Aa
Your hope and plan
I'm just wondering what most people plan for their pain and medications. Are most resigned to the fact that you'll be on this forever? My chronic pain started so long ago. First was a herniated disk in my back. I did pain pills, muscle relaxants and PT. Over time I got to the point I managed mostly on Advil. Every few years I'd end up with a series of flare-ups over something dumb, like over reaching or sneezing. I'd go on ice, heat, percocet (5 mg.), and bed rest for a few days and it would be done.
I remember the arthritis in my hand as far back as when I was 20. I bought a car with a shift, and at times, shifting really hurt ... easy solution, next car was an automatic. Even though I saw my mother being crippled with arthritis, it never occurred to me that I'd end up the same way. Denial maybe? As that got worse, I did comfort measures and it was okay.
Then came the fibromyalgia ten years ago. Tried a bunch of different things. My doctor would give me Vicodin for flareups, which worked for a bit until I started having a reaction. Never heard of pain management.
Over the years my hands got worse and worse and when I had an insurance change, I switched orthopedics and found out that the first one (who also gave me the Vicodin for the fibro) and given me way too many cortisone shots and that the whole joint was broken and in pieces and there was nothing they could do. Referred to the hand surgeon and from there had the failed implant and all the surgeries to try to fix that. Ended up with the RSD and finally went into pain management.
It's a bit complex for billing because my hand issues have been declared worker's comp as they figure my work aggravated the arthritis. My NP at PM knows all my issues but really we only deal with the hands. Most of the medications I'm on I figure will cover the other stuff.
Lately, though, everything is breaking through my pain meds. My right hand is nearly as bad as the left. My surgeon says he could operate on it and obviously wouldn't use the implant as it's been recalled, but I'm afraid of yet another bad outcome. And my own personal feeling is that when one thing is flaring, it's easy for other things to flare as well. And I've mentioned the flare of the fibro since my car accident in late April.
Mentally, I sort of always have this hope in the back of my mind that someday I can be off all these meds and pain free. Then other days the pain is so bad and I think will I ever have a day without pain? I feel like I'm 80. I'm 47 and I'm limping and moving like someone a hundred.
Most of my family and friends don't get it. I put a lot of effort (like my mother used to) into looking good when I know people will be around or if I have to go out. But when I don't, I look like crap. Since I haven't been out (in public) or had anyone over in a few days, I've lived in sweats and haven't blow-dried my hair because it just kills my hands. When I do bump into people, they tell me I've never looked better ... but I know it's an illusion. It's hours of blowing out the hair, straightening it, putting on TONS of makeup (to look natural, HAH!) If anyone saw me without makeup, I'd scare them. Seriously, the circles under my eyes are so dark.
This morning I was wondering if I would ever have another day without such bad pain and I feel discouraged. I am trying to go with the AA principle of "stay in the day," but I find it difficult at times. Some days I want to take ALL my patches and flush them along with every pill I have. But I know that's not the solution, at least for me.
I guess I'm just getting down knowing I'm coming into the worst time of the year for me with the weather. Winter is so long here. Usually I'm better in the summer, but last summer I had two surgeries so that sort of cut into my relief period.
Just wondering who plans to stay on medications forever and how you reconcile it mentally and without worrying about increasing your doses or covering acute pain episodes for other things. (My NP tells me to not worry about things like if you have to have a surgery, they can cover the pain.)
I remember the arthritis in my hand as far back as when I was 20. I bought a car with a shift, and at times, shifting really hurt ... easy solution, next car was an automatic. Even though I saw my mother being crippled with arthritis, it never occurred to me that I'd end up the same way. Denial maybe? As that got worse, I did comfort measures and it was okay.
Then came the fibromyalgia ten years ago. Tried a bunch of different things. My doctor would give me Vicodin for flareups, which worked for a bit until I started having a reaction. Never heard of pain management.
