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Pain Management Problems ??
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seabreezn posted:
Approx. 9 months ago my long-time Dr. abruptlly left his practice with no forwarding references for many pt.'s , including me . Though I have an extensive medical history of burns ,severe back injury where I learned to walk again, ARDS an several gastro surgeries I had a heck of a time finding a primary internist in my area . When I did , my med. history was completely ignored as well as , everything I'd been taught by my 3 Dr.'s in 17 years ( as well as specialists etc. ) - it was hellacious . The first Dr. didn't record my allergies for 3 months ( some are critical ) an when I was in a car accident and complained of mid-line stomach pain which I don't normally have - it took him 9 days to order an ultra-sound even with all the stomach surg.'s I've had ...I was basically negated as a human being an as a friend mentioned would of been better off as a dog with a half decent owner who would take me to the Vet for care .After 6 months of this , I called a surgeon friend who lead me to another Internist who basically did the same thing - During this I had made an appt. with a pain management clinic as I had gone from a paced functional life , standing up & being able to do daily living requirements to house & bed bound with a pain level of 9 most of the time . Only getting 3 hours of sleep a night didn't help either -- Luckily , I was able to get into the pain clinic earlier and was assessed an told that the Dr. would confer with his staff and come up with a plan in 2 weeks .....When I got to the appt. I was told my then Dr. refused to work with them so , I couldn't receive help from the clinic......Long story short , I was helped to find a new Dr. who seems smart & kind and willing to work with the clinic . --My history involves being sensitive to meds . - either they have no effect , allergic or it takes high doses to have any effect - this is whether I'm conscious or unconsious . After being checked by many " they" believe it's due to having had extensive 3rd degree burns as a child which may have changed my neurons/synapses ....Over an over this has been reported .. Now , that I have an MD who will work with the clinic I made an appt. . I just received a phone call frm; them saying ' Your primary should keep you on the patch with no short-term meds and we can do nothing more for you ". .....I don't understand this ? Has anything like this happened to any of you ? I'm at a BORD level of 7-8 with the patch that has been proven to be effective for me for 48 hours yet , it's been perscribed for 72 hours ( my pain level goes up & function down even more ) and for many years I was perscribed 2 long term pain meds and a short term " break-thru " med. due to my brains reaction --Has anyone experianced this ??
I am seeing my new Dr. next week ,but after the last 9 months of being treated on a sub-human level I can't imagine living at this BORD level . I can handle being at a BORD of 5 as I also practice meditation , visualizaion , yogic breathing and isometrics .....Why isn't my longterm HX having any impact ? I'd just like to be able to get my groceries , do laundry = daily living requirements on a paced level and I also was about to start a business when my long term Dr. left last June-- which I would love to start up .
Is anyone running into the same situation or similar ? I can't imagine after fighting to survive all these surgeries and anomalys - putting my best foot forward to also help myself too end up being totally house bound an mostly bed bound when I was functioning at a higher level - standing up - 9 months ago ..Where is the logic and why hasn't my med. hx. had any impact ??? ..Thanks ,M.

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ctbeth responded:
Hello Seabreeze,

It has been shown that the blood level of fentanyl, when using the transdermal delivery/ patch, that the blood level decreases dramatically between the 48th to 72nd hour. I can post links to studies, if you would like.

This has been known for some years now and many pain management MDs are aware and order every 48 hour, rather than 72 hour, patch changes. Your MD friend may be willing to prescribe it this way. Will he/ she assist with your prescriptions until you get settled with a new MD?

As far as a long-acting opiate with a short-acting for breakthrough, this is the most common and efficient manner in which chronic pain is treated, at least from chemical analgesia.

I do not think that any MD would find this an unusual reaction, or that anything in your brain is wrong related to this common treatment.

Other than that, your situation sounds pretty difficult. I have never had any difficulty with continuity of care and/ or my medical notes being available and accessible. I hope that others will have some helpful thoughts and ideas for you.

Can your friend who is a surgeon assist you? I read that he/ she referred you to an internist. Perhaps this MD friend can refer you to a pain management MD.

May I ask: What is the nature of your pain syndrome? You said that you're experiencing pain, but didn't say what it's all about.

