Epidural

Thanks, Ruth and PA. In this doc's defense, I have to say that she hasn't been prescribing this med to me before. It is one of several which was prescribed when last I was in the hospital. I asked her to continue to regimen they had established as it seemed to be quite effective. In fact I felt more functional than I had in many years. That is when she told me she felt the hospitals' prescriptions were inappropriate for me since I was not suffering end-stage cancer pain. She agreed to write one prescription for one of the medications but only one. I think she believed I should not need it after that since I should be "recovered" from the episode that put me in the hospital. She just doesn't get that the hospitalization itself was really due to how uncontrolled the pain had been up to that point. The "healthy" (relatively speaking) part of my back simply gave out after working overtime for so long to compensate for the injured parts.

I am frustrated with her, to be sure, but I have not been seeing her for long so she does not know me well. I imagine for each of us who have authentic intractable pain our doctors also see at least one person who falsely claims to have pain in an effort to get medication. For most of us who really suffer, getting "high" from a drug is nearly impossible as it seems the drug is entirely used up in fighting the disease, but still I can't blame doctors for being a little wary about prescribing such powerful medications. I think too often the doctors who DO effectively treat their patients' pain have been penalized for it by overzealous medical associations or law enforcement. I try to remind myself of that when doctors like the one I am seeing now are reluctant to write prescriptions. Still I hope one day each of us will find one of those brave doctors who truly put the welfare of their patients first. Maybe someday we will even find the one who will treat the source of the pain so we wouldn't need to be so tied to our medicine cabinets. Wouldn't that be wonderful?

You are right, Keah. It is crazy how hard it is to get adequate pain management especially with all the new medicines that are being discovered/created. I am frustrated with myself sometimes that I find it so hard to stand up for myself and really advocate for myself when I'm speaking with the doctors. I was the primary care giver for my grandparents before they died and now am the primary care giver for my parents, and I have never had the least bit of trouble advocating for them! It is so much harder to do when you are the patient, though, don't you find? I grew up with this perception that doctors were never to be questioned or challenged. As my search for help drags on and I read more and more about how common under-treatment of pain is, I am realizing that I need to adjust my thinking on that point.

I am planning to continue my search for a doctor who will finally treat my pain. It's encouraging to know that it is possible - if I can just find a doctor who is willing to prescribe what the hospital did. At least it gives me back a little of the hope I'd lost. I hope people who read these posts are encouraged too. It took me 6 years to find a treatment that helped. It didn't take my pain away, but it mediated it enough that I was really able to function again. I am determined not to give up until I get that back! I hope the rest of you don't give up either. There has to be someone out there who will help!

Keah - I loved your post because it details an aspect that I think we underestimate in importance - the competence and caring of office staff, the ones responsible for following through. And yes, I think our pain makes advocating for ourselves so much more difficult. It's so draining and most of us have little extra energy - especially when you've got to follow up over and over and over again with doctors offices, insurances, etc. And I've worked in health care, too - pity the people who don't have a clue about the system. I also think what then happens is we get labeled as a pain in the butt by staff, and the chart gets put aside, or there's only a half-hearted attempt to follow through. Passive-aggressive stuff, and when we're the patient we have the least power, at least in the moment. I remember having to fight for my mother while she was dying, and it took away from the quality of time I had left for her, but at least I wasn't suffering from chronic pain at the time. Thank goodness.

Ryand - it did help me to read that you did have success finding a regimen that allowed you to function, even though it took six years. I'm into year 4, and I've lost so much of my life, I believe, because of inadequate pain management. I'm going to have a heart to heart with my neurologist next week, but he keeps saying how he doesn't prescribe narcotics. Using a PCP left me begging for 2 vicodin/day. I'm currenly getting meds from my neurosurgeon, but I know eventually he's going to want to refer me out. I hope that one day sooon I can find the right combination of meds, activities, etc, that will allow me to return to some level of functioning before I have no life left to live. Keep fighting to get what you need back!

