Pain Meds and Feeling "Judged"

Discussion in 'Fibromyalgia Main Forum' started by TinaJones, Jan 23, 2007.

  1. TinaJones

    TinaJones New Member

    Hi everybody -

    There's been lots of posts lately about people on pain meds and getting negative comments from family, doctors especially), etc. Thought I would give some feedback from my own experiences that might help somebody on here, and maybe in the bigger scheme - help "change" the perception of chronic pain - and needing narcotics - to those that just don't understand it.

    I have a very high tolerance to pain meds - even before getting ill. I've had a lot of "out-of-the-box" situations (like meningitis, six c-sections, etc), so not only can I tolerate a lot of pain, it also takes high doses to even touch the pain. This is the reason I'm on high dosages of pain meds and I'm getting a pain pump implanted once my insurance approves it (maybe in two weeks or so).

    Every time I read a post from someone who has a bad experience re: this subject - I can relate to every emotion - the anger, frustration, feeling misunderstood, wondering if what you are on is right, etc etc. I've had just about every comment - from the "How can you be breathing on this level of meds" to the "I'd be knocked out for days on your meds" - oh, the list could go on for days! Like I said, it makes me sad to hear that others have experienced similar comments.

    Around last summer - several things caused my thinking to change. I won't get into all of those things...other to say that one of them was FINALLY finding a great team of doctors. But I finally found the confidence to accept my pain level, accept that I NEED narcotic medications - at whatever dose is appropriate for my body and that reducing my pain leads to me having a better quality of life.

    I still get the comments once in awhile - a couple of times I've needed to go to the ER, or a consult with a new doctor, or whatever. If I get a comment - I just say something to the effect of: that I DO wish I didn't have to be on meds; that I'm not pain-free on my meds - they just take the edge off; and that I luckily don't experience negative side effects (like drowsiness, feeling "loopy", etc).

    I really feel like the people that make negative comments don't know much about chronic pain. Shoot, my parents still hear "morphine" and freak out! I think it might be changing - but my understanding is chronic pain is just briefly talked about in medical school. Many doctors that specialize in something else don't KNOW much about this issue. Pain management really is a specialty - although I do feel that all doctors should at least know the "basics" of current findings on chronic pain, current medications, etc.

    So - I think a lot of the negative comments really are ignorance, or in some cases - just curiosity. NO, this doesn't excuse rudeness and I know how frustrating it can be. These comments can make you second-guess if you are doing the right thing. That's the thing, though - if you need the pain meds and are being followed by a competent doctor - that's really all that should matter. I also think if we can take a brief moment to educate someone - it might open their minds a little bit. For some, nothing will change their feelings. :) But, for others, it could possibly help them to better understand people on pain meds, and hopefully - help them to stop making insensitive comments to people.

    Regarding addiction - this has been discussed many times here so I won't go on and on about that - other than to say that this subject is really misunderstood, even by doctors. Addiction happens a VERY low percentage of time with chronic pain patients.

    Finally, it helps to remember something - the people that make these comments may have a very low pain medication thresh-hold and just may REALLY not understand how someone can be on so many meds and be alive - especially if 1/2 a Vicodin knocks them out for the day. Again, everyone is different - and I think that should be the message. I guarantee that the very person who makes these negative comments - should he/she come down with a chronic pain situation - would do everything they could to lessen their pain...even if that meant narcotics for some. Again, it's a very personal choice.

    So, I really hope that as more information re: FMS, CFS, chronic pain, etc comes out - the more people's perception of pain meds and such will change. But I'm sure those who are on meds will still face comments once in awhile. I just hope that those of us who need the medicine can just accept that and know we are OK - despite any comments from anyone :)

    Side note - I know we need to vent so this isn't to say anything against that :) Trust me, I'm sure I'll be on here venting at some point...especially getting the pain pump - I can already hear the comments, unfortunately!! I really just meant this as an encouragement the next time someone gets one of these insensitive comments.

    Blessings to everybody! --Tina
  2. TinaJones

    TinaJones New Member

    Agree, 100%...with all you said!! Thanks for the addition to my post. YES, now that I'm on the "heavy duty" meds, I've had put them "away"/lock them up. Unfortunately, this came as a "tough" lesson learned, too...

