Tips for working with your doctor to help pain

Posted by galesr @galesr, Oct 9, 2023

I'v been on pain meds all my life so I could have a life. In the last three years my doctor has taken off all pain meds. Life really sucks now. I'm back to not being able to do things I enjoy. And they wonder why from there we are depressed. No fun in life any more. Are real people with pain paying for the real dug addicts? Wish the doctors could feel our pain!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Yes I know I have gone through all that for at least 30 years. I don't miss the constipation. I do get back pain shots when I feel the need. This doctor finally hit the right spot. Feels so much better.

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Oh my, again. This thread is spot on. Pain med rollbacks are hurting those who really need them for quality of life. I think providers are now afraid to help people, even those whom need the help. Before my bout with awful neuropathy, I had over 20 kidney stones. Back then they treated the pain properly, now with the neuropathy, I had to try about 8 meds before doctor gave in and added 1 dose daily of tramadol. For acute pain the protocol is 4 per day. I get one. Pain is undertreated more than ever now.

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Why is it that this society doesn't want us to feel happy/well.
There is no reason why people shouldn't use Marijuana, or other feel well things.
Bela Lugosi (It's Halloween!) was a heroin user his entire life successfully.
Coca Cola had coke in it originally!

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I wonder if it is all this simple:

1. A chronic pain treatment plan is completed by a pain specialist for ongoing pain medicine.

2. A GP must follow that plan and any variation requires the pain specialist visit to vary the treatment plan.

3. 3 times a year at random times a patient must submit to a urine test in the doctor's office to avoid any substitution issues

4. Every 2 years, your main pain specialist refers you to another specialist for an independent review. This ensures the patient receives a second opinion every 2 years, and the referring doctor is covered by essentially his own peer review.

5. Within a 3-year, you must have had a new MRI, Ultrasound, and X-ray reviewing the issue and be seen by a pain psychologist to ensure your mental state is also reviewed.

I know no system will be perfect but isn't some structure on how long-term pain medication issued the key to all this? This means a GP cannot keep issuing pain medication without specialist oversight. It then makes it hard for those who abuse our much-needed medication to jump through all these hoops.

I think something like this is a sensible solution that has a reasonable timeline for a patient and is done at a cost that is not prohibitive. I was visiting a pain specialist every month to get a costly script for no great reason and was happy to have a urine test at any time.

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@csearch

@scottrl, you raise a great thread on doctors' treatment. I had this response in another forum and thought I would post it here too.

If those we rely on - the doctors - treat us with indifference, how do they think it makes us feel? Some doctors have been so desensitized they treat us like a number; if there is no solution they move us on; in some cases, they say (in not so many words) we are lying to get more pain drugs, or if your doctor moves their practice or closes it, you then try a few other clinics to find the help you desperately need – you are accused of "doctor shopping."

If we had cancer instead of pain, would we be treated like that – I THINK NOT! Imagine the outrage – cancer patients treated like criminals, disrespected, and denied adequate treatment. At some point, the Government and many doctors have to realize pain is a condition we have no control over, and just because some people abuse pain medication, why do the rest of us have to be treated the same way? As our population gets older, pain will be an increasing issue with an aging population. Many years ago, I told myself I refuse to live in pain and have no life, so I will responsibly manage the condition using prescribed medication to live a fulfilling and meaningful life. I was treated by one pain specialist who cut everyone's medication by 25%. He told me he did this because the DEA would be less likely to audit his books, and he would have fewer questions asked of him by the government. How is that a responsible behavior by a trained specialist? yet I can see his point, as his job is on the line. Two wrongs do not make it suitable for us!

In many ways, the government is to blame for its overreaching attitude and for looking at pain management as only the number of pills issued to a person (without understanding their condition) or how those prescriptions can be used by irresponsible people in the public. Yet in this day and age, they still allow smoking to be legal and, surprise, surprise, make money off it through taxes, yet we all pay the price through our taxes many years later as those cigarettes cause many medical issues. Smoking is a choice; pain is not; we did not choose it; it was a card we were dealt. If a specialist oversees our pain management, isn't that a responsible way to manage the disease, we have? That is the way other conditions, and their treatments are addressed by medical professionals.

