It's confirmed - a lifetime chronic pain patient
It was confirmed today. I will be a chronic lifetime pain patient. My PM doctor agreed that the surgeries are risky, the outcomes uncertain, and will never take away all my pain - he supports my decision not to go under the knife again. He also said I am not a candidate for the stimulator implant because of the condition of my back. He spent the rest of the appointment explaining that he has no problem treating me for life for my pain - but wanted me to be sure I understood that he has no cure ( I knew this already but it's a speech he must give ). He will only help me to manage my pain. He wanted me to understand that all he could offer me was meds. Then he spoke to me about the risks of increasing my pain meds and my body adjusting to them over the years and needing more..etc.
He knows I am not getting tremendous pain relief right now but is hoping I can stay where I am for a while longer.
I also spoke with him regarding my 'bozo' lips when I took the neurontin (yes, my lips swelled up and not in a good way..lol). He found it curious that I had taken this medication before with no severe reaction - and thought perhaps I had started out at too high of a level. So instead of taking 300mg 3x day, he would like me to take it again 300mg once a day for a week - then 2 a day for a week, etc. he did say if I experience tingling or swelling, to stop again and call him.
To all of you who have been years in PM, how long have you stayed on medication before increasing your dose or changing it? I am in my 40's right now and suppose I could easily live at least another 30 years (at least I hope so!!)....
I am currently taking 7.5/325 Hydrocodone - 2 pills 3x day. I have been on this dose for 4 1/2 years before that it was 5/500. As long I do not do anything, I can get by on what I have right now - but if I begin to get active (cook, shop, clean house, walk distances, drive distances) I have very little pain control. It's not as if the pills are not working at all - but they only give minimal pain relief for about 2-3 hours - then it's as if I never took anything.
My PM did not speak of what kinds of meds he could or would prescribe in the future - but obviously wants me to really try my hardest to stay at the lowest level I can.
So again, how have you all handled this - considering there is only so much medication they can offer.
And if you have been diagnosed as a long term chronic pain patient - how long has it been? What did your doctor tell you at the beginning?
The funny thing is - I had really reached acceptance of this prior to my visit today. I knew the risks for the surgeries and knew I could not take those risks. I am just glad my PM agrees with me and believes I have made the right decision.
(Oh, and NO... I did not find out about the bubble popping feeling in my spine. I forgot to ask)
I am so sorry, but it sounds like you knew that you would have to deal with this the rest of your life. It is much easier to hear it when you already know it.
when i was told it was chonic pain and I would have to live with it for the rest of my life I was floored.
I really don't agree with your meds and I am sorry I don't. If you have to stay on the same amount "as long as you don't do anything" you are fine with the meds. I would want to do the stuff and want the meds to work so I can get stuff done, you know what I am saying? I also understand that since you have to live with this for the rest of your life they dont want to give you strong meds. I go thru that also.
Im sorry if I said anything to hurt you but I truly believe that we should have our pain controled so we can do the stuff we want to do and not have to worry about a ton of pain. I want to be able to go for walks, talk without alot of pain, eat without alot of pain, laugh without alot of pain and so on. I might be asking for alot.
I hope you get some better answers then I gave you.
I'm sorry that there's no help for you other than the meds BUT happy that you PM Dr. realizes this and is willing to take care of you.
I'm no Doctor BUT is sounds to me that you have the VERY same problem that I did after bveing on Hydrocodone since 2003 and that is that I was immune to it after ALL of those years on it. Why don't you ask him to switch you to something that is the equivalent but has different compound to it. After putting me on the Fentanyl he switched out my Norco for my Percocet. That made a lot of difference for how my pain reacted. Just a thought that maybe might help you. How long is a "just a little longer" ? I hope that he doesn't mean that you are going to have to wait VERY much longer because right now you have NO life at all if you can't do ANYTHING while on the Hydrocodone.
You need to have an indepth talk with you PM and pin him down so that YOU know what to expect in the future. MIne laid it ALL out for me and doesn't hedge on any questions that I ask. It's really important for you to write down ANY questions that you have in a book of some sort and take that with you to EVERY PM appointment that you have with your Doctor.
I'm really glad that you KNOW that you have LONG-TERM Pain Management and don't have to worry at all. I have the same thing and there is NO BETTER feeling in the world than to know that you have the help that you will be needing!!
