'A Patient Voice' Community

I agree about how people think you are fine and not disabled because you look "normal" to them. What is normal? It is different for everyone so please don't judge by the way we may look. I went through the judgment thing after I finished withmy chem treatments. Because I was done I was cured and back to normal in others eyes that is. What they didn't see is that I was still fighting for my life and that I still had all my other illnesses they did not go away just because of breast cancer and chemo. So just because a lot of disabilities don't make us look disabled they are deep inside of us and cause all this pain that no one can see. But we sure can feel it and if one person that judged could feel it for a day I am sure they would think differently. They would see why we take pain meds and why we can't do a lot or even a little on most days. They would really wish they could have the day off from work and have the meds to ease the pain because they sure don't take the pain away. I take 7 different meds everyday every 4-6 hours and they just make it easier to get out of bed and do little things that still hurt but I make my self move and do things because it helps me feel better about myself. I feel quilty if I can't do something around the house or make dinner because I am in pain. I klnow it is not something I should feel quilty about but I do. I am sure others of you know what I mean I used to do so much everyday and now I am lucky if I can make dinner and maybe do a load of wash. But I will pay for it for 2-3 days after because my back will hurt like crazy for standing more then 5 min at a time. I can go on and on but I am sure you all know what it is like and could say the same. I thank god everyday that I can put both feet on the floor and that I am alive to me this is a good day no matter what esle goes on that day.So all I am going to say now is stay strong stay true to yourselfs because no one else can do it for you.

Trina - May I suggest going to a Pain Specialist. I have been diagnosed with Fibromyalgia, idiopathic peripherial neuropathy in my left leg and foot, and have chronic back pain at the sacrum, all of which interfere with mobility of any sort. My Internist referred me to the pain specialist. He is absolutely the best thing that has happened to me in controlling my pain! He understands, sympathizes, and actually knows how to treat and manage pain. As respects pharmaceuticals - his business is to help us function in life, and if it means utilizing pain killers, he will prescribe them willingly, after a thorough exam. There are many resources he has that may not be known by, or available to other types of physicians. I'm not sure how large a town Pineville is, but surely there is a city within reasonable travel distance to visit a pain specialist. To me, it would be well worth it. Good luck in your search for relief, and don't let the "bad guys" get you down. Hope this helps!
DF

dear trina i hear you i to have 24 /7 and i am on all kinds of meds to from hydromorphine cotin and oxcotin and percs to the point where they cant raise it any more for me the doctor says that i may have to go on the morphine drip daily to help the pain the other thing i hate is i am tried all the time i sit for hrs and then get up and walk a little in the home but it is very hard and other days i cannt walk at all and friends and family cant believe me i am that bad my wife trys her best to understand but i dont know how well she does really know the amount of pain i am in .but i try to fight it some days i am in tears due to it .well god bless you and i hope there is some one to listen to you there should be alot of places in the states to help you more then in canada .well as i said god bless and i will pray for you ok

hi there i know what both of you are going through as i have the same thing as you do i am on cymbaltaand hydromorpine cotin and percs i am tired to on how i am looked at i have a permit to park in handy cap parking spots and i have had people tell me i dont need it or i should not park there and stuff like that but i can not walk for more then 20 mins and my legs will go out or i just be in so much pain i can t walk at all i am only 47 yrs young and this is going on now for 4 yrs for me and it is like 3 times now meds have been changed i feel like i am being used by the doctors for trying new meds but it is ok there but it is killing me in other ways kiddeny liver and other things not good i am trying to get cpp disablity in canada but they turn me down all the time .mean time i get a disability for the ontario goverment not right i paid into cpp mthly on all my pay chq .well it is life .i just keep trying to smile well god bless you and i hope you can get better in time with out the pain being as bad .take care .hey if you want stay in touch and i am here to listen to you if it will help you .dargie1@bell.net

what do we do with the doctors that think that we're junkies/ that has been a real problem with me. they keep passing me around and not giving me the meds that i need.

do you have the web addy for the fm exchange/

I too live in constant pain. Sometimes it gets really bad, and then I remind myself that I've been there before and that it will get better.
I want to caution everyone against the so-called "pain pumps." I had my first implanted in 1996 or so; in those days it was just for Baclofen, to help control the extreme spasticity resulting from my 1989 spinal cord injury (herniated disc). Later, as pain set in, I had morphine added to the Baclofen. Then the dr. changed the analgesic to Fentanyl, which I think of as a placebo. Finally I met a dr. who tried Dilaudid (Hydromorphone), which was wonderful at first. After several years, with my disks continuing to degenerate, my pump was recalled by the manufacturer, to be replaced by a new, more efficient model. Unfortunately the surgeon implanting it did a terrible job. The catheter became dispatched from the pump, so instead of the mixture going to its intended spot in my spinal canal, it went straight into my flesh, making big lesions and putting me in a coma for almost a month.
Finally, I woke up, and have been pumpless since 2008. I can control my pain and spasticity with oral drugs, though not as efficiently as with the pump. But my tale should be a caution to anyone considering a Medtronic product. Try to ensure that yours is not the first one your doctor has implanted, but try to find a pain specialist who will actually do the implantation, not just a general surgeon.

