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Posted 10/22/2010 2:30 AM (GMT 0)
hi, i'm new to this list.  i have multiple diseases and have been in chronic pain for years.  i have not had a medication increase in over ten years.  my current pain management doc refuses to increase my meds at all, in fact, he continually urges me to get off them because in his words, "you've been on them too long for them to be giving you any benefit at all."  that's funny, because when i am in pain and i take them, some of it gets better!  anyway, i just wanted to introduce myself.  it is so wonderful to read the posts here and know that just because i am in chronic pain, i am not crazy, nor am i an addict.  thanks for listening.  kate
Posted 10/22/2010 3:19 AM (GMT 0)
Hi Kate!

Welcome to HW!

No you are NOT alone, NOR crazy, NOR an addict.

I have only been a member here for little less than a month and already feel like a member of a family. The advice, support, and resources I have received have already helped me a great deal.

Hope to get to know you better!

And again. Welcome!

~Black Satin Phoenix~
Posted 10/22/2010 3:24 AM (GMT 0)
thank you so much for the welcome! it is much appreciated. : )
Posted 10/22/2010 5:12 AM (GMT 0)
Hi Casamom:

I just wanted to say Hi and welcome to HW.

Many of us have been faced with the same situation, suffering terribly because the doctor thinks they know us better than we know ourselves.
It may be time to look for a new doctor, but I understand how difficult a task that can be.

I know you will find a listening ear, support, suggestions, and hopefully a little laughter along the way here.

Lorie
Posted 10/22/2010 5:51 AM (GMT 0)
Kate

 

Welcome to Healing Well Chronic pain forum! I am sorry that you have reason  and the need to visit  us here, but with that said I sure am glad that you found us and decided to stop and introduce yourself! I honestly don't think you could have found a better place to come to, if you have chronic pain! I think we have some of the most caring and compassionate people here that you will find anywhere on the internet! At least when your here you are not alone with your pain, you have plenty of understanding people that share in your misery!  We maynot be able to cure you but we can lend you our ears and listen to you, and this is an excellent place to come and vent you frustrations you have with CP, and we are always willing to give you our support! 

 

Again I welcome you to our family!

 

White Beard

Posted 10/22/2010 8:30 AM (GMT 0)

Hi Kate

 Just wanted to also welcome you to the site. I also suffer from chronic pain and am currently having some issues with my doc over pain meds so I understand you anger and frustration.

It's gone past saddening to hear of these doctors to maddening. Many if not most have so little real understanding of what we endure day after day. Well at least you've found the best site this side of the galaxy,( in my humble opinion) and when people hear say they know how you feel they aren't just being nice, they really do. Hope to hear more from you in the future and we have many chatroom rooms if your up for a chat with some really nice people. It's a little slow at times but seems to be making a comeback so please feel welcome to join in anytime and help make this site even better. Nice to meet you Kate and again Welcome.

                                  Stingray (Randy) :-)

Posted 10/22/2010 1:50 PM (GMT 0)
 Good morning Kate!

 

    My name is Dani. It is very nice to meet you. I am so glad you came to find the Chronic Pain forum. As you can see, it is a wonderful place for friendship, knowledge and support.... well, were family.

 

    Now, I don't know about this crazy talk! Some of us are certifiable  :-)   Myself, I'm a nut case! But, when it comes to pain we are all here to support one another. Though there are times that we really wish it was all in our heads.....  Sadly, it isn't.  What helps is that we are all in the same boat. We all truly understand the ups and downs of pain. No matter how wonderful a doctor is, no matter how compassionate a loved one or friends is.. they just aren't able to fully understand the impact and struggles of constant chronic pain.

 

     I'm sorry! I don't mean to chat away endlessly. Again, is very nice to meet you. I look forward to knowing you better as time goes by.

 

*hugg*

  dani

Posted 10/22/2010 6:23 PM (GMT 0)
Hi Kate, I too would like to welcome you to Healing Well's chronic pain forum. As you can see there are several of us that suffer right along beside with you in this crazy CP world. At least you know you are not alone as it tends to make us feel that way at times.

Kate, I have been in your shoes where my pain and me as a patient was under treated and all I will say on this is, find another dr, you do deserve quality life. Drs like that just make my blood boil because it is not them that suffers every stinking day of their lives, so they have no clue. That is very unfair to you to not change your medications around at proper intervals because we can become intolerant to a drug. It is true that we can and do have this happens. about evrey two years we have to change my blood pressures meds for this reason, they will stop being effective so we try something else. He is not being a good PM dr or any kind of a dr if he is doing this to his patients. I know its a pain finding another dr but sometimes we have no other choice. I will get off my soapbox now, lol.