PAlady - I'm glad to hear that my experience has encouraged you. Keep the hope - I really believe the right combination of treatments (medicine, PT, counseling, procedures, etc.) for each of us is out there. It is just a matter of not giving up until we find it.

Keah - I hope you've been able to get the help you need too by the time you see this post.

Thank you both for your encouragement.

It is certainly posts like this one Ry and PA that make me count my blessings for my Doc, I think I will send him a thank you note this week for good measure!

Keah my Dad passed away in 98 from Lung CA that went undiagnosed or maybe I should say misdiagnosed for several years and he ran thru every known Doc and type searching out relief that I wish now I had paid far more attention to his complaints myself as I know he suffered needlessly for a long time. He had massive shoulder and upper back pain and they treated him for bursisitis,arthritis,pinched nerves,well you get the pic and in the end his cardio found the CA in a routine chest x-ray and it had eroded into the scapula and thus the pain in the areas of concern.

When he was sent to oncology it was far too late at that point to try much of anything but I recall taking him to the drugstore and him being embarrased by the ungodly huge bottle of nonother then darvocet! Yep he got something like 480 of them a month if you can imagine and he ate them like tums, He would have so much pain still I had seen him literally beat his shoulder on the brick wall of his patio and I would beg him to stop,all the time saying that pain from acute injury(beating the wall) was far easier to handle then the chronic and it helped him to forget the pain for awhile. How very sad for me now to know how much he went thru until we haulted all treatment by all Docs and turned him over to hospice,even though he only lived a few weeks after that he was NOT in any real pain thanks to them!

So yes alot of CA patients still do not get adequate pain relief in end stage and it seem the older the pateint the less they get for some reason.

Years ago there was a very brave and outspoken guy who advocated for CP and had a website for compassionate Docs and he himslef was a CPer,they site was a Godsend for many many CPPS for years and he didnt stop there! He spent money of his own and went out and lobbied congress and made his voice heard and he was not a bit afraid to make statemtns concerning the irrational thinking of Docs who refused to treat their pain patients adequately. He fought for years doing just this and then things started to happen to him and his wife and friends,things that shouldnt have been happening,arrests without probable cause,traffic stops,problems with the pharmacies,calls to his Docs,Social service visits to the kids schools,all kinds of tragic things that couldnt be explained but under it all everyone knew who he had P.Od and he finally had to close up shop and go under the table so to speak to be able to live without fear of his family suffering. This story is real and I knew him and had met him at a meeting here or there concerning PM and I know the  things he was exposed to and accused of faslely.

That was as I said several years ago now and things have gotten better as now the numbers of folks actually doing the advocating and speaking out are far greater so it isnt as easy to push them under.

Ry the right Doc is out there for and PAlady and all those other folks being undertreated and yes it is difficult for us to stand up for ourselves as we dont want to look like drug seekers but it is the only way to make our lives more meaningful. Sometimes travel is necessary but with the changing regulations on prescribing schedule 2 meds this wont be such a hassle anylonger and the travel wont have to be made on a monthly basis now as it did in the past.

Dont give in and dont let them force you to live in pain and this especially holds true if you have no answers to what is causing this pain as you can see from my Dads story it is absolutely imparrative you find the right answers no matter what it takes.

Fight the insurance companies,the PPO's,HMO's,medicaid whomever to get the approvals needed to find answers. Write letters and send themt ot he Docs requesting whatever it is your being ingored about,a signature delivary costs very little more then regular mail and make copies! If you still get nowhere you have a basis to turn over to your attorney and maybe then he can get their attention and this isnt something you want to do without exhausting all of your resources first but at least you will know your lying the ground work to win if need be.

Do a search on any Docs you are going to see and their are web sites for good and bad Docs and those who have been reported for whatever or sanctioned,reprimended,suspended in any state etc. If the Docs is good word will travel much slower then if he is a bad one.

Good luck to all of you and sharing your good Doc is a great thing to do and one of the sure ways to know you have found one that cares.