Over the years my hands got worse and worse and when I had an insurance change, I switched orthopedics and found out that the first one (who also gave me the Vicodin for the fibro) and given me way too many cortisone shots and that the whole joint was broken and in pieces and there was nothing they could do. Referred to the hand surgeon and from there had the failed implant and all the surgeries to try to fix that. Ended up with the RSD and finally went into pain management.
It's a bit complex for billing because my hand issues have been declared worker's comp as they figure my work aggravated the arthritis. My NP at PM knows all my issues but really we only deal with the hands. Most of the medications I'm on I figure will cover the other stuff.
Lately, though, everything is breaking through my pain meds. My right hand is nearly as bad as the left. My surgeon says he could operate on it and obviously wouldn't use the implant as it's been recalled, but I'm afraid of yet another bad outcome. And my own personal feeling is that when one thing is flaring, it's easy for other things to flare as well. And I've mentioned the flare of the fibro since my car accident in late April.
Mentally, I sort of always have this hope in the back of my mind that someday I can be off all these meds and pain free. Then other days the pain is so bad and I think will I ever have a day without pain? I feel like I'm 80. I'm 47 and I'm limping and moving like someone a hundred.
Most of my family and friends don't get it. I put a lot of effort (like my mother used to) into looking good when I know people will be around or if I have to go out. But when I don't, I look like crap. Since I haven't been out (in public) or had anyone over in a few days, I've lived in sweats and haven't blow-dried my hair because it just kills my hands. When I do bump into people, they tell me I've never looked better ... but I know it's an illusion. It's hours of blowing out the hair, straightening it, putting on TONS of makeup (to look natural, HAH!) If anyone saw me without makeup, I'd scare them. Seriously, the circles under my eyes are so dark.
This morning I was wondering if I would ever have another day without such bad pain and I feel discouraged. I am trying to go with the AA principle of "stay in the day," but I find it difficult at times. Some days I want to take ALL my patches and flush them along with every pill I have. But I know that's not the solution, at least for me.
I guess I'm just getting down knowing I'm coming into the worst time of the year for me with the weather. Winter is so long here. Usually I'm better in the summer, but last summer I had two surgeries so that sort of cut into my relief period.
Just wondering who plans to stay on medications forever and how you reconcile it mentally and without worrying about increasing your doses or covering acute pain episodes for other things. (My NP tells me to not worry about things like if you have to have a surgery, they can cover the pain.)
Hashinuttylady, I'm glad the gabapentin is working for you. I tried it last year and it did help the pain significantly but the side effects were way too severe to stay on it.
Sherry, as usual you're RIGHT :) It's been through this board and the help of members here that I have been able to set boundaries with my sister. I know that she will never understand. Where we are now is that I am done being defensive and I've told her that I've done my research and I have THE best medical care in the area. I told her that I have discussed my treatments and the possibility of addiction with all my physicians and that if my surgeon, anesthesiologist, NP at the pain clinic and my primary care ALL think I need these medications and also think that I will not become addicted then who is she to question them. She has been to several appointments with my surgeon.
You're also right about people with their own addictions pointing the finger at others. Maybe they're trying to take the pressure of them or make them feel better about their own issues. My sister is what I would consider to be a functioning alcoholic. She has a huge tolerance for it, always has. But she drinks a good amount every evening and at family parties she'll often have too much and can end up being very hurtful to people thinking she's funny. She's also had several falls over the year and can't quite remember what she did. She never misses work and is very successful at her job.
I am delighted to hear that you have had no problems when reducing your patch. The NP at the pain clinic has reassured me that when I want to reduce it she will see to it that I experience no withdrawal. And even though I trust and believe her, it sure is good to hear from someone who has actually done it.
Sherry, as usual you're RIGHT :) It's been through this board and the help of members here that I have been able to set boundaries with my sister. I know that she will never understand. Where we are now is that I am done being defensive and I've told her that I've done my research and I have THE best medical care in the area. I told her that I have discussed my treatments and the possibility of addiction with all my physicians and that if my surgeon, anesthesiologist, NP at the pain clinic and my primary care ALL think I need these medications and also think that I will not become addicted then who is she to question them. She has been to several appointments with my surgeon.
