Effective pain med on horizon?

[JamieMarc]

@30 plus years I suspect it has to do with whatever state you live in. Each state has their own laws, statutes, regulation, blah blah blah about controlled substances, and opioids in particular. I'm in Florida. We are probably somewhere in the middle of the strictest and most liberal states when it comes to controlled substances.

Also, here (and maybe across the country), doctors have to have a special certification to dispense controlled substances. Again, mostly opioids. Many doctors don't have that certification. When I first moved to St Petersburg from Daytona Beach and was looking for a new pain management doc, I used a combination of my Medicare website and the Florida Dept of Health portal to make sure I chose a doctor who was certified to prescribe tramadol since I was already taking it when I moved across the state.

 

[SBee]

@30 plus years here in the UK, my dr and myself discussed pain meds,and tramadol was one he suggested. So in UK it seems it is prescribed by GPs.
I opted to go with amitriptyline ( though am on naproxen and cocodamol, pain killers and anti-inflammatory meds for other conditions,along with other serious meds for inflammatory arthritis)
If push came to shove, I,like @sunkacola and @JamieMarc would take whatever gave me a better quality of life.

 

[ckahern]

I have had fibromyalgia for 30 years also. I have forgotten what it is like to feel normal. I feel like Fibro stole my life from me. I wish I had some words of encouragement, but not today. All we can do is hold on to hope that things will get better.

 

[sunkacola]

I have had fibromyalgia for 30 years also. I have forgotten what it is like to feel normal. I feel like Fibro stole my life from me. I wish I had some words of encouragement, but not today. All we can do is hold on to hope that things will get better.

I know what you mean.
I am sure many of us here do.
Fibromyalgia stole my life, also. All of the things I loved most to do in life are now things I cannot do, with the one exception being just having my dogs with me and loving them. My favorite activities, the things that really made my life fun and enjoyable, are all very active things, most of them outdoors, and inaccessible to me now. I know the thing to do is find new things to love, but I've been an active person all my life and while I love to read, watch movies, and visit with a friend, those things cannot sustain joy in life the way hiking up a mountain or working out or going camping or dancing for hours did.

My way of dealing with it is mostly just to be genuinely grateful for what I do have. My home, my dogs, the sunsets and the mountains I see from my windows, the quiet. It's more than a lot of people have, so I remind myself that I am lucky.
But on some days that's not very easy to do.

 

[Ian waxman]

@Ian waxman This is exactly why I keep on seeing specialists, continuing with imaging and blood testing, etc...why I don't give up searching for an answer for my own pain. Because I am reliant upon pain medication myself -- not as strong as fentanyl -- and I don't want to be reliant upon it forever. At this point, I'm going slow and careful -- no rash decisions -- but everything is on the table for consideration, even surgery as a last resort. I'm just starting out now with a new arthritis and rheumatology doctor; still early days with her. I need to get the imaging and blood tests done that she ordered, but I'm overwhelmed with hurricane repairs and there just doesn't seem to be enough relatively pain-free hours in the week yet to get them all done. Getting closer though.

Hopefully, by January I will have been able to get the testing done, go back to see the doc, and plan our next course of action. My newest pain is inflammation and very painful stiffness in my hands every morning for several hours, and then again at night. We're working on that and my osteoarthritis in my spine and right hand.

But I digress. My point is I agree with you, and I look forward to the day (knock wood) when I can be opioid-free. I do want to say here to anyone reading that pain (our kind of severe, chronic pain) is worse than opioids. Better to choose pain-relief and have some quality of life than none at all because that's not living, not to mention what the pain does to our mental health as well. Opioids are serious business, not to be taken lightly, but as so many will attest to, without them my quality of life would be zilch, nada, not worth living. They do what they are supposed to do for me -- help relieve some pain -- and nothing more. I don't get high on my med. I don't feel my med or dose is mind-altering at all. And I thank God for that because hydrocodone, for example, was mind-altering for me...so much so that I couldn't take it and switched to tramadol.

I don't look forward to the day when I will be weaning off my own pain med. I get your point, and I know others who have gone through what you are going through right now. Your point is well-taken: the true danger of opioids and other addictive substances is becoming so dependent upon them that without them you suffer physical and mental anguish.

I'm glad that you can laugh, Ian. I try to do the same. The alternative is not an option for me for it would bring me down to the deepest depths of despair and depression. I cannot let that happen. So I laugh, and I remain grateful every day. I'm sorry for the hell you are going through. Reading about your health problems makes me even more grateful, and I hope you understand that I mean that in a kind way. When I begin to feel sorry for myself or angry at my conditions, I remind myself that compared to hundreds of thousands of others I have it "good."

