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Where is chronic pain going ?

JohnJJohn Posts: 964
edited 06/11/2012 - 8:18 AM in Chronic Pain
Where is chronic pain going ?

The chat here is cheaper than medication and possibility more effective, we are all benefiting from informed knowledge and clearer understanding, we are making everyone welcome, the accumulation of users will make the communication of knowledge better for us all, and here now is an opportunity to educate us in improved strategies for coping with chronic pain, knowledge here should foreshorten the mistakes that we make is search for effective ideas. This mass of chronic pain patients here is unique and we are ready and willing to listen to professional aspects that would assist us all collectively.

The information here on the message board is effective and perhaps I am looking for substantive change and improvement that is not possible, I feel inadequate that even
with my long-standing experience I have limitation to what help and assistance I can give new members, it is not within my gift to make them better only more effective in dealing and sustaining what they have. I know SH relates question and points to doctors who give supportive comment and perhaps this could be extended to include everyone in developing improved coping mechanisms.

Any ideas.



  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I was Amazed at the lack of posts on this forum. Chronic pain is wide spread. This is where you can comment, sometimes it does alot of good just to let it out. in the proscess you my find some one who can help you, or that you can help someone else. The amount of information here is enormuss, and it,s free!
    Take care, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I agree,most of my problems are chronic,i am not a surgical canidate,we need to keep this section alive.....
  • I was suprised also at the small amount of posts here. Because, after all, chronic pain is what brought me to SH in the first place. I think there are alot of reasons to be attributed to this. One, and most prevalent, is the "body-specific" forums. If one has back pain, they are more likely to post in that forum. Same with neck, upper back, etc. Right now, there are more posts in the Neck Pain forum than any other. Who would have figured that?

    Another reason is new site and I personally have not posted in the same forums as I did pre-move. Just working my way around and figuring out the new site.

    Another over-looked reason I think is, when we get to a point where we have better pain management and is somewhat under control, we don't think about posting here.

    But I think when the "dust settles", this will continue to be a popular and helpful forum.
  • :) i tend to use chronic pain when i am having a flare up in my regular pain levels. since the forum is so specific now it can be difficult to move out of those forums and into Chronic Pain. when my back or leg is really getting me down i know right where to go! i think it will always be of use and it just has to find it's balance here. sometimes when it all hurts, i just lump it all together and head here! Jenny
  • I know for myself, it was a hard pill to swallow, admitting that I have chronic pain. I always figured it would go away, be "fixed", anything but stick around for an extended period of time. Then I started hearing all my docs talk to each other and on the phone to other specialists and the word chronic always precipitated the location of the pain. Still I found a way to dismiss it.

    I don't know when it was that I actually opened my eyes. Up until then, it was all those "other people" that suffered chronic pain.

    Possibly a few avoid this section for fear of realizing that they too suffer from chronic pain.

    I think too that many of the SH old timers avoid this section due to past "occurances" here. This section was the site of many hard feelings for quite some time. After a while they may have quit coming around all together.

  • I have a lot of problems. I started out with shoulder injury, and back, neck and ribs, and surgery. That led to myofascial spasm pain syndrome, and then a diagnosis of fibromyalgia. That is well documented by neurologist with 16 out of 18 points flared on last exam. I have DDD, neck problems, one fusion, another level contacting cord, thoracic hemangioma, bulging disc at T8-9, and lumbar pain, bulgind disc at L4-5. Along with that I am type 2 diabetic, have chronic infected sinus, severely deviated septum, scheduled for surgery in Aug for that. At my last neuro-surgeon appt, he documented leg weakness due to neck problems, buldging disc at C3-4, stenosis, osteophytes, and on and on. He told me he couldn't do anything for me, and is going to recommend a pain clinic to my PCP. I also have what he says is diabetic neuropathy in my feet and legs. How can he tell my legs are hurting from my neck problems and not my lumbar spine problems? I don't know of any in my little area. I live in the boondocks, in Eastern Oregon. What exactly can a pain managment clinic do for me? Do they take over the dispensing of meds? My PCP gives me pain meds, but they don't control the pain. I am in pain 24/7. I don't know what it would feel like to not be in pain.As you can tell, I'm getting frustrated. Each dr only treats his area, not my whole body as a single entity.At age 60 I feel like I'm 80. Help!