You're also right about people with their own addictions pointing the finger at others. Maybe they're trying to take the pressure of them or make them feel better about their own issues. My sister is what I would consider to be a functioning alcoholic. She has a huge tolerance for it, always has. But she drinks a good amount every evening and at family parties she'll often have too much and can end up being very hurtful to people thinking she's funny. She's also had several falls over the year and can't quite remember what she did. She never misses work and is very successful at her job.
I am delighted to hear that you have had no problems when reducing your patch. The NP at the pain clinic has reassured me that when I want to reduce it she will see to it that I experience no withdrawal. And even though I trust and believe her, it sure is good to hear from someone who has actually done it.
Hi, I just read your forum and I am so much going through the same things!!
It is frustrating when family and friends don't understand about the pain you are going through - and especially when they make comments like "you must be feeling better, you look so good.
If they could see me on a day to day bases, if they only knew what it took i get ready to go out . I to take norco and they just do not work well, i just started taking gabapentin and it seems to be helping but I have to take both meds. I tryed stoping the norco's nad without them the pain is worst. so they do take the alot of the pain away it is thae nothing seems to take it all away.
I also feel like I am 100 years old.and i am only 50. getting ot of bed always takes about a hour before i can walk. anyhow thank you for your post reading about other people that get it really helps and lets me know iam not crazy!!
Thank You, Terri
It is frustrating when family and friends don't understand about the pain you are going through - and especially when they make comments like "you must be feeling better, you look so good.
If they could see me on a day to day bases, if they only knew what it took i get ready to go out . I to take norco and they just do not work well, i just started taking gabapentin and it seems to be helping but I have to take both meds. I tryed stoping the norco's nad without them the pain is worst. so they do take the alot of the pain away it is thae nothing seems to take it all away.
I also feel like I am 100 years old.and i am only 50. getting ot of bed always takes about a hour before i can walk. anyhow thank you for your post reading about other people that get it really helps and lets me know iam not crazy!!
Thank You, Terri
I KNOW that I will be on my medication for life. I have NO other options. I will keep getting the RFA's as they wear off as they have totally gotten rid of my lower back pain. So far they have worked for over 8 months so far!!! I'm still lowering my Fentanyl patches but we didn't this month as the pain is STILL pretty high with my leg still healing. We probably won't lower it until February when we will be sure that my break is TOTALLY healed. Then we will start again and eventually get it AT LEAST back to 62 mcg IF not to 50 or MAYBE - if possible - 35 mcg. That way I will be able to stay on the Patches for the rest of my life as they REALLY help my pain and the Percocet are helping with the BT pain also. Of course, I'm much older than most of you and that's why I should have NO problem remaining on them for my lifetime. I'm VERY fortunate to have the GREAT pain relief that I get. :)
I NEVER would have been able to have my hip surgery IF I hadn't had the RFA as I couldn't have laid on my back for the 6 weeks that I was on bed rest because of being NON-weight bearing. They managed to keep me out of pain and did an EXCELLENT job of it!! I can HONESTLY say that with the exception of the mix-up when I FIRST came to my room after the surgery where they hadn't received my meds yet - the nurse went down herself and got what she needed for me - I had EXCELLENT coverage as the NURSES would actually come in with my pain meds and ASK if I wanted them before I would call them. They KNEW that it was critical to be sure that my pain was controlled at all times. They actually got a little upset when I let it go too far the first day I was in re-hab and told me NEVER to let it get to the place that I had to play catch-up. So DON'T worry as they WILL be able to handle your pain for you as long as your Doctor's are on top of it if you should have to have more surgery. :)