Ry I live in Central KY and it is just as difficult here and sometimes more so with all the hype and oxy deaths we had in the mountain areas and the drug wars took hold here. They implemented a narcotic tracking system for the state that actually alerts the pharmacy as well as the Doc if he actually requests a run on you as to what narcotics you have filled since the system was established,some gripe about it but I see it as a tool to prevent diversion and Doc shopping and abuse of narcotic meds and with better handles on those things comes far better care for us the CPP's. It is certainly sad these kinds of things had to be implemented but they did and they seem to have made a great impact on how lenient Docs are with their prescribing methods since they donthave to worry so much over who is diverting and abusing anymore.

The mountain regions here are poor areas with higher then national avergae of unemployement rates and with a great many of those come welfare and medicaid and diversion of narcotics to supplement their incomes. Those areas are hardest hit with addiction issues due to the fact they have low self esteem,no jobs,nothing to do all day and the stress factors of those things alone wrecks havoc with addiction issues and alcoholism. We however did not have a great many places that treated these folks either and the outreach programs up there with the mental health clinics were not open but maybe one day as week,their are no facilities for inpatient treatment and I believe this is the route to slowing the addiction down,without proper and continous treatment and follow-up they go right back where they were.

The drug war here wrought many changes for the way we treated those with addiction issues and many new methadone clinics exist in the mountain regions now as well as several new inpatient clinics and the tracking system and more availabilty and access to education and literacy programs to assist in job placement with the help of the cabinet for Human rsources implementing programs for relocation for schooling and jobs. They are working in the right direction here to prevent the accidental deaths,diversion and abuse and all of that makes the way for better care of us the CP.

Did not mean to go ona a tangent there but it is working and that is what counts,they dont send them to prison as much anymore since our jails were overcrowded with addicts and that has never helped control the problem,the key is treatment in my book.

We have several good PM clinic here and far more Pcp Docs who can and do treat patients with intractable pain issues.

I saw where PAlady mentioned going to Cleveland and I have a friend who goes to a PM there and he has been going there for several years and refuses now that things have gotten better here in this state to try to find a new Doc closer to home,he says no reason as he is getting good care there and doesnt mind the travel and expenses since he went for so long without getting help.

I dont know if you recall from my other posts that my Doc is Internal Medicine and not PM but he see's a great many pain patients and it is probably the bulk of his numbers these days. He has had his fair share of problems with those who watch simply because he isnt PM and see's so many PM patients. I might add he also gets his fair share of those drug seeking since word of mouth gets around that he will prescribe opiates. He is careful more these days in new patients and transfer records and good documentation of pain issues and he was alot more lax in those things in past years,sad enough that due to those who never gave a thought to the many legit patients that were going to be hurt if he was suspended or reprimended due to their drug seeking behaviors he has had to chnage and implement alot of policies he never bothered with in the past.

PAlady I wil be more then glad to get the name of that Cleveland clinic for you and pass it on if you like.

Ry is there is anyway I can be of help to you dont hesitate to ask and now that folks here realize your looking for a Doc they may pass on a name or 2 for you. This is the one best way I know to get the right Docs.

PA, about those memory foam beds. I wish there was a way to wear mine! If I could just get it wrapped around me somehow I think I would have total relief all day as well as all night. LOL

It is by far the best investment I have made in this journey and I had my doubts in the begining as to how well a bed could change my pain levels but I am living breathing proof it has helped tremendously. I use to take almost a half an hour to get myself out of bed rolling around this way and that screaming from the pain of it all and just lying hanging half on and half off the old bed until i could get in a position to manuever out somehow,now I just roll over and out like a normal human without all the moans and groans and screams of pain! Iuse the flad bed frame without a box spring that allowed me to put the bed a level that made it easy for me to turn over and set my feet on the floor with my back and knee's in a alignement that worked without putting either in a bind. That bed prbably cost me more then any one piece of furniture in my house and I got it several years ago so they were still relatively high but not so now.

Sorry again for the length as I swear I get started and just cant shut up some days!