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Chandra0915 09-10-2015 10:28 AM

in pain & hate my life
I had surgery back in 2009 to remove 75% of my liver. I wonít get into the details as to why, but since then I have had increasing pain (lower right abdomen near end of incision scar). I also have Fibromyalgia. In 2011, I tried Lyrica, Neurontin and Cymbalta, but the side effects were intolerable. I used to get Acupuncture, which seemed to help, but my insurance no longer covers it and I canít afford it :(

So, my doctor gave me Hydrocodone 5/325 (4 pills/day). I was doing just fine, but now my doctor says narcotics are not an acceptable way to treat Fibromyalgia & Chronic pain. She took me off the pain meds April of this year and my life has been miserable ever since. I was on the same dose for 4 years and they worked, so I just donít understand what the big deal is. I then saw a different doctor and she referred me to a surgeon who ran a CT scan and said there is nothing wrong, itís probably scar tissue which canít be treated. Then, he referred me to a pain management clinic. I had a couple injections, but nothing has helped. After that they told me there was nothing they could do for me.

Right now, Iím so tired of being in pain and it seems like none of the doctors seem to understand or care that my quality of life has gone down the tubes. I take OTC meds (Ibuprofen or Tylenol), but theyíre not very effective. I used to work full time, but now I struggle to get through each day. After work I go home and just want to lie down. My boyfriend and I are taking a week-long vacation Oct. 10th and usually we do a lot of hiking & sight-seeing. But, with how I feel right now, Iím not even looking forward to it. I'm just at a loss for how to get my life back.

tortoisegirl 09-12-2015 10:28 AM

Re: in pain & hate my life
Hang in there! It sounds like you need to try another pain specialist. It can take a lot of trial and error to find a doctor who is a good fit (4 tries for me), then more to find effective treatments. They are cracking down on the long term use of opioid medications for non-cancer pain, even in patients who have tried and failed years of treatments and who respond well to them. Most literature unfortunately says opioids are ineffective for fibro. Best wishes.

BB07 09-15-2015 10:11 PM

Re: in pain & hate my life

I really empathize with you. To suffer with constant pain, that does not respond to traditional otc pain/anti-inflam meds; is really a travesty. Opiate/opioid pain medication IS what is helping many folks, including myself.

Trust me when tell you no matter what you may read in the media(pure bs, mostly)there are many pmr SPECIALIST's that know, that these medications, when used responsibly, are improving people that are affected, by helping relieve the suffering.

I personally am a ball of useless s%## without them-There are plenty of good doctors who recognize this. You may have heard of a lot of pm practices cutting people's meds, some may be for good reasons-but too many, "just because", and have turned there practices into cookie cutter type treatment for all patients.(ie dea,etc)

This is not practicing medicine, when a certain dose has been established for all.

It is wrong.

I am blessed to be getting the proper treatments and medication, so I can participate in life-I may not be able to hike mountains or many of the physical things I used to enjoy-but at least I am not suffering needlessly.

Don't give up-there are so many good doctors like mine, who really care about each of his patients, has a well run offices,does not put up with any shady patients-if you are there simply to see what narcotics you can get out of him-its not going to happen-this doctor puts up with none of that, if you know what I mean.

If you have a serious problem that causes chronic pain, this man is a wealth of knowledge, experience, and tremendous resources to help you improve the quality of your life-and for this, I am grateful.

There are many like that, you just have to be diligent in your search, and ignore any negativity you may here about true pain management.

It is not true that only cancer patients qualify for narcotic pain medications-if you think about just how ludicrous that sounds-because they are dying, these patients then and only qualify????

Its about living, and the quality of your life, despite a life long chronic pain situation, to lessen the suffering is the humane thing to do.

Good luck.

Chandra0915 09-18-2015 10:01 AM

Re: in pain & hate my life
I found another pain management clinic about an hour away from me. The doctor believes in treating pain at the source rather than using meds to cover it up. So, he has me doing physical therapy twice/week since Aug 4th (Myofascial Release). I admit it has helped a little. I have a follow-up with him 9/30 to see how I'm doing. I want to ask him for something stronger than OTC drugs because taking them all the time can't be healthy, can it? But, I'm scared because I don't want to be labeled a "pill-seeker." How do I bring up the subject?

cocoa100 09-18-2015 12:30 PM

Re: in pain & hate my life
tell the truth let him know the therapy helps somewhat ,how much otc you are taking and that you are worried about the amount of otc you take. ask if there something else you can do but do not ask for any thing by name let him make the suggestion.
good luck

BB07 09-18-2015 01:17 PM

Re: in pain & hate my life
It is good the new doc is implementing the PT; and a normal part of pm; especially in the beginning of treatment. You say the doc believes in treating the pain(chronic) at it's source rather than use meds to cover it up-well not to sound belligerent; but by the time you are referred to a specialist for the treatment of chronic pain, the "source" has usually already been determined, ie failed surgeries ect, and does not respond to traditional treatments, such as PT, otc pain relievers and anti-inflammatories.

