talking to docs

Leelee

Don't be greedy, if your pain isn't 24x7 let her know but make sure any perscription does cover your pain - If you need 40 tablets don't take the 20 she offers to shut you up. in other words Do not negotiate, it will make it look like you are drug shopping.

2) Bring a copy of the national guidelines with you on your first visit The protocol calls for Narcotic analgesics when the pain is long term and the other things don't work.(go tho the Important Links post in medicine & treatment there will be a link to the guidelines with a PDF option to print out) be sure to review them before you go. Explain to the doctor that this is a protocol for treating Fibro that you would like to follow & ask her/him if they object. If they do ; this probably isn't a good Dr. to work with.

Remember your health care is a team effort but you are the team leader & the person who is hiring the other members

3) If you are not on pain meds now you need to be willing to try a course of what ever the dr wants to try. give it 6 weeks & if it doesn't work let him/her know that you are willing to try anything but not to keep taking something that doesn't work.

Post edited by: bshapiro, at: 10/20/2007 19:06

leelee

Have you been prescribed pain medication before? My doc had me on Tramadol/Ultram for awhile and I was able to tell her that it wasn't working. So, she saw that I had taken Percocet before (for something totally unrelated) and I told her that I would do better with that as a temporary solution to get through a rough time. I think that you should just definitely stress what you have done to try to manage the pain and you cannot any longer combining that with what your day to day life is like.

I would purely explain your experiences and that you are coming to them to seek their advice. I would be afraid to bring them any kind of paper work that may make them think you are insulting their intelligence or that you know more than them. I don't feel that many physicians like to be told what to do or how to do it. They would rather hear and ask them to press on the sore areas so they get an idea of what's going on. Just my advice, it may be that you deal with a doc that absolutely has a thing about not prescribing pain medication, in which case, you won't get anywhere with them no matter what you do. You have to relate how your pain affects your everyday life or it's not believable to some.

Hope that helps and I hope that the doc you go see will be understanding. If not, then suggest a referral to a specialist that they think can better deal or give a second opinion of what you are going through. My current doc doesn't want to see me again until I go to the specialist b/c she doesn't want to keep prescribing me pain pills b/c she is of the "old school" thinking that anti-depressants over a length of time will assist me in my pain issues. I've tried and failed that, but she objects to long term pain prescriptions, but offers no better solutions.

This is a subject change, But I have to tell everyone tho that yesterday my son was such an angel--he came in and saw me crying (tried to stop b/c of course I didn't want him to see me crying) and my husband was getting ready to go to work but he told my son 'mommy isn't feeling good, take care of her, ok?' and my son came up to me and gave me a big hug and said 'I'll take care of you, mommy.' then he made up the entire bed in blankets and brought me movies 'to make me laugh' (like Chicken Little) and then he layed down with me and was just so sweet to me. We ate pizza in bed and lazed around together--I thought he was just so amazing to me. So I had a bad day yesterday but really enjoyed the special time the opportunity brought for me and my son to turn it into something better....

--Leelee

This has affected my life so much, I mean just my daily life, it is hard for me to get up, to clean, to take care of my son, my husband, my family....and maybe I just really need to make sure I communicate that effectively. I have tried all over-the-counter, have had Ultram and Skelaxin (can't take either, both with awful results) I have been treated with lortab (taking those right now, supposed to give me temporary relief while the Neurontin kicks in, but I am not going to be taking that, at least I tried it, just didn't work for me and not willing to take it, plus soooo expensive)also percocet, neither gives me really good relief but it's better than nothing. Of course the doc's look at me and I'm so little (5'5 112pds) and they think 7.5tabs should knock me on my ass but they don't (high tolerance runs in my family) I am going to have to get to someone that will really be able to treat me right tho b/c this is just too much for me to have to deal with, you know?? I wanted to open up my own business (can't even think about it now) It's just like my life got put on hold b/c of my pain.....and I know you know what I mean.....

Leelee

I think if you can get the doc to relate to you in a life changing way, such as not being able to do what you want, then the doc may understand. Yes, I think that it's best if you can communicate that effectively to who ever it is. Neurontnin actually mad my pain worse, so I quit taking it. I was given the Ultram to cover the inbetween time as well, but it didn't even take the edge off. I couldn't put a shoe on for about a week or two. Luckily, I could wear flip flops to work and the weather permitted that. I hate to see what happens if it's winter time and that happens. I told her my pain was like someone took a sledgehammer and smashed all the bones in my feet, or I could only imagine that the pain I was in was similar to someone who had all the bones in their feet crushed. I think you need to find a specific way to describe the pain instead of a number that they try to give you. Anyone can walk in saying they are at a 10 to get something, but if you describe it as I tried to maybe that will help. She seemed to sympathize with me and agreed that Fibro can be painful. I also told her that my lower legs felt like they were so full they felt as if they were going to burst open. I felt swollen although I wasn't. Just be specific, start thinking about it now, what you could compare your pain to and that you have had to place limits on yourself b/c you can't manage day to day in the pain you are in. There is something out there to help you. I hear others talking about Lyrica for Fibro instead of Neurontnin. I was told by a physician that saw me for my pre-employment physical that Neurontnin isn't really going to do anything. The only thing it did for me was lower my blood pressure to 90/40 something and caused that increased inflammation feeling.

