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SheeSpy 03-15-2012 06:31 PM

How to ask PM doctor to increase pain meds

I have Hereditary Angioedema, fibromyalgia, and chronic pain. I am a 39 yo female and have been seeing my PM dr. for about 6 years.

I have always been compliant in my treatment, and try everything my doctor suggests (except drugs to specifically treat fibro like Lyrica etc.). The different things I have tried and many I continue to do are Physical Therapy, Biofeedback, Massage, Chi gong, Trigger Point Injections, and release, Laser Therapy, Prolotherapy, Chiropractic, Acupuncture, Chinese Herbs, Super Clean Diet - Vegan - Fruit/Veggies/Nuts/Beans - nothing processed - I work out 3-4x a week at Boot Camp - and I walk/run 10-12 miles a week.:dizzy: - OH and stopped using alcohol to self medicate -

My pain is somewhat "controlled" daily with 5mg/325 Hydrocodone/Acetaminophen 3x per day (usually I take halves - but get to the same amount) Been on this amount for like 4 or 5 years with no increase. I also get 15x2.5 mg Diazapam per month take as needed. For break-thru pain I have 200 mcg Phentanyl suckers. I HATE the Phentanyl and hardly ever use it - so when I am feeling ok I will only take 2.5 Hydrocones and occasionally take an extra one per day - My RX says it is okay, however 90 must last 30 days....I am on contract and have to do urine samples.

I work a full time job, am fairly active, including training for half marathons (mostly walking) and eventually a triathlon...In addition I ride on the back with my husband on a Harley (will never ride my own cuz of my conditions..) The furthest I have been able to ride is about 2 hours - but we have been slowly working up to a little further every year.

So my question is - I would like to ask my doctor to add Percocet to my pain management instead of Phentanyl - about 10 of the low dose a month for break-thru pain. On the weekends mostly when we are home and I am more active is when I really notice the pain - or if I am having a Herditary Angioedema attack - its really bad. A friend gave me some one weekend when I was really bad and it literally gave me my weekend back instead of laying in bed all weekend.

So my main problem is I freeze up at the doctor. I don't know why. Or if I try to talk, I will start crying. I am not this way at all in normal life - and I see another doctor 2x a week every week and don't have that problem at all - so I'm not afraid of doctors - it's just seems like as soon as I go to my pain management doctor and/or his office - also see a Nurse Practitioner in between seeing him I freak out...I'm scared to death to ask for more pain meds - and I honestly don't know why.

Does the Percocet seem like a reasonable request? My condition is very extreme - I actually use to be on Disability I was so sick - but have been able to overcome a lot with new treatments that have become available in the last 7 years. My doctor tells me often he wishes he had more patients like me that have been able to improve as much as I have - but the problem is, I still have a lot of pain, and just want to keep it controlled and not sleep my entire weekends away because of the pain.

The other problem is when I start to cry - he always thinks I am depressed and wants me to take antidepressants...I'm honestly not depressed though and I've tried many antidepressants over the years because doctors didn't know what was wrong with me and I always have had severe reactions to them - serious weight gain, suicidal thoughts, high blood pressure.

So I guess my questions are - How do I ask/talk to my doctor about new pain med without sounding like a drug seeker or crying and sounding like a buffoon - and with my chronic pain, does this seem like a reasonable amount of meds to ask for. My husband is also in support of me asking as he saw how much the Percocet helped me -

Thanks, I appreciate your insight - and if you have any more questions about my medical conditions that may help, please ask. I don't see my PM until next month, but really am trying to be prepared for this.:confused:

Brokend 03-19-2012 07:55 AM

Re: How to ask PM doctor to increase pain meds

I have Hereditary Angioedema, [b]fibromyalgia[/b], and chronic pain. I am a 39 yo female and have been seeing my PM dr. for about 6 years.

I have always been compliant in my treatment, and try everything my doctor suggests ([b]except[/b] drugs to specifically treat fibro like Lyrica etc.).[/QUOTE]

Was that an error or did you really mean you have tried everything except for medications specifically for Fibromyalgia?

