What everyone should know about life with chronic Pain

Discussion in 'Fibromyalgia Main Forum' started by makezmuzic, Sep 8, 2006.

  1. makezmuzic

    makezmuzic New Member

    So important to remember.

    Tips for Understanding People in Pain

    1. People with chronic pain may seem unreliable (we often can't even count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Pain people need the "rubber time" (flexible) found in South Pacific countries and many Indeginous cultures.

    2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

    3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

    4. The senses can overload while in pain. For example, noises that wouldn't normally bother you may
    seem too loud or glaring.

    5. Patience may seem short. We can't wait in a long line; can't wait for a long, drawn out conversation.

    6. Don't always ask "How are you?" unless you are genuinely prepared to listen - it just points attention inward.

    7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite okay. It is sane to be depressed occasionally when you hurt.

    8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

    9. Knowing where a refuge is, such as a couch, a bed, or a comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go somewhere that has no refuge (e.g. no place to sit or lie down)

    10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

    11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

    12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain; it only reduces our ability to give it a label, and to have you believe us

    So, lets cut ourselves some slack.
  2. littleleafhopper

    littleleafhopper New Member

    Hi Muzic,

    It's getting late, but I had to read your post. I've often had trouble describing pain, as it seems to fluctuate. It sounds so silly to say " Well it's here and then it moves over there"!

    It makes me feel foolish when asked to explain. I rarely tell the docs about all my symptoms. Just too overwhelming, besides I figure that I won't likely be believed. Such is life with the DD.

    Thanks for the info!

    Yours, Lil
  3. hugs4evry1

    hugs4evry1 New Member

  4. makezmuzic

    makezmuzic New Member

    Hi! No one I've asked will tell me what "Bump" means. I'm assuming "Bump" means "ditto"? ???????
  5. lyciumchld

    lyciumchld New Member

    any time a reply is made to a post, it is then "bumped" back up to the top of the page, as the most recently replied to post. sometimes a person doesn't really have something to say about a post, but wants to see it go back to the top so more people can see it, and respond to it if they like. since they have to type something in the box to get the post to bump, "bump" seems as good a thing as any. ;)
  6. Cyndi40

    Cyndi40 New Member

    Wow, this is awesome... thanks for posting. It would sure help family and friends to understand how I feel at times. Thanks for sharing!!
  7. rosemarie

    rosemarie Member

    I did not understand what chroninc pain was. I had headaches all of my life and my doctor would tell me that it was stress or if I went to his office in pain and in tears I was DEPRESSED BUT MY PAIN WAS LEFT UNTREATED.

    I reammber one visit to a doctor and had to see the nurse practionar and she told me flat out that I was abusing drugs and that this doctor would NEVER prescribe me pain pills again. MY B/P was really HIGH from the intense pain and I was given 1 yep that is what I said 1 lortab 7.5 for a headache that I had for over a week and that was it . The last thing she said was I needed to see a Pain doctor who could deal with my drug addicton.

    So you can immangae just how scared I was to see a pain doctor. The first one I went to was great and he did a exam and prescribed for me lortab 10's and they worked for a while and then I got worse after a fall. And eventaully I was put on Oxycontin and it did help alot.

    But do to the cost of it I had to find something differnt that would still work for the never ending pain I live with.

    I would wonder what is going on with me. Why is it that my headaches will last for weeks and never seem to leave and everyone I know will take that pain pill given to them and poof it was gone and they were left with 20 pain pills .And i would have to take all of mine to just ease the pain I had.

    NO docotor really believed in me that the pain i had was real. I got told so many times that YOU can't be in that much pain when there is nothing that I am able to find wrong with you. But I was and still am. I can only pray that people will understand what chronic pain is...

    I didn't start out looking fro a site for fibro but for one that could help me to understand what chronic pain really was . I found the best site. But sadly it is here no more. And I can't find the dear friend that I made while I was on there forum. I can't get a e-mail address to work for her and I worry that some thing has happened to her. So if you ever hear about the Chronic pain support Forum let me know. I would like to find Laurie and find out if she is ok.

    Thanks for bringing this to our attention. What a blessing this is.
  8. psychoforkaatz

    psychoforkaatz New Member

    I have CFS for many, many years and back and forth between docs and specialists some who believe a little, most who give me the all in my head speech. When they ask me to describe my pain, which is mostly in my back but goes also from joints and muscles all around, I have a hard time describing where pain is. I believe this is due to the fact that when you live with intense pain for so long, especially mobile pain, it becomes a part of you. YOu expect pain to be new and different. Its hard to describe because its just always there, you're used to it, even tho you cant handle it. How to you differentiate pain when it is a normal part of your life?

    Also, I started having new headaches recently, unlike the ones I get frequently, these are always there and dont go away. I have hypothyroidism and have been on thryoid meds for years. They make the lab numbers come out right but there is absolutely no change in how I feel whether I take them or not. Until recently! I was off them for about 4-5 months because I moved and had no healthcare. As soon as I got ins. I got back on them. I noticed that night sweats that I hadnt realized had tapered off had come back with a vengence and I started getting these headaches. If I forgot to take a pill one day, the headache would lessen. I did a test of not taking them for a week and headaches went away. I took one one day and two hours later, instant headache. I then got the docs to switch me to Synthroid the brand name, since I had been on generics for years. It took about a month and then the headaches came back again. I now have stopped taking any thyroid meds, my numbers in bloodwork are crazy, but I dont feel any better or worse except no headaches.
  9. makezmuzic

    makezmuzic New Member

    Thank you Lyciumchld, thats very cool. What a great idea.