You don't have to tell, by the way. That's not a requirement here. You can tell as much or little as you wish.


May I ask a favour? Could you please use paragraphs or separations in your writing? It is difficult for me, (IDK about others) to read lots of info without a break. It is easier to follow if you'd be willing to do this, ok


Hang in there and let's hope that you'll get replies that are more useful than mine.


Hang in there,


CTB
 
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tuloud54 responded:
Hi Sea, Been there,Done that.Click my link so I don't have to bore the board with history. On the back page of insert with fentanyl patch it clearly says may only provide relief for 48 hrs.Learned this the hard way. I had pain pump on Nov 27,2012 so I know the pain you speak of. I really believe there are worse things then dying when severe,intractable pain is involved. Not an option because that is final. Now,let's get you some help! Reading my history will expain more but just know,you are not the first and unfortunately will not be the last to run into this brick wall. You have to keep the faith that others have found relief and so will you. Good,caring doctors are out there but not easy to find.Please keep looking. Do you have a Primary dr now?They may give you meds to make your search more comfortable.At least temporarily.Most dr will not do pain mgmt. but even 6 months will help you. Wish I had a name to give you but you have to fing the one,in your area,who will help.Please hang on and make it your full time job too fing that one dr you need.Trust that they are out there.I am living proof.God speed on your journey
 
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blessedladyptl responded:
seabreezen,

In recent yrs I've noticed that alot of drs just don't want to spend their time going through page after page of medical documentation of your medical history. It also seems that getting a new or current dr to agree with a dx and/or treatment from a previous dr(s) can be very difficult..

I've also noticed that it isn't unusual for specialists to want the pcp to write the rxs, especially if it is for pain meds, ect. Maybe your insurance company had a problem paying for the treatment the pain specialist was planning to do and that's why they said for your pcp to write the rxs and that they could do nothing more for you. Have you checked to verify is the pain dr is Board Certified ? Is the pain dr being investigated by your state medical board or have any history like that ?

Unless your dr has proven to you that he has read and knows and understands your medical history..don't depend on him knowing it. If you have concerns speak up and make reference to the med, dx and symptoms and treatment.. And it never hurts to remind the dr of drug allergies when your given a new rx and Talk To Your Pharmacist when getting new rxs filled.
 
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ctbeth replied to blessedladyptl's response:
Hi PTL, Seabreeze, et al~

What I, as an RN and a person with severe allergies, I find it beyond disturbing that any health care professional or provided would treat any patient without documentation of his/ her allergies is frightful.

I have severe allergies to certain drugs, foods, and substances. I don't even like to talk about allergies as there is a stigma of the highly allergic being Felix Unger-like and kind-of pathetic.

Growing up, along with my childhood structural issues, the allergies were a source of embarrassment. In addition to other horrific forms of bullying due to my medical problems and being skinny and having crooked teeth (seven years of braces and Lefort I jaw surgery), wearing thick glasses, one of the most-hurtful names the bullies called me was, "Nasal Drip".

I am a middle aged woman who now has straight teeth, contact lenses or Sarah Palin-type specs, my "skinny marrink" boney-ness of childhood has allowed me to go through five pregnancies and remain thin- BUT- the bullying to which I was subjected to as a child haunts me to this day.

I could write a book about the effects of bullying on the disabled child, but it's still too painful for me to think about for more-than a paragraph.

To put the past in its place behind me, I write this only because it can be a life-threatening situation

I am allergic to, among other things, Latex. I have tested respiratory positive, which means exposure to latex is dangerous to me, and not just itchy hives. I can go from fine (relatively, LOL) to respiratory arrest within minutes of exposure.

Most health care offices do not use latex anymore, but some do. For a health care provider to not ask my allergies is risking my life.

Same with my being allergic to shellfish. IV contrast is akin to strichnine to me, and anyone who is allergic to shellfish.

I am also allergic to Sulfa abx. My initial exposure resulted in anaphylaxis. As an RN, I know the names of abx that are sulfa based, but any MD who treats me has a professional and moral obligation to be aware of substances that can cause discomfort, damage, or even death to his/ her patients.

I have had one MD, a neurologist, to whom I was sent by workers comp, refuse to evaluate me because my medical records were too lengthy. I'd far prefer a health care professional to refuse to see me due to my history, than to evaluate and/ or treat me without knowing a brief outline of my medical hx.

