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pain management help
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lorigibs40734 posted:
I've been in pain for about 6 years now. It started out with carpal tunnel,
and pinched ulnar nerve and progressed to several pinched nerves, elbow and
neck, degenerate disc disease, migraine headaches, herniated discs,
thoracic outlet syndrome, and sciatica. And now I have COPD, and recently,
they found a small, 4 centimeter cyst on one of my ovaries. I was seeing
an excellent pm doctor and I thought FINALLY someone to actually HELP me! I
was being prescribed hydrocodone 10/500 3x daily and morphine 15 mg x1
daily. I've had all the steroid shots, have tried pt 3 separate times, 1 was
w/c and was 3x wk for 12 weeks, the last two was 2-3 x wk for 80 visits
each, I have every brace Wal Mart has, use, or used a TENS unit, it recently
died on me, (it helped only while it was on but I hat that 30 minutes of
actual relief) and I've used all the topical and pain patches known to man,
well, expect the Morphine patches. I've tried all of the NSAID's, every
muscle relaxer made (except for SOMA which no one ever prescribed due to
it being very addictive). I was on Lyrica for 2 years ( worker's comp) and
now am on a low dose of Neurontin, 300 mg x3 daily. I've went through three
heating pads as ice just tends to make me hurt more. I was hospitalized once
with "A fib" due to being in so much pain. I had surgery on my carpal
tunnel. I saw a chiropractor until my then orthopedic doctor told me to
never, ever go back. I got really bad migraines after each visit and he told
me that Chiropractors would, sometimes, hurt more then it helped. I refuse to see one now.
I've consulted with three neurosurgeons. One did the carpal tunnel release, the
other two were concerning my herniated discs. Both refused to do surgery on
my back.
It took me forever to find an actual PM doctor to treat me appropriately and
I loved him. He took the time to answer all my questions and didn't treat me
like a "druggie". He wasn't just in and out of the room, he actually talked
to me for ever how long I needed him to, going over my meds, suggesting new
exercises for me to try, (I still do my stretches and exercises I learned in PT)
and answering any and all questions I had. However,
due to Kentucky passing House Bill 1, the pain clinic closed, which made me
really sad and increased my anxiety. It took me 4 1/2 years to find a doctor
that would help me and now I was going to have to start all over.
My regular gp wouldn't prescribe me anything, even though I gave them a two
month notice about my pain clinic closing, and I was without my pain meds
for 2 weeks, waiting to get into another pain clinic. The doctor there
started me back at the bottom, even though I had all my records from my
previous clinic and the MRI showing herniated discs, EMG's showing the
pinched nerves. She prescribed, I guess you could say 1/4 of what I was
taking, Hydrocodone 5/500 x2 daily that's it, nothing else. She asked the
appropriate questions but when I answered her, she just rolled her eyes. For
example, she asked if I'd seen a neurosurgeon and told her I had. One about
4 years ago, in 2009 who did the carpal tunnel release, and another
two, from the same office, one in 2010 and again in December 2011. They told me that
surgery wasn't an option as my disc herniation was chronic and surgery would
have to be repeated over and over. Didn't see the sense in surgery due to
that and told me I'd more then likely be on pain meds for the rest of my
life. I was then 41, so that wasn't good news to me. I told her that and she
rolled her eyes at me!! She asked about my last PM doctor. He was great, I
couldn't sing his praises enough. He had told me that if this last epidural
shot didn't help, (none of the shots did) that I'd probably need a
morphine pump and an internal simulator. I got the eye roll again. I HATE
getting the eye roll from my kids and getting it from a doctor, one who
specializes in pain management, just pushed my buttons! Needless to say, the
visit didn't go well and I don't think I'll be returning to that particular
practice, especially since she's the only doctor there.
I'm at my wits end here. It's bad enough that I'm in pain constantly.
Nothing I've tried over the years has actually given me a pain free day. Not even close.
I had to stop working, and I loved my job and am not on SSDI. I'd much rather be able to work
as the money was great, but I'm unable to work now as sometimes I can't even get out of the
stupid bed!!The meds made it more tolerable, so I could actually clean my house, cook for my
family, go to the darned grocery store. Now I'm back at square one, lying in
bed, or sitting on the couch crying because the pain is just too much,
wishing (sometimes) that I'd just stop breathing and die so I wouldn't have
to put up with all this crap anymore. My current GP isn't any help at all
and I'm in the process of changing doctors. I'd heard great things about him
from several different people, but thus far, I haven't seen a willingness to
help me. I live in Southeast Kentucky and, while doctors office's are
everywhere, I'm not sure where to go to get the help I need.
Dealing with chronic pain is bad enough as it is. A pain patient shouldn't
have to fight their own physician to get even adequate care.
Is it really this hard to get proper care, or is it just where I live,
Kentucky?
I need some much needed advice. I can't turn to my family because they just
don't understand, having never dealt with chronic pain. My immediate family,
my husband, my children, they are great. They shoulder much of the house
work, my oldest daughter cooks for everyone. I can bitch and moan to my
husband, but I don't want my kids to see me at my worst (wishing for death).
I'm sick and tired of saying "I'm fine" when my family, friends, ask how I'm
doing. I'm not fine, not even close to fine but I can't say what's really on
my mind because they just don't get it!
Should I cancel my next PM appointment and put my care in the hands of my
current GP, who has proven that she's not going to help me, or the one I'm
thinking of changing to, and pray he'll actually live up to the excellent gp
I've heard he was but have yet to see, or look for someone else?? Should I
find my own Pain management specialist? Is that even allowed?? I feel like
I'm stuck and I don't know where to turn to next...
Sorry for the ramblings but I do, sincerely, need some helpful advice. I feel like
I'm going crazy, that the pain is literally making me crazy and I just don't know
what to do...
Lori
Reply
 