    Thanks again for your comments :) You made me laugh with your "old as dirt" comment!! I don't think you are that by any means BUT I can relate to the feeling, believe me. I'm 33 (and with six kiddos), and I literally wonder how I'll feel in 10 years at this rate?? Uggghhh! Can't even think about that right now. Anyway, take good care --Tina
  3. shelby319

    shelby319 New Member

    Hi Tina~~

    I can't say enough of how I'm definitely with you on every word you said and then some!! Thank you soooo much for this post, I couldn't have said it better or wish I could of..but you did such a great job my friend!!

    I was wondering about you for the last couple of days as I hadn't heard from you or seen you post. How are you feeling now, are you still in a flare? I sure pray your not and feeling much better!!

    I've been spending all my time complaining about such and such Doctor, and the latest one is my dentist and how he made some comments on my morphine also, that my mouth dropped in disbelief and couldn't speak up for myself!! What a shame I hadn't, but I did go back after I calmed down and had a talk with him about his comments and how he made me feel. I also gave him some pamphlets I got from this site and what it says about fibromyalgia, so he could become informative about it, along with his patients he sees.

    I don't know how you do it my friend with six children and still manage your home and children, and even find the time to be so active on this board..I praise you for that too!! You go girl!! You make me proud to get to know you some, and hope to continue in the future!!! Priceless!!

    Well, I just wanted to drop in to tell you this, and how glad I am that you posted this information for everyone, including myself, and to keep up the good work and I'm behind you 100%!!!

    We are all so different in our needs and our pain issues along with our choices of meds and not being judged to the point of being overly sensitive to every Dr. or other people we meet. Also to what they say to us when we tell them what medications we do have to take, and please have them not pass judgement on us for our diseases and what we have to take to manage to continue to live!!!

    Thank you Tina~~
    I hope you feel better and let me know about that implant, if or when you have it done, ok?/!!
    Gentle hugs,
    Shelby

    So with that, he did apologize and now I will stay with him to do my procedure with my tooth, and now we have a great communication over pain meds and fibromyalgia, among other chronic pain and what it does to us!!
  4. Greenbean7

    Greenbean7 New Member

    Thank you. I found all of these posts very well written and well thought out and the information is important for us all.

    Thank you,
    Greenbean
  5. fungirl2100

    fungirl2100 New Member

    Hi Tina,
    I understand where you are coming from. Keep in mind a doctor is supposed to help you. If you have pain they are to try to help solve what the problem is & if they cannot they are to refer you to someone who is better able to do so. IE: a pain management doctor. Doctors are of course taught about pain. All med schools present it differently though. All doctors have their own opinions as well.
    My best advice in regards to being judged is that it is none of anyone's business as far as what meds you are on & or the dosage. Your regular "lame" person who doesn't have any chronic pain issues will never understand. My family nor friends have no idea what I am on either does my employer. The only people that know other than myself are my doctors and my husband. My husband being a doctor understands. Believe me he is compassionate he too suffers from chronic pain. He had spinal fusion surgery & had degenerative hip disease. It is rude for a pharmacist to pass judgement like snide comments when getting a medication filled. You do have the right to take your prescription back & get it filled elsewhere. E.R. docs see so much come through their door they forget sometime that not everyone is drugseeking, some people are in real pain for valid reasons. I would only go to an E.R. if it were a life death situation. I like dealing with my docs and my docs only.

    Somethings are better left to yourself especially when it comes to what narcotics you are on.

    your friend,
    fungirl
  6. munch1958

    munch1958 Member

    Unlike some FMers, I need more than a pediatric dose for pain control. It's great to read that I'm not the only one that needs enough meds to knock out a horse. I've NEVER gotten a buzz from any pain medication.

    I find that some of the long acting pain meds like Oxycontin do not last a full 12 hours for me. I had a doctor that didn't believe I was only getting 7.5 hours. He would not dose it every 8 hours until I printed other patients complaints about Oxycontin from the web.

    I hate to generalize because there are some great doctors.
    After 13 surgeries I think some doctors have the oddest ideas about chronic pain and addiction. We expect doctors to know better but they are only human. Unless they've had some major pain they just don't understand it.

    People who have never been in pain (or those that don't need anesthesia from the dentist) don't understand pain meds either. Some of the most hurtful comments come from ignorance. I don't let people know what I take for pain anymore. This way I don't open myself up for negative comments.

    I've also had other chronic pain suffers ask me for some of my meds. I resent that because I did the work involved to obtain pain relief. If I can drive 2 hours one way to the pain clinic so can they!