If it wasn't an error, why would you refuse the medication most commonly used for a condition that you have? I would imagine that most doctors would become instantly suspicious and the PM red flags would rise quickly.
I'm not saying you don't have your reasons, just that it sounds strange that someone would turn it down is all.
Anyway, as far as asking your PM doctor about an increase or change in medication to something more potent or personally effective, that's a toss up on how it might work out for you. Most folks are too terrified of triggering the red flag to ask (but I mean, c'mon, what [i]isn't[/i] a red flag anymore?) for an increase, and would suggest that you should simply report that your pain wasn't being adequately controlled and hope the doc gives you something extra. However, your doctor seems like he might be more lenient and open to such things, so maybe you could just come right out and ask? I dunno. Only you know your doctor, not us. It's really your call.

SheeSpy 03-19-2012 01:03 PM

Re: How to ask PM doctor to increase pain meds
No it was not an error - the reason I won't take the medications that are all new that are for "fibromyalgia" is because I have had severe bad reactions to medications I have tried in the past. I was on Cymbalta and gained over 50lbs in just a few months, began having suicidal thoughts and my blood pressure went from always being 105/70 to 150/95. I have tried many of the other "common treatments" - (I cannot remember all the names of what I have tried - but have tried many over the years) it seems I am the 1% and end up with severe side effects - and no relief. I do take compouded thyroid which has helped tremendously and Ambien CR- which is a huge componenet of fibromyalgia is not sleeping. In addition, I typically take the steroid Oxandralone for the HAE which would interfere with many of the medications I'm not refusing commonly used medication -

The fibromyalgia is not my main problem though anyways - as I mentioned I do multiple other treatments for the fibromyalgia that helps, it is actually the Herediatary Angioedema that causes the extreme breakthru pain. I am on treatment for the HAE - ...and get is $4500.00 per infusion 2x per week - Roughly $45,000.00 per month for the rest of my life. Right now I am on a study that I am getting additional infusions - instead of 1000cc's Cinryze, I am getting 2500cc's 2x per week - which is the equivilant of $110,000.00 per month. However even at this level of infusion this weekend was another weekend spent unable to participate in "life" due to abdominal pain/swelling from the HAE.

The study will be over in May - and I will go back down to the usual dosing of 1,000cc's 2x a week and back on a higher dose of the "steroid" medication Oxandralone. So I am afraid of where I will be in May and just trying to prepare for the lower dosing on the Cinryze.

I get what your saying - I guess I am just wondering what an effective way of asking would be - I do like your suggestion of explaining that my pain is not being adequately managed. My husband told me to explain to him that the Phentanyl is too short lived - and the side effects are uncomfortable and I would like to try something else. - and you are probably correct in the fact that everything is a "red flag" these days. My biggest problem is I have a tendency to freeze up as when I start talking about my pain and I become an emotional wreck, and sound depressed.

I was just looking for some different recommendations and wondering about other peoples pain management, and a few different ideas on how to approach it.


BB07 03-19-2012 03:45 PM

Re: How to ask PM doctor to increase pain meds
it is somewhat unusual the way you say you need something other than the fent lollipops for bt pain-the 5mg hydro's are also use as a bt med-have you ever or why aren't you prescribed la(long acting) narcotic med-then, if you have actual "BT" pain, that's when the hydro, or percocet, or even fent lollipops(all short acting narcotics) would be for. the combination of narcotics your doc has you on is certainly not typical for CP-so i was wondering, what do you think break-thru(bt) pain actually is? also, on your current regime what is your pain level?

feelbad 03-20-2012 11:04 AM

Re: How to ask PM doctor to increase pain meds
i have to agree with BB here. why are you not already on some type of a more long acting narcotic as opposed to what really sounds like a big old roller coaster of pain you are dealing with? i am assuming here by the fact that you stated your contract and the UAs that this IS an actual PM doc who you have been seeing all this time? 'most' actual PM docs really DO like to have patients actually ON at least some type of the more long acting narcotics with something also in place for any BT pain as well. it is just more the 'standard protocal anyways in PM.