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dfromspencer responded:
Hi, Lori

I am so sorry you are going thru this! No one should have to suffer like that! Unfortunately, this is happening more and more. I once heard of someone going to the emergency room to get the relief they needed. You could try that? And while you are there, ask them for some help in finding a P.M. that WILL take your case. I wish i knew all the answers, but i don't.

Good luck! I hope you find one, and soon!!!

Dennis
 
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ctbeth responded:
Hi Lori,

Wow, I'm really sorry about what you're living with right now.

I do wish to ask you to explain something:

"w/c and was 3x wk for 12 weeks, the last two was 2-3 x wk for 80 visits each,".

I just don't understand what you're saying. I really do not understand the 80 visits.

Perhaps you were started on a lower dose than before because you hadn't been taking the opioid for a while so your tolerance may have, at least theoretically, decreased.

I'm not making an excuse for the MD, or disagreeing with you, just thinking of possible options, okay.

Next thought is can your primary care MD can refer you to another pain management MD.

I am a bit perplexed about the recommendation for an implanted device (spinal cord stimulator or morphine pump), as these modalities are not commonly recommended until one has been on pain meds for a while and not getting adequate relief, or have kind-of maxed out on dosage and have become quite tolerant.

After the injections, that have not worked for you so there'd be NO reason to repeat them, there are other less-invasive treatments than surgically implanted treatments.

Have you had an MRI recently? If not perhaps your condition has worsened since the last studies.

I'd like to make a suggestion: How about seeing another surgeon? I am not an MD, I am an RN and have had many corrective surgeries due to, initially, a congenital neuro-structural problem, then post trauma after a car accident. I've had a couple of spinal fusions and other not-so-fun surgeries of which I have no need to expand upon right now.

Why have two surgeons refused to surgically correct your discs? This really doesn't make sense.

Is there any health risk that would cause you danger with anaesthesia, perhaps?

You did mention atrial fibrillation. Have you an underlying heart condition?

I am also wondering if I have this right, so please correct me- there is a lot of info in your posting:

Is there a reason that it took four and a half years to find an MD?

Did you not like the MDs and it took this much time to find one that that you felt comfortable with, or was your pain less severe and you didn't need treatment?

There are not Morphine patches. Are you, perhaps, thinking of Duragesic/ Fentanyl patches? This is the strongest opioid med available and there is a gentleman who posts on this site who was able to add many (I think nine) years to his career with this med as it controlled his pain that much.