Mummy, I really gald that you have this assurance!!!.....Sherry
I'm sorry that you will be a lifetime chronic pain patient. I still have hope that one day they will find a cure for chronic pain! I stayed on my dose of medications for about five or so years before an increase. Everyone is so different medication wise, and it's great that your doctor wants you to stay on the lowest possible dose. My doctor wants me to stay as low as I can as well. It has been about ten years for me, and my doctor says that maybe in my lifetime that they could find something that controls my pain very well, but right now, there is what there is.
I think that many chronic pain patients are on long-acting medication and a medication like hydrocodone or oxycodone for breakthrough pain.
It's wonderful that you have been on such a low dose for so long, but I'm sorry that it doesn't seem to be controlling your pain. In my opinion, the point of taking medications is so that you can do the things that you mentioned, and if you can't, then maybe you can let your doctor know about that because I think that it's really important to be able to shop, clean, etc. Those are the things that make me feel great, even though they cause me more pain. That's what my breakthrough medication is for.
One more thing...even though it's great to be mindful of the future, I still truly believe that right now is also important. You need to be able to live your life! It's good to be cautious with dose increases, but that doesn't mean that you don't have the right to have your pain controlled NOW! I started out at a very low dose, but then moved up and up until they found the right amount of medication for me...the amount that helps me live each day and I feel like I have control of the pain instead of it controlling me. It's one tool for me...I do many other things to help keep my pain down, but there is no denying that medications are an important part of PM.
I'm glad that you have a doctor that is nice and that you can talk to, but please tell your doctor that you're not able to do what you want to do.
I have not yet been told that I will be a lifetime chronic pain patient but I know that I will be .My neurosurgeon told me there was nothing he could do about my neck at this time . He said all he could do was refer me to pain management.I take 3 lortab 10's a day 3 400mg neurontin and 3 flexeril 10mg a day .I saw my PM last Thursday and I told her my meds are not working as good .She doesn't think I should change meds at this time so I am just going to continue to take these as prescribed . Most of the time my meds work good enough but sometimes the pain is so bad it feels like I haven't taken anything .I guess the Drs worry that if they increase or change our meds it may get to where nothing works .I hope that soon you can get something prescribed that helps you more. Take care Melissa
I'm also sorry to hear that you will be a CP patient for your whole life, but on the other hand, it's good to come to grips with it so soon, and that you are as comfortable as you can be with the diagnosis. My doctor basically told me the same thing, however I am going to try surgery since I haven't before and can't imagine how the pain could be worse.
About the "bubble popping" in your back. Is it when you massage it or when you move? My physical therapist told me that when you feel your muscle's popping it's because they're so tense from spasming, and what not, which happens when there is pain in the area, that they get tight and "pop" when rubbed against eachother. My mother was giving me a neck massage once and felt this "popping" and really freaked out like something was wrong. I asked the PT and that's what she told me. It may not be the case with your back, but I wanted to suggest it.
Wow... You all made me smile! Thank you all for caring and having such great advise. :)
Jamie - My pain is pretty bad, but I can't imagine having difficulty getting enough nourishment because pain prevented me from chewing.. I feel for you. ps... Tomorrow marks ONE WEEK away!!! I am anxious for your appointment - I cannot wait for your email next week!!!!!!!
Sherry - If I had a nickle... no, make that a penny for every word I mispelled! (I just had to look up the word "nourishment" to be sure it was spelled correctly! And I think I will ask him to swap the med out for something equivilent (see? spelled wrong! LOL). That might be a great way to keep the dosing down but allow my body to get some relief!
Flower - wow, wouldn't it be great to find a 'cure' for pain! Does your doctor really think this will happen?? And you are right - Although we should be mindful of the future, we need to live now. What good is it to live to 100 if you live it in a room, alone..
Melissa - sounds like your pain relief is similar to mine - and sounds like our doctors are following the same path. Maybe it's because of the state we live in. They had such trouble here a few years ago with adicts and oxy and now are so very, very strict with everything (As they are in many places..). I can't believe he told me there are people who stay on my dose of meds for life - no way! they must not have bad pain! (at least that was what I was thinking!!)
Jaded - I totally get how you would like to try surgery...and I pray it works wonders for you!!! Regarding the bubbles, I usually feel them on days where the pain levels are very high but I feel them when I sit and rest. I put my feet up on an ottoman and thats when I feel the popping... But it does make sense that it might have something to do with the pain since my pain levels are always up when it happens!
To All of you , Thank you guys so much!!! Todays news could have really been a bummer... but since I have met all of you here and get a chance to either vent, give advise, or support someone on here (or get support from you!) - my life of pain is not all about me... it's about all of you - all of us... I really have found great support here.