Hi Danielle76, I got there "fm exchange" by clicking on the "all exchanges" link at the top left of this page. Then just click on the letter "f" and go to the Web MD's fibro exchange site. Just click on it and it should bring you there. Hope this helps!

chronic pain can make life miserable...it limits you interaction with others and overall can make life miserable.I have had to contend with chronic pain for over 35 yrs ,The choices are simple ask your doctor for an anti arthritic like celebrex or a pain killer like darvocet or one of the other precription meds...or like a majority of the population just bear and suffer. We know its not going to get better or go away.Sometimes pain management is a viable solution or you go around with a Tens unit strapped to your body....We all know these are not long term solutions only options.after awhile ,,,your tolerance to pain meds is a problem and you have to find something else that works.....it just doesn't get any better

No one undertands your pain but you.Even your soul mate "thinks" they know, but they don't. I finally found a doctor that is trying to help me. I mean actually looking at me as a whole person that he can prove that my pain is real and I'm not misusing any substance. Wow! what a difference! So, I'm finally on a road to try to cure the problem, not hide it.Yes, I may need some kind of pain reliever for the rest of my life,but hopefully not as much and there is hope to work on a better solution than,"oh, it can't be that bad, stop complaining." How degrading after 40 years.Yet, refrehing that a doctor finally believes me.Some friends you have calling you a junkie.

HI KELLY DENVER,CO I KNOW EXACTLY WHAT YOUR TALKING ABOUT I HAD TWO AUTHROWSCOPIC ON BOTH KNEES BEFORE THAT I WORKED CONSTRUTION WORK FOR THRITY YEARS I AM 52 YEARS OLD 10 TO 12 HOURS ADAY SIX TO SEVEN DAYS A WEEK I VE TRIED EVERY OVER THE COUNTER DRUG THER WAS TO NO ALVEL I HAD TO TAKE PERCOSECTS OR OXCICOTINE TO EVEN GET RELIFE TO TOP THAT I FINALLY HAD T.K.R.ON RIGHT KNEE BOY DID I LEARN A LESSON UNTIL YOUR FRIENDS OR FAMILAY HAVE ONE THEY WILL NEVER KNOW WHAT WE GO THRU HANG IN THERE THINGS WILL GET BETTER

I, too, have chronic pain (RSD) and it IS hard when others don't understand. However, I have been very lucky. I am a musician in my community and as such, many people know me. 3 years ago when I was diagnosed, it was a big blow. The first thing I did was share it with the people with whom I usually worked. It has turned out to be quite an educational thing for the community. It started in my right arm and now impacts both arms and both legs. But I have been open about it from the beginning. Because of that, people are supportive and we all have a better understanding of chronic pain and the way it just doesn't show - at least in ways that we would think were usual. My family, people at my church, the kids in my piano studio, the university community - they all now can read when I am having pain flares. They know not to touch me unless they ask first. So, for me at least, it is better to have been open and honest from the beginning.

For those few that I encounter who don't understand, I still try to explain. I tell them that I have to take x number of pain pills a day just to be there the way they see me - plus x number of one med to control the tremors that I have developed as a result of my condition. That is usually when they have a light bulb moment. If anyone asks me what I take, I tell them that that information is private (unless it is people I know and trust). No one has ever pressed me on it.

Chronic pain is the pits. But "those" people will never understand it unless we give the best explanation we can to them. It is not easy, I have to admit. But now I have my "speech" fairly fine-tuned so it is much easier now.

As to docs, it is definitely worth keeping on in an effort to find a doc who works both for and with you. I found my pain mgmt doc a year and a half into things. He is amazing! He has a whole team of people he works with who all work together for the good of his patients. I am so blessed to have the doc I have. None of us should ever put up with abuse from any of the medical professionals we see. They should be reported to both the head of whatever clinic/facility you are in and the state medical review board. For those of you who have had this happen, I hope you reported those individuals. If you have not done so, please do so now. If they reacted that way to you, you know they will react that way to someone else.