I do hope he'll respond as he has good info that will probably be of use to you.

I was also using the Duragesic patches, but have a spinal cord stimulator now and do not require that level of analgesia.

I do hope that you'll write again, and wish you good fortune in this horrible pain-life horror.

Rest assured that you have found an on-line community of persons who really understand what you're experiencing.

Bye for now, Lori,

CTB
 
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lorigibs40734 replied to ctbeth's response:
HI Dennis and Beth, thank you for replying and the best wishes.
I have gone to the ER a few times to get some relief but I don't want to make a habit of it or they won't treat me appropriately. They kind of look at that with their version of the hairy eyeball. It wouldn't matter that I could barely walk in there, in tears and nauseous from the pain. They'd just see repeat ER visits and send me on my way. I try not to go unless I absolutely have to. Beth, the "w/c and was 3x wk for 12 weeks, the last two was 2-3 x wk for 80 visits each,", means physical therapy.. I had a workers comp case, for the carpal tunnel and pinched ulnar nerve, the other two pt was for my back and pinched nerves. I still do the exercises and stretches I was taught, though I get no relief from them.
I don't know why the last pm doctor suggested the morphine pump and the internal simulator. I didn't like it when he suggested it, especially the pain pump. What if, down the road, something happens, I get cancer or something?? My niece had one of those morphine pumps and she died of colon cancer about 7 years ago.
My gp sent me to see the surgeons about my back because she thought surgery might be an option. Both of them told me it wouldn't help because the disc herniation's are a chronic thing, they would keep doing it, more would keep herniating and the surgery would have to be repeated. The last one I saw said if I wanted it done, they would be he wanted to be clear that surgery would have to be repeated.
I had an episode at my old gp's office, before I switched to the one Ihave now. I felt like I was going to fall out of my chair and my chest felt funny, my head felt too heavy for my shoulders. They took me back to their triage room hooked me up to Oxygen and heart monitor and told me I was in "A fib" and called an ambulance to take me to the hospital. The doctor released me the next day, without coming in to see me. The nurse that gave me my discharge papers said that he had said I went into atrial fibrillation because I was in a lot pain. I stopped going to their office not too long after that because they had treated my then 13 year old daughter for 5 months for IBS and she had a gallbladder full of stones that was caught by an ultrasound on her second visit to her new doctor. She had her gallbladder removed shortly after her 14th birthday. Needless to say I was a bit happy with them, so I switched..
anyway, I had a heart cath done a couple years ago in Lexington. It was fine. I developed a blood clot afterwards though and was on blood thinners for 6 months. I"ve had surgeries before with no complications.
My last MRI was done October of 2011. My insurance only covers one every two years (I should have proof read before posting because I do receive SSDI and medicare).
I wish there were pain advocates around here, because I'm afraid of pushing my doctor. I don't want to end up labeled a drug seeker or something because that is not the case. If I didn't have to take medicine, I wouldn't be taking it, because I don't like to take medicine. Before 2006, when this started, I hardly ever went to doctor for anything, except my two pregnancies. Now it seems I go all the time and it's frustrating to have to start all over at the beginning. And it hurts too.
Oh, and yes they do make morphine patches, I know someone who has them, for their cancer pain.
I'm glad that I found this community to talk with. It's nice to have people to talk to that know what I'm going through. I have a terrific friend that I can email and gripe and vent to because she knows what I'm going through as she's going through the same. I don't want this pain to run my life, but so far, now anyway, it sure is...

Lori
 
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ctbeth replied to lorigibs40734's response:
You are right and I am wrong.

Indeed, morphine transdermal does exist.
 
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annette030 replied to ctbeth's response:
Hi, Beth

I looked on a couple of on line drug references and a couple of books that I have and could not find morphine transdermal, is it just not sold in the US? Where did you find it?

Take care of yourself.

Hugs, Annette
 
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ctbeth replied to annette030's response:
Hi Annette, and greetings from the Flu capital of New England,

GMTA, haha.

I did the exact thing when I read the initial post in the discussion and could not find any reference in my most-recent drug reference book and the University library site from the University where I studied and to which alum retain research rights (free, too!). Graduate Nursing students have access to the entire medical library.

