What is the best way to discuss pain control issues with my pcp now that I’ve been diagnosed? She has me on a really low dose of vicoden my neurologist has me on backlophen and rhumo put me on gambapin. I’m still waking up several times per night and sometimes the pain is not bareable. I’m a lot full of anxiety and often snap at my fiance and my two sons. I understands I’ll never be pain free however I believe I can be a fair deal better. Any suggestions will be great help
My suggestion would be to talk to your doctor if the meds are not working for u. Tell them u need something stronger. This may take awhile to figure out as everyone is taking something different. I take gabapentin and Vicodin. It doesn’t take the pain away 100 percent but it is better than any other combination I’ve tried so far. Good luck to you and keep us posted.
Mel, I try to do most of what I need to get done in the morning. By 12pm I take 500 mg Vicodin or a nap. Then the Vicodin. It allows me to move more freely. I also take 60 Cymbalta and Xanax when I’m irritable. My neurosurgeon doesn’t recommend any nerve blockers. But to each his own. You can’t always get everything done and that’s ok, there is always tomorrow. I’m still trying to sort out what’s important and get those things done. You do need people around you to understand what you’re feeling. I tell them it’s like having the flu all the time. You may need more Vicodin. I try not to take it until I can’t stand the pain anymore. My doctor recommends if I have a lot to do t take it anyway. Hope you feel better.
it sounds like you need a fibro specialist - someone who’s going to look at what all these doctors are doing and put it all together. Easier said than done. It is tough when you’re first diagnosed. You’ll get bounced from one doctor to another… been there unfortunately. There’s a great fibromyalgia toolkit document I got from the American Pain Management org but they had to shut down due to funding. I have a soft copy but I’m not sure how to upload it. I know it has some great advice for newly diagnosed people. The answer may not be in conventional medicine. There are some wonderful supplements - Tumeric and Boswellia are the best. Try to find a fibro specialist.
Well, it is well documented that opiates really do no not work for people who have fibro. My pain dr has me on Nucynta. It is for nerve pain. It works pretty well.
My heart goes out to you. I would suggest working with your pcp only to get things straight. Too many doctors--do they coordinate their findings and meds? This is very important. Read about your meds, uses, dosage and side effects. You MUST be proactive and don't let the doctors intimidate you. It is your body, your pain and your life. Take charge and read "My Name is Fibromyalgia" posted on this site. Share it with your family and friends.
The research does show that opiates do not work well for some people with fibro but they do work for others, like me. Our bodies all react differently to different meds. I feel fortunate to have been pressured by my doc into trying the MS Contin. Pain on a 2-3 level is much more preferable than every day pain on an 8,9 or10 level. I hope that you find something Mel. Just remember that some meds, like gabapentin, take a week or more to really kick in and start having an effect. What makes me mad is that the bad side effects usually start right away. How unfair is that? But then, life isn’t fair or none of us would have a need for this support group.
I agree, Avenk. There is so much to be thankful for and grateful for in spite o fthis problem, or maybe because of it. If we allowed ourselves to become mired in the “poor, pitiful me” mindset then we would shrivel up and die and awesome things like getting our bathroom painted would neve great done. I would rather it take me two weeks to trim my hedges than to not do it at all. I am still a vibrant, spunky, mischievous and somewhat clever (if I do say so myself- LOL) girl who has a lot to offer. Not to say I don’t get in a funk sometimes but hey, what human being doesn’t. But, dang, stop the bitching and moaning and get on with life and get the most you can out of life, whether you love playing with the grand kids, baking yummy chocolate fudge and other delights, or just sitting outside in the sun enjoying a beautiful day. Life is good. We are alive. Live it! And for Pete’s sake, have a sense of humor. Humor will get you way farther in life than almost anything else. Ok, getting off my soapbox now but you started it! LOL
Yes, sorry that you misunderstood cuz my comments were not directed at anyone in particular. I just like to be as upbeat as I can when I can and I like to have fun. I need emotional support just as much as the next one but I we all have our own way of eating with things. Gosh, if we were all the same, I hope that everyone would be just like me. JK. LMAO
i think u just need to be honest with your drs and tell them u need a higher dose on the pain meds. do u take cymbalta or lyrica to help control your pain those meds can help decrease pain too.
i want to add that u would be better off taking narco instead of vicoden. its just like vicoden but with less tylenol so u can take more in a 24 period w/o overdosing on tylenol. it comes in three strenghts 5/325, 7.5/325, and 10/325. i need the highest dose now but i didnt years ago your body will slowly need higher doses of meds. dont be afraid to ask.
keeping a pain diary can be very helpful too. i see someone mentioned one to u. i record how i slept(if i got ant sleep at all) and what is hurting and how bad. i also record if i couldnt do much like even shower. make sure you take this to your drs so that can see how the pain is effecting u. its great that u do understand that being painfree with fibro is not a realistic goal but keeping your pain to a managable level is. that was very hard for me at 1st.
i love this how do u find thingss like this. i copy and paste them to my fb page for my family to read. this thanksgiving people didnt ask much out of me and i was very greatfull. i think that they feel just because i am younger that i should help more but they dont stop to think of how painfull this disease is.
thank you for this so we can share it with our family and friends
No I do not currently take cymbalta or lyrica. I am really scared of spending the rest of my life like this. Last night was horrible. I think I slept maybe 4 hours total. Today my whole body aches, i have a terrible headache and my vision is blurry.
This is why I see my fibro doc for everything. All my meds go through him and say like I need dental work done my dentist contacted my fibro doc to do my presscriptions. Opiates are different for everyone. I can tell you that they do work for me. I wouldn’t be able to get out of bed let alone work without them.
Have you tried a melatonin for sleep? It works for some but not for others.
Mel, I think there are docs who have more of a knowledge base about fibro and who treat fibro more. I know that I did not return to the first rheumatologist I saw because he did not “believe” in fibro and basically told me there was nothing wrong with me. I have an appointment with a new one in a couple of weeks and I am hoping that she will be better. In my opinion, the younger docs are going to be more up to date on fibro and its treatments and I think also more open minded that fibro actually exists. I think it can also depend on where you live and the docs you have access to. I live in a pretty small town and the docs here tend to be not as educated and up to date as docs in larger cities. Also, access to specialists in our area is limited. There were only two rheumatologist a in this area so wait time for an appointment was about 4-6 months. This new one came here from New York so I am hopeful that I will get good treatment from her. Good luck to you- don’t stop until you find a good doc. I have been to over 20 docs in the past year or so. (I also have another issue going on that required many appointments cuz they kept telling me it was all in my head and nothing was wrong with me and it turned out to be a tumor in my esophagus that I have since had removed.)