    Nevermind trying to explain that it's illegal to transfer medications to someone else. I get a 30 day supply that is counted out to the hour and that means one less dose or more pain for me.
  7. EmberFae

    EmberFae New Member

    I'm so with you on this.
    Right now I'm on the phone (in pain) calling every Doctor in the state tring to get medical records so my doctor CAN SEE IF HE CAN find a Pain Management doctor who Will SEE A F.M.S. Patient.

    mean while..I whatch people who stubbed their toe get pain meds...

    ~~Ember Fae
  8. TinaJones

    TinaJones New Member

    Hi everybody :) Thanks for the responses :) After I wrote my very LONG post (thanks for reading, by the way!!) - I realized title I chose wasn't that great (by it was late in the day and I was wiped out!). Anyway, I have been through many experiences and but I wrote the post to maybe help someone else that's not as far in on the pain journey as I am.

    S-elaine (elaine): Thanks for the kind words!! Now, sleep is another story for me. I NEED sleep and nothing works! I'm glad to hear your meds seem to be working for you - sleep is sooo important.

    Fungirl - Thanks for the post. I agree with much of what you said. You seem to have a very compassionate, understanding husband - I do, too. It really helps. YES, I agree about the ER situation...I try not to go, too as I much prefer my own docs. But I suffer from vomiting and dehydration that can go from bad to worse quickly...so there's been visits to the ER for fluids, etc. Actually, here in CO - it's the best ER I've ever been to. You don't feel rushed (amazing for an ER); the doctors have great bedside manner, etc. Still, it's reserved for "no-choice" situations for me :) Take care...

    EmberFae - I think I wrote this in another post to you - but hang in there...I know it's SO hard when you are in pain. Definitely a pain management doc seems the best for your situation. Keep us updated on how you are doing.

    Munch1958 - I liked your post - I too think there are great docs...hope my post didn't seem like I was coming down on doctors :) I've never felt a buzz from pain meds either. Well, one time only - now that I think about it. First child and got a shot of Stadol (do they use that anymore?). Made my eyes cross and room was spinning - only for about 15 minutes or so. It was weird!!

    I've never been able to go the full time on pain meds either...the Duragesic patch was supposed to last 72 hours; for me, about 36 hrs. if I was lucky. Same with all of the other meds I've been on BUT the Avinza (24 hr. morphine sulfate) that I'm now on seems to last just about the whole time frame. My doctor said that it seems to work best if taken in the AM.

    Anyway, my hope and prayer is that we can all find good pain control and just feel a little better. I really wish that for all of us. Take good care --Tina
  9. TinaJones

    TinaJones New Member

    Hi - thanks for the kind word - YES, I'm at least feeling better than Sunday and Monday...I was in bad shape. Feeling better but not great. I was pretty much in bed, so I was off the computer for a few days.

    I know you've been through a lot lately too, with your doctor situation and then the dentist - I'm sooo sorry. You haven't been complaining!! I know how frustrating it gets. I'm sooo glad you went back to the guy to talk to him - THAT'S exactly the point I was trying to get across...is sometimes I think we need to help others understand things better. Still, it really doesn't excuse some of the inappropriate comments you've gotten. Frustrating!!

    Honestly, it's tough being ill with this big of a family. I am thankful I got sick at the end of having kids instead of the beginning - because I really don't think we would have had all these little ones. And I can't imagine life without them. I do have a good support system in terms of my husband, a great church, good friends, and family (though our families are in California). The one thing that makes me sad is that my older three kids remember me being an active, high energy mom. My younger three pretty much know me as being sick. I pray that changes one day - that's really all I can do. Thanks for the nice comments re: my family and for seeing that it is really tough to do with lots of small kids.

    This board has been really good for me to have an "outlet". I, too, look forward to getting to know you and others better. It is so nice to be able to say something to someone - and the person can relate.

    Finally, re: the pain pump - went to the pre-surgical psych evaluation today...doctor said I was well-informed about having the implant, etc. So, I should hopefully know when it's going to be implanted by Monday - I'm praying!! It will be five days in the hospital for me - I'll post when I'm going as soon as I know.

    Thanks again, Shelby for the kind words and encouragement. I appreciate it sooo much. Take good care and talk to you soon...Tina
  10. tandy

    tandy New Member

    I just saw this and I agree fully 100%.


