Frustrations with pain management

I started replying to another discussion on pain management, but I realized I may easily have been hijacking that discussion. The real reason though that I felt this needed to be separate is that some people need encouragement that they are going to have a great experience with pain management, and if you fit that description, you might want to quit reading this now.

My experience with pain management at its best has been less than satisfactory, and at its worse has been frustrating, depressing, and inhumane. I've had dogs receive better treatment for their arthritis than the treatment I was receiving by a supposed specialist. But here is a summary of what has happened: I was diagnosed at age 21 in 2007 by a rheumatologist. After the diagnosis, my primary care dr prescribed and managed all of my medicines, and I had something that was working for me and the dr and I were both comfortable with. I had three medicines that were used on an as needed basis; tramadol, tylenol, and flexeril. The does were; tramadol 50mg pills, 1 or 2, every 4 hours as needed (it was up to me how bad the pain was, and if i needed 2 or could get away with one). Tylenol arthritis (the pills are 650mg, and this is extended release) 2 pills, every 8 hours as needed, and flexeril 10mg- 1 every 8 hours as needed.

Well then fall of 2014 my dr told me the that the rules on prescribing tramadol were changing, and that I would have to see a pain management dr to continue with that medicine. My first appointment was March 2015, and this dr right away said he would never prescribe the dose of tramadol that I had been on. So I consented to trying multiple other meds, most of which either didn't work or came with side effects too severe for me to continue with the med. The rules were far too strict and made me feel like I was assumed to be an addict, and had to constantly prove that I wasn't. Drug testing was mandatory, and done at every visit. Visits were required every 30 days. And, those drs visits could easily take hours with all of the time spent waiting (my actual time with the dr would be just minutes). The medicine I am currently on works for mild flares, but can't touch severe pain, and I can't really ask for more or say it isn't working enough out of fear of being labeled a drug seeker- but i've put up with it because it is better than nothing.

My insurance will be changing in january, and my deductibles are going to be high enough that all drs visits, testing, and medicines will be paid for out of pocket. I work, am not on disability, and my job does not provide insurance so I have a plan through the government marketplace. It was fine for last year, because I was single and made little enough to get subsidies. But now that I am married, our income level is too high to qualify for subsidies- but the only plans we can even begin to afford are the ones with deductibles so high it is like we still don't have insurance.

At my last visit with the pain dr, I explained this to him and asked if he would be willing to see me less often & if it would be possible to back off on the testing. His answer was no, and I left with a printout of names of other area pain drs. Now I'm left to find a new dr, when essentially my time of having insurance pay for anything is ending.

So I'm back to being frustrated and depressed. Is anyone having good experiences with pain management, or is this pretty much normal? What are you doing for health insurance and being able to pay for everything? If you are on tramadol- what dose does your dr allow you to have? Any advice on finding a new dr- or what i'm supposed to do now?

Hi . I am very sorry you are having such a difficult time . My neurologist takes care of all my pain related meds and I have no problems at all. All the best
HUGGGGGGGGGS
Suzie

I only allowed myself one dose of 50mg tramadol at night if needed because I have a 14 yr old and 16 yr old. Need to be alert for them and cannot use any pain medication like that while working. Frustrated because nothing truley working. Never went to pain management Dr but I know what you are saying does happen. I have recently gone to holistic Dr who is a medical Dr who focusses on using natural supplements and does order blood work . focus to help your body repair itself naturally. Just day one of supplements. There are natural supplements that are supposed to reduce pain with little side effects. I know pain is real and disabeling. For me the pain is terrible but fatigue is interfering with me functioning and increased depression. These type of fibromyalgia and holistic Dr don’t accept insurance so I have to pay out of pocket and pray for some reimbursement from insurance. I avoid pain medication because narcotic pain meds often require higher and higher doses after a while because your body gets used to them. Managing to treat your symptoms is stressful and stress makes fibro worse! Some theories site stress as a trigger/ cause of this illness. I like to be in control so doing supplements and relaxation techniques as well as acupuncture. There is no easy answer and no perfect treatment but try not to let yourself stress too much it will make everything worse.

Hi, I’m truly sorry to hear of your difficulties with pain management. The new restrictions surrounding Tramadol and other pain relievers in this class can present challenges such as these to those who are in chronic pain. I don’t know I have the answer for your dilemna, but there are many here who are successfully developing their own coping strategies in addition to their medication regimens. Stress management and sleep maintenance are vital to our foundations for coping. I personally have found mindfulness/relaxation techniques and gentle exercise such as aquatherapy have also been especially helpful in managing my pain alongside my medications. Have you considered any of these for your management plan? There are also several FDA approved medications for Fibro such as Savella and Cymbalta you may want to consider discussing with your primary dr. It takes time to find what works and each of us are unique. I do believe, though, we all have one thing in common, the need to engage personal coping strategies and a whole-body approach. Hopefully others will also share experiences and offer support as well. I wish you the best in finding relief.

Hugs,

Laurie