I'm SO sorry that you have the problems that you do with your family and Friends. It can be VERY difficult for people that don't have pain like we do to understand what we are going through. Unfortunately as they get older at SOME time in their lives they will PROBABLY experience our pain and THEN they will "get the picture". The BEST way to get through to them is to take them with you to the Doctor when you go so the Doctor can try to get through to them. The Doctor's can even give them your test results and EXPLAIN the results to them and that MIGHT help. I know I've said this before but that's what I did with my daughter. She went with me when I discussed the RFA with my PM Doctor and she went with me to my Surgeon AFTER my surgery so that she KNEW what I WASN'T allowed to do so that she would KEEP me from doing MORE than I was supposed to do as I have a TENDENCY to do that. :) Doing all of this REALLY helps her understand WHY I take the meds. PLUS she sees me EVERYDAY and can tell the way that I walk whether I'm in MORE pain than usual as I will slump if I'm not feeling well and otherwise I will stand up straight. As far as your sister goes - I've noticed that the people that are the MOST judgmental are the ones that ARE addicted to SOMETHING themselves. I've learned that here on the MH Forums. Even though you love your sister and she loves you - be SURE that you continue to stand up for yourself!!! Don't let her bring you down. You are doing EXACTLY the correct thing in not answering EVERY question!! Good for you. She needs to respect you and your choices as You know what is BEST for you!!! :)
As far as addiction goes - with me anyway - I've always been told that IF you REALLY need the medication you won't have any addiction. As I've come down 25 mcg's on the Fentanyl, I haven't had ANY problem coming down. I haven't been nauseous at all or felt ANY thing at all. I don't expect that I will have any problems. Now IF I quit cold turkey of course there would be repercussions from that as it would be dangerous also being I'm on 100 mcg's every 48 hours. BUT doing it under the Doctor's orders I'm doing just fine.
I, too, follow ALL of Jaybay's posts as her posts are EXCELLENT and she is knowledgeable on SEVERAL levels of PM. She expresses herself extremely well and many times I will learn something new from reading them. Jay has done a REMARKABLE job on lowering her doses of her Fentanyl!!! She knows what she needs to do and she DOES IT!!!
I think ALL of us have gone through what you are going through and asked ourselves the VERY same questions that you are asking now. We wouldn't be human if we didn't. I've just come to the realization of what is best for me and what I need to do to be able to have a GOOD quality of life and be as pain free as possible. I was fortunate to find an EXCELLENT Doctor that allows me to be a part of my pain management and LISTENS to me and makes suggestions. I know that you trust your PM Doctor also and I'm VERY glad that YOU have an EXCELLENT Doctor. Don't be afraid to talk to your Doctor about your flare-ups and ask for his suggestions. :) Remember that dependency IS NOT addiction!!! There IS a difference.
Being on MH has been VERY therapeutic for me. It has helped me so much since I joined back in March. It REALLY makes me wonder how I EVER got along without MH before. I've met SUCH nice people and some REALLY good friends. But the VERY best is getting to help other people and hearing THEIR stories and what they are having to endure. I've learned a lot from other people and I'm VERY grateful for that. :)
Mellie - you have always made the right decisions and I know that you will continue to do so. Just trust yourself and you KNOW that we are here as a sounding board for you. :)
This was a GOOD post. Really makes people stop and think.