  • Glad to hear you are being referred to PM. PM has a lot of options to help relieve your pain that a doesn't. You will have to find out from them about the med issue. You can start by looking in the Pain management forum on these boards and maybe making a post there. Good luck and pm me if you need to.
  • I honestly don't see pain management docs as pain pill pushers anymore. My PM Doc like "C's" recommended a spinal cord stimulator for me, and I have been having better days lately and not relying on my pain meds as much. There are some awesome alternatives out there and more coming down the pike that can help people in chronic pain feel better and get them off some if not all of their pain meds. It is just imperative to find a good pain management Doc and not give up until you find one! I hear that pain pumps are also helping lots of people around the world. We just need to keep on pushing and getting educated to receive the best health care that we can humanly can! I know that if I was a horse, I would have put to sleep a long time ago...... :O
  • away from the hard stuff for pain because they told me I would need so much later in my life with all I have, but this last year made me a believer in pain meds. I know with all I have that I will need morphine in my latter years, so I try to bear without going that high, but man, when one is in pain like we're all in pain,they will change their minds in a hurry about pain meds no! I've been to so many DOCS who are anti-pain meds and made me feel like I was the NUT.

    Finally I found someone who believes pain meds are made for people in pain and while my hubby says I never take enough...I have escalated my meds to a stronger brand with the injury I suffered.

    I don't understand why DOCS are soooo against pain meds for pain. :( They try to make you feel so demeaned.

    Wish they could suffer just ONE of the things my poor body suffers for a week, I think it would change their mind.

    I hope new pains meds are coming down the pipe.....we sure do need them.

    Blessings and Health all.
  • I really am so tired of not knowing what it feels like to not be in pain. :(

    Hopefully someday we can all experience that.

  • dilaurodilauro ConnecticutPosts: 9,856
    Those that know me from the old Spine-Health site, know that I refer to Chronic Pain as the Beast That is because its something that lurks around all the time, sometimes it lies back and just lets you feel a bit of pain. Then there are times when the beast really starts up and creates all sorts of pain for you. You never know when its going to strike. It could be semi-quiet for a couple of days and then it hits.
    You dont know how to tame it, you dont know how to stop it.
    I think the best we can to is learn how to live with and how to manage it.

    First, accepting that the beast is going be with you and you do not see anything in the near future that will eliminate it for good.

    Second: Accepting that there will be times when the best is quiet and times when it hits with all its mighter power.

    Anyone living in chronic pain knows about the roller coaster rides we are on. Understanding why and how those ups and downs occur is really important. I think we can all figure out why we have our better days. But its those bad days, sometimes they happen without any warning.

    The best way to combat the 'Beast' is to protect your self with an arsenal of weapons:

    1) Medications
    2) Treatments (ie PT, Aqua, etc)
    3) Exercise
    4) Understanding your limits
    5) Positive attitude
    6) Support

    I've been living with this 'beast' for almost 30 years now , so I figure its going to be with my the rest of my life. But I can tell you one thing, the 'Beast' will never beat me, it will never destroy me. Its a constant battle, but its one that I am determined to come ahead.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Amen to that. My mom had a fusion (unsuccessful) several years ago, and along with hip problems etc she used to say she was in pain all the time. My reaction bordered on anger, why wouldn't she DO anything about it??

    Of course I get it now. But it also makes me realize that people who have not experienced nerve pain probably don't get it, which is even more disturbing.
  • The old forum had several pages of topics on chronic pain. Perhaps for those of us in chronic pain, it is just too much trying to get all those topics started again.
    They were supposed to leave all the old boards for read only. Maby you can find the old spine health.
  • I had discogram done on my low lumbar i was very painful procedure, But it gave my orthopedic surgeon alot of valuble information. I found out that the buttock,thigh,leg and foot pain is caused from some damaged discs in my low lumbar and is siatic nerve that is causing me the pain. When i got home from the procedure i felt sick too my stomach and couldnt eat much until following day i also couldnt hardly walk my back was in alot of pain and i had a bruise where the doc put the needles in. Other that i am doing ok i am waiting to see the orthopedic surgeon about my results come this Tuesday than i will know where to go from there. I guess the only thing I can do right now is be thankful Im alive and thank god for each and everyday i can spend time with my family!
  • Hi ya Ron, you guys may have talked about this, I'm still finding my way around here, but I just saw this Avator of you...Yeah Babe,.....(there is a comedian who says that)...best one yet! Looking Good.... Now don't get a BIG head, you won't get that hat back on, (kidding-honest!), but I don't like the hat as well anyway.....No, really, I like this, and I like that COOL MOD SQUAD too.... Great Job, Buddy!