just so you know, trust me here when i say you are NOT at all alone in ending up with totally off the flippin wall types of responses(MANY people respond like this too) to esp the anti S meds or many others i have tried as well. some of these 'other' meds just seriously can inpact us in sooo many different ways depending upon any other conditions and or other meds we may also have/take that they simply DO react to as well, or just our own individual bodys physiology. and i have personally given up trying ANYMORE of the 'new meds' myself, only becasue of the past reactions i have had to other 'new' ones. the actual 'real trial' of ANY new med is not during the "drug trials" the drug companies do, it is only when it gets our to the much much larger population where certain other factors just come into play that the 'real' trial starts. that is when certain meds will be pulled, only AFTER they either kill someone or casue some type of actual organ failure among other medical 'possibles'. i just do NOT have anymore "faith' in ANY drug company anymore. and no way do i 'trust' the FDA either.(sorry for the rant, but it does make me sick in how they 'do' this TO us)

to actually have your pain even 'somewhat controlled' on hydro, and the much lower end of the narcotic spectrum, and halves at that, then have you take as a BT med what just is the strongest narcotic out there just seems a bit odd to me as well.

it would just make much more basic common sense to me to place you on either oxycontin(Xs 3 per day or every 8 hours since this does NOT at all come close to actually lasting 12 freakin hours) or MS contin and try and use the 'whole' hydro as your BT med, instead of the 'halves' that have you now 'somewhat controlled. or some other type of configuration using the LA types of meds. it is what you described as having the different types of pain generators you mentioned along with the INSANE amount of money you are being forced to spend like every single month that honestly, unless you won the lottery, i could not even consider at all just given how things are out there today, ya know? if you just CAN get this pain much better controlled using only the LA and BT narcotics, you may not HAVE TO even consider the other meds that appear to be costing you a small fortune.

what exactly IS 'hereditary angioedema", and how does this affect you as far as generating pain?

the one thing i would suggest doing when you see your PM to discuss this new possible with the LAs would be to either take your husband or a really close friend along with you to just help with the asking per what YOU tell them you simply need, or just to help give you the overall support you need so YOU can feel strong enough to simply discuss it with him. just an idea that may help.

i just really feel that the use of LAs and BT hydro may help much more, and possibly in many other ways as well, than the really two ends of the spectrum type of narcotic regemine you are currently on would. just even being on any of the more 'constant' types of narcotics would help keep your overall pain more in 'check' for you than what you are doing now. or it 'should'. hopefully your body has not 'accomodated to' the fent as it could have if you were taking this as a more LA med would. it is simply the strongest type of narcotic out there. good luck with this and please DO keep us posted, marcia

SheeSpy 03-20-2012 12:26 PM

Re: How to ask PM doctor to increase pain meds
Thanks so much for your questions and replies -

Hereditary Angioedema is a rare, inherited illness that causes episodes of sudden severe swelling of the hands, feet, face, intestines (this is what I get the most in my intestines - its like having a blockage) throat and air passageways. It can be fatal. The cause of HAE is an abnormal gene that results in low levels of C1 inhibitor protein. The Infusions that I am getting are the C1 inhibitor Protein - and its called Cinryze - it is taken from Human Plasma and freeze dried. That is why it is so expensive. I have insurance - but alot of out of pocket, fortunately because it is such a rare disease I do get help from non-profit companies. Without the Cinryze my days would consist of severe vomiting, throat swelling, hospital beds and possible death. So as far as not taking the Cinryze at this time would not be an option. I go 2x a week for infusions and would not trade it for anything. I literally have a life now...

As far as my daily pain, it runs about a 5-6 without meds and I can get it to a 2-3 with the hydrocodone - I do work full time - am an office manager, so I need to be coherent and able to drive. So I take the half before I wake up - and another half when I get to work so I am not a zombie - and can drive/function. 1/2 at lunch - 1/2 in the afternoon - and usually a whole one when I get home from work at 6:00 -

The break-thru pain is usually from the HAE when I have a severe attack. Which usually lasts about 2 days. The pain literally is worse than labor pains. It was easy having a baby compared to the pain I get from the HAE attacks. So as far as a number - not sure but - I basically want to die...The severe attacks can come on any time, most doctors still don't completely understand HAE, but I have figured out that it coincides with my hormones - and I know what triggers it. A very big part of why I eat so clean and have learned stress management.