Hugs and Love.......Mama Sherry
I NEVER would have been able to have my hip surgery IF I hadn't had the RFA as I couldn't have laid on my back for the 6 weeks that I was on bed rest because of being NON-weight bearing. They managed to keep me out of pain and did an EXCELLENT job of it!! I can HONESTLY say that with the exception of the mix-up when I FIRST came to my room after the surgery where they hadn't received my meds yet - the nurse went down herself and got what she needed for me - I had EXCELLENT coverage as the NURSES would actually come in with my pain meds and ASK if I wanted them before I would call them. They KNEW that it was critical to be sure that my pain was controlled at all times. They actually got a little upset when I let it go too far the first day I was in re-hab and told me NEVER to let it get to the place that I had to play catch-up. So DON'T worry as they WILL be able to handle your pain for you as long as your Doctor's are on top of it if you should have to have more surgery. :)
I'm SO sorry that you have the problems that you do with your family and Friends. It can be VERY difficult for people that don't have pain like we do to understand what we are going through. Unfortunately as they get older at SOME time in their lives they will PROBABLY experience our pain and THEN they will "get the picture". The BEST way to get through to them is to take them with you to the Doctor when you go so the Doctor can try to get through to them. The Doctor's can even give them your test results and EXPLAIN the results to them and that MIGHT help. I know I've said this before but that's what I did with my daughter. She went with me when I discussed the RFA with my PM Doctor and she went with me to my Surgeon AFTER my surgery so that she KNEW what I WASN'T allowed to do so that she would KEEP me from doing MORE than I was supposed to do as I have a TENDENCY to do that. :) Doing all of this REALLY helps her understand WHY I take the meds. PLUS she sees me EVERYDAY and can tell the way that I walk whether I'm in MORE pain than usual as I will slump if I'm not feeling well and otherwise I will stand up straight. As far as your sister goes - I've noticed that the people that are the MOST judgmental are the ones that ARE addicted to SOMETHING themselves. I've learned that here on the MH Forums. Even though you love your sister and she loves you - be SURE that you continue to stand up for yourself!!! Don't let her bring you down. You are doing EXACTLY the correct thing in not answering EVERY question!! Good for you. She needs to respect you and your choices as You know what is BEST for you!!! :)
As far as addiction goes - with me anyway - I've always been told that IF you REALLY need the medication you won't have any addiction. As I've come down 25 mcg's on the Fentanyl, I haven't had ANY problem coming down. I haven't been nauseous at all or felt ANY thing at all. I don't expect that I will have any problems. Now IF I quit cold turkey of course there would be repercussions from that as it would be dangerous also being I'm on 100 mcg's every 48 hours. BUT doing it under the Doctor's orders I'm doing just fine.
I, too, follow ALL of Jaybay's posts as her posts are EXCELLENT and she is knowledgeable on SEVERAL levels of PM. She expresses herself extremely well and many times I will learn something new from reading them. Jay has done a REMARKABLE job on lowering her doses of her Fentanyl!!! She knows what she needs to do and she DOES IT!!!
I think ALL of us have gone through what you are going through and asked ourselves the VERY same questions that you are asking now. We wouldn't be human if we didn't. I've just come to the realization of what is best for me and what I need to do to be able to have a GOOD quality of life and be as pain free as possible. I was fortunate to find an EXCELLENT Doctor that allows me to be a part of my pain management and LISTENS to me and makes suggestions. I know that you trust your PM Doctor also and I'm VERY glad that YOU have an EXCELLENT Doctor. Don't be afraid to talk to your Doctor about your flare-ups and ask for his suggestions. :) Remember that dependency IS NOT addiction!!! There IS a difference.
Being on MH has been VERY therapeutic for me. It has helped me so much since I joined back in March. It REALLY makes me wonder how I EVER got along without MH before. I've met SUCH nice people and some REALLY good friends. But the VERY best is getting to help other people and hearing THEIR stories and what they are having to endure. I've learned a lot from other people and I'm VERY grateful for that. :)
Mellie - you have always made the right decisions and I know that you will continue to do so. Just trust yourself and you KNOW that we are here as a sounding board for you. :)
This was a GOOD post. Really makes people stop and think.
Hugs and Love.......Mama Sherry
The funny thing with my sister is that she is, at the least, a problem drinker,and at worst an alcoholic. It's been going on for ages. She's also a pothead. And very,very judgmental and bossy. My new tactic with her is to not feel that I have to answer every question since a lot of them aren't out of genuine concern Don't get me wrong, I love my sister and I know she loves me. But she's the kind of person where "It's my way or the highway."
I now try to set firm boundaries with her without getting angry.I want a good relationship with her but not at the expense of my self respect.