I'm here with you on your journey of pain. I too, am in your shoes and I'm very happy to have you as a friend and for your support. We have a lot in common, especially when it comes to the pain and our condition that is causing the pain.
When I was talking to the PM doc about the gabapentin, there was someone else that had the exact same side effect with the lips and they mentioned it to me. They discontinued the medication for that patient. I personally can not take gabapentin due to the allergy side effect it has on me. I actually broke out in a sunburn raised rash with severe hot flashes on one 300mg dose.
They've been telling me that this is most likely going to be long term is when the surgery did not take care of my pain.
It's nice to have the doctors working with us. I too, have a doctor who is willing to treat me as long as I need to. I hope they are around for a very long time.
I am a bit nervous to take it again - but I certainly don't want to seem like I am just avoiding certain medications...
I think I will take it again tomorrow morning. I don't want to try it tonight and have something happen in the middle of the night.
I also found it strange that my next appointment with the doctor is in October! I was seeing him regulary every month... but now I only go in every 3 months??!!
What do I do if I need a change in pain meds? Wow, I never even had a chance to ask him those questions since they hand you your appointment card when you walk out - they don't even consult you on what day is better than the next! And we all know what happens when you reschedule an appointment..LOL I am such a newbie. :)
Thanks, runningmom. We do have a lot in common and I am grateful to have you here to talk to.
I'm sure you will be able to change your appointment if you need to. I know that we can come in at anytime we need to. When our medicine is working for us, we go in every two months. If we are trying to find out what meds are best for us, we go in monthly and sooner if need be. I try and stick it out for the month due to my insurance not accepting a change until the month is up. My insurance is very picky about what is written on the bottle. I'm sure the same works for you. My last pain doctor did not want us coming in any sooner or later then what he wanted, which was every 6 weeks. It was so strange. They would never allow me to have any med changes, nor could I change my appointment.
I was just wondering, are you able to do anything? Or are you always in to much pain to do anything. I am really worried about you. If you can see where i am coming from.
I am unable to eat what I want, I am unalbe to smile without being in pain, I am unable to laugh without hurting.
With you it seems like your pain is not controled and your not able to do much and I really would love to see you do the stuff that you want to do, like clean or whatever. You really need to live your life the best you can cause you only one 1 life. I hope the meds help. I was told that Gabapentin and Hydrocodone can make you loopy so be careful when you take them if you take them together. YES I only have 1 more week tomorrow and believe me I am looking so forward to this appt to see what happens.
This board has a great group of people on it and that is why I stay here to get some advice and they keep me going. If it wasnt for this board I would be lost and you do have friends on here even if they are only on the computer and I have every right to be worried about people lol. Just let me know if the meds work. I would LOVE the day that you are able to do what you want when you want to and not have to worry about the pain cause it will be controled. It might take time for your PM dr to get you to that point but I will wait!
Hang in there and let us know how the meds do tomorrow.
I know the feeling of having your stomach drop out at that news. While I can understand your doctor wanting to keep you on low doses of narcotics, your pain is undertreated. You've got a tolerance to hydrocodone now, and short-acting meds aren't the best to deal with this kind of pain. Even a 12.5 mcg fentanyl patch should help you. Ask your doctor about rotating meds every few months to help with the tolerance problem. Yes, you'll hurt more for a few days as you drop one med and get used to another, but that technique can help with tolerance.
I got the same diagnosis a couple of weeks ago. The pain doctor told me NO dr. would chance operating on me with so many different things wrong with my neck and my back and arm. I started to cry and asked him if he was going to stop treating me, and he said no, he will always treat me, we are going to try the stimulator, but if I don't feel 90% he's taking it out. I'm also on the vicodin 7.5 3.25 and take 2 3 times a day, sometimes it holds the pain, sometimes it doesn't. I just wanted to tell you I definitely know how you feel. It's hard when the pain doctor tells you that no surgeon will work on you because it's just too risky. It sounds like your pain doctor is the way to keep going to keep you comfortable. My pain doctor actually used that word, to keep me comfortable.
"Comfortable." That goes along with focusing on the word "management" instead of "cure." All we can do is take it one day at a time and celebrate the good days and live through the bad days. Try not to forget that nobody ever died of pain by itself.
Living with CP involves a whole lot of mental exercise. If we're lucky, we'll surprise ourselves with what we can still do and celebrate those victories. It's even better if we can let the things we can't do anymore fall away without too much bitterness and regret. Try to stay focused on today and the future while building a new life with the pain rather than looking backward. No it's not easy at all, but if we want to have some kind of meaningful life it's the only prescription. Meds are simply a tool and it's too easy to fall into the trap of believing they're a cure.