I would ask that ANYONE who has experienced his/ her MD treating him without knowledge of medical hx, please post to this thread.

I will become very pro-active if this trend is taking hold.

It is unacceptable and against all standards of practice!

I am so disgusted to hear that you have been exposed to this shoddy medical care.

<3,

Bet
 
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seabreezn replied to ctbeth's response:
Hi CTB- I'm glad to see your initals again as I wrote a few months ago at a loss and you were kind enough to reply - I had trouble getting back into WeB at the time an therefore didn't reply back - I'm frm; ME. Perhaps this will ring a bell ?..
Certainly , I will break down writing w/ more paragraphs - once on a roll one tends to think you'll run out of space !
Re; pain ...at 2 was burned by 500 degree oil =60% body burns = excellant care & no problems were encountered until I became an adult and thru accidents , surgeries etc . MD's . Specialists etc found I didn't react to rx as normal - wakeing up in surgeries , no effects frm; pain meds or other meds - it's a long list with many variances. As is my history , I'll probly leave a few things out !
Med.Hx; severe back injury frm; work in end-stage care where I had to learn to walk again . It took a search of several Dr,'s to find one that actually helped me get back on my feet an taught me how to work with my back = ROM etc ..then began diverticulittis @ a young age which resulted in 6 surgeries . The third surgery I developed ARDS afterwards an luckilly had a good pulmonist onboard an with my Ex at the hospital for 2 months minus just 2 hours I survived this anomaly that kills 7 out of 10 people = a miracle . This was when my back reflared and fortunatelly my specialist became my primary for 10 years of monthly visits - He an staff had witnessed my reactions to RX - for a week or so they had to posie me as hosp. pharm couldn't find anything to put me into twilight - there are many documents covering all these seperate RX situations. For the first year I fought my Dr. regarding taking meds for pain as I thought I'd find a way to help myself - which lead me to do allot of good things but , meds were necc.
Also , had broken tib/fib x2 , Hep C frm; needle stick working as Dialysis Clinican ...O' it's a long list . But , with good Dr.'s who I saw monthly for 14 years then, my last long term Dr, I saw every 3 months (due to distance) , I survived an continued to work in Healthcare then , to later become a Chef. With a mixture of medications mostly taken PRN I was able to work and flourish for many years .
The last RX combination I was put on after a week in hospital clearing the system then , trying differant medicines to see what would effect me. This regiment was maintained without change ( I requested lowering one ) for years as it was hard to attain because of allergies , no reactions etc.
My last long term Dr. left with little warning last June - he left without providing follow-ups for many . From that point on it has been a nightmare of a journey - I was completely disregarded as a human being by the first Dr. of 6 months - my med.hx. was never taken into account including problems that arose while I was a pt. , let alone any pain management . The second Dr. didn't refer to my HX either and her ideaology was there was no need for medicine as yoga , vitamins etc could fix anything .......by this point I was running on 3 hours sleep a night , in horrific debilitating pain = stomach , back , right leg to the degree I wanted to take a long walk off a short pier so to speak. Faith , friends an spirit are what kept me afloat .
I am now with a new Dr. who seems , kind , smart and has said aloud " I want to help you " yet , when he looks at my medication regiment of the past he's perplexed .
I am now back on the patch ( went from an 8-9 on BORD to a 7 ) as you refered to and the 3rd day is downhill , I have no break-thru meds . Which have proven in the past to give me flexability as now I'm still house/ bed bound pretty much .
The real killer is - I was just beginning to start a new business last June an had great hope with people being very interested ..I have 70ish characters left ! So , - there you go for now - What has been your experience ? Thanks for replying ...
 
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seabreezn replied to blessedladyptl's response:
Your so right on the money about all you mentioned ! The regiment I was on for many years took a-long time to establish because of my brain either not reacting , allergies etc...However , when I was on that regiment before last June , it was all ok'd by every fraction possible insurance -state-gov. as my medication was in high doses . This was not a regiment that grew with time - I was given the high doses all at once because of my brain anomaly> they believe has to do with severe burns at a young age changing the neurons an synapses .
After 9 months of pure living hell , I'm with a new Dr. who said on my first appt. last week " I want to help you " ..O' from his lips to God's ear and back again please !
Thanks so much for writing to me , I really appreciate it as you know at times you can feel like your in a hobbit hole looking to climb out but , there's no finger grips !
I hope this reply finds you feeling your best today . Thanks much ..
 