Good luck with your decision with the teenager!
I now try to set firm boundaries with her without getting angry.I want a good relationship with her but not at the expense of my self respect.
Good luck with your decision with the teenager!
Hi Mellie,
I know what you mean about the families. Jay and I were just talking about the exact same thing. We were discussing rescuing the teenage daughter of a friend who I just picked up from the Hospital. He went in Sunday for puking voluminous amounts of blood. That's another story however.
People that don't understand dependence/addiction (your sister or Jays sister) freak out at the thought. You have many legitimate reasons to use narcotics and you are right to be concerned about addiction. But your issues take precedence. Don't let it overly concern you. You are under Dr. care. Take one step at a time. Feel free to vent.
I know what you mean about the families. Jay and I were just talking about the exact same thing. We were discussing rescuing the teenage daughter of a friend who I just picked up from the Hospital. He went in Sunday for puking voluminous amounts of blood. That's another story however.
People that don't understand dependence/addiction (your sister or Jays sister) freak out at the thought. You have many legitimate reasons to use narcotics and you are right to be concerned about addiction. But your issues take precedence. Don't let it overly concern you. You are under Dr. care. Take one step at a time. Feel free to vent.
These forums really save me. I can vent and say all the things that I would never say to anyone (except maybe my BF.) I know I can speak of, for instance, my irrational fear of addiction here. If I were to say it to my sister, for example, she'd take it and run with it and not see it for what it is ... just voicing a fear. Being able to be free on these forums gives me the energy to be positive and more present in my real life. Otherwise, all my energies would be sucked up with the pain and holding everything in.
Until I found this forum, I had no idea so many people were afflicted with such chronic pain. And I feel a lot more fortunate than a lot of people because even though my pain isn't where it's supposed to be, my pain team is great and work with me. So many people don't get that. They go from doctor to doctor with no one believing them. There can't be much worse than that.
Until I found this forum, I had no idea so many people were afflicted with such chronic pain. And I feel a lot more fortunate than a lot of people because even though my pain isn't where it's supposed to be, my pain team is great and work with me. So many people don't get that. They go from doctor to doctor with no one believing them. There can't be much worse than that.
:) I follow a lot of Jay's posts ... she is really knowledgeable on a variety of things.
My struggle is my own internal one. I get angry that I can't "tough it out" with no medication. But I know I'm in bad shape in a lot of areas. My hands alone are reason enough for medication. When I look at it rationally and put myself outside myself I know I would tell someone else to just take the medication and follow what your doctor says and that there is nothing wrong with taking medication in order to function. BUT there's a little voice in my head that tells me I'm weak or I should suck it up.
I had asked for a referral to a pain psychiatrist and PM approved it and worker's comp even approved it but the only ones around here would not take the reduced rate. I haven't given up on this,though, because I really think I could benefit from it. It's also through him I could look into other alternative therapies that I'm interested in, like acupuncture, hypnosis, etc.
The other part of my problem is that although I don't meet any criteria of addiction I am terrified of it. My ex-husband was an alcoholic who then started on cocaine and pills. I've also had other addicts in my life that didn't impact me as much as my ex but still affected me nonetheless.
I have no idea why I worry so much about becoming addicted. I know the difference between addiction and dependence. I've researched chronic pain and treating it with narcotics. I never take more than I'm directed nor do I run out early. But the fear is there all the time.
Part of it is I think why not me? Smarter people than myself have become addicted. I also worked as a court reporter and have seen so many people wind up where they never thought they'd be. All kinds of people from all walks of life have been caught up in this. And I saw the pain it brought to all. The families sitting in the courtroom ... both of the victim of whatever crime happened and also the families of the person heading to jail.