Anyway, I wanted to pop on and welcome you aboard.
Posted 10/22/2010 7:24 PM (GMT 0)
   Welcome Kate ! No your not crazy , you'll find most doctors don't understand pain as we do , when its part of your life every moment of every day you get a different perspective for sure . Its good you've found us because we understand the way you feel first hand , please post whenever you need to , you'll get understanding and caring support here .This forum is filled with wonderful people . Nice meeting you !!! Mikel
Posted 10/22/2010 9:10 PM (GMT 0)
Welcome to HW! You've gotten great responses. Do you think that maybe it's time to begin looking for another doctor? I was so scared before I changed doctors, but it was the best decision I have ever made because now I have a very caring doctor.

Also, the people here on this forum have helped me to be able to speak up for myself and my pain is now much more under control than it ever was, even though it's still very high.

Hugs,

Flower
Posted 10/22/2010 9:14 PM (GMT 0)
Welcome to the forum Kate! It is kind of a double edge sword....we are really happy when people join our family, but it makes us very sad to hear that more good people are suffering! I think you have to be a little crazy to survive this world at all and when you throw in CP......it tips the scales a little more! Read the poem that I posted yesterday...my last verse talks about "going insane". Like others have already said....we really do care and understand how you feel here! I, too, am currently under medicated...but mine is because my PCP and myself are 99% sure I have RA, but the first rheumy did not "feel it" in my hands (that is a whole other story) and I am waiting to see the new rheumy until January 6th. So I need more then just pain meds to help me now! But 10 years with no increase.....that is CRAZY! I am so tired of doctors playing God! I think to be a pain management doc they should have to do the following for a week.

First thing in the morning they must spar with a pro boxer
then walk 10 miles in uncomfortable shoes that are too small carrying a 50 lb backpack
Eat nothing but constipating foods
Have at least 2 kidney stones
Be hooked up to a machine that gives regular mild electric shocks
Have a couple teeth pulled without anesthesia
Sleep on a bed of rocks with your head in a vice

I could think of more, but I am sounding pretty sadistic right now! They just have no concept of how we feel! Anyway.....enough ranting.....I just am so tired of people suffering because of their doctors!!

Welcome and I am happy you found us!

Hugs,
Beckey
Posted 10/23/2010 5:57 AM (GMT 0)
Hi Kate and Welcome!!

No, you're not crazy, you're not alone and you're definitely NOT an addict. We all have learned the difference between dependence and addiction early on.

If your doctor isn't increasing your pain meds in a 10 year period then you might very seriously consider finding someone new. He is not thinking of you and your life, IMHO. If he was then he would be working With you and not solely for his own concerns. Often these doctors are afraid to prescribe strong pain meds for fear of federal government snooping around asking them questions on how and when they prescribe, or they are fearful of lawsuits from patients.

There are many options for help with pain medication, if that's what you choose. I too am on a 24/7 pain medication regime and my doctor is not afraid of upping it if it needs to be done. He is in no way a pill pusher but does believe in quality of life for his patients...but he leaves the decision to me after he's explained the options.

If you might consider going to a university/teaching hospital. It would be more than worth the drive as these folks are on the cutting edge of technology and medications. They are worldwide and not that difficult to find. In the Chronic Pain 101 thread at the top of the page is a link to a list of CP university/teaching hospitals. Here's the link so you don't have to go look for it. Just give them a call and explain why you'd like to see a doctor affiliated with them.

