'A Patient Voice' Community

I have received many questions and comments about chronic pain. Many focus on what others seem to think or what they say. What your doc says is important, and as I have written, get what you need or move on. As for all the other nattering voices around us, why do you care what they think. Obviously, they do not get it. Their words should go in one ear and exit the other with all due haste.

Best,

RMC

I hear you! It doesn't matter what others have to say, it's your life and you hurt. Pain meds for real pain do not make you a junkie!!! You know, sometimes the best thing is to just walk away and leave them stupid, if that's their issue. It just shows their bias and the only thing that WILL change their mind is when they hurt as bad as you do. I have your kind of chronic pain, herniated discs, degenerative disc disease, had surgery twice already for that with cages, screws that I can feel thru the skin and rods. But after those surgeries I got arachnoiditis which can't be treated by pain meds by mouth for me so now I have a pain pump implanted. I've done the Pt, injections, tens unit, braces, accupunture, you name it. I like you have a need for the pain meds and anyone I encounter that considers me a junkie because I need meds isn't on my friend list anymore, including family if they persist to go there with me. It's my issue and if they want to be stupid, that's their problem. Thank God it's not mine! I think we have enough to learn to live with that trying to be around these type of people just make our life harder to endure. I sure don't need that and I doubt you do either. We need suport from the people we care about and we need to tell them that. If after being told they still trash you, walk away. This site I have found helps me just knowing I can talk with someone who does know the words I am saying. I thank you just for being here. I just don't understand why as people, we can't look at another person as ok no matter what their problem. We don't need to tell someone else how to walk in their own shoes!

I have Addison's, and I have to take steroids for the rest of my life. In the few months since I have been diagnosed, I have been amazed at the number of people who have stepped up and made comments that by taking the steroids, I'm "poisoning" my body, I'm "killing" myself, etc. Guess what? If I don't take it, I will die anyway! I was recently hospitalized because a steroid switch didn't work - my body didn't accept the different steroid, and I started going into crisis. I was pretty bad off, and the next step (which I fortunately avoided) was organ failure.

I finally had to sit back and realize it is ignorance. I am willing to explain once, but if a person persists after that, (pardon the expression) screw 'em!

It's bad enough that we have to fight doctors to get diagnosed, then get the medication we need, that we have to try different meds, suffer side effects, deal with the idea of a life-long illness. We don't need to add obnoxious, know-it-all idiots to the mix.

Hello Kelly.....MiMi in NC....I normally post on the Fibromyalgia Exchange....and I hope you will check this exchange out also.....

I would also encourage you to ask your doctor to check your Vitamin D level....if you have not already done so....it is so very important...a simple blood test....but low Vitamin D can cause pain by itself....but you MUST ASK your doctor to do this test....

I have learned how to "control" my FM pain by taking vitamins and supplements....but the chronic fatigue is what I have a lof of problems with...

You might get a lot of good "tools and tips" on the Fibromyalgia Exchange....we have a unique group of people there....

Take care and good luck...


MiMi

I have Trigeminal Neuralgia and for me it's not about what others seem to think, it's about getting them to understand what my pain is. My husband has degerative disc disease and a narrowing of the spinal column. He says to me that when he is in pain he just moves around until he can get somewhat comfortable . I told him that is fine , but I can't turn my head around so that the other side hurts for awhile. I find that everyone thinks that I just have a headache. I think that most people in pain don't care what people think, I think that they just want to be understood.

I was diagnosed with Reflex Sympathetic Dystrophy in 1997. I have been inconstant pain 24 hours a day since then. I have to take pain meds on a daily basis. I have had doctors call me a drug addict, tell me that I was crazy, or that the pain was ll in my head. I have been slapped by a doctor before because she did not believe me that I was in pain. I have family members and friends that look at me strange and give me dirty looks when they find out that I am on the pain meds. I can not walk without it and refuse to use a wheelchair.I am only 34 and I am tired of being ignored by doctors and treated like I am just there to get a fix. I am not an addict. I just hurt all the time. I know what you are going through and I sympathize with your pain. I am so short tempered because of the pain that i can not even enjoy doing anything with my nieces or nephews anymore. My husband says that I am just plain mean. It makes me cry to hear that because no one knows what I am really feeling. At times i just want to disappear from everyone so I will not hurt their feelings or have to listen to them say that I do not need the meds. I'll pray for you and I hope that you pray for me.

Thank You,Trina, Pineville, Louisiana

Gizzie,

Although I wish more people would give me the benefit of the doubt, most days I'd just settle for them to keep their mouths shut! They are never going to understand, no matter how you try to explain it. If you are lucky, they will empathize to an extent, do a little research on your condition, realize you aren't crazy. But for me, on most days, I just would like to get through going out without having someone suggest I go take a walk around my neighborhood, quit taking evil steroids, or something else equally ignorant. Just be quiet and let me get on with my life! Your opinion was not asked for.

I have also found it beneficial to NOT let anyone know the majority of meds I am on. It's a combination of two things - first, it just gives them more ammunition, but more importantly, even if they aren't after it, they may innocently mention it to someone who is, and I'm going to have people trying to break into my house to get their hands on valium or xanex.

LMMS

Dear Mimi,
I too have FM and my lyrica has helped.
I ment to ask my Dr. when he ordered blood work for Cholesteral test , but forgot.
I will be seeing him soon,and will not forget.
I think I should start anyway, because women here in colorado seem to get more depressed in winter , and live in pain as we do. That vit. D is also very helpful.