I think that is why my doctor gave me phentanyl - so I could treat the pain fast - and also because in the severe attacks typically I would vomit for 2-3 days. So taking medication was difficult. But that has changed, and I don't usually vomit anymore with the Cinryze infusions - and/or the steroids. The percocet would replace the phentanyl as I would only take it during an attack - I literally HATE the way the phentanyl makes me feel - plus it scares me....and there have been many times where I have chosen the pain over the phentanyl...

You are probably right - I think I am on a roller coaster of pain - that is why I have a tendency to cry when I go to the doctors as I am frustrated and depressed about my pain - but at the same time I am doing so much better than I was - I know my doctor looks at me and hears about how far I have come and tells me flat out I should be really proud of where I am and acknowledge that - but that doesn't take away the pain when I am having a severe attack.

Oh and yes - he is an actual pain management doctor. Considered one of the best in my area. He is so busy I can only get in to him every 4-6 months - so I see a Nurse Practitioner in between those appts. He has been very knowledgeable and doesn't just prescribe meds. He suggests many alternative therapies - which have really helped.

I would love to take my husband with me - but he works full time as well and can't take time off because he is usually working 1 - 2 hours out of town. And as far as friend, its really sad, I cannot think of one I would bring - I am very private about my medical issues - people have treated me very badly in the past - have called me a hypochondriac - faker - manipulator etc. I am sure most of you have been there at some time or another where people didn't believe you - so I just don't talk about it anymore to anyone except my husband -

Even asking on this forum has been extremely difficult - :eek:I

Thanks again for your replies and advice!!:D

tiggertoo2174 03-20-2012 07:32 PM

Re: How to ask PM doctor to increase pain meds
Frankly, if you are expecting to get an increase in your day to day pain meds you are likely to be disappointed. PM doctors look at a pain level of 5-6 WITH meds as successful pain management. If you are getting. 2-3 with half a 5mg hydrocodone then you are already at a lower pain level than most people in PM EVER see. Add to that you already have THE most potent BT med on the market. Unless your nausea issues have been resolved to the point where you do not vomit, an oral pain med (fentanyl lollipops are absorbed thru the mouth lining not the stomach) isn't going to do you any good.

You might want to consider extended release tramdol given that your day to day pain appears to be moderate. It would give you 24 hr coverage without the issues related to being on strong opiates 24/7. If half a 5mg hydrocodone is puttung you at a 2, all that an opiate extended release med is going to do is up your tolerance and reduce the effectiveness of whatever you have for BT pain. Your Dr. may, or may not consider something other than the fentanyl, but I would avoid asking specifically for Percocet. I don't mean to sound unsympathetic, but most chronic pain paitients would literally jump for joy at an unmedicated pain level of 5-6 and haven't seen a 2-3 in years much less daily.

feelbad 03-21-2012 10:40 AM

Re: How to ask PM doctor to increase pain meds
tramadol IS one other option for you, but depending upon how this 'type' of med, given that is does also have a different overall 'make up' than most narcotics do, and also has some anti depressant qualities as well, it just 'could' work for you or also possibly interact with other meds you may be one too. but it IS a good solid option for you. and you may be able to get rid of at least the one narcotic(hydro), and only use your fent for attacks when they should occur.

just how often do you actually have to use the fent SS? the mere fact that you are STILL able to obtain relief from hydro at all at this point, would kind of tell alot about the lessor possible usage of it? since fent is simply soo much stronger than hydro, if overly used fent, it would eventually impact the overall effectiveness of the lessor hydro at some point on your "daily' pain. only becasue of the overall 'strength' of the fent.