Hope you begin to get some relief soon...
Chutz

en.wikipedia.org/wiki/List_of_university_hospitals
Posted 10/23/2010 10:12 PM (GMT 0)
oh my goodness....THANK YOU to all who responded!!!! wow, i feel like a celebrity!! how wonderful it is to have people who understand!!! i know that the next step is a new doc, it's just that even the thought of it makes me tired, as i'm sure you've all experienced. the problem is that finding one who won't try and talk me out of the meds i'm already on, or try and get me off everything, or wants to try something that i already know won't work. my present doc wants me to try yoga.....okay, i have done yoga, i love yoga, but it does NOTHING to help my pain. he wants me to exercise....same thing, plus, i'm normally in too much pain to excercise and when i do, much of it makes it worse. he says that after being on the meds this long that they are doing nothing for me....okay, then why when i'm in pain and i take two norco, do i then feel better??? even though yes, i have been on it for a long time. it's just so frustrating, and i don't dare ask for any increase because when i did a few months ago he all but took me off everything telling me the meds aren't working anyway. i had to beg him not to take me off all of it. i am on oxycontin and then norco for breakthrough pain. i live in south bend, indiana...and for years i drove two hours every month to chicago to see a pain doc there. at least he was willing to increase meds when it was needed. he closed his practice and all his patients had to scramble to find someone in a months time. i found the one i have now, who is in michigan city, about 45 minutes from here. still a drive, but much more managable. unfortunately, he is the one trying to get me off all my meds and i'm getting tired of it, because i get scared every time i see him that this will be the visit he will tell me "no more." i did try to see a different doc a few months ago but to even have a consultation with him i had to have all my records from my current pm doc and there was no way i was going to jeopardize what i have right now because even though it's not adequate, at least it's something. another thing i don't want is to have to go through all kinds of medical tests with a new doc to "prove" i have what i say i have. i am a nurse, i am not stupid, i know my diagnosis....but they won't take my word for it probably, and i don't have the money to do it all over again. i know i sound like a whiny baby, and i'm sorry, but i am in SO much pain, and there seems to be no relief in sight without going through a bunch of junk that makes me tired just thinking about it. sigh. but i am so glad that i found this place, found people who understand and don't make me feel like an addict. i don't dare tell most people what i am on, because as i'm sure many of you have experienced, i get looks of horror and dire tales of being an addict. okay, i'm done, thank you all for letting me rant....i really do appreciate all of you. kate
Posted 10/24/2010 5:03 AM (GMT 0)
Kate

It doesn't sound like your pain doc knows what he is talking about! Your body build up a tolerance to pain meds over a period of time and then they need to be increased, or changed to something else, but that does not mean the pain med is not effective anymore. Excercise can help with some pain, but it can also make things allot worse too! If you don't mind me asking what type of pain do you have? and What all have you had done to try and eliminate it. You know there are allot of us nurses here on this forum, it seem that nursing has taken its toll on allot of us! I guess I am very fortunate I am kind of a neighbor, as I live down in east central Illinois and I think I have one of the best pain doctor there is. He runs a spine pain clinic, and he does just about everything, injections and pain meds and he treats the whole person, he orders test and does referrals to other speciality doctors, heck at my request he even referred me to a councilor when I was getting a divorce. So there are good ones out there! I guess it is just having to find one! I really am sorry for the way you have been treated, you should not have to live in fear of losing the one thing that is giving you relief from your pain! I do wish you well and hope that you can at least be kept half way comfortable!

White Beard
Posted 10/26/2010 5:10 AM (GMT 0)
Hi Kate, as usual I too am a late one for getting my two cents worth in, lol. Welcome aboard and I am glad that you found us. However, it just really irks me to read a story like yours with morons for PM drs. I think just about all of us at one time or another has dealt with this very thing. I see the others have given you some ideas as well. One thing I suggest is to go online with your health insurance and pull up pain mgt drs with them and see who is available and covered by your plan. I would then start calling and and asking questions like are they taking new patients, if so what is required, most want a referral which can come from your PCP. Be sure to ask the person answering the phone if the dr does in fact write scripts if he feels its warranted, because there are two types of PM drs out there. One will do procedures and injections only, no meds, the other will do the same and write meds. No you will not sound like a drug seeker when asking that question, explain that you are on medication and you need a PM drs that can write for meds. Then if you find someone on your plan that you may want to consult with you can give the info to your PCP's office and that cuts down on some of the lag time of finding one on your plan.

Anyway, wanted to pop on and tell you welcome aboard.
Posted 10/27/2010 2:31 AM (GMT 0)
white beard...i have numerous problems, systemic lupus being the biggest one, but also spinal damage, peripheral neuropathy, ehlers-danlos, hashimoto's thyroiditis, pernicious anemia, arthritis and migraines. i'm probably leaving something out!! lol. gosh, i sound like i should be dying. anyway...none of the other treatments really helped with me...i am on oxycontin 40mg #210 and norco 10/325 #180 for breakthrough pain. from what i've been told by the doc, i am on an especially high dosage of both of those meds, is that true? thanks, kate
Posted 10/27/2010 11:37 AM (GMT 0)
Hi Casamom and welcome to the family! I also take oxycontin, but my doc has me on the 80mg. Are you taking 7 of the 40mg's per day? I was just wondering because I would think rather than increase the amount of pills they would have tried increasing the mg's. I am just kind of confused.