If those we are supposed to trust do not treat us with the respect we deserve for our condition, how are we supposed to feel? I dream of the day pain will be measured and managed through individual data, and our treatments will then be designed in the best interests of us (the long-suffering). Because pain cannot be measured in an individual (no doubt you have all had to fill out the pain charts), for example, glucose levels - therefore in many outside people's eyes, does chronic pain exist as a disease, or is it in our all heads and we want the supposed high? We unfortunately have a medical condition, and we just want to live a decent life - is that too much to ask?

I still hope to see a change in pain management and medical attitude in my lifetime.

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I agree 100 percent I looked on google for the most painful conditions in the world and peripheral neuropathy was number 7 and I was self medicating for years because people just thought I was a drug addict.

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@frances007

in reply to @scottrl I read your post with great interest and could not agree with you more on anything that you have written. Not too long ago I told my PCP that I wanted to feel like I "mattered" to him and to Sutter. His response, "Do you want another doctor?" Last night I finally had a response from the liver specialist to whom I posed a question after a CT scan revealed a lesion on my liver, and in my question I told her that I was reminded of an earlier comment she made to me during a video visit, and with whom a friend was sitting next to me and taking very copious notes because I do not hear well, and the doctor is from India. During that appointment she said to me that the radiologist cannot make a diagnosis, only the doctor can make the diagnosis of whatever. So, I mentioned in my message to her that I was asking about the lesion because I had remembered what she had told me in the past about radiologists. She told me that she did not recall making the comment, or that I had "misinterpreted" the comment and that further questions should be addressed with my gastro doctor who I filed a grievance against over a year ago when he essentially threw me out of his office because I was asking too many questions. This has been been my experience over the past 3.5 years while my clinicians try to diagnose my problem, while in the meantime I have lost an enormous amount of weight, take pain pills like candy and well, just continue to put one foot in front of the other.

While watching 60 Minutes this past weekend, I was especially astonished by what the fellow who developed IA had to say about what he had built. While it all sounds very dangerous, perhaps in the future there is hope for many of us who suffer, as soon there will be robots diagnosing us, and it is anticipated that AI will know a lot more about us than those doctors who choose not to treat us.

Furthermore, the next time I have to fill out a form that asks how I sexually identify myself, I told a friend I will check "other" and write down the word "unicorn."

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How sad. But you gave me hope!!!! A I Currently we have AUI ! Unintelligent!

Plus guess we should form a club, got kicked out by doc. Me too!!!!! Saw 6 cardio’s. All in my head. But I found a new one before their letter came. Love him, caring. First things out of his mouth was, do you know how many patients I have that are on pain medication’s and also have cardiac problems? It’s not your pain meds. It’s your pain that’s causing your heart problems. I almost broke down in tears. Need to start a club. Yes I wrote a letter to the Director of the hospital pertaining to an electro cardiologist, who I waited eight months to see, who spent four minutes with me, and said my problems were due to my narcotic addiction! I take 7 mg a day that’s it. He walked out and I wrote the letter and all hell broke loose. Now even my PCP is handling me with kid gloves.
Received a letter one of 4 discussing my situation and what he wrote on my record. So if anywhere I go, now pegged as a junky. Had a atty send a letter of intent. Boy that went through the community! Handled with kid gloves, still no answers to my condition, been 6 years of strange symptoms. Only been on med 2 years due to a botched knee replacement!!! But I am not stopping. Do no harm, part of their ethics….it will be do no harm in the end. From Chicago, we don’t take things lightly! We all must stand up especially when we are not abusing!!!!

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@taftst1 I have had chronic pain for 30 years, and no one could find the reason until recently. Suppose they cannot find the cause of the pain. In that case, they tell you it is all in your head, have some other wild theory, and keep pushing you to other doctors you have already seen twice, MRI which show nothing, or want to try the unnecessary treatment to pacify the Government because you are given pain medications. This issue I always tried to explain was in both legs at precisely the same spot, and that is not a coincidence in my books. It must be something about how I am built structurally in that area. In one ear out the other, this seemed to go.