    I only wish I had someway/somehow to convince my docs.
    that I NEED stronger medication.
    I've been given darvecet for over 3 yrs and it just does'nt help me anymore. Not at all.
    so,.. from there the docs. put me on ultram.
    Lets just say I think I was better off on the darvs.??
    I don't even notice a difference in my pain levels after I medicate. Only when I add 2 tylenols or advil or something OTC.
    Even pain clinics could'nt offer me anything narcotic.
    (not for Fibro!!) is what I was told :(

    I'm truely at a loss at asking for pain medication.
    and I think ultimately thats whats causing my deep depression that I'm in lately.
    I'm wondering now,...since I have depression along with FM,..if I'd have much luck at getting pain control?
    sorry I rambled.
    I really just wanted to agree and Thank you for your post. I don't judge people for what medication they need to function. I wish I had the meds to feel alive again~ I say,..whatever it takes.
    surely anyone feeling like I do would take narcotics.
    and to think I have possibly 30 yrs or more left to live like this!?? eh eh,... not looking forward to it.
    Huge hugs
    Tandy
  11. tandy

    tandy New Member

    see above post

    any suggestions for someone in my shoes?
    a good day for me is having my pain levels at or under 6 or 7. Most days its very uncomfortable and keeps me home,unable to do things~

    Thanks
  12. fungirl2100

    fungirl2100 New Member

    Hi Tina,

    I understand why you would have to go the E.R. & I am sorry that this occurs for you. I am fortunate enough (maybe stubborn for a lack of a better word) that I don't go.

    Where I have felt it most is through my friends. I used to have lots of friends, but with my issues not getting better but worse with my health they pretty much have dumped me. It's a sad thing to have a best friend since high school dump you because you have to on ocasion cancel plans with because you aren't up to it, but if they cannot understand well I guess they weren't really your friend to begin with. That has been the hardest thing on me.

    I don't know if anyone else has had this problem. My mom & my husband seem to be the only one's who understand I have limits. Though my mom doesn't know what's wrong with me. She has enough troubles.

    I appreciate your kind words as well & pray that in time we will all get better or at the very least be able to deal with the cards we have been given.

    It does get frustrating & I am glad I'm not alone in that feeling. Just writing you right now is making me feel somewhat better.

    I look forward to us becoming good friends.

    love-
    Dawn *Fungirl* :)
  13. shelby319

    shelby319 New Member

    I'm so glad to hear your now feeling some what better with your pain issues, and your back posting some. Its always nice to know when someone that has touched your heart feels much better and therefor makes me feel more joy!

    I can't imagine anyone else venting about needing an implant if that is what will work for you, as I'm sure there are others that have it done also, they just don't post about it too often....so please don't take it serious as it has been a godsend to many that I've heard about who have it put in!! What ever it takes to improve your quality of life, I'm for it and I'm sure so are others!!

    You have to do what is best for you and only YOU!!! Then your family comes next, so you can take care of that beautiful family of yours, and to live a more productive life out of pain!

    I read up on it also, so I would know a little about it, and I also have a friend who had it implanted about 3 years ago, and she claims it gave her back her life. And I can vouch for that as I knew her before she had it done and what type of a person she is now for doing it where she is no longer in the pain she was in. She is now more beautiful inside than she was outside because of it and how well she lives her life to this day without pain.

    My friend's life has totally changed because of the implant, and I'm sooo happy this too will help you deal with life where you can sparkle and shine the way you were meant to be before being hit with this terrible disease!!

    God Bless you my friend!!!

    Feel much better with each passing day and come back to post when your up to it. Ok?

    Off to work shortly, but I'll be back~~

    Gentle hugs and well wishes for a wonderful day~
    Shelby
    [This Message was Edited on 01/25/2007]
  14. TinaJones

    TinaJones New Member

    Tandy - I'm sorry that you are struggling with your pain and doctors that don't seem to understand fibro. My pain, too, is "good" at a 7 and usually is at an 8 - and many times goes to 9. It's very frustrating. I know there are TONS of good alternative ideas on here in addition to the meds but I want to comment on pain meds and finding a good pain clinic.