the bigger reason for why that the sudden onset pain is usually soo much worse than our 'daily, usually comes down to one thing, "acommodation".with having ongoing and daily pain over time just being 'forced on us to HAVE to live and deal with, our brains do tend to at least "somewhat' acommodate the daily ongoing pain levels only becasue we are kinda 'forced" to 'live with it". where the sudden onset in just about anyone has not even come CLOSE to being in any way to "accommodated yet when it comes out of nowhere and just simply 'attacks' us. having any 'type' of extreme sudden onset of pain that can come from soo many different pain generators/conditions and among other generators i just have something as in my own type of inherited disorder that impacts my kidneys and liver heavily with huge cystic globs(my kidneys are now almost 4 times the norm in size and i am a very tiny person. they are now impacting ALL abdo and some specific thorasic organs at this point), the way you are using your fent is strictly FOR that hidious level of just very sudden and unacommodated pain that you just CAN get that makes you feel like you truely want to be 'out' of the picture in a more permanent way. despite my many different pain process that i have with some that just will NOT attatch to anything we have tried and/or just gave me such insane side effects, my once in a while abdominal has caused me some of the worst of the worst types of pain overall. and at times really hard to treat when the pain is being generated in a very 'sudden' way as well. the more extreme abdominal i know from my own experience is usually a double you over kind of slump to the floor in the fetal posistion when it can just get going, so in THAT sense, i really do feel for you SS, and now DO better understand your 'need" for something "like' the fent to just hit THAT much harder. but if the percs actually just 'do' that same job for you, there seriously is no need to even be ON the fent at all. there just IS alot of 'baggage' that comes along with having to even use something THAT strong. esp when something less will actually work,and i know that is what you want.

but, i am just wondering here about the "how' in the gaging of the numbers you stated your 'normal daily' pain just is? what did you actually compare THAT to as far as what your 10 is as in"worst possible pain you have had to compare to' and that possibly what your BT pain actually feels like, or something else? i am only asking since getting to that 5 has been my 'target' number since i started in PM back in 04, but getting to an actual 2, now that would be absolute heaven for any of us here(and so would that 5), ya know what i am trying to ask? you simply realistically cannot gage 'ongoing daily pain' to what is your very severe sudden onset pain since they realistically just are two totally 'different types' of pain, ya know? one of them, you are simply more 'used to' having daily and the other just sneaks up on you out of the blue and then attacks you. if i used what MY absolute worst ever pain was to "gage my overall DAILY pain", which was my about four days straight post op pain from hell after my "digging into" my spinal cord surgery was done, anything, and i do mean anything compared to THAT high level intensity would be like a -1, since this just 'felt' at that time like a plus 100 and beyond, and not EVEN within the relms of the actual painscale. it just was that so over the top excruciating that they could NOT get it down using heavy steriods, narcotics or any of the other meds they had availiable, so they tried keeping me pretty heavily sedated for at least the beginning part(2 days) anyways. so even trying to 'gage' what my daily just 'is' to THAT, it would ALWAYS be wayy out of whack with the realistic pain scale numbers that i would have to gage the 'me now to' at this point, so i really just do not use THAT pain level at all. it simply needs to be more of a 'what your doc could kind of best relate to' so he knows somewhat where you are at. also just telling him what you are comparing your pain to when asked to gage it with numbers, also does help.

so, did you gage your pain realistically or in relation to that sudden onset you get? it DOES make a big difference in just how it would not only 'appear' to us here, but to your doc as well in the numbers you are giving it. pain really IS very highly relative to what you compare it to when using the pain scale anyways.

i really cannot imagine any PM not WANTING their patient to be on anything other than fent when possible. if you simply even CAN tell him you want to at least 'try' something less strong, as in like "other' meds you have 'read about/saw mentioned in good pain forums about'(do NOT tell him you tried the percs already and that they worked since no one should be 'sharing' ANY narcotics with anyone in the first place) but simply having a discussion on "other" potential narcotics that do not impact you like the fent really would not really throw up any red flags that way. just ask him, 'is there any other med that is kind of between the hydro and the fent that i could at least 'try' in place of the fent, and just see how i do?' and see what he says. this way you are not outright asking for the percs specifically, but allowing HIM to come up with some better options. if he does not even think of oxycodone/percs like first? he really should be if asked this way.