Anyway, I meant it when I said I'm here for you. I'm glad you are writing and staying in touch with us. I'm glad that you love yourself enough to do that for yourself. Let us be here for you just as you are here for me.

Hang in there, my friend. Hugs!

Hi.thanks for the kind words.my doc put me on duloxetine.i was taking the highest dose 120mg and I’d been on it for a month.i guess you know where I’m going.the pain was chronic.it wasn’t hitting the sides.i was at my wits end.the pain in my bones was crucifying me and my wife said put the fentanyl patch back on.i was down to 37.5 fentanyl patch and 120 duloxetine and it was doing nothing.i honestly felt suicidal.sick of the extreme pain.sick of the headaches,ibs,nausea and not being able to function.how much torture can 1 person take?i was gripped and couldn’t even walk.i put the fentanyl 62.5 patch on and within 2 hours i could function.my pain just about disappeared.am i a opioid addict or is there something so extreme wrong in my body that only fentanyl can help.i can’t live my life in agony or i would honestly do the deed.its been 30 years of hell and it’s not got 1 bit better I have bursitis of the shoulder and spondalosis of the lower back which was diagnosed 30 years ago so maybe the lower back pain could be triggering my pain.i’ve said this to the doc and they said it’s stemming from your brain so tat rules out that.so basically it’s fentanyl or agony and I’m afraid I’m not living my life laid up.also my sex life has gone tits up with the meds.life can be really cruel.viagra gave me terrible headaches.i’ll keep plodding on but I’m at my wits end on all my medical issues.just had a full blood count and checks on my liver,blood pressure,cholesterol.i’ll keep you informed

 

[sunkacola]

@Ian waxman ...........I am so sorry, and I truly can empathize with you. Over the past year my pain level has steadily increased to the point that I am significantly disabled by it. I asked my new doctor to prescribe tramadol, because so far that is the only thing that has made a difference for me without also causing me to either feel like a zombie, be fully stoned to the point of not being able to drive, (which I cannot permit because I live 25 miles from town with no other people to help me if I need something or there is an emergency), or cause terrible side effects. He refused.

So my next stop is a pain clinic, and I can only hope with all of my being that they will be willing to prescribe it for me, because it is basically a life-or-death thing for me at this point. At least there is something that I know will help me to live a fairly normal sort of life, definitely diminished from what it used to be but not fully disabled either, as opposed to being a lump on the couch all day and awake in pain all night. I can fully accept a diminished life....that's reasonable. What I cannot accept is to have no life at all, just an existence in pain. And the same is true for you.

So if the only medication that makes the difference is addictive, my feeling is I don't care. I fully understand your choice with regard to the fentanyl. I, too, have reached the point of feeling suicidal because to lie all day every day on the couch in pain, unable to walk the dogs or play with them, unable to clean the house or do laundry, unable to cook food for myself, is an existence but is not living. My feeling is that if the choice is to have some semblance of a life or not to have any life worth living, and if the ONLY thing that makes that difference for you is a drug that people don't want to prescribe because it is addictive, then the only reasonable choice is to take the drug and whether or not you are addicted to it is pretty much a moot point. If you (or I) are not stealing, buying it on the street, committing crimes to get it, taking it to get high, or any of those things then what does it matter if you are "addicted", and how can anyone, even ourselves, really tell if we are literally addicted to it or if it is just the only thing that helps because our pain is that bad.

To me the worst thing is that we are treated with suspicion, as if we were drug seeking people, and nothing could be further from the truth!! I don't want to get high. I don't want to feel stoned. I don't want to take any drugs at all, not even OTC ones. I rarely drink alcohol, and never more than a small glass of wine. I'd give just about anything not to have to take any medication at all! But we need to be permitted to take what we have to take in order to have a life.
Hang in there, JohnSalmon. At least we can come here and talk about it, where people understand.

 

[30 plus years]

@sunkacola So sorry you're in that much constant pain. And that your new dr turned down your request for a drug that you know helps you.
In another post I mentioned how hard it is to get that RX (or anything opioid related) where I live. I saw my dr - actually, certified nurse practitioner - the other day, and when I asked about being put on it, first she said it was a no-no to mix that with the Clonazepam I'm already on (which is a very low dose, .25 twice a day). Then she said she'd speak with her supervisor and get back to me. I'm not holding my breath.

Also, in the area where I live, the closest "pain clinic" is far from what it should be. Even practitioners within their own system have criticized it.
Maybe it's changed, but years ago I went to this pain clinic for terrible pain in my ribs from costochondritis. I thought I might get an injection. The person who evaluated me said he never saw anyone who had so much pain all over - by the way, two other providers told me the same thing! yet nothing was done for me. I could've cried.