And now I will get off my soapbox! Good night, all! I wish you all a low-pain weekend - and an "attitude of gratitude" for all the blessings you DO have in your life.

The most difficult aspect of chronic pain with intense breakthrough pain is the lack of understanding by the people that can not have any way to relate to how you live and feel. Give me a wheelchair and take away the pain. I will make that trade any day just to not have to deal with the critical response from most of the unknowing.
You have no way to describe what you are going through to people that have never had anything to relate to. All you can do is have patience and in the rare case when someone cares enough to listen try to relate the best you can why they really cannot relate to your condition. I try to limit the people I try to explain my condition to because it is often interpreted as a plea for sympathy.
After 6 years of a recalibrated pain scale where what was an excruciating pain like a toothache(8-9 if given the opportunity to scale the pain) is now an everyday pain (3-4 on the new pain scale) I have found no way to explain it to the people that have no experience to relate to your situation.
Its not their fault. They just have nothing to relate to. The best way I have found is to try to act as normal and happy as I can especially with strangers. Those that want to know will see that something is causing you to suffer and start with a simple acknowledgement that you are having pain that affects they way you feel and act. When they are ready they will ask, but try to keep the explanation short and simple. If they really care they will give you opportunity to expand your explanation.
As long as you have chronic pain you will be special. It may be difficult for even others with different chronic pain to relate to your pain or for you to relate to theirs. Do whatever you can that helps you cope with your own chronic pain and try to view every day as a gift and try to stay as connected and active as your condition will allow. Do not be offended by lack of understanding. You will have the opportunity to help some people understand what chronic pain does to you and hopefully understanding will grow albeit slowly that will help everyone with chronic pain.

Hi there Saskkat: I agree whole-heartedly with your comments. I have had severe back pain for 15 yrs. and have taken narcotics since day one, after failed spinal surgery. One pain specialist even said "learn to live with it" How can he possibly feel my pain? I'm currently on 100gm of Methadone daily (after being on Prolodone and Oxycontin for a number of years) which helps but still leaves me in pain. My wife who has a very high pain tolerance still finds it hard to understand the psychological changes that must take place as one adapts to cope. The daily routine of waking up in the morning and not knowing how you will manage the coming day with a smile on your face despite your internal turmoil. Please avoid back surgery if you can, the surgeons promise all sorts of things but which do not, frequently, cure the problem. I've had 3 failed attempts to rid myself of an intractable pain around L3/L4 lumber vertabrae (in one instance the right hand portion of the facet joint was removed to gain access to the bulging disc). Needless to say this has done absolutely nothing in the way of pain relief!
Here in Western Australia the general consensus is leaning towards Pain Management techniques whereby the patient attends a local pain centre for a six hour session where they teach you (and other poor souls) different coping activities. The waiting list is very long, even for private patients.
My pain specialist reckons that if the intake of Opiates only controls the pain and there is no euphoria (apart from being highly delighted) by the absence of pain) then you will not become a 'junkie' however you will still need to slowly ease yourself off the drug. A 10% reduction per week is considered acceptable by the body and tolerated well. I can attest to this, having done this several times over the last few years. You have to do this when you have been on Narcotics for a lengthy period so that the pain receptors in the Spinal Column can reset themselves. You have probably heard about having to take increased doses of pain medication over time. This is one of the drawbacks of taking pain meds. You choose! Nobody knows your pain like u do unfortunately so u have to ignore all the 'advice' and try to make peace with your pain. Have you noticed that when something else occupies your attention, even if it's only for a few minutes, that your pain is not noticed! (Generally. There always will always be exceptions) The brain can only process one thought at a time. Good luck with your quest for relief, never give up and NEVER say "why me".

Humorwins and LLMS, I hear ya! I agree with you. I have people who have been blessed with perfect health tell me what to do and look at me with disdain because....I just don't " go workout" to make it all go away. Only people with chronic pain seem to be able to relate. I hate being on all the pain meds and feeling out of it. I want to have children, but cannot because of all the pain meds I am on. I feel like I have lost my life and lost who I am. I don't need other people to remind me or to rub it in. I have spinal problems exacerbated by being rear ended on the freeway and messed up spinal surgery. Additionally, I have fibromyalgia....probably brought on by my other conditions. This has affected my marriage and my messed me up financially. Even regular friendships are hard to maintain when you are in too much pain or too week to go out and see a movie or walk at the mall with friends. If I could just "go workout" to make it all go away I would. But the one thing I have to say about having chronic pain. It has made me more compassionate towards others and whatever their struggles might be.