that really is the best way i can think of to ask him about this. there is also alot of crap that comes along with using fent over long periods, like a huge tolerance to just about any and all other types of narcotics out there at some point. this IS only because you happen to be on the strongest out there type of narcotic. and that is NOT at all a good thing if something less strong will actually work for you. that just IS how they should have set this up to begin with. unless they tried percs before you started that other med and the percs did not work well enough then? but just DO bring this up the 'right way' and then allow HIM to make the decisions. but honestly, no PM 'should' just keep any patient on something like fent without at least trying less strong narcotics that could simply work just as well. at least trying this 'may' allow you to get off the fent for good if it works. but YOU just are going to have to try like heck to hold yourself together so you CAN have that discussion, or you will still be in this very same spot. the things in our lives that we feel we have to have or a truely "worth it' to us usually never come easy. good luck SS. marcia

SheeSpy 03-22-2012 12:14 PM

Re: How to ask PM doctor to increase pain meds
After figuring out your a and t keys must be broken - it was much easier to read your for a nice brain exercise as well.

I wish Tramadol worked - I was on it years ago - tried it for a good 6 months, so I think I gave it a good chance, it did NOTHING for me. But thanks for the suggestion. I am good on my everyday pain meds though - and not really looking to change them.

As far as my pain levels, I don't compare them to my BT pain at all - that is part of the reason I didn't put an actual pain # on it...Its that pain where you just want to die - I have had many times where I actually have passed out from the pain, and when I use to have to go to the hospital Demarol drip was usually what I was put on along with something like Benadryl to knock me out for 3 days. They tried morphine but it always made me vomit - No matter how many times I would explain that to them - so finally had doctors orders when I would go to the hospital.

I don't know why my doctor started me the way he did the only thing I can think of is it kept me out of the hospital and I was able to treat myself at home - most of this was set up about 6 years ago, and I have not had to go to the hospital even at my worse - there were a couple times I wanted to go, but most ER staff don't understand HAE and the way they treat me, even with doctors orders is terrible. As far as my use of phentanyl - I don't use alot - as mentioned - I hate the way it makes me feel. It is definitely a last resort so that I don't have to go to the hospital.

You are right though, I should not mention anything about trying the percocet (and no I have never been prescribed it so was not something we tried)- I have read through these forums and found a really great site and realize what a no no that was, and I never should have even taken it....lesson learned. Thanks for that.

I think talking/writing about it on this forum has allowed me a safe environment with such great questions and replies that is has given my brain a chance to process what I am going through into words so that I can relay this better to my doctor without "losing it" and "crying like a baby" - The more I think about it the more I have realized this is a common reaction for me when in situations like this - from principal offices to even talking to my boss about "serious" problems - Pretty sure its an adrenal thing - I have always known - my math skills are amazing, but my communication skills suck -

I think I will try some "role playing" with my husband, I have read that can really help.

As far as your questions about my pain levels - I have been through a lot of counseling and biofeedback and I would have to say my numbers are correct for the most part. They definitely vary from day to day - like this morning 5 mg was not enough - I'm still at about a 4 - but it started last night at about a 6 - we had a FREAK snow storm yesterday (it never snows here - and then in March!!) - and no power - so had a lot of things I had to do - setting up generators - shoveling snow - cleaning up broken trees - and taking care of animals - hubby was stuck out of the pain started last night and still pretty strong today.

I know I have an extremely high pain tolerance. When I go in for dental work my dentist does not numb me (once for a crown) we started this years ago because the shots actually will cause a HAE attack, and can cause throat closure. Also with my infusions I let them do it in the top of my hands, and it doesn't bother me - apparently most people (according to my doctor) won't let needles in the top of there hands.

Also, I had prolotherapy a couple years ago every 2-3 weeks for a year - they stick a needle (about 4") in to the the ligament (I had loose ligaments around my sacrum so severe tailbone pain where I could barely sit down..) and shoot a sugar solution into the ligament to irritate it and it causes the body to start the healing process again. My husband went with me and watched a couple times and he is not queasy at all - and that one really freaked him out...It was painful - BUT I managed...even going back to work after the injections -

