My experience with Pain management/Fibro and Spine issues-Docs do not understand! I am...

I need to write this to give you all a warning about Pain managent doctors who do NOT understand what happens when you have RNY and absorption issues.

First of all, trying to find a doctor who is sympathetic to you with Fibro is tough.  I had one pain management Doctor tell me he didn't believe in Fibro, just another disease doctors lable you with when they don't know what is wrong with you.  So, I went to another one. This jerk, even when I told him about my surgery and that sometimes I couldn't last six hours with pain meds, instead of letting me taking them sooner he would up the dose. So, after 6 months of seeing him he upped my meds to 15 mg of oxcontin every six hours and a 75mcg fentanly patch.  Then, he was giving me epidurals in my back for numerous spine issues.

In Nov, I had to go to the ER after one of his shots.  I get a letter that he let dismissed me because I went to the ER.  I called before I went, and at the ER they told me the epidural inflamed a bulging disk in my thoracic spine.

So on Dec 13, I took the patch off and threw the pain pills away.  Guess what? After three years of being on some kind of pain medication I went through horrible withdrawals for a month.  I can not begin to tell you what I went through alone with no one to turn to.  So, I am writing this to warn you.

Bella Lunacy

Sorry you had such a difficult time. Sounds like you were dealing with someone who wasn't very ethical to begin with. You should always be free to go to the ER, he may have thought you were trying to get more pain meds. I have to sign a contract with my doc that I won't get pain meds from anyone but him, however that doesn't appy to emergency treatment unless I was going in every week or something with pain and trying to get more drugs. My state has very specific rules dealing with narcotic pain treatment.

Now as for your just stopping your pain meds without medical help and supervision that was just plain stupidity, you are very lucky you didn't die. You should just never, ever just quit cold turkey and as a pain patient you must have known that! Both drugs you were on are very strong narcotics, I know because I use them myself. I was switched to a different drug at one time and I thought I was going to die because it was evidently a much lower dose drug. i went thru a week of horrid with drawls between change back to my normal dose. Something I would never have done if I had known it was a lower dose drug. What you should have done was go back to the ER and tell them what you had done and they could have helped you and given you a plan to lower the dose slowly and with less painful results. So should this situation happen again I would suggest you reach out to the ER or even a primary care doc should be able to help you or refer you to help .

I have to say not all pain management docs are that way but they are very strict and do not play games when it comes to drug seekers or people who don't follow their strict protocol. I have a wonderful doc and over the years we have worked very well together and while i still have some pain it is tolerable for the most part.

I guess this is a good way to bring up the subject of making sure you find a doc who is professional and empathetic to you. Someone who specializes in fibro or arthritis type treatment is vital. We have to be our own advocates and keep pushing until we get quality care that we deserve. We also have to be responsible and reliable patients. Medical care always works best when we have mutual respect and objectives.

Yes, it is a great dialogue, I agree.  I did not go for pain meds and never asked for anything.  My doctor also knew that I just filled a monthly prescription two days prior to the ER visit.  My PC told me that her opinion was that this doctor knew he couldn't help me after the epidurals shots didn't work and didn't want to be bothered with me any longer.

Yes, it was irresponsible to do what I did regarding stopping pain meds suddenly.  However, I was so angry and disgusted that after almost four years of going to pain management doctors I couldn't get anyone to help me and this last experience made me want to suffer the pain instead of going through everything with Pain management.  I am tired of being looked at a "pill seeking" person instead of a genuine patient looking for help and compassion.

My issues are well documented, and many surgies.  So, Doctors know I am not faking or there for anything else but help and some relief to have SOME kind of quality of life.

I am in Ohio, and maybe someday I can work myself up to going to another PM doctor but the way I feel now, it won't be soon even though I am in constant pain.

The way I feel now, I feel they just look at you as a person seeking drugs.  If that was the case, I think I would buy them on the street than put myself through what you have to go through to go to a pain management doctor.  Constant drug tests, signing contracts and now afraid to go to the ER?  I honestly feel I have no one to go to.