So I guess the takeaway is we have to keep using the things that slightly
help. The CBD, heating pads, ice packs, pillows, pain creams, sprays, supplements, anti-depressants, sleep aids, relaxation techniques, etc.
It's work, and the irony is it's exhausting and we have such limited energy on top of it!! I know I'm sick of it all, the effort it takes just to get through daily living. But we're warriors, right? Superheroes?

Hang in there, and I sincerely hope the pain clinic will help you.

 

[JamieMarc]

@Ian waxman Hugs, bro! If fentanyl, at whatever minimum dose works to give you functionality and some quality of life, I say go for it. If the alternative is suicide, being laid up in bed for the rest of your life, constant, persistent agony....screw all the addiction hype! Pain meds CAN be taken responsibly, improve quality of life dramatically and give us some hope and joy back in our lives. @sunkacola and I have discussed this before: pain that negates quality of life is WORSE for us, for anyone, than taking effective pain medication. I know I sound like a broken record on this issue sometimes, but I just don't like effective, life-saving drugs being demonized simply because they can be addictive.

Please give yourself a break and embrace whatever relief from pain you can get. I had ZERO quality of life, felt just like you (suicidal, hopeless, etc) until I was finally able to get the pain medication that I needed to complement all of the many other things I take and do to manage my pain. I just got back from a 10-mile round trip cycle, a long-time passion of mine. 3 years ago, before my pain med, I would not have been able to do that. So I am grateful every single day that I am able to still do most of the things that bring me joy, meaning and purpose in my life.

Thanks for offering to keep us informed. We Care About You! Another hug for you, brother.

 

[sunkacola]

@JamieMarc you are right that pain meds can be taken responsibly, and that being in that level of pain is far more debilitating to life than taking a medication even if the medication is addictive.

@30 plus years I am so sorry you don't have a decent pain clinic where you live. It's just crazy the way that we are treated, when a simple prescription would give us a life worth living.

I think one of the most frustrating things is that without some way to mitigate the constant pain just enough --it certainly never goes entirely away and I don't even hope for that --there is no energy available to do the other things that we know we need to do, as you say. If the pain can be lowered just enough that all my energy is not taken up just trying to deal with the pain, I can do (and am so very happy to do) all the other things that will help to ease it a bit more. Taking a walk with my dogs every day, keeping the house clean and tidy, maintaining a positive attitude and keeping stress as low as possible, even shopping for and cooking healthy meals and doing relaxation exercises...all these things take energy. And if all I can manage to do is lie on the couch, I cannot even do these supportive things. This is what I am hoping to get across to the people at the pain clinic when I am able to see them.

 

[JamieMarc]

@sunkacola when do you go to the pain clinic?
I'm really hoping that they will listen to you, take you very seriously as you deserve to be, and help you get the medication that you need. Cuz you're absolutely right. Pain in itself is also absolutely exhausting! Like you being stuck in your bed or on the couch, every morning I'm stuck in a chair for 2 to 3 hours because my pain is just taking everything out of me. Every ounce of energy.

Please let us know how it goes at the clinic.

 

[sunkacola]

Thanks, @JamieMarc . I don't have an appointment yet with the clinic. The doctor I saw gave me a referral, but I have to wait for the clinic to call me after they get the referral. Of course, if I don't hear from them by the end of next week or so, I will call them to see if they got it. Just a whole other set of hoops to jump through.
Thanks for your support!
It actually means a lot. Hug to you.

 

[ckahern]

I too can relate to the feeling of hopelessness and thinking about ending my life. I could not do that to my family though. My youngest son Beau took his life in 2004 and I found him dead in his bed. It completely changed who I was. Now on top of fibromyalgia I suffer with anxiety, PTSD and severe depression, which only makes the pain worse. I am tired of doctors minimizing what I am feeling!! I agree that it is better to have some relief rather than having no quality of life, but finding a doctor that gets it seems impossible!

 

[Ian waxman]

@Ian waxman ...........I am so sorry, and I truly can empathize with you. Over the past year my pain level has steadily increased to the point that I am significantly disabled by it. I asked my new doctor to prescribe tramadol, because so far that is the only thing that has made a difference for me without also causing me to either feel like a zombie, be fully stoned to the point of not being able to drive, (which I cannot permit because I live 25 miles from town with no other people to help me if I need something or there is an emergency), or cause terrible side effects. He refused.