    When we first moved here, I was calling around to find a pain clinic. After saying that I had chronic pain issues PLUS fibro - the person I talked to at two clinics said that they don't treat FM patients. Now, I could have still gone (like I said, I have other pain issues) - but didn't; I can't imagine a pain clinic saying "Oh, and we don't do fibromyalgia patients". I think that's crazy; to me, it just means they are misinformed and don't understand the illness - and choose not to deal with it. Since then, I've found a wonderful pain clinic - that would treat me even if I only had FMS. It's a bit of a drive - 40 minutes one way...and since I don't drive these days - my husband has to take me there and back. But, for a good doctor - the drive is worth it.

    I guess I take it for granted that I've always lived in a metro-area (SF Bay Area and now Denver); there's always been lots of "options". The more I read on this board, though - I see that there are many that just have a few choices. Still, I would exhaust EVERY doctor/pain clinic within a 60+ mile radius to find a good doctor that understands this illness.

    More and more doctors are understanding that it is better to use the long-acting drugs instead of giving lots of short-acting meds. Have you asked to try an extended release morphine (MS Contin, Oramorph, Kadian, Avinza)? Or there's the oxycontin based meds...or the Duragesic patch... I guess I would just say to my doctor that I really need better pain control in order to have a better quality of life. How can a doctor deny trying things to improve someone's life?

    Just another thing to keep in mind - your doctor is your "consultant". You are paying him/her to give you advice and direction in the specialty of medicine. I would just come well-informed and say these are the things that I would like your advice on and would like to try. If he gives a negative response - I wouldn't be confrontational..but I would really ask what his fear is of trying stronger meds? Addiction very rarely happens in chronic pain patients. Does he not believe your pain?

    Re: depression - YES, I absolutely believe that not getting good pain control is directly related to depression. I think dealing with doctors that don't understand you and that aren't adequately treating you - leads to depression.

    If the doctors are really saying "No, not for fibro", Tandy...I really just don't know what to say. I think it is ridiculous to leave anyone in pain when we have access to things that could help. I'm so sorry that you haven't found a doctor that's knowledgable about fibro. I will continue to pray that you do find someone to help you, and that you can try some other pain meds. I know how hard it is - but try to hang in there :( Blessings, Tina
  15. TinaJones

    TinaJones New Member

    In the beginning of my illness, I lost many "friends" because I couldn't make/keep plans at times...it broke my heart at the time. I was sick and having people turn away simply because they didn't understand my illness. It took me a long time to come to terms with this. But, now, I realize that I just couldn't have a long-term relationship with anyone (friends, etc) unless they understood my llness..because it's such a part of who I am.

    It still is really frustrating, because I can never imagine turning away from a friend because she is sick? I'm sure many people on this board have had similar experiences. I'm sorry you lost your relationship with your friend from high school. This illness is really hard on many areas of life, huh? It is sad. --Tina
  16. TinaJones

    TinaJones New Member

    More later because I have to scrounge something up for dinner :) but I just want to say hi and thank you for the encouragment. I'm praying the implant helps...that's really all that matters, right? :)

    Do you work PT or FT? I know that caring for my kids is a full-time job...but it comes with the advantage of wearing my PJ's and resting when I have to (to some extent). Are you able to manage work and your illness? I know MANY people do...but I'm sure there are many times that it's hard.

    Gotta run, but - yes - talk more later!! --Tina
  17. keelieo

    keelieo New Member

    It's nice to hear others feel my pain. My husband makes comments sometimes that I am a pill popper. Yet, he has never even taken the time to read or learn about FMS. He thinks because his mom has it that we are all the same.

    I also get frustrated when I go to the doc. On top of the FMS I've had 3 car accidents, shoulder surgery, and 2 foot surgeries, so I obviously have some sort of tolerance. Yet, I feel awkward asking for meds because there are so many people out there that abuse pain meds that they ruin it for the rest of us who legitimately need it. My rheumatologist used to give me vicodin and the last time I went he switched me to ultracet. He said, "Well, you dont want to be on that forever do you?" I WANT WHAT WORKS! Not only does the ultracet not help, but it keeps me awake.

    Now I have to either find a new doc or try to convince him I really need something more effective.
  18. jake123

    jake123 New Member

    I went to the same PCP for quite a while, about six years. He gave me vicodin for headaches and body aches. One time I asked him to refill my vicodin prescription and he just looked at me and said not this time and walked out. I felt like I had been slapped in the face. I had no explanation, nothing. It even gave me a headache!
    I did quit him. Now I go to a 16 hour clinic and see a different doctor every time and I really like the doctors.