Thanks for responding, you helped put things into perspective

Bella Lunacy

I do hope you are able to find someone to help you. I truly know what pain feels like on a daily basis I have a spinal fracture that didn't heal correctly between my shoulder blades so is constantly pinched, I have discs that are compressed all up and down my spine, I have lower back pain from who knows what, I have severe arthritis in my hands and feet to where my toes actually turn sideways, I had a broken leg that hurts where the pins and screws are, I have a shoulder that is partially frozen AND last but hardly least the fibro to blend them all together with. I literally wouldn't be able to get out of bed without my pain meds and like I say I still have pain but I don't want to get to the point where there are no pain meds that work for me because I've maxed out on what they can give me so I just live at a certain level of pain. 

Is the majority of your pain in the back or is it wide spread? I have a spinal stimulator that did wonders for me but it will only work in a specific area of the spine. If the back is the main problem I can give you the name of the place I got that thru. If it is body wide tho it won't help. I really hope you are able to find someone you can work with who can bring you some relief. Good luck to you!

I have a TENS unit and though I use it, it really does not help that much.  I have pain all over, but the majority is in my spine.  I have a metal plate in my neck, arthritis in my spine, fibro, Positive ANA test for Lupus.  Bulging disks, degeneration, spinal stenosis and because the surgery is so dangerous, no spine surgeon will operate on my thoracic spine.  So, I have problems with Cervical pain, thoracic pain and a  slipped disk in my lumbar.  To quote my PCP  "your spine is a mess"..lol... Four years of physical therapy, occupational therapy, acupuncture, etc etc etc.  No help.

It seems that when my spine flares, so does the fibro.  Is that the case with you?  I literally have to push myself to even get out of a chair or walk. 

I am an extremely active person, so the mind says "yes I can" but the body says "no you can't"  sometimes very depressing.

As far as the TENS unit you really should not use that directly over the spinal canal, are you aware of that?

Thanks for responding, it really helps to talk to someone who can understand

Bella Lunacy

It's not too surprising that your fibro flares when your spine is flaring also because any stress in the body can and usually does trigger a fibro flare. Any stress even nervous stress can set off the fibro, it's an evil disease.

I was just telling hubby the same thing the other day, my mind has great plans but my body doesn't co-operate. Takes me 3 days to do something that should only take an hour for other people!

I don't have a tens unit, what I have is a spinal stimulator. It is actually attached to my spine surgically and they can set the adjustments to cover certain areas but they can't do the whole body. It did permanently get rid of my lower back pain, I don't even have to use it for that anymore. It sends an electronic signal that interfers with how the brain receives the pain signals so you don't feel the pain. You can read about it at raceagainstpain,com but sounds like you are like me and need whole body pain relief.

I have thorasic pain too from a spinal fracture that didn't heal because I didn't realize I had fractured it and like you no one would touch it because of the location. So fortunately I was able to take a month and pretty much stay in bed in one position to let it heal as best it could.

The only way I have any pain relief is my meds and like I said before I'm blessed with some very caring docs so am able to so far manage things. I walk that thin line between being able to get around some but not taking so much that I end up at 80 with resistance to all the pain meds and nothing else I can take. Nobody told me how fun life is as we age. lol Glad I could help and feel free to contact me here anytime, I'm usually on everyday.

Have you thought of going to the Mayo Clinic in Rochester MN.? They have a very good (and caring) Fibro and Chronic Fatigue program. I have both and have been extremely pleased with all of their help. They have classes on exercises, pain management, stretching, and bunches of other stuff. THEY KNOW IT IS A REAL DISEASE!

I am going to a pain doc here that definitely believes in Fibro and the first thing they did was do a genetic testing to see what meds I would respond to correctly.  He understands the malabsortion issues that I now have.  

came back that I can take all the opiods I want and they won't do any good because of genetics.  I wondered why they never worked.

So now, I'm on lose dose naltrexone which has to be compounded because it doesn't come in the "low dose" formula.  

I went through about 6 different "pain management programs" before I found this group.

Good luck

All of you speak of pain management physicians...are they Physiatrists?This not misspelled...I am not speaking of psychiatrist.

I want to be sure I have been directed to the right disciple of medicine.  I too am dealing with chronic pain issues.

Thanks for sharing.

I've been to a physiatrist and they really didn't help me. I'm currently seeing Jeremy Adler at Pacific Pain Management Consultants. He discusses everything thoroughly with me. My meds have to be compounded since my system is rearranged now. The low dose natrexelone has really helped me with the Fibromyalgia pain, now we're working on my neck and back issues.