want it to work the rest of your life, not just now. i have another disease that i do take narcotics for, tho i never take as much as the doctors would like me too. saving it for when i get older. giggle, in my late 50's now.
remember you are seeking help for a somewhat stable state of being. any doc with half a brain will see that and not a med seeker. know what i mean?
peace,
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Last edited by Administrator; 12-21-2012 at 05:07 PM.

 
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Old 12-16-2012, 02:06 PM   #5
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Thank you so much for your advice, I would like to be that confident person when speaking with my doctor. I'll give it a try. I knew when I had my last appt almost a month ago that I wasn't feeling well and the meds needed to be bumped up a little. But he doesn't want me to "rely" on my meds to feel better. He wants me to exercise and seek counseling. He would like me to come in to my next visit telling him I'm exercising and feeling more positive....ok..really? I'm not sure what "not relying on my meds" means. Seriously? I haven't felt good in forever and once I start to because of the meds, he doesn't want me to rely on them? I don't get it. I really do like this doctor, he's the first to listen to me and really try to help but I'm starting to feel like the rug is going to be pulled out from under me. Anyway, now I have to wait until the beginning of January to see him and I feel terrible. Once again, thank you for your help, its greatly appreciated.

 
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Old 12-17-2012, 07:15 AM   #6
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

hi debra,
i know what your doc means. it really does help to have some help adjusting to the new you. a shrink is the best route to take. i did for 7 years. that's where i rediscovered my power and strength to be happy and in pain. what your doc means is not to only count on meds to help you. wants you to get help and help yourself too. your mental self and your body as much as possible.
in the beginning i was afraid and did not speak up. i ran into doctors who were pill pushers and not interested in helping me help myself. so for a year i did nothing but take the meds and be in la la land. it was not pretty. nor was it fun. and i was still in pain. i had one doc tell me to find a shrink and get help. boy was i mad at him! like a shrink and a walk are going to fix me? well, i fired him. a year later i heard his words echo in my mind and at last got what he meant. don't do this alone. so i got help. i learned new ways of looking at my life, coping with my reality, weeding out the user friends, learning to enjoy time alone with my thoughts. so much and more. i bloomed in that room to become the flower of joy that i now am. no matter what happens with my health i am at peace within and that's heaven girl.
my dad used to say, when speaking to someone whom you feel is intimidating just think of them sitting on the loo early in the morning going poop. no one intimidates me anymore. giggle.
no med can give me the tools i now have for living my life. that i needed help with. i hope you can see the difference now and i hope i made it make more sense and not more confusing, giggle.
much peace,
blue
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Old 12-17-2012, 09:01 AM   #7
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Hi Debra, I have found deep tissue bodywork, and you have to be religious about body work too,not just once a month, but every week. I was using sativia (med mj) for energy, but an interesting side effect this past week, Ive not used the med mj for past 3-4 days b/c I got busy, and I STILL feel energetic. Could it be the bodywork? Learn to relax, take deep breaths while you are getting your deep tissue massage - it is expensive b/c med ins does not pay, but I have been considerably healed. It's taken regular (every week) for about 6 months now for me to feel good. Best wishes

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Old 12-17-2012, 09:19 AM   #8
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Thank you Grizz55, I appreciate the advice. I wish I could afford to do that, right now I am unemployed. I will make note of this though, and once I'm back to work I'll look into it. I am filling out an application for my local YMCA. They provide memberships for low to no income families. I'm thinking that aquatic exercises may be more tolerable for me. Also using the hot tub/sauna might provide some relief. I'd also like to use an exercise bike. Thank you again! Take care

 
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Old 12-17-2012, 09:35 AM   #9
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Hi Bluelake lady, I do understand, thank you I so badly want to feel better! Last month I seemed to be feeling so much better! It had been so long since I felt that way! I had energy and did things I hadn't taken care of in forever! lol! I am applying to get into my local YMCA, they provide memberships for low income families. I want to use the pool, I feel that low impact exercising will benefit me. Using their hot tubs and saunas should help to relieve some pain too. I have had counseling in the past, several years in fact, for depression/anxieties. But not for pain, at that time I really didn't think the pain was anything more than having 3 kids, fatigue, etc. I guess I was hoping I wouldn't have to do it again. BUT I will if it means I can change my negative thought process into something more motivational!! Thank you for all of your help, I hope that I can offer you some support or advice whenever you feel the need! I have called my doctor to see if I can get in sooner as I'm just not feeling good at all. I will TRY to be more confident in my approach!! aaahhhhh!!! I hate this stuff!!!