How long have you been on the same dose of meds? I wish I could try the SCS, but my PM said he would probably have to remove it shortly after because of all the scarring I currently have and is worried more surgery would create even more scar tissue. My scar tissue is not ust around the existing nerves and bones, it's in the thecal sac.
I am still struggling with when and how to adjust my meds. I get the feeling he wants me to stay where I am for as long as i can... so maybe I stay at this level until resting is too uncomfortable, since I have already modified my life - and cannot be active anymore.
Sherry had suggested I just switch meds (not strength, just different meds) and see if that will work. If that would work, it is a great way to keep the strength of the meds down and keep tolerance at bay.... but my next appointment isn't until October now - so it will have to wait.
I did not take the neurontin this morning - still worried I will have another allergic reaction. I have the benadryl sitting next to the bottle for when I do get the nerve to try it again.
I totally understand the emotions that go along with a doctor not wanting to treat you - I, too, am so glad he agreed to care for me for the future. That's good news!!
Mummy3too, do you have an EPI Pen? Medication allergies can be so serious. If you don't have one, maybe you can ask your doctor about it. I'm surprised that he wants you to take it again. Anytime I have had a reaction to medication (welts, etc.), I have been told to discontinue taking it.
I was surprised he was willing to take the chance, too. I suppose I might feel a lttle different if it was just a rash on my feet or something (although it's still a reaction).. but having the swelling on my mouth - makes me worried about my throat swelling,
I don't think I have the guts to do it anyway.... I don't think he will be mad. How can he get mad about someone not wanting to take a medication that made their mouth swell up?
hello, i too am on pm for the rest of my life. in the beginning before pm i went to my internal med dr and he was treating me with the 7.5 hydro's, muscle relaxeres, etc. ocassionally he could give me the 10mg. it was a long battle. mri's showed up more serious damage so i was referred to pm. i have been going for close to 8 years now. i was started out on the 10mg hydro, a stronger pain med, muscle relaxer, nerve meds. i now take 6 of the stronger pain meds, 4 of the hydro 10 for break through pain plus the others. there are days when i do not need the total of the 10 pills. i have not to this day built up a tolerance to any of my pain meds. i have also learned the hard way not to over-do! i have hurt myself trying to do things that i should not have because i was feeling some amount of relief! i will be 50 this year. i feel for all of you suffering out there. i myself could not make it just on the hrdro. with a combination of both my pain meds i can get around better, i will never be pain free-but i am very thankful for an understanding pm dr! i also go every 3 months and i really like that. it is so hard for me to drive or go out of the house. so with my pm dr. the lord and daily prayer i have learned to take things one day at a time. god bless you and yours-take care-kb234
I am so sad that you are also a life-time chronic pain patient. It's very difficult for some to accept that diagnosis. You are very courageous! Your acceptance so early will pay off in the long run.
I found that once I accepted the fact that I too was a life-time CP patient I felt more at peace. Okay, this is as good as it gets...now we'll take it day by day. My pain was actually more manageable after acceptance then prior to that when I was trying to deal with the anger and denial.
I have been on Hydrocodone for six years. My dose has been adjusted twice. I may live with more pain that most do but I worry about what next. I'll clarify that by saying that 3 weeks ago I had to go on a Big Dog Med when it was determined that my large abdominal mesh has ripped and failed. But that has not been the primary reason for my cp. I have SIJ dysfunction and I take the hydrocodone to treat it.Now even with the long acing opiate I still have pain in the SIJ. So at least I know that I will not feel a lot better on a stronger opiate. If they are able to repair the mesh I will return to just the hydrocodone.
So my dear, I think it depends on how much pain you can tolerate on a daily basis. How much life you are willing to sacrifice. If I keep my activities very low I can usually tolerate the pain at a level 6 to a 7. If I am active I am an 8 with some flares for short times at a 9. But I chose this because I do not want to run out of options. I'm older than you but if I am fortunate I hope to have another 25 years.
I think much depends on the demands you daily life requires. I am disabled and unable to work and have no children at home. It's just my wonderful husband and I. So I have few physical demands. I just miss out on most of the fun. :(
When I was busy with my career nothing, I mean nothing stopped the pain. So I do know where you are coming from, I think it you are willing to deal with more pain than most you will not run out of medication options. And don't forget that as the years pass new procedures and medications become available. You'll make it. You'll be fine. As I said you are courageous! You'll educate yourself and make the right choices.
I hope this helped...and again I am so very sorry that you too have discovered that you are, As Good As It Gets!
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