So I am not really sure how to respond to your question about my pain, maybe my 2 is more like a 4 or 5 - I'm not sure - When you only have 10 numbers to go by you run out pretty quick when you start saying your everyday pain is at a 7 or 8 - I know pain is relative - and I know that I have lived in pain this way for most of my life - Recalling telling dr's at about 12 that I hurt everywhere, and them not understanding - I also know that once an attack starts - my pain tolerance obviously goes down - that's just a given because of all the endorphins that go into play - as far as jumping for joy at my pain levels - that's not happening...maybe I really have no pain tolerance and am just a big wimp, not really sure, but I know I hurt - I obviously wouldn't be here asking for advice if my pain was so minimal that I didn't need advice - and I don't recall anywhere about asking for an increase in my everyday pain meds - I was speaking directly to the fact of the BT pain I experience during an attack - I don't judge other people based upon a number - if they say they are having real pain, then I believe them - pain is such a hard thing to judge or put a number on - even when I read the scales, I still have a difficult time putting numbers on my pain.

If you don't mean to be unsympathetic that's fine - I never asked for sympathy - I asked for advice - Like I mentioned before, I am very private about my pain/illnesses as I have had people be very mean and judgmental to me in the past, which I am sure many of you have experienced - because for some reason a lot of people just want to judge and think people who are in pain are making it up unless they can see the pain - I honestly thought these forums were a safe place and meant for advice - not judgement -

Thanks again for the much needed advice, I will definitely glean what I can from every answer and use that specifically for my circumstances, and maybe others will read these and be able to glean what they need as well - I know positive feedback and knowledge is hard to find these days especially when it comes to pain, and I appreciate those of you who have the art of words to be able to communicate that advice well with words...:)

feelbad 03-24-2012 11:48 AM

Re: How to ask PM doctor to increase pain meds
just so you know SS. it is NOT 'my' particular T and A keys that caused this. for some insane reason, whenever, as of like the day before yesterday, when you simply have a T and an A toggether, it knocked it out and replaced it with the asterisks. do NOT know why, but this whole page is now like this, and tigger too. strange things DO tend to pop in and out here once in a while, lol. hopefully they will get this fixed since it most certainly makes at least MY post look a wee bit insane.

do NOT ever think that anyone here is judging you hon. everyones pain and unfortuently how it feels to you individually can be wayyy different than someone else who has not had to 'feel' the insane intensitys of pain that you have can tend to gage. you go by only what YOU feel. some accomodating has simply occured with you and i DO think that that alone has impacted in certain ways just how YOU feel as far as "numbers' go? your 5 could be someone elses 8, ya know what i mean? and this IS the bigger problem when it even comes to using the 10 scale to gage our pain. the best way that i do this when talking to my PA about my different pain areas(we gage each and every generator or pain syndrome seperately since some are VERY high running usually sits at around an 8 with flares upwards of 10 with my central pain syndrome that NEVER ever goes away and is uncontrollable by ANY means we have tried), and others thankfully DO just help to bring my pain down with narcotic or other types of therepies too. and i just AM an inner and outter kind of painmess, from c spine falling apart now crap, the many 'gifts' of simply having spinal cord 'damage', kidney liver crap, and way too many surgeries that also seem to leave their 'marks' on us at times too. so we kind of 'have to' gage 'areas" of pain at my visits. and trust me, some are better or worse than others.

but like i mentioned above(if you could read thru those stupid little asterisks,geez), just even getting someone or your PM to actually be able to "relate your pain TO something" that he or she has more than likey 'felt' as pain along the way really CAN help in relating it(pain intensity and 'how' it simply 'feels" to you) TO anyone vs only mere numbers would. as an example, with my central pain syndrome that i woke up in the flippin recovery room immediately post op cord surgery. it was already triggered and fired up while i was still under anesthesia. since i was told pre op,among other icky crap, i would simply be waking up with some 'very severe pain' by my NS who did my surgery, i simply 'assumed' that this overall pain(syndrome) WAS 'just only part of that" and never ever in my wildest nightmares did i ever think this was a 'syndrome' that to me, feels like a very severe second degree burn, which retains all that nasty hypersensitivity in itself and to even slight touch where even air blowing over the affected areas will set off a freakin nightmare down to my pinkie from the now only affected forearm and elbow areas(this used to also be in a very wide stip right across my upper back/thru both shoulder blades, but somehow 'desensitized" over time and therepy). so telling someone, when trying to get THEM to best understnd what i am dealing with and feeling in THOSE affected areas to just imagine the absolute worst type of burn or even a really bad sunburn, like times 5, that NEVER ever goes away or lessens in that intensity to where you usually have to keep trying lifting off even a very light cotton T shirt off from it to make it feel less intense(like you just tend to do with any bad sunburn like on your back?)? THAT is exactly how this particular pain syndrome just feels 24/7 and every second of every day since 9/03. it is just 'there' and never ever stops. this is what 'used to feel' like that 100 plus, but now, after all these many years of 'living with this", and that i have accommdated inside my head to a degree, it feels about an 8. so this truely just IS all relative SS.