For example, after my accident where I sustained multiple fx's, sprains and strains, soft tissue injuries, head injuries-I underwent multiple surgeries, which were all considered successful, underwent intensive rehabilitation(while doing rehab the strongest pain med I was given was Percocet 5/500 and the occ. dilaudid or morphine inj, and the pain was brutal, and you were expected to work through, deal with it, and that with time, it would get better)-but in my case, it never did, I was left with terrible pain, which never alleviated, was referred to a PM Specialists with a dx of Intractable Pain, S/P Traumatic Injuries(the source of my pain).

The Pm doc didn't start me on any narcotic at first, he tried steroid/esi inj's and nerve blocks, and I got minimal relief-but I was in so much pain I was willing to try anything, and I did.

You ask about asking for something stronger-your part of this is to be willing to do anything suggested to alleviate the pain, and to report when it is not helping at all, helping a little, or making it worse-you get the idea.

That s how you bring up the subject-by reporting how its helping, or not. How your activities of daily living are being affected. You don't want to say I need something stronger so I can plant trees in my front yard or anything like that, its called pain management for a reason. Make sure your goals are not unreasonable, 50% relief is considered very successful pm. Too many folks make the mistake of thinking they deserve "X" amount of pain meds so they can pull that double shift, etc.

In order for pm to work; most of the time, drastic changes must be made-you may not be able to do a lot of the things, physically, that you would like to do. I was unable to return to my job and had to go on permanent total disability. I had no choice at all, and I was financially devastated.

None of this(pm)is easy, I wish you much luck on your journey-and never give up-you have to maintain a positive attitude(much easier said than done, LOL)-and try to count your blessings, there is always some else who has it much worse.

Whoopee 09-18-2015 03:14 PM

Re: in pain & hate my life
[QUOTE=Chandra0915;5382532]but now my doctor says narcotics are not an acceptable way to treat Chronic pain.

Then, he referred me to a pain management clinic. I had a couple injections, but nothing has helped. After that they told me there was nothing they could do for me.[/QUOTE]

Say what? That's exactly why I go to a PM doc! Personally, I was told many years ago that I would , in fact, be on narcotics probably for the rest of my life. They are (long-acting meds) meant for just that purpose. Also, I have found it's not too unusual to have a new PM office start with injections and the like before moving on to the meds. I see it as a "rite of passage" as I've told the past two docs they did nothing for me and even hurt. However, I was "game" if they really thought it would help.

Hang in there!

BB07 09-18-2015 06:58 PM

Re: in pain & hate my life
I noticed that your dates just don't add up????

You have this new doc that has had you on pt since 8/4??

Your dates and what you say just don't co-incide.....

Chandra0915 09-21-2015 07:08 AM

Re: in pain & hate my life
I really appreciate all of your comments/feedback. It helps to know there are others out there who have gone through these pain management clinics and get advice on what to expect.

BB07 - I'm confused...what do you mean my dates don't add up? With this 2nd clinic I'm working with, I have been in physical therapy since 8/04/15 and meet again with the doctor on 9/30/15.

Kylekat 09-22-2015 02:50 PM

Re: in pain & hate my life
I'm not going to debate your dates. lol But I will say that most good Pain Management Dr.'s expect you to utilize as many modalities of treatment as you can to treat your pain. These are usually the Dr.'s who will allow the use of narcotics because they see you actually doing whatever it takes to improve your situation. And many things besides narcotics can help pain.

Fibro often doesn't respond well to Narcotics, for some it does, but as a whole it generally reacts better to Lyrica, Neuronton, Cymbalta, those types of meds. Your pain is also due to scar tissue, which is really hard to treat. It sound's like your scar tissue has healed in a way that its pulling and causing you pain. They can't treat that, because the only fix would be to re-cut you open and remove that scar tissue, but in doing so they're just creating more scar tissue. Hopefully working with the PT will help things.

You can always take a chance and ask your Dr. for meds. I wouldn't just say, "can you give me X amount of Vicodin a month." You might say, the PT is helping but i'm still in quite a bit of pain that's really effecting my quality of life. I've used a few Vicodin a day before and they helped. Right now all i'm using is tylenol and ibuprofen and they just don't do anything, could you give me a few Vicoden a day so that I can get back to living my life without this constant pain? Something like that. You ask without just directly asking.

I hope it works out for you and the PT and such works.

Oh and just an FYI there are no laws saying that Pain Meds should only be used for someone said Cancer Patients, actually it would be Terminal Patients. Chronic Pain patients can be treated with Narcotics and are treated with Narcotics all over the place, but the Dr.'s who used to cut corners and do things "off the books" or without quite the right approvals and paperwork, who now have a lot more paperwork and tracking of meds to do, and DEA monitoring have decided it's just to much to deal with so they stopped. Personally I think that's a good thing. Those types of Dr.'s shouldn't be handing out these types of strong medications.

BB07 09-27-2015 08:51 PM

Re: in pain & hate my life
your first post 9/10-you don't mention any pt only that hydro was d/c, in April, and you were sent to a surgeon, who sent you to a pm doc wjo gave you some inj ' and told you there was nothing more they could do to help you-you say you struggle to work and go home to rest-then you mention a trip you are not looking forward to due to pain.

then you post on 9/18 you've found a new doc who tells you he treats source of pain, and only an hour away and has you on pt since 8/4-that is why I was confused.......; )

But I do hope you find relief.

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