narcotic pain meds, Overall I am wondering about the problems people are having

Nini, I really enjoy having you on the board, and yes, of course you belong here!

I think a lot of people come to the boards when they are having problems to look for help, but we have several regular members who are stable on their pain meds and who get good help from them.

I am lucky enough to not need to use narcotics regularly, only for breakthrough pain. I am trying to hold off on narcotics as long as possible because I am so young and anticipate things could get worse as I get older. So for now, I take naproxen, which does give me awful GI side effects, and Tylenol #4 for breakthrough pain, which is mostly side effect free.

Heatherlynn and Whitebeard, thank you so much for your positive responses.  I was afraid to many people who need the meds, as we do, were allowing bad media attention make them feel like they were doing something wrong.  Just as diabetic, people with high blood pressure need there meds, so do we.

We have to keep fighting the powers that be to not make us feel bad about how we are managing our lives.  I have said this before, but this time I am going to do it.  I am contacting my county, state and federal people and tell them how I feel about being made to feel like a criminal, when no other chronic conditions are made to feel that way.  I do remember in the beginning of this ordeal, feeling like I was doing something wrong.  Even my mother thought I was just becoming a drug addict.  I am so done with feeling quilty about taking meds to have a better quality of life.

Again thank you so much, I feel so much better now, this issue has been bothering me for a long time.  Now I remember why I keep coming back.   You are all great.

Take care,

Kat

NiNi,
I have been on chronic pain medications on and off since 1992 and the only med that I can not take , at least not at the doses they gave it to me on , was methadone this last time. The funny thing was when I was on it in '92, I was on tens of times the dose that I was put on it last year and I did fine with it. This last time, I was only on 30 mg a day total and I just couldn't tolerate the sleepiness. It wasn't all of the time, about half way through until my next dose, but it got worse and worse the longer I was on it........so off it I went.
Other meds I haven't had any significant problems on, other than for a few minor side effects that went away, but now I am on a combination of LA and SA medications, muscle relaxers, antispasmodics, and Lyrica who all work really well for me , the majority of the time.
I do think that the media ( of all types- radio, television, print and the internet ) can have a negative impact on people's perceptions, especially when it comes to things like opiates. We see it here, all of the time- especially about subjects like how awful withdrawal is, or how life threatening it is to stop opiates, or how horrible it will be to stop a particular medication....and it's not always the case. In fact, in most cases it is none of those things.
I won't be made to feel bad because I am able to do far more than I can now, because of those meds than I am without them and I won't apologize to the pharmacist or the public because of taking them either.
Sandi

Hi,
I sometimes waffle between not wanting to take anything on a regular basis to knowing for sure that pain medication is the best thing I could do for myself. And And there's also the nasty physical affects that being in pain can cause on our bodies. Plus I need and want to remain independent.

There is a wonderful book my doctor told me about , called, How To Make Our Medicines Safer. (I think I have that right). It's all about how many people end up with much higher levels of medicines in their body than another person who's taking the exact same medicine. Everything equal their blood plasma levels are way different, causing many problems for them.

.... I wonder why they even call it "side" effects when it's really just another effect of the medicine.....

Years ago when I was trying many different pain meds and having bad side effects I met with a doctor who specializes in medicines and how they effect people and how their effect when combined with other meds. (I can't think of his title). He told me that many people can only tolerate one pain medication and that's why they make so many different types.

I'm often afraid to take a new pill because of scary past experiences. Some of those could have been because the doses weren't correct for me, some aren't made to be taken together, and others are just because I'm me.

But I have no shame in taking pain medicine. I know I need it if I want a life. I would be happy to tell the world about how I need them, but we can't even tell our neighbors because of the stigma associated with them, or they might be interested in getting their hands on them.

It's true for me that because things aren't going well I get on the boards, and when things are going well, I'm busy living my life doing other things that I couldn't do before then. Also because of my health conditions my time is limited no matter how well my pain is managed, so I have to pick and choose what I want to do with it.

There are SO many things I want to do in life that when I'm functioning I'm out trying to do all of them. (And boards are not meant to be a substitute for face to face interaction when-ever possible IMHO)

I think is going to be a rough time coming up soon, and I don't have a physical support system around me. No friends or family except long distance telephone. This is largely because I recently moved to another state and ended up in an condo complex that I call the Ghost Town.