The only reference is the British Pharmaceutical Reference. It referenced a Swedish site.

It does appear as if this product is in research in one Swedish research and development study.

So, while I do suspect that the originator of this discussion is referring to the Fentanyl patch, it was technically incorrect to say that it does not exist.

I also saw an Urban Dictionary reference to a "morphine patch", but this is described in this reference as an erroneous reference also to the fentanyl patch.

Apparently, on the street, fentanyl patches have been incorrectly sold and bought as "morphine patches".

Do let me know if you'd like me to locate the site again and I'll post the link.

I hope that you're well and that the flu has not visited your family.

Hugs,

CTB
 
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ctbeth replied to lorigibs40734's response:
Hi Lori,

Thank you for clarifying. I don't know why I didn't catch that w/c is worker's comp.

Your history and treatments sure indicate that you require pain management.

When a level of disc is fused, there is no more disc at that level, so there is no disc to herniate, BUT the physics of level(s) being fused put an additional load on the disc above, and potentially below, depending upon where the fusion is performed.

Surgeons make this clear to potential fusion candidates, but each particular situation is different and your syndrome may make your anatomy more prone to this.

I have both lumbar and cervical multi-level fusions, but not due to degenerative disc syndrome, but multi trauma. While the disc superior to my lumbar fusion exhibits herniation, it doesn't hurt much and I is not near-to a condition that I would consider additional fusing.

Of course, everyone's situation is different, but pain is pain and the kind of pain you're experiencing needs to be treated.

The usual manner that chronic (non-cancer) pain is to treat with a long-acting opiate on a regularly-scheduled basis and a short-acting opiate for breakthrough pain. The short-acting med is usually prescribed to be taken on an as-need basis (PRN).

I agree that none of us want to take pain medicine; we take it because we need pain management to function. Yeah, it's not a fun way to live, is it?

If you can get a bit of relief from a TENS unit, can you get another unit, or have your unit repaired? It's not THE answer for you, but 1/2 hr relief is better than nothing, right?

So, you've had lots of PT with no real gains.

You have had enough ESI with no gain at all.

The OTC stuff doesn't do much to help you.

Ordinarily, the next plan would be long acting opiate with short acting for breakthrough(as/ if needed).

Again, jumping from hydrocodone (short acting) TID and 15 mg morphine (? short acting, or MS Contin?) to an implanted neuro-modulation unit (SCS) or implanted morphine pump seems as if a whole-next step of pain management treatment has not been discussed or attempted for you.

Regarding "topical": Have you used fentanyl (Duragesic is a brand name) patch? This is a long-acting med that has helped many of us in chronic pain reduce the pain to tolerable levels.

They are commonly worn for forty-eight hours. The manufacturers direct each patch to be worn for seventy-two hours, but subsequent studies indicate that blood levels significantly decrease after forty-eight, so many MDs now order them with q-forty-eight hour changes.

Thank you for explaining the A-fib and cardiac situation. That your Cardiac cath indicates that you do not have anything negative going on there is good for you. You have had surgery since, so you are not being denied treatment due to a precarious cardiology.

I feel so bad for you, as there is still so much that you can try to help your pain, but you need to find an MD to treat you.

Yes, the ER can be a horrible experience, but there could be a chance that they can refer you to a pain management MD.

Really, Lori, I have read your posts over-and-over trying to think of something, anything.

Perhaps you can (I have no right to use the word, "should") have another visit with your current pain management MD. Maybe the first meeting was an isolated incident and she'll be different next time.

Do you mind telling when is your next appt?

Can you call her office and ask for an earlier appt or to be on the list to call if anyone else cancels an appt?

Please be firm with her and tell her what you've told us- maybe even print out the things that you've written to us.

I keep you in my thoughts and hope that you get the help you deserve and need.