    I did wonder about this Chronic Pain site too, I thought there would be more talk......people...stuff going on, but like someone said, it's still new, and now I see it's growing and more are coming here everyday. I didn't think I belonged here for a long time, but when you are in PAIN and hurt all the da*n time, I think this is the only place to be, so I finally admitted it, got the laptop, fluffed up the pillows, and here I am, to stay....hubby has visitation rights (lol).
    Thanks for such a nice place. Now Ron, I won't flirt with you anymore.. }:) .....well......maybe....I won't.......ha...

    OOOOPPPPSS, my pills are kicking in, what am I saying...... :O

    Good Night!! See you in an hour or two..... :)

  • I am so tired of hearing all the stories of people who suffer from chronic pain and get shoddy care. I work in the medical field and it just chaps my a** that people like us don't get proper medical attention or pain relief because of the "Drug Seeker" community and label that goes along with anyone who doesn't want to feel pain! It's wrong! I have to have surgery to remove painful hardware in my back( this will be surgery #6)which I could certainly avoid if I had proper medication. Why is it that cancer patients are freely medicated and we are not? Is their pain so much greater than ours? Is it sympathy meds? Why should be worry about something like "dependance" when chances are...we will never be better? Who cares if we get physically hooked on the stuff...it's not like one day we are going to be just peachy and never need it! Many of us are handed a life sentence of pain. It takes over and starts to define who we are, at least in our own minds..."Hello, I'm Tracy, I have a life sentence of pain...and you are...?"

    Why is it that every doc who sees us and every nurse is giving us the once over to categorize us as to wether we are drug seeking or not? Why are docs so afraid of prescribing narcotics for us? THEY WORK!!! I am aware of so many people who give in to the pain and head into the ER in agony. For most of us, this means buisness. I'm tired of hearing that they were pushed to the bottom of the list even though they told the triage RN of the pathology in their body causing the pain andthe associated symptoms...and were simply classified as drug seeking!

    I had to leave my job in the operating room because I was in such pain, it was incapacitating. Do you know that the few nights I took a precious Percocet, I felt fine? Wouldn't it be better to keep my job and take Percocet? I mean seriously!!!!
    That Percocet literally took away a great deal of pain and I was able to do my job! Yet my pain clinic MD didn't want to prescribe them for me! It's BS people and it's about time we do something about it!

    I'd like to explore ideas of how we can make a change for all sufferers of chronic pain. Any ideas out there?
  • Tracy, yep, I agree with you. I'm going to vent here a little.....I don't know what happened to the PM clinic I was going to, it was at a major teaching hospital in a major city that has a medical school where doctors to be come from all over to study and do their residency, they still do, just no pain clinic as of yet.

    My PM doctor was an angel when I first met him, he worked with me and we finally found medications that gave me a little relief.......better than nothing, you see. He was an anesthesologist and Professor of Pain there at the university and he wanted to put me on a narcotic years before I finally gave in, I told him "NO" because I knew the pain would get worse as the years went by and eventually I would have to take something and wanted to put it off as long as I could. My husband didn' know how I took the pain, I don't either, and I didn't tell anyone how much I was in pain, I'm just that way, I try to keep going and not complain.

    I have "central pain syndrome" down my left shoulder, arm, hand and fingers, as a result of a small stroke also, so the pain there is very bad, and the back pain has been increasing as the years go by, so it was exactly because of what I thought would happen........that happened!! That I would start taking a medication and get some relief and suddenly the chance that I might be without that medication for a number of things could happen.

    And it almost happened. He suddenly one day right after Christmas walked out of the clinic because of a dispute with the university and is no longer there. He did relocate and is doing procedures, but procedures ONLY and no longer prescribing medications! So after 8 years with this doctor and 6 of them being in terrible pain because I told him of my fears, I had to go thru the procedure of retrieving my records from the university which wasn't fun and games, it took 2 months and phone calls, but I finally went to see him, I was due another "facet injection" anyway, and my hubby was so worried about me and told him what he thought.

    And, he just politely told us that he had not only left me hanging, but 4000 other patients also! Good guy, huh?? And, not knowing the reason why he wasn't or couldn't prescribe medications, my SO told him he supposed one of the reasons might be because he didn't make money doing so.......he just looked over and said, "You are right." By the way, they were both standing over me, while I was lying on a gurney after he had just fixed me up with a blood patch because of puncturing the dura matter (I think you call it) while doing the "facet injection" procedure 5 days before and "NO" he couldn't prescribe medication for me!!

    My head was still hurting, so, we left and thank goodness my dear, sweet Neurologist was only down the street and happens to practice at the hospital where this PM doctor is now and we went there, knock on the private door, his wife works with him, and thank goodness, we know them very well, he even left his patient, came to the door also, and wrote my prescription for Dilaudid which I needed, that the PM doctor had wanted me to take for years, but now could no longer could write, and I was really in pain from the blood patch too.