There's 200 units only 6 of them are occupied at one time because they're vacation homes. I can't even find a good coffee shop to hang out in. This was not what I had in mind when I moved here.

Anyway, I knew I needed to try and create a virtual support system so that I don't feel so alone if things go south. I'm also trying to learn how to reach out to others and not keep all my problems to myself.

(Phew. If anyone has read this far I'm grateful.)

Imme
PS: ( I've read that one class of pain medications is more energizing than others, they call it a side effect, personal experience says I like that one.

Hi Kat

I just have to put in my 2 cents as well. Just because you're doing well on your meds, doesn't mean you don't belong here. I would definitely miss you if you left.

My meds are not working so well today, but I'm so glad yours do.

Take care.

love and hugs
Loretta

NINI53

 

 Like you NiNI and others, there are times when I wish that I was not on these pain meds, and antispasmodics, in fact there are allot of times I feel that way. Like you and others,... sometimes I even feel guility about it. When I start feeling that way,  I  then start thinking about my nursing days, and how I would talk with my patients about the need and use of pain meds. Allot of  terminal cancer patients are terrified of taking pain meds and becoming addicted to them! I know that, that might sound silly, especially if they are terminal, but this is a real concern for allot of these people. Allot of these patients felt reassured, when I explained how these medications were just treating there pain, and it was no different than taking any other medication to treat any other condition!

 

You know this is just not rationalizing the need to take the meds! This is based on what I learned in nursing school, and as being a nurse on an oncology unit, where pain is always a issue! Pain is a real condition, it is not ssomething made up and not psychosomatic, it is real, we are not crazy or addicts, we have conditions that cause the pain. Pain can be debilitative, so why  should we be made to feel guilty for wanting to treat it?

 

I wish that there was not such a negative connotation with using pain meds! People in pain have nothing to be ashamed of because they are taking pain meds.  I can remember so many times when my ex use to say "" oh it can't hurt that bad!"  " your taking to many pain meds  that is what is making you sick!"  " How can you be in pain taking all that stuff?" and  yet if she even got a little splinter in her finger, you would have thought it was the end of the world the way she carried on about!  I use to hear the same thing from her family about me using a cain! You know NiNi that is what makes this forum so special, the people here understand what your going through, and know about the pain you feel! I can understand the things you post, just as I can what all the others here, and what they post about. I can empathize, just as everyone here can empathize with me. 

 

But just like what imme posted I can definitely relate to just about everything in that post!  This forum might not be the same as being around people in the flesh!   But it is better than nothing at all and not having anyone to relate to! That is why this place is what it is, and what makes this place so great,  because there is always somebody suffering with chronic pain that is in the same or similar circumstances as what we are!

 

I guess I really am rambling, but this subject is something that is near and dear to my heart, and it has so many other off shoots to it that so many can relate to.

 

Sorry for rambling on,

 

White Beard

Hi Kathy,

Oh Kathy....I just had to reply to your post because I can totally relate to what you are feeling.  First of all, I wanted to tell you that I think you are an invaluable member to this forum and I, for one, have come to respect your input...you seem to be incredibly compassionate, as well as intelligent and you definitely DO belong to this group.

I understand what you are saying regarding the narcotic issues.  I've been on narcotic pain meds for about 5 years and I have felt guilty the entire time.  I know my guilt feelings are needless and it makes me so angry that I feel this way.  I have legitimate pain issues, but still, I feel like a criminal.  I hate how I feel when I stand in line at the pharmacy.  I hate how I feel when I call for a refill.  And maybe it's just me, but I feel like a criminal at the PM office.  It's even to the point that I hide the fact that I take pain meds....even to family members.  And that's a shame.

I love coming to this forum, because I have found such wonderful and caring people here.  But I have often felt that perhaps I shouldn't be here, either.  I feel that most of the members here suffer far worse pain than I do...and that makes me feel guilty as well.  I'm not sure where all this GUILT comes from.  I sought out this forum because I felt misunderstood and the need to find comeraderie (sp?) with others who could identify with what I am experiencing in life.  Honestly, I think the fact that we are all here NOW means we belong. 