Thank you

• Ah, Privacy! I don't tell people what I take anymore. I was tired of them questioning me. And making rude comments. I have come up with a few comebacks when the do. 1. Oh I didn't know you got a medical degree? 2. I thank the lord every day that you have a strong body and I have a strong mind. And if they ask questions I don''t want to answer I turn it on them and ask, Why do you want to know? And I also say If you could see my disability such as i had no legs etc would you question me?
  
• And I only talk about my condition with my closest friends and family members. To every one else I am ok.!
  

It isn't important what others think, only that YOU know what is going on with your body and how to take care of yourself. Like Mr. Cohen said, find the right kind of help or move on to someone who can help you. I've lived with Fibromyalgia, Degenerative Disk/Joint Disease and Lupus for close to 30 years. The best relief I've found for Fibro is a combination of Prozac/Flexiril. No more muscular aches, of course, I still have chronic pain but the flue like symptoms have gone. Don't think about what others say, you take care of YOU! We who live with chronic pain KNOW and that's all that matters!
God Bless, keep your chin up!!

HI: I Like your reply, and totally agree with you, your health and the meds you take are your bussiness and nobody else's. And if you are taking pain meds for true pain, in no way will it alter your behaviour or mood. You will not act like you are high like a doper. Because all the medication goes to eliminating the pain in the body and not altering ones mental state.
People are so judgemental, but you can be sure, that if they had chronic pain they would be the first ones crying at the Dr.'s and begging for narcotics. And been self righteous about taking them. I always say, what goes around comes around.
So all you judgemental Yahoo's out there, Think before you open your mouths, because the day will come you might just be the person in chronic pain. Or making the decision for a loved one.
Taking these meds, are the only thing that give some people any standard or quality of life.
No one can judge another pesons pain, only that person owns their pain. So how can anyone, say that someone doesn't need the meds. Especially if it is allowing them to ambulate,and particpate in their own life again.
I am a R. N. and have dealt with judgemental family members, to the point that they have tried to convince the Dr. to take the meds away from the Pt. Do you know what happened with this father that had been injured at work, they lied to the Dr. because they were embarrassed, and the Dr. listened instead of checking things out. The pt. felt so betrayed, and his pain was so intractable, he slashed, and bleed out. I attended his funeral 4 days later.
I myself was in an auto wreck, and messed my neck, shoulders and back up pretty bad. I have had several surgery's. And they want to do more. But I am stopping. Each surgery just seems to add to the list of complications.
But I have had to rely on pain meds during these times.
And because I suffer from chronic daily pain, and I do know, that I will have to eventually take them on a reg. daiily basis.
I am going to try an external spine stimulator first. But if that doesn't deal with the pain, then, I will have to start taking daily narcotics.
Will, I tell anyone?. Not a chance, Its my bussiness. And after reading thru this, its obvious society still hasn't come out of their caves yet. But I have been on this earth long enough to witness, the philosophy, WHAT GOES AROUND COMES AROUND. so watch out you judgement hipocrits, you day is coming.

Kelly,
I agree with you. I too live with fibromyalgia, migraines, ibs, rls., etc... everyday and no one in my family understands. Thoughts and prayers go out to you and everyone else who deals with pain everyday.

Barb, Port Matilda, PA

I have DDD,spinal stenosis,severe arthritis of the spine/hips/knees and have had a spinal fusion L2-S1-which DIDN"T help at all. I am on a "cocktail" that I have to take daily. When I say I "have" to take it, I mean if I DON"T take it, I will not be able to get out of bed,get my 3 kids ready for school, or deal with the 101 other things a mom/wife has to deal with. As it is I am only able to about half of the normal chores that come with a horse farm.

The thing that really gets me are the people(friends?) that come to me and say"I pulled my back...can you give me a couple of pain pills until I get to the doctor?" HELLO!!!!????!!!!
In my state,this would equal a felony charge if I were caught doing that!! Not the person asking for the meds...ME!! And it is truly amazing that people think that it is perfectly ok for me to risk a felony charge because they don't want to wait in a doctor's office for an hour!

I no longer have friends? give me a ride to the doctor...if my sister or my husband can't take me, I wait till one of them can. That way no one knows when my meds are filled. I have had them stolen by a family member-and yes I pressed charges.

I have kinda learned to ignore the idiot people who choose to think I am a "junkie" because of all the meds I am on. I made the mistake of telling a family member that my doc is trying this med regime of 4 pills and if that didn't work he was going to take 1 away and add 2 others. Her eyes got as big as saucers and she was VERY quick to point out that I am setting a very bad example for my kids by taking all those pills! She didn't stop to think that I am barely able to walk most days...and that WITH the pills I had been able to do MORE with the kids.
I have to admit that there are some days I get very depressed about all the meds I take. But without'em I would have even LESS of a life than I do now. So I try to be grateful that I DO have them and keep in mind that they DO serve a useful purpose in my life-even if half the idiots in the world don't understand!

Peace,
Lisa

I am having problems with people around me also. My mother calls almost daily to see how I am (nice, but it makes me feel like I am always complaining), my co-workers want to know why I am out so often, etc. Until someone actually lives with daily pain and fatigue, they really can't understand how debilitating it can be. Hang in there!