that is what i am talking about hon, just trying like heck to get your doc or whoever you are trying to get to understand this or your other pain to 'correlate' an experience that was simply over the top painful for THEM TO your brand of pain. it is just getting them to really understand by whatever you can tell them, what any brand of pain simply would 'feel like' and the intensity of it. personally i feel for me, this works much better than simply slapping a number on a particular type of pain that the PA, NP or doc could better relate to if it was actually correlated to something and explained, instead of 'just', oh, it feels like a 5 or a 6 kinda thing(compared to what exactly)? while you CAN totally give a number on it, also always try and include the intensity and quality of it too. just always try and be as descriptive as possible to the doc too. it can help alot to better get him and you onto the very same page.

just please do not think that the really great people here were at all 'judging you" SS. that is not what this forum is for. we are here to help with advice when someone can better relate to anyones pain situation or are having problems too. it was just the 'way' you numbered that pain that i DO think made people 'assume(you know what happens when anyone assumes things,lol.) that your daily pain was not that bad. but as i explained above, ALL pain is sooo highly relative to what our specific situations are, other more severe pain we can just have like most of us here just do too along with the sick levels of BT, just too can tend to really sqew our own numbers as to how we see them compared to what our coping abiliity is, and how much the worst pain has affected our ability to even begin to fully just truely "realistically"'gage" our pain too.

that is why i prefer the number that my PA always asks for, but in the seperate areas, along with a more descriptive type of 'feels like this' added too so they just better "get' what MY realistic 'number is" and compared to what. this just really also makes much more real sense too i think as opposed to numbers that can vary ALOT depending upon what other pain you are used to having to just 'suck up' all day every day too(this too does tend to raise up our overall pain tolerance when this is even present and always there) that in some cases just will not respond to anything. this just easily could tend to have us place what truely just 'feels like' a much lower number to US only when something much worse is also just there, making it 'appear; less when compared to the worst areas of our pain. while somone else who is dealing with 'only' that one pain would almost always gage it much higher, ya know what i mean? its all very relative to us alone, and it ALL just matters when everything is simply 'put all together.

the one really crazy thing that i have found over all these years and just having soo many areas of pain that can go up and never really down, or other residual pain from surgical crap and esp when my two almost impossible to treat syndromes that are both from the very same cord surgery damage, that in some ways the overall intensitys will 'meet' at some points too(they also kind of share some certain icky components of one another)? it really DOES feel to me that when things with esp the two syndromes are just screaming at their worst? they do NOT appear to really 'affect me' nearly as much as when only ONE is screaming at me. very crazy but its almost as if the pain intensity is kind of fighting against each other and not kind of 'hitting me' as hard? i think it is more like what a TENS unit just is ment to do in a way, replacing one type of 'feeling' for another, but in a very very insane way. do not know why it feels like this, it just does, but only when they are BOTH at the same screaming intensity. and these two crappy syndromes too just tend to lessen the other pain that still IS bad enough to have to be on the LA meds with BT too and STILL has "its moments". but this lil journey since 03 just kind of showed me anyways just how much our pain is really more OUR 'perception of' and relative TO other things/pain as well.

so sorry if you felt at all not accepted or welcomed here SS, cuz you are, just like the rest of us here who are foreced to suffer. this really IS a wonderful and caring place for help, or whatever else you may need(venting, lol) too. hang in there hon, marcia

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