    You are very welcome Lil, sweet dreams.

    You too are welcome Cyndi. When I found it I immediately sent a copy to loved ones also. Its so difficult to describe what we go through.

  10. makezmuzic

    makezmuzic New Member

    Rosemarie, I don't understand how so many health practitioners can be so disrespectful and invalidating to us. I'm so sory you went through that. Its 2006, you would think they "got it" by now! Fibro hurts!!! We are not lying. Who would choose to live like this?? I learned a helpful trick in my Kaiser "pain management" program. I've use a chart. I bring it with me and show them where my pain level is.

    #1, being just a little underlying discomfort that I can let go of almost as soon as I notice it to

    #10 - the worst, being "I am in so much pain, who can I find to get in a fight with and know they will put my lights out?" LOL!!!

    I kid you not! medical people actually respond well to little graphs. They also like a "pat" little descriptions. The next time you are in pain, try to think of something you can relate it to, or what it makes you want to do. Not what it feels like. Assign a number to it as far as where it is on your #1 thru #10 worst pain chart. Write it and the description down, And carry that puppy with you to your appointments to show, not tell. They also liked to hear me repeat back to them that I know meds won't take my pain away completely, just allow me to be functional.

    Rosemarie, Have they ever done a CT scan of your head or anything to rule out neuro problems? Anyways... sorry this response is so long. You just really touched my heart with your responseand struggle. HAve they done anything to find out what is going on? p.s. I'm glad you found this site & a good pain MD. I'm grateful and glad I found it also.

    Lynn MM
  11. makezmuzic

    makezmuzic New Member

    Bravo for listening to your body and trusting your self to act on what you noticed!!!! That took gutts. I wish I was better at trusting my instincts. I'm so glad your headaches stopped. I know it must make a world of difference in your life.

    I can so relate to your difficulty in pointing out the pain. Your are so right, Its so hard to put it in to words when I hurt and don't have the patience or communication skills to speak to that amount of detail. I friend who also has Fibro told me she answers the "in your head" remarks with "No kiding!", "Fibro IS a neuro issue, we are talking about the brain here."

    I've also found that MD's are alot less condasending if I have a friend with me. I now have a very dear friend who goes to appointments with me. She had to leave the room to go to the bathroom the last time I saw my Pulmo. My pulmo immediately started telling me my respiratory failure is my fault because I'm fat. Even thoughI assured him I was this heavey the last time I was put on noratryptaline as a pain inhibitor and never needed supplimental o2 then. Just a weasle, turned on me just that quick. You never can tell.

    Do Take care, I'm falling over sleep at my computor. Gotta go.
  12. makezmuzic

    makezmuzic New Member

  13. Redwillow

    Redwillow New Member

    I think this is one of the hardest things for me. To explain how I feel.

    Telling your doctor you feel awful doesn't do it. But when you hurt all over, feel nauseous, like you have the all over body flu! the doctors just look at you like you are nuts!

    I tried to explain how I felt to one Psychiatrist. I got the feeling he really wasn't listening to me.

    When I read the report he sent to my GP one of the words he used to describe me was Verbose. Now verbose means you talk a lot. I was so hurt! I was trying to tell this SMUCK how I feel and he wouldn't even look at me. Had his body turned sideways so I was talking to the side of his face and he was writing as I talked!

    The reason I kept talking and repeating myself was because I knew he wasn't listening to what I had to say! GRRRR!

    Of course his conclusion to this visit was that I didn't need any medication!

    hugs Marion (Redwillow)
  14. JLH

    JLH New Member


    Thanks for posting it!

  15. makezmuzic

    makezmuzic New Member

  16. chloeuk

    chloeuk New Member

    After I felt like my dr thought that my pain was all in my head and feeling like I was a pain in the butt I saw a new dr.

    When he asked me to describe my pain I told him exactly...today I have pain here, my muscles are burning and I cant lift my arms they feel heavy...then I went on to say...yesterday it was my back and nothing else...the day before I was ok, the day before I woke up and everything was stiff...in other words it changes everyday, it doesnt follow a pattern and I can not predict the sort of day I will have on any day..he said it was strange and I said yes I agree with you...and all I want is some quality of life.
  17. smeyers

    smeyers New Member

    Is that the pain from fibro interferes with diagnosing other problems. For example, when I broke my foot last year, my orthopedist would say "does it hurt?" And I would say "sometimes, but I have no clue if it' from the break or from the fibro". Stuff like that happens all the time. "Do you feel pain here?" Yeah, frequently, but how to tell if it's something serious or simply a fibro flare up.

    What do you tell your doctors about this problem?
  18. rockymtnmom

    rockymtnmom New Member

    Dear Makezmusic,
    Thanks for finding this and sharing it.

    I plan to give this to people important to me to help ith their understanding of what I go through.

    Hope you have a peaceful day,


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