I've also tried to meditate a little bit to myself when I'm trying to go to sleep. I breathe in and out at a slow pace and think to myself, this is not pain I'm feeling, this is not pain I'm feeling, over and over. I know it sounds silly and your brain will fight you at first, but you have to try to convince yourself otherwise. I was in tons of pain when I started to do this and on Percocets. So much pain that I couldn't lay the back of my right leg on the bed, not even my heel, I'm talking, nothing could touch my leg w/o inducing excruciating burning and pain. It did get a bit better though when I started doing that silent meditation to myself and it helped to put me to sleep when nothing else would help. Remember, we are all hyper-sensitive to stimuli...that could be loud noises, bright lights, constant rubbing of clothing on our skin, walking "too much", etc. We have to try to calm our brain from those sensitivities b/c pain medication will need to be increased at certain points b/c we will become tolerant to it and need more every time. I don't think that there is one common medication or meditation or physical type of release that helps every one of us the same way. We are all different, but the same in our frustrations and sick and tired of being sick and tired. We have to explore all the options and not settle for what others think we should or should not do.

God it's crazy how much we sound alike here in experiences!! I mean it's really cool to find this forum b/c before it felt like it was 'just me' you know?? It's really good to be able to talk to other ppl that actually feel the same and know what it feels like to experience fibro pain, b/c you have to have it to know what it's actually like.

When the cold moves in it feels now like it just sinks into my bones and my feet bones Hurt, feels like the cold just settles and my feet and ankles really hurt, not always with the cold, it can be at anytime that my feet and ankles hurt, but the cold makes it worse. Leg pain is very common and see I had 3 extensive hip surgeries for hip displaysia about 10yrs ago and when all this pain started the dr's thought I needed a hip replacement (which I eventually will) finally they diagnosed me with fibro, but when the pain first started I could not Sit on my right side even, it hurt sooo badly and still the right side bothers me more than the left, and my back will really hurt too all the time along with my right hip and leg and I also have tender points throughout my body that come and go....do you have any numbness? I get numbness through my right leg sometimes. I will try the meditation, that might help. Doesn't hurt to give it a go. I can't take Lyrica, I had bad side effects from it.....so.....if you try it, hope it works for you.

--Leelee

I don't endorse many programs, but this one gives me relief. Honestly I believe it has more to do with my scoliosis than the fibro, but Pete Egoscue's theory is very interesting. The excersises are simple and I saw a 90 year old man in there being treated. The program is adjusted for you and there are generic programs available also. They are experts on hips!

I've had severe right hip pain for years. About 8 years ago, when I was working as a Nursing Assistant, it started. I experienced sciatic pain for years after that, I still do sometimes. I find that is "curable" with Ibuprofen b/c it's literally inflammation and Ibuprofen is for inflammation. Ibuprofen doesn't cure my pain, but it makes the inflammation of the sciatica go away considerably. I've had every kind of x-ray, MRI, CAT Scan imaginable to try to figure out what's wrong with my hip. Every time the results come back as normal. I have been tested for every kind of arthritis and they come back negative. I've tried physical therapy with no success. The last time I said something, it was recommended at sometime I would probably need a hip replacement. But, since I'm "young" at 28 the doc says that I shouldn't b/c hip replacements aren't as stable and wear out much faster than our bones do. So, I just have to deal with it for now. I can't sleep on that hip at all. I can't sit for long periods of time b/c of my hip. I take frequent walks at work to readjust myself. I was going to a chiropractor after a car accident. Towards the end of my treatment, they started working on my hip b/c I experienced tons of pain when I had to lay on my right hip during the adjustment treatments.

Cold weather, actually the change in the seasons from Summer to Fall, is the worst time for me as well. It does feel like my pain is amplified 100 times over or more. When I wake up in the morning, it takes me about a half hour these days to even get going. I don't stand long to do my hair anymore b/c it hurts so bad to stand in the morning. The hip doesn't help that out either. I do get numbness in my legs and a lot of burning pain. My skin gets spots all over that are really hypersensitive. It's hard to wear regular jeans and long sleeve shirts b/c they irritate my skin so bad. I also can't go a long time without shaving my legs. It's like the more that the hair rubs against the inside of my pants, I'll have that burning sensation for days after words. Nothing gets rid of that for me. Ibuprofen does sometimes b/c that's a form of inflammation, but it doesn't always work.

Do your arms hurt too sometimes? Mine often feel like they have lost all strength. In the morning, it feels like my hands/fingers are swollen (but it's not visible) and it's hard to grab a pen to write or even type. It makes working a true chore I tell ya, but I'm sure you feel the same. If I have to drive a long distance, my legs and arms get so tired that I just have to sleep as soon as I get out of the car.

When I was about 10-12 years younger, every time I got the flu or a bad cold, my skin was untouchable. I remember my mom trying to do the comfort rub to make me feel better, but I had to tell her to stop b/c it hurt to be touched. So, I feel like this Fibro has been going on for quite a long time. It's crazy when you start to think of all the things that no one was able to figure out why you are feeling a certain way or why something is happening.

Where do you live?