After 30 years, I decided to go on my own to an orthopedic specialist who referred me to a very experienced radiologist who consequently found a calcium buildup on my Fibula (both legs), not a lot, just 2-5mm. Still, it was right where the main nerve goes between the calf muscles and the fibula. He indicated he usually would not have commented on it except if he knew I had ongoing chronic pain. An orthopedic surgeon removed this buildup; my left leg is reasonable now, and my right leg is better than it was, but I still require medication. The calcium buildup looked like a coral reef, and that main nerve rubbed every second of the day. As the calcium buildup would always continue and the pain would only worsen over time. Due to the length of time of the rubbing of the nerve it may never get better. The new specialist said that as it is a main nerve and heals from the lower spine at 1mm per day, it will take three years to see if it will fully repair. Until then, it will be responsible pain management through medication.

What annoyed me was the pain specialist, who seemed to think it may be in my head never apologized for what he said nor acknowledged my persistence in going off my own back to an orthopedic specialist, which was the start of the discovery of the actual issue. As a senior manager, if I am wrong or wronged someone, I am the first to apologize, as that is the right thing to do. No wonder we are so frustrated at the current status of pain management in this country.

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in reply to @galesr I have been following this thread about chronic pain and medication for the same, and I can say with honesty that I have not run into any problems having my scheduled medications filled by my doctor. Last month I ran a few days early and when I requested a refill I commented that the medication has not been controlling the pain, and my doctor went ahead a refilled the medication for me. Granted, I have asked for stronger medications, and did try adding the methadone back into the mix a couple of months ago, but my body rejected it. I was glad because I really did not want to go back on this medication. What I do find astonishing, as does my pharmacist, is that my doctor will not reconsider giving me a rx for a pain patch, in light of the fact that he keeps telling me that the pain medication I take orally may be the root cause of my liver damage. I was on a fentanyl patch for many years until I fell into the Medicare donut hole, at which time I was given the methadone to use in conjunction with the Norco for breakthrough pain. While I have been advised not to take Advil, I do take it because in many cases it works better than the Norco. I just have to remember to take it with food, Oy vey.
At this point in my life I am not worried about drug dependence because the medication is the only thing that allows me to live a full and happy life. I am sorry for those of you who suffer as you do, as I understand intractable pain. Ice has become my best friend.

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@frances007

in reply to @galesr I have been following this thread about chronic pain and medication for the same, and I can say with honesty that I have not run into any problems having my scheduled medications filled by my doctor. Last month I ran a few days early and when I requested a refill I commented that the medication has not been controlling the pain, and my doctor went ahead a refilled the medication for me. Granted, I have asked for stronger medications, and did try adding the methadone back into the mix a couple of months ago, but my body rejected it. I was glad because I really did not want to go back on this medication. What I do find astonishing, as does my pharmacist, is that my doctor will not reconsider giving me a rx for a pain patch, in light of the fact that he keeps telling me that the pain medication I take orally may be the root cause of my liver damage. I was on a fentanyl patch for many years until I fell into the Medicare donut hole, at which time I was given the methadone to use in conjunction with the Norco for breakthrough pain. While I have been advised not to take Advil, I do take it because in many cases it works better than the Norco. I just have to remember to take it with food, Oy vey.
At this point in my life I am not worried about drug dependence because the medication is the only thing that allows me to live a full and happy life. I am sorry for those of you who suffer as you do, as I understand intractable pain. Ice has become my best friend.

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I refuse to take prescription drugs for almost anything anymore. I use Advil or Ibuprofen. I was told by a Dr at the hospital to take 2 tylenol extra strength every 4 to 6 hours but my body got used to them and they do not work anymore.

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@foxylloyd

I agree 100 percent I looked on google for the most painful conditions in the world and peripheral neuropathy was number 7 and I was self medicating for years because people just thought I was a drug addict.

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I have sciatica which keeps me from walking in the mornings and when I do walk, I have an imbalance of walking. I have been to the hospital twice with this and the Drs do nothing, I want a cortisone injection but my Practioner won't refer me to a neurologist . What is she afraid of ?

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