CTB
 
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lorigibs40734 replied to ctbeth's response:
Hi Beth,
The topical patches given to me were Lidocaine and Flexor. I had never heard of the morphine, or fentanyl, patches until a couple of years ago. But no, no one's ever mentioned me trying those, and I'd be hesitant even if they had.
I've heard from several people who see the PM doctor that I went to. Their experiences are worse then mine was, and I'm suppose to go back on the 16th. I'm debating with myself on whether or not I should return but I can't really see as I have a choice in it. And this is why I wish there were pain advocates in the area. It seems like my own hands are tied when it comes to the treatment I'm getting now which leads me feeling frustrated along with being in pain. When I get frustrated, I can't explain things clearly, or I come off too strong as the more frustrated I get, the angrier I get, if that makes any sense. *sighs*
I'm afraid, absolutely terrified, of getting black listed, and I've heard that this new doctor doesn't hesitate to do so. I've done everything right: I've done the physical therapy, had the shots, the carpal tunnel release, seen the surgeons. I've had the tests, the x rays, the MRI's, the EMG's. I've asked questions about all of the medications they've ever put me on, and I've done everything they've asked of me. All I'm asking is to be treated fairly. I just want to be able to clean my own damned house, go to the grocery store, live my life...
I'm only 42... it shouldn't be this hard...

Lori
 
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dfromspencer replied to lorigibs40734's response:
Hi, Lori

I get so mad when i hear stories like yours! I guess i should be glad to have the V.A. on my side? The last time i was at the Sioux Falls facillity, i overheard nurses talking about P.M. Dr.'s being so afraid of being labeled as "Pill Pushers". The P.M. Dr.'s should be more worried about their patients than names. The politicians are responsible for that. From local, to congress they try to shame both the Dr.'s and their patients. They label us as drug seekers, not patients. If only more of them had a serious chronic pain issue, we might get that changed? But for now, we are the ones that suffer.

I hope you don't mind, but i have to go with what Beth said, you should deffinately go see that Dr. again! This time, try to retain your cool, and explain to them exactly what you have explained to us. Hopefully, he/she will see that you are legitimately seeking relief from pain, and not just looking for drugs? Its worth a shot, right? I hope they get it, for your sake!!!

Best of luck to you!!!

Dennis

P.S. I just had another cervical fusion done, see my post here. Under "Post surgery update".
 
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peskypain replied to lorigibs40734's response:
Hi Lori...

I think the confusion came from if you look at your first post, you wrote this:
"and I've used all the topical and pain patches known to man,
well, expect the Morphine patches"


So....this is why a few people were scrambling trying to figure out what they were as we'd never heard of them...LOL

From what you wrote, it sounds like the first pain clinic you went to wasn't totally on the up and up and got shut down because obviously there are other PMs in Kentucky and the laws still allow for people to be treated, it's just the numbers of pain meds for a 30 day prescription has changed and some other things....So, not saying that you were involved with anything of course....but for them to get shut down doesn't say much...

And then unfortunately your comments to the new PM that your old Dr. told you that you will "be on pain meds the rest of your life".....I would think would cause most any Dr. to roll their eyes at such a statement as no one can predict the future and what will happen and it make it "sound" like that's all you wanted from them and resigned yourself that nothing else will help besides pain meds...

Again...just sharing what it looks like from the Drs. point of view...And then lastly...when you praised the other PM who I'm sure this Dr. has read about losing his license and being shut down....this was also raising some red flags....

I actually think you should look for another PM as I don't think your Primary is going to be able to treat you for your chronic pain as with almost every state, new regulations are coming around in that all non PM Drs. will have to undergo more training and certification if they are treating someone with controlled substances for more than 3 months (this goes from an acute situation to chronic/long term).....

But I would not sever ties with the PM you have now until you find a new one. And because the spine does change, you may need to get another MRI updated this year and meet with a good Board Certified Neurosurgeon to see if surgery is an option to try and help things.

As well as any new Dr. is going to want to do things their way and even with all your medical records....a new Dr. is not just going to say, "ok...we won't try anything else and here is your prescriptions for opiates"....

I know it's hard....we can all empathize what it's like as many of us have been at this for years as well and I had some terrible Drs. along the way but thankfully kept looking until I found the ones I have now. I've also been through 3, two-level, cervical fusion to really shore up my neck and fix the herniations at the time...as well as for the last 6 years...I STILL do injections and steroid treatments a few times a year, exercise, physical therappy, TENS unit, aqua therapy, yoga/stretching, biofeedback, acupuncture, massage, ice, heat, RFAs, etc....