So my next stop is a pain clinic, and I can only hope with all of my being that they will be willing to prescribe it for me, because it is basically a life-or-death thing for me at this point. At least there is something that I know will help me to live a fairly normal sort of life, definitely diminished from what it used to be but not fully disabled either, as opposed to being a lump on the couch all day and awake in pain all night. I can fully accept a diminished life....that's reasonable. What I cannot accept is to have no life at all, just an existence in pain. And the same is true for you.

So if the only medication that makes the difference is addictive, my feeling is I don't care. I fully understand your choice with regard to the fentanyl. I, too, have reached the point of feeling suicidal because to lie all day every day on the couch in pain, unable to walk the dogs or play with them, unable to clean the house or do laundry, unable to cook food for myself, is an existence but is not living. My feeling is that if the choice is to have some semblance of a life or not to have any life worth living, and if the ONLY thing that makes that difference for you is a drug that people don't want to prescribe because it is addictive, then the only reasonable choice is to take the drug and whether or not you are addicted to it is pretty much a moot point. If you (or I) are not stealing, buying it on the street, committing crimes to get it, taking it to get high, or any of those things then what does it matter if you are "addicted", and how can anyone, even ourselves, really tell if we are literally addicted to it or if it is just the only thing that helps because our pain is that bad.

To me the worst thing is that we are treated with suspicion, as if we were drug seeking people, and nothing could be further from the truth!! I don't want to get high. I don't want to feel stoned. I don't want to take any drugs at all, not even OTC ones. I rarely drink alcohol, and never more than a small glass of wine. I'd give just about anything not to have to take any medication at all! But we need to be permitted to take what we have to take in order to have a life.
Hang in there, JohnSalmon. At least we can come here and talk about it, where people understand.

I totally agree.the way the doctors treat you it’s as if we’re desperate for the meds.well guess what we fookin are.we really are so desperate and at our wits end that if you can’t prescribe tramadol or fentanyl just because it’s deemed as a drug you get hooked on.we’re not hooked we just want some form of life without agonising pain.intense pain.pain that drives deep into your bones that you wish you weren’t on this planet.whats the point when your laid up cos you can’t physically do the slightest thing because it’s like climbing Mount Everest.people say oh your looking well today well guess what I’m not well I’m physically drained,mentally drained,sick as a dog,guts crippling you.heading to the toilet 6 times on trot or not going for 2 weeks.not interested about going out for meals cos you feel sick as a dog or just the thought of food repulses you.waking up in the morning in crippling pIan and just wrench yoursen out of bed to the meds.cos that’s all you think about.feeling nasty and mixed up with my wife cos she still can’t get her head round it.she says go for a walk with dogs.don’t you understand I’m f in crippled with pain.you go a little walk and come home feeling crap and needing to rest,shut my eyes and pray this crippling pain settles people haven’t a clue.i hope your feeling better.no I’m not.a typical day for me.horrendous and pig si

I too can relate to the feeling of hopelessness and thinking about ending my life. I could not do that to my family though. My youngest son Beau took his life in 2004 and I found him dead in his bed. It completely changed who I was. Now on top of fibromyalgia I suffer with anxiety, PTSD and severe depression, which only makes the pain worse. I am tired of doctors minimizing what I am feeling!! I agree that it is better to have some relief rather than having no quality of life, but finding a doctor that gets it seems impossible!

totally agree with you.so sorry that your son took his life.how do you ever get over that?mental torture that you will never get over.as you quoted about the doctor i contacted my doctor regarding my pain was chronic and all i got was you’ve not given the tablets long enough.duloxetine.i’ve been taking them for over a month and my pain is increasing.they have no idea of the way fybro gets a hold of you and the pain we’re in.unless the doctor has had fybro they haven’t a clue.you have been through terrible trauma and the doctor just doesn’t get it.i hope you keep battling and get the right help you deserve.take care.we’re here for you.this is a battle we’re all in

 

[Grace3]

How did the suboxone workout for you. I hope you dont mind me asking. My name is carol im quite new here myself.

 

[Ian waxman]

@30 plus years I suspect it has to do with whatever state you live in. Each state has their own laws, statutes, regulation, blah blah blah about controlled substances, and opioids in particular. I'm in Florida. We are probably somewhere in the middle of the strictest and most liberal states when it comes to controlled substances.

Also, here (and maybe across the country), doctors have to have a special certification to dispense controlled substances. Again, mostly opioids. Many doctors don't have that certification. When I first moved to St Petersburg from Daytona Beach and was looking for a new pain management doc, I used a combination of my Medicare website and the Florida Dept of Health portal to make sure I chose a doctor who was certified to prescribe tramadol since I was already taking it when I moved across the state.

It’s much more freely dispensed in England to my downfall I’m afraid