 
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Old 12-18-2012, 08:32 AM   #10
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

hi,
it's worth it. it was for me. i love my life as it is and that feels wonderful. i don't even mind the 15 doctors i bounce around to as needed. i pretend it is an outing and dress up for it. i live in the country so any occasion works for me to dress up in my pretties.
swimming was how i started out getting my body back. it works great. nothing takes away the discomforts of the body like a warm float and a good swim. i have a hot tub and yes, it does make a huge difference for me. i did deep tissue massage for over 2 years and it was helpful, but my body changed and now it causes more pain.
we have a health club that gives discounts to people with a script from their doc saying they need a pool or whatever. maybe you have one too? if not ymca is a great place to meet people and get strong as you can get.
being happy is a choice i make every moment of every day. some days it's work to stay in my happy place and sometimes it's a breeze.
peace,
blue
ps. do you best not to hate any aspect of your life and health. hate is a draining emotion and it's useless to all. my favorite saying i made up is, i am not a fighter, nor a survivor, i adapt. adapting is easy compared to struggling. giggle.
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Old 12-19-2012, 10:46 AM   #11
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Welcome!
I haven't read what others said so I'm probably repeating... Just can't seem to focus enough, pain so bad anymore I'm not on her much these days...
Anyhow... It won't seem like Lyrica is working. But, if you go off it you will notice. I don't recommend doing that though. I've weine myself off different ones & always end up in worst shape. Cymbolta, Lyrica & Nuerontin all made the fatigue worst for me which was the last thing I needed. I'm on Savella now & love it! It will make you sweat easy though...
My dr thinks I have migrains. Had head constant headaches since I was a teen & pretty bad these days. But I have vomiting issues which we aren't linking entirely to migraines. Which brings me to another topic.. Drs will blaim fibro for everything. Even vomiting issues for two yrs they brushed off... Now because its so bad I'm at my drs pretty much weekly making her help figure out what's going on. If I didn't drive her crazy I'd be getting no help! So please make sure they are treating your migraines & not treating them as just fibro headaches. It's easy for us to brush it all if as fibro also...
With pain I take 200 mg of tramadol daily. Unfortunetly it's not doing anything for me. I'm thinking about getting a medical marjuana card. Never thought I'd go that direction. But it's better than all the meds that cause more problems...
My drs won't prescribe me narcotic drugs which is probably good because they would also quit working after awhile.
I'm always in a flare. Something else is wrong which seems to make my pain & fatigue worst. Hopefully will get answers & learn how to control it better. But what I have learned.... When you over do it, it can take you a week of rest to recover... If you don't over do it but do alittle more than usual, it will catch up & you'll pay for it... Having fibro you have to learn how to live differently, learn to control it... You have to learn to tell others no if doing something will make you over do it or if its too much for you. It's tough & takes time but you will have to learn to put your health first...
I understand the back issues also... I have a bad disk with scoliosis & arthritis. My first fibro pain problem was my back pain getting worst. Then neck pain (dr thought I was nuts). Just seemed to snow ball since. Fibro tends to take something like an old injury that you though was fully healed, & make it hurt 20x more...
Anyhow, I'm rambling... Sorry... Jut know that you aren't alone even though it can feel like it. Coming here has been my biggest help! Especially in the beginning with all te confusion, this board helped me more than any dr could...
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Hypothyroid~ 2003
Back injury~ 2005
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Old 12-19-2012, 01:22 PM   #12
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Welcome to the Board and you will find a lot of good information here. First of all, be honest with your doctor and tell him how you feel. You know your body best. I write a list down ahead of time so I don't forget what to ask about. One thing I would add is to do your own research, and trial and error is going to take place before you hit on things that work for you.

My best to you,
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Old 12-19-2012, 10:15 PM   #13
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Re: Fibromyalgia, pain meds, & how to talk to my doctor

Thefarm, thank you very much for all you've offered! You were not "rambling"! I truly appreciate any and all information that all of you have given and are still giving. I'm sorry though, that you are in so much pain. I know what I'm going thru on a daily basis, and it sounds 1000 times worse for you. I hope that you can find relief as well as answers. You sound like a very strong person who has been through a lot, hang on to that strength ok? And, I agree with you in regards to this site. I've only know about it for a couple of weeks and already it has helped me tremendously...with advice yes, but also knowing I am not alone and I am NOT crazy! Take care, get rest, and I hope that you are able to enjoy the Holidays.

 
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