I'll figure it out ... these boards are are a tremendous help :)
My struggle is my own internal one. I get angry that I can't "tough it out" with no medication. But I know I'm in bad shape in a lot of areas. My hands alone are reason enough for medication. When I look at it rationally and put myself outside myself I know I would tell someone else to just take the medication and follow what your doctor says and that there is nothing wrong with taking medication in order to function. BUT there's a little voice in my head that tells me I'm weak or I should suck it up.
I had asked for a referral to a pain psychiatrist and PM approved it and worker's comp even approved it but the only ones around here would not take the reduced rate. I haven't given up on this,though, because I really think I could benefit from it. It's also through him I could look into other alternative therapies that I'm interested in, like acupuncture, hypnosis, etc.
The other part of my problem is that although I don't meet any criteria of addiction I am terrified of it. My ex-husband was an alcoholic who then started on cocaine and pills. I've also had other addicts in my life that didn't impact me as much as my ex but still affected me nonetheless.
I have no idea why I worry so much about becoming addicted. I know the difference between addiction and dependence. I've researched chronic pain and treating it with narcotics. I never take more than I'm directed nor do I run out early. But the fear is there all the time.
Part of it is I think why not me? Smarter people than myself have become addicted. I also worked as a court reporter and have seen so many people wind up where they never thought they'd be. All kinds of people from all walks of life have been caught up in this. And I saw the pain it brought to all. The families sitting in the courtroom ... both of the victim of whatever crime happened and also the families of the person heading to jail.
I'll figure it out ... these boards are are a tremendous help :)
hi i just wanted to say i no exacly what you mean when say family n friends dont understand what chronic pain actually is like. it takes such a hard toll on every aspect of your life small silly things are massive hard tasks and it wears your hole mind and body out. i just want you to no theres at least one other that understands compleatly and prob many more on here do. i think(even tho i probebly need to more) that we should always just try and take that tiny incy bit of optamisim thats in us and hope things will get better and try stay positive as if our minds give up so will our bodies keep spirts up as much as can take care
Fancy meeting you here.....
It's different for everyone. Some resign themselves to being on meds forever, others learn coping and other mental skills (through therapy) and are able to manage pain on reduced meds or none. My wife Jay is doing this as we write and doing very well at it. You and Gemini should talk with her.
It's different for everyone. Some resign themselves to being on meds forever, others learn coping and other mental skills (through therapy) and are able to manage pain on reduced meds or none. My wife Jay is doing this as we write and doing very well at it. You and Gemini should talk with her.
I've resigned myself (after much soul searching and fighting it) to the fact that I will be on pain meds for the rest of my life. It's been a tough, long road for me to come to accept this fact, but now I do accept it. Even if they replaced every arthritic bone and joint in my entire body (I'm like you and have it EVERYWHERE), I would still have the fibro and lupus pain to deal with and unfortunately, there is no "cure" for those. Yes, they can have times when they are not as bad and you begin to hope that maybe, just maybe, they really HAVE gone away, but then, as you've been experiencing yourself, BAM!!! They come back hard and fast and just zap the life right out of you and you realize once again, that while they may go into "hiding" for a while, they'll always be there lurking, just waiting to rear their ugly heads when you least expect or want it.
However, my hope for my pain and medications is that I'll be able to keep it "under control" rather than letting IT control me, although right now there are way, way many more days when IT controls ME as opposed to the other way around. Another hope of mine is to keep my medication levels as low as possible as long as possible. I know that at some point in time, everyone on narcotic pain meds develop a tolerance to them and have to either change their meds or the dosage of their current meds, but my hope is that I'll be able to fend off those needs as long as I can. There are times that I have to either go to something stronger or a higher dose of my regular meds when I'm having a really bad time, but I strive and work really hard to be able to go back to my "normal" meds and dosing as soon as I can. So far (knock on wood), I've been able to do this without having to stay with the stronger meds/doses.
I can totally relate to how you're feeling like an 80 year old - I'm also 47 and creak, pop, moan and limp like I'm 100 years older than that. It's so frustrating when I can't do something that even just six months ago I could.