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seabreezn replied to ctbeth's response:
Bet - If you live in the Northeast-ME. , you'll find this problem often a subject of discussion an fear .
What makes absolutelly no sense to me is - you may have a long health HX but , you have survived an are not amidst these vast problems now . Yes , we carry our long HX's of health issues be it surg's , meds , allergies - however , this is now all uncovered , vital information that I would think would make a Dr.'s job easier - it's primarily on reference check not a pt. in the throws of chaos an then having to discover why ...
I was also in the healthfield for many years - doing inhome " end-stage " care an as a Dialysis Clinican ....the old rule use to be 85% of prognosis is history . Yet , even if you walk in with a medical synopsis of date - Dr.- procedure - outcome and allergy list . This has proven at times not to be of any worth .. It's very twilight zoneish to be treated as if you've never experianced anything and very dangerous - plus , totally negatting as a human being .
My hope is you have good physicians on board now and stand tall in spirit from all that you've been through .
Thanks so much for writing , I appreciate it .
 
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seabreezn replied to ctbeth's response:
Hey CTB - I would appreciate those links re; the patch ..I'm new to this site and don't know the protocals ...if I answer you directly frm; my email does that go to you or straight to the overall site ?
This is the first time my continuity of care has been interrupted - here , the over-all complaint is that Dr.'s are not taking time to review HX of pt. . Especially if on medicare ..
As you know illness happens in a moment in midst of a regular day . Personally , I fought to stay employed until my Dr.'s said " No more " and no matter what your savings , pension , 401K etc eventually they all become drained . Here in ME. ( also in other Notheast states ) the healthcare industry is getting ready for the changes around the corner ..Unfortunately , some people are being lost in the shuffle as Dr.'s are leaving here without proper preperation.
At my last long-term care Dr.'s appt . he literally threw up his hands and said " They're saying it's physician abandonment " I said that's a legal term not to be taken likely " I didn't become a Dr. to treat people like they're on a deli line with no indidviduality , I'm young an becoming bitter " ..and I was thrown under the bus even though he worked for a large hospital , they told me " case closed " .
Your sick and in pain , how do you fight and continue to search for care ? The next Dr. was a nightmare as I've written before an will be reported . As I've told my friends in healthcare - they were astonished at both of these Dr.'s actions .
Last June 2012 I was able to stand upright an lead a paced but , functional life . Then , in a breath , it was ' acceptable " to 2 Dr.'s that I wasn't able to ...I asked the 2nd Dr. " Is there any ethical point in your mind where suffering is not acceptable " she shook her head "No"....
Thankfully , by dialing a wrong number to a Dr. office 2 weeks ago searching for an appt . .I reached the finance dept . and she asked me why I was calling so , I told her a brief background and she responded by saying " We're going onto a conference line so I can stay with you until we get you some help " and by God she did . Which lead me to my new Dr. - You never know how help will show up in your life as long as your willing to keep going no matter how bleak it seems . Like this website & you taking the time to reply .
Thanks again , take good care .Seabreezn
 