It's not like trying them and then done....I keep everything as part of my treatment and use as many modalities as I can daily/weekly/monthly.....

I do wish you luck...
 
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ctbeth replied to lorigibs40734's response:
Hi Lori,

Yes, life should not be this hard.

I have heard a few people say negative things about the pain management MD and group that I have been with for over-five years. I am glad that I didn't listen and made my own decision. I beseech you to try talking to her again.

Does anyone else think that Lori's printing out her first post to review with her PM may be beneficial?

It really tells a lot and shows that you have been through so much and have been compliant with anything that you thought could give you relief.

There are two kinds of topicals: the two prescriptions (Flector and Lidocaine) are designed to treat the area by direct contact of the skin to the chemicals in the patch.

The second kind (fentanyl, butrans) are designed for systemic absorption. The chemical(s) are absorbed through the skin and the med circulated through the bloodstream.

Why would you not want to try fentanyl/ Duragesic? The patches come on may different strengths, so your MD could try a low dose and see how you like the relief.

Sadly, the kind of pain that you, and many of us, experience, can be best treated with opioid. Hydrocodone is an opioid as is fentanyl. If used as prescribed, they are not dangerous and could give you the relief that will make your life much improved over what you're living right now.

If you've done everything "right" and continue to do so, there would be no reason that this MD would "black list" you. She has to have patients to treat to stay in business. The reasons that some have been dismissed (black listed) may be that they have not taken their meds properly. If you respect your pain meds as being able to help you, but can harm you if taken wrong, then you're on the right path.

Please do not be of the mind set that you do not want to try fentanyl, or other treatments or meds that could give you great relief.

As another person said, please do not dismiss this MD until you have a new one. This could leave you with no treatment options at all.

I had thought that your next appt is 16 Jan, but I cannot find that date when re-reading your posts. Maybe I'm thinking of someone else.

When will you see her again? Remember, she's also had time to review your history and, having met you and assessed you herself, she may be more helpful.

I hope that you'll give her another chance. Maybe she was having a bad day. wouldn't it be nice if things work out with her and you don't have to worry about looking for another PM doctor?

Keep in touch, okay?

Hang in there,

Love,

Bet
 
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dfromspencer replied to ctbeth's response:
Yes, Beth, I whole heartedly agree with you! Lori should deffinately print that out, and take it with, to her next appointment!!! Once her Dr. see's that, how could they not see how she truely is, wanting nothing but relief?

I say, GO FOR IT, LORI!!! What have you got to lose? A piece of paper? A little printer ink? Maybe 2 cents worth of electricity? I honestly believe you should try everything possible. Do whatever you have to, to open that Dr.'s eye's.

We are all right behind you, keep your chin up!!!

Dennis
 
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lorigibs40734 replied to peskypain's response:
Hi Everyone,

I think I should clarify something. The PM doctor that I was going to, the one that I loved, was very strict. You had to have the proper tests done before they'd treat you, MRI's, x rays, etc, a urine test at every visit, etc..The only reason they closed the PM clinic, the building is not owned by him, and according to a law in the new bill passed, it has to be owned by an MD not a corporation, or something like that. He's still practicing, still seeing patients, just not pain patients. I tried to get him to take me as a regular patient but since I got the letter regarding the bill and the pain management clinic closing, he can't see me as a patient, or so they told me. It wasn't one of those where your insurance was turned down for cash places, I wouldn't go to one of those...
I do try to understand it from a doctor's view point. I know there are people out there that abuse their medication. I'm really careful about how I take my meds as you hear such horror stories about people becoming addicted to them, I'm afraid of taking anything stronger then what I have been taking. I hate taking medication period, so I'm very careful with it.
And I'll print out what I've written, and take it with me. I don't think it will help any, but I'll take it with me tomorrow.
Fingers crossed...

Lori
 
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ctbeth replied to lorigibs40734's response:
Hi Lori,

I wish you the best for your appt tomorrow

Please let us know ho wit goes.

I'll be thinking of you, for certain.

<3
Beth


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