I can also totally relate to how much effort it takes just to "look presentable" to others when you go out. Quite honestly, if I am not going anywhere and don't plan on having any visitors, most days I stay in either sweats or my pj's - there are many, many days when taking a shower is about all I can handle in the day, so even the thought of putting on "real" clothes is too much - so on goes a clean pair of pj's or sweats. I figure the more I can do to make myself as comfortable as possible, the better off I'll be.
It is frustrating when family and friends don't understand about the pain you are going through - and especially when they make comments like "you must be feeling better, you look so good!" - boy, if they only KNEW how much effort it took us to look that way!! They sometimes just don't understand that, even though they can't outright SEE what is making us hurt - no broken bones, no hideous bruises, not cuts or scrapes - we really ARE in serious pain. They also sometimes tend to think that just because we put a smile on our faces and are sociable, that we simply can't be in pain. What they don't realize is that we put those smiles on our faces because we care about them and don't want to burden them with our pain (at least that's why I do it). They also don't know about and realize how many times, when we're alone, we sit and cry because of the amount of pain that we're in. I'm very lucky and fortunate that my parents both really DO understand about my pain and my limitations, but it hasn't always been that way. My sister, niece, nephews, etc., and many of my friends still don't understand.
It's strange that you mention the dark circles under your eyes - I was just looking in the mirror this morning and if I didn't know better, I would have thought that I had been punched in both eyes, the circles are THAT dark.
I'm sorry you've been having such a tough time and I hope that you are able to get some relief very soon!
((((gentle hugs)))
Robyn
However, my hope for my pain and medications is that I'll be able to keep it "under control" rather than letting IT control me, although right now there are way, way many more days when IT controls ME as opposed to the other way around. Another hope of mine is to keep my medication levels as low as possible as long as possible. I know that at some point in time, everyone on narcotic pain meds develop a tolerance to them and have to either change their meds or the dosage of their current meds, but my hope is that I'll be able to fend off those needs as long as I can. There are times that I have to either go to something stronger or a higher dose of my regular meds when I'm having a really bad time, but I strive and work really hard to be able to go back to my "normal" meds and dosing as soon as I can. So far (knock on wood), I've been able to do this without having to stay with the stronger meds/doses.
I can totally relate to how you're feeling like an 80 year old - I'm also 47 and creak, pop, moan and limp like I'm 100 years older than that. It's so frustrating when I can't do something that even just six months ago I could.
I can also totally relate to how much effort it takes just to "look presentable" to others when you go out. Quite honestly, if I am not going anywhere and don't plan on having any visitors, most days I stay in either sweats or my pj's - there are many, many days when taking a shower is about all I can handle in the day, so even the thought of putting on "real" clothes is too much - so on goes a clean pair of pj's or sweats. I figure the more I can do to make myself as comfortable as possible, the better off I'll be.
It is frustrating when family and friends don't understand about the pain you are going through - and especially when they make comments like "you must be feeling better, you look so good!" - boy, if they only KNEW how much effort it took us to look that way!! They sometimes just don't understand that, even though they can't outright SEE what is making us hurt - no broken bones, no hideous bruises, not cuts or scrapes - we really ARE in serious pain. They also sometimes tend to think that just because we put a smile on our faces and are sociable, that we simply can't be in pain. What they don't realize is that we put those smiles on our faces because we care about them and don't want to burden them with our pain (at least that's why I do it). They also don't know about and realize how many times, when we're alone, we sit and cry because of the amount of pain that we're in. I'm very lucky and fortunate that my parents both really DO understand about my pain and my limitations, but it hasn't always been that way. My sister, niece, nephews, etc., and many of my friends still don't understand.
It's strange that you mention the dark circles under your eyes - I was just looking in the mirror this morning and if I didn't know better, I would have thought that I had been punched in both eyes, the circles are THAT dark.
I'm sorry you've been having such a tough time and I hope that you are able to get some relief very soon!
((((gentle hugs)))
Robyn
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