I don't come here that often, but I always click on your posts and replies because you are someone that I feel I can trust.  Thank you for your responses to my posts and I hope to continue to see you here...

~~~HUGS~~~

Kathy,
I want to tell you that you belong here. The forum would not be the same without you. People come and go depending on life, their illness, and their need or growth. I would miss you if you left.

I am very sensitive to all drugs, not just pain medications. When my journey began, I felt horrible guilt for taking pain medications. Some doctors and well-meaning family or friends can make you feel as though all of this is in your head, you are taking too many pills, that narcotics for pain relief are wrong. I see a surgeon who swears that he can make me pain free. We are at the 3rd surgery, and still not pain free. I never will be. He has a goal to get me off narcotics, which would be wonderful, but surgeons for my conditions (endometriosis, adhesions in the pelvis and abdomen, ovarian remnant syndrome, and IBS) have reviewed my records and said I will never be out of pain. Accepting it is hard.

I envy those who don't have reactions to their meds, and can have a med change and not have to spend the next 2 weeks resting because of the adjustment. You and many others are blessed!

Mindy

I can't believe that there is a place that I can say I AM IN SO MUCH PAIN I CAN'T STAND IT AND I COULDN'T MAKE IT A DAY WITHOUT PAIN MEDICATION and not look like a med seeker or a crimminal. I worked at a doctors office and the staff used to say just horrible things about patients who called in if they were even just asking for an appointment because their back hurt or if it had ANYTHING to do with pain it became this huge controversy it was horrible. I tried to be an advocate and say, "Some people really do suffer and have actual horrible painful conditions that make their life impossible without medication." I feel guilty when I go to the doctor because I am in pain. I have just been through a horrible situation where I had what was supposed to be aroutine gallbladder removal but it turned out to be a super major complex surgery and then there where horrific complications. I ended up being in the hospital for 22 days in June and it has triggered a bunch of stuff to go wrong and I am STILL not better. I lost my job I would go into everything but I had been on pain meds for awhile due to a back surgery but still having problems and I had gastric bypass 9 years ago and I don't handle NSAIDS at all after the stomach surg I just had I understand now why a little more too but they now think I have auto immune hepatitis and one of the things that has brought this to docs attn is my constant pain as well as a host of other things but to get the docs to listen to me was unbelievable. I am nearly bald now and I have been so upset and I finally asked my doc for an ANA test and SHE ROLLED HER EYES and agreed to do it anyway and it came back positive.....now I am finally getting help but I am almost 4 months into my nightmare. They have been treating me so badly like I should be over all of this and back to work. I couldn't help it I wasn't getting better, I kept getting different weird symptoms and they wouldn't listen to me mainly because it involved pain. Why should we have to feel guilty or ashamed about this??????? If I would have just stopped because I was so upset and let it all go I don;t know what would have happened to me.

Unfortunately, it seems no medication is free from problems or side effects when it comes to pain management.

I used to use the pain patches that had NSAIDs in them and while it seemed to help a little, it irritated my skin and fell off pretty easily.

Celebrex and Mobic seemed to have less stomach irritation but didn't seem to work as well as pain compared to Naproxen. So here we have a medication that had less side effects but was less effective.

With Tylenol #3, the side effects were very mild, but my body built up tolerance too quickly.

Flexiril actually helped with muscle spasms, but it also made me totally lethargic for several hours.

As for my current medications, they seem to be fairly tolerable and provide reasonable pain relief, but both have their limitations as stated below:

Soma works quickly as a muscle relaxant and is quite effective. For me personally its the best choice for a muscle relaxant. However it does sometimes cause stomach irritation, and if I don't take a dose for 2 or 3 days, it can make me a little dizzy for about an hour.

Tapentadol (nucynta) generally works well for my pain. At 75mgs it generally has only "mild" cognitive effects and is VERY tolerable for daily use with minimal side effects. However at my breakthrough pain dosing of 150mgs, its cognitive effects are significant and can make me feel very naseated, dehydrated, and cause closed eye visuals/mild auditory hallucinations. Since being put on Soma, I've rarely needed a breakthrough dose so this medication isn't too problemsome.

From my experience every medication is different and most of the ones that actually WORK seem to have some mental or physical side effects. There's ofcourse the feeling of being judged when you pick them up from the pharmacy. However, for me the side effects and judgement are well worth the pain relief achieved.