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seabreezn replied to tuloud54's response:
Hi tuloud54 - Tried to click your link but , had a pop that said there was no background story ? I did read some of your replies to others - you have gained allot of knowledge down the path you've walked .
To answer your ?- Yes , I found a new Dr. form all places a mistaken phone call to a Dr.'s office where I ended up in the " Finance dept " - the woman asked what I was looking for I told her a brief background and she said I'm placing you on a conference line until we find you someone to help . 6 days later I was in my new Dr.'s office , who said " After hearing your story and checking your files I want to help you "...ahhhhhhhh a finger grip out of the hole from hell . I have another appt. tomorrow so , we can continue . I do have hope .
Though my medical friends don't understand why I'd need a pain clinic considering my HX. as I went through the experience of the last 2 sub-human Dr.'s , I thought I had better find out whose good and make an appt. pronto - Long story short , they were able to get me in months ahead , I met with the Specialist in pain - he told me that he would meet with his staff , they would discuss my case and in 2 weeks they would have a plan . The longest 2 weeks ever ! The second appt. I saw an NP who told me forthright " You were dumped " ( frm; the hospital that my long term Dr. left ) and said she was sorry I had traveled to see them as my then Dr. refused to work with them . Therefore no plan . I get the new Dr. and he agree's to work with them so ,I call and asked them to fax the paperwork . 2 days later the specialists secretary called and said " The Specialist & the NP met , they decided I should stay on the patch with no break thru med. and they could do nothing for me "???? This said 2 things to me A- they didn't check my HX and B- at my first appt . as I was waiting a man walked in -straight backed with a steady stride as he was waiting he told me about his life . He had been an ill Enson in the Navy , they wanted him to retire early , he wouldn't without his med. benefits - he got them and now "Runs a farm "!!!! A farm , good Gawd I just want not to be house-bed bound as before 6/12 , run a farm !!! I thought that I had landed at the right clinic....there is an acute difference between us , he has med. benefits frm; the Navy . After years of fighting my Dr.'s to keep working they " retired me " = disability . No matter how well your pension is stocked etc..eventually it dissappears and your left with medicare and if your fortunate an insurance for RX . As you've read the Dr. said a staff meeting would decide , though it boiled down to him an the NP ..the insurance inequality I believe made a big difference .
I hope tomorrow with my new Dr. I can get out of BORD# 7 to a 5 again which I can handle - this was never with the patch alone as , has been proven in this past week and years of med. hx. ..........Thanks for your words of support and giving me the oppurtunity to spew my frustrations .
May this message find you feeling your best , thanks for reaching out . Seabreezn
 
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Anon_57995 replied to seabreezn's response:
Hi Seabreezn,

If you post a reply to something that I have posted, your reply will show up at the end of the thread. This is a very user friendly site.

I'm not home right now-visiting and playing on a tablet.

I'll address your questions and/ or comments tomorrow, when I get home.

Talk to you then,

CTBeth
 
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lorigibs40734 responded:
I do hope you find an MD that will actually help you. Back in December I had a terrible time as my PM clinic closed the Pain management side of their practice.

I was without pain meds for about 2 wks before I actually got in to see someone else and it was a terrible experience. This is on another thread but I am back at the PM clinic now (Thank God!)

It's horrible to have to go through all of the hoops and crap to get proper care. I do hope that you get the proper care you need.
 
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tuloud54 replied to seabreezn's response:
No history posted but my story is under the discussion sections.Funny how a misdialed number got through to someone who may help you.Praying extra hard you get just a little more relief. There are no accidents in my mind. I feel ok today and for anyone having bad pain,Ok is huge.Never thought I would feel Ok again.You have to never quit but it is extra trying when you hurt so bad you would do anything,anything for even Some relief.Unless it had happened to me.I never could have imagined the degree of pain I was in. Guess it's true that nothing happens until it happens to you.Godspeed in your search and you are never alone.
 
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seabreezn replied to tuloud54's response:
Hey tuloud54 - Glad to hear your feeling okay in your state of body ...I also believe your never alone even in the darkest hours . ..I was indoctrinated heavilly into Catholicism as a young child which lead to the Convent as a teen -outta there ! Studied many forms of religion / spirituality/ cultures but , learned most from my Nana who was very gifted psychically & working in what used to be termed " end stage " care where my job was not only to provide physical care but , to make sure that the person had power an grace as long as possible . Also , my own NDE's taught me quite a bit ..why do you feel this way ? What gives you that internal strength ? ....
Must get ready for the 2nd appt. with the new Dr. , though not asked , I'm providing daily pain sheets & info frm; the patch instructs . Thanks allot , hope you enjoy your day ..Sea
 
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seabreezn replied to lorigibs40734's response:
Lordy , 2 weeks can be a long time , I hope you provided yourself with some coverage to avoid complete withdrawals - that's very dangerous . God forbid this happens again but , "if" try reaching out to a Pt. Advocate . It's against the law to just throw you under the bus without meds. to atleast withdraw slowly .
Thanks for your support an good wishes , I hope today your feeling your best ! Seabreezn


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