I also believe that one 80mg is better at controlling pain then say 2 40mgs taken together. I know this because my pharmacy had to give me 2 40mgs in place of the 80mgs one month and it didn't seem like I got the same relief. Strange huh? Oh well, just a thought. Once again welcome and I hope you stick around. Take care.
Posted 10/27/2010 12:39 PM (GMT 0)
well come here, can't wait to get to know you :)
Posted 10/27/2010 2:12 PM (GMT 0)
yes damouthy1, i do take 7 oxycontins a day....my current pain doc would never give me 80mg tabs, like i said, he keeps saying i am on the highest dose there is, (which is not true)...but he will not increase anything at all that i take. it's all i can do to keep him from yanking me off everything. it's so frustrating. i would love to be able to have 80 mg's....i'm sure it would help a lot more. it doesn't surprise me that the 80's work better than 2 40's....i've heard that from other people too.i do take imitrex for my migraines...which is such a huge help, i'm thankful that it works for me or i would really be in trouble. thanks for your welcome!!
Posted 10/27/2010 2:57 PM (GMT 0)
 

    Hello casamom!

      I don't think I have met you yet, but wanted to Welcome you here as well! As you can see, we have wonderful members here.

       Ok!...so your taking #40 Oxycontin X7!....and my understanding is,.... #10 325mg Narco (hydrocodone) X18?

    Also Oxycontin is a 12 med. How in the world to you take them without over lapping the hours? The Narco, seems like it is being uses in addition to the Oxycontin, and not for Break through, if indeed you are taking that many. So do you take all of this during your awake hours?...or do you have an alarm set throughout the night to take your meds around the clock?

   I'm also wondering why your PM is mixing Hydrocodone and Oxycodone at the same time. It would seem to me that either one or the other, but I'm certianlly no expert on this. wink   

         WOW!...if that is the case....it does seem like a lot. (IMO) Maybe you would be a canadate for a pain pump, and I'm thinking, this will bypass your liver as well.

       We do understand what your going through to a point, but now that we know what your taking dose wise, maybe someone will chime in with a suggestion for you. Has not your PM suggested a Pain Pump, with you being on this much medication?

     You sound like you have very serious pain! So sorry to hear that. Please do let us know what you plan to do and if your PM increases your meds or suggest something else. This is interesting to say the least!

       SE wink

Post Edited (Screaming Eagle) : 10/27/2010 10:06:06 AM (GMT-6)

Posted 10/27/2010 4:37 PM (GMT 0)

       ~~~~~~~~~~~~~~~~~~~

  Dear SE,

~~> "...Ok!...so your taking #40 Oxycontin X7!....and my understanding is,.... #10 325mg Narco (hydrocodone) X18?..."

How did you come up with x18 narco?

       ~~~~~~~~~~~~~~~~~~~~

 

Dear Kate,

 

     Good afternoon! I hope you were able to rest a bit. I hate to say it but I too, think you should try to get 80mg. It would be so much easier than taking 2 per dosing peroid.

 

     I understand how stressful it is to have to find a new doctor. But, if your doctor is not listening to your concerns and unwilling to compramise, it might be time to research other options. Just take the time to see what and how is in your area. It doesnt hurt to do a little research just in case.

 

*hugg*

  dani

 

Posted 10/27/2010 4:47 PM (GMT 0)
 

    "i am on oxycontin 40mg #210 and norco 10/325 #180"

      I figured 7 of the 40mg =210 ....so the #10 narco at 180= 18

      Did I miss something? My Bad if I did.

     I'm a little slow today with my mind wink

    SE wink

    Well Shoot!....I think I am messed up, because 7 of the 40 would be 280 instead of the 210

    Sombody please help this poor idiot out! (ME) smilewinkgrin

Post Edited (Screaming Eagle) : 10/27/2010 10:59:32 AM (GMT-6)

Posted 10/27/2010 6:01 PM (GMT 0)
You guys are cracking me up!

Welcome kate...a lot of us know exactly how you feel! I was finally able to convince my PCP to renew my hydrocodone script and I felt like a begger. She says to take it as needed for pain...which I do. One every four hours, and she prescribes 60, so do the math. Someday maybe they will have to walk in our shoes.
Posted 10/27/2010 6:09 PM (GMT 0)
 

     I'm not even going to try the math at this time, with my heaad so messed up! smilewinkgrin

     I'm out of here for the day! wink

        Yeh....right!.....everybody get a good laugh at the idiot! smilewinkgrin   Don't have a clue as to what is wrong with me today!

      SE wink

Posted 10/28/2010 11:38 AM (GMT 0)
I am truly confused myself..lol 7 pills a day X 30 days is 210 and 6 pills a day X 30 days is 180...Wow, confusing. Anyway Casamom, I really hope that you can get some much needed relief. Have you thought of trying a different Doctor? Maybe pain management? Keep posting here, it really helps to vent. Take care.
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