    Well, I don't know how I got off on this subject, but I'm just still furious at myself because I broke down and took that prescription for a narcotic the first time, however, I found something that gave me a little relief, it's not long lasting, but it helps, sure better than anything I had up to that point, but I started taking that narcotic and now my neurologist is retiring and I am going to have to start all over again and find doctors and that is not going to be easy.

    I just hope to find someone who will continue to give the medications I take now, which are not much, in fact, I need more for breakthru pain, these do not last 4 hours, and now with the stress, well, this doesn't help. I just don't know what I'm up against now, especially with so many doctors who fear prescribing narcotics.

    But, I agree I do wish there were more in the medical field who understood PAIN, but I suppose they are up againt the Pill Cops and they really have to be careful what they do also. There are a lot of good doctors out there who do try to help us in Pain, but it only takes one patient to get him/her in trouble. But, still, seems to me also, people in pain, along with medical records, should be easy to recognize. I don't know, I just hurt, I do know that....

    Take care,

  • The doc punctured the dura???? Are you kidding me??? Had he ever done one before???? Holy cow! Do you know how bad that makes him look??? It's so ridiculous that I don't know where to begin!!!Let me just tell you that it would really take some negligence for him to puncture your dura. That shows carelessness to me! That's just as bad if not worse than when they gave me one from a discography. :jawdrop: I'm schocked that at least he took responsibility! Mine never did and it was HELL trying to get it fixed because he didn't! The only excuse I can think of is if he tried to do one without flouroscopy or you have some real crazy stuff going on in your back. My God that is just shameful!
    I understand the issue of starting on a narcotic and then not being able to have it prescribed by anyone else. I hadn't thought of that. But that's just one reason to get something in writing about the rights of people with chronic pain. We have a right to adequate pain relief to the BEST of their ability!
    By the way, could you tell me what University you were referring to? Or give me a hint? Is it in New England? Mine is in Boston.
    You know, I would give my right arm for some Morphine sometimes, let alone Dilaudid. My pain threshold is so high in a way now that I could really get by even with Percocet.It just isn't fair that we are left hanging bacause they are all so afraid of narcotics. If the AMA put together a guideline consisting of careful patient selection and prescribing guidelines that identified true chronic pain patients and let them off the hook in prescribing the narcotics, then we would all be protected!

  • dilaurodilauro ConnecticutPosts: 9,856
    I wont get a big head
    but thank you so much for the compliments

    The Mod Squad is at your back and will be there to help you.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Been on just about every drug family there is. They all stop working after a while. I’ve done all the therapies there is, it helped a bit. In my situation I have tolerable days and bad days, that’s it. There isn’t a day/seconds that the beast is not around my neck. Yes I have a neck problem.
    My survival technique advice would be:
    1) Except your present situation completely, and unconditionally.
    2) Get psychological help, only to put things in the right prospective,
    Get the closest people around you, who are as affected by your situation as you as you are involved as well. If they understand they would not feel so help less
    3) Take your med properly, never play doctors.
    4)Set goals, start projects always have a plan for the next day, something to do, make sure they’re realistic.
    5)Finally always try to smile

    The bottom line the best way to tame the beast “Distraction”
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Maggie, a p.m. doc. is specially trained in his field . He has more "tools in his tool box" or "more weapons in his arsenal"
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Hey Sandy,

    Just wnated to say that I understand the puncture, the pain from that, and the dr not wanting to help you. Here is my horror story. I had an accidental puncture a year ago and a spinal headache that lasted a month, at least. I was getting an ESI (under a floroscope, too) lying there draped, but not sedated. And the dr says "Oh S***!" Then he explains that he got a "wet tap" and that he couldn't finish the injection. They did not keep me, just told me to go home and lie flat. Except that they let me get up from the special procedure area, walk out of the hospital, and ride home. The headache started about 4-5 hours later. Then when I called back and said spinal headache is unbearable, he said he couldn't do the blood patch because the cervical disc space was too small. All they did was to call in some Vicodin. Also I called every other hospital in the area to see if someone would do the blood patch. And no one wanted to try to fix another dr's mistake. I missed 2 weeks of work, but should have been off another 2-3 weeks until I actually felt better. That was the worst pain I ever experienced.

    In retrospect, I should have camped out in their ER and not left unitl they did something! I know I will never suffer like that again without taking action. Needless to say, I never went back to that dr or their clinic again. I had posted all of this on the old board as well. But I never knew anyone else who had the same experience.

    Now I am recovering from foot surgery. And at least for now, the surgeon has given me effective pain meds.


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