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Soooo frustrated

NumbskullNNumbskull Posts: 1,526
edited 06/11/2012 - 8:41 AM in Chronic Pain
So, my pain management doc has said all along that he believes I have fibromyalgia, but does not like to make diagnosis. My gp does not seem to have a clue about anything, and it's been up to me to do research or ask about different tests or meds or types of specialists. She didn't even believe me when I said I was pretty sure that the protruding disc had herniated, and know the exact moment that it happened. She just kept saying well, according to your MRI, you don't have a herniated disc, just a protruding disc. That MRI was 4 months old at the time!!! After demanding to see a neurosurgeon, he agreed that I most likely did have a herniation, had my surgery, to find out that a completely different disc had herniated other than the protruding disc... Needless to say, I was more than happy to let her know, and since then she has actually been more accommodating and believing me.
She won't prescribe more than 30 oxycodone a month, which would be fine, as I try not to take them everyday anyways, but on the really bad days, which I do have quite a few, it takes until the 3rd dose before my pain levels are calmed down even close to a normal level, so the 30 tend to not last the full 30 days.
So she referred me to a physiatrist, to check out the PM's thoughts on fibro. I had an appointment with my PM last week, and told him who I was going to see. His reaction was less than encouraging, and said to be prepared that the physiatrist will likely try to push pills, as he is not a fan of more modern pain management techniques such as injections, etc.
I had my physiatrist appointment this morning, and this guy, after talking to me for about 10 minutes, doing the trigger point test, and saying, well you don't flinch, and after me saying, due to my job, I've learned not to flinch when I'm in pain, because there are times when I can't flinch or move. I clench my teeth, take deep breaths and clench my toes... Hours after him poking me, I still feel some of the points, I feel like I should have a big bruise on those spots! To sum up here, he said, so I'm not going to say either way if you have fibromyalgia or not, I will say that you have chronic pain, and should be taking at least 2 - 3 oxycodone a day, you can't be too bad as you're obviously still working (I was in uniform). Can you imagine??!!!! My whole outlook is that I want to try to take the least amount of narcotics on a daily basis that I can get away with, not take more!! I have to work and need to drive to get there, and with my work I need a clear mind. So, yes, I'm a little frustrated, and I don't know what to do now. I said ok, I know I have chronic pain (I was actually thinking, well, no 5h*t sherlock, thanks for the update!!), I know some of it is from specific injuries, but what about the pain I experience in places where I have not had any injuries? Is it neuropathic? Do I have nerve damage? I know why my hands go numb, why I get cramps in them, but what about my foot? Why does my leg hurt beyond where the pre-existing injury is, why is it a different pain, why do I get cramps in both feet? Why can such a slight touch feel like I've been hit by a concrete block? He said that he didn't have enough information on my history, and he didn't want to label me with anything, especially something that carries a stigma like fibromyalgia, then he stood up and said I wish you luck and walked out!!! What the..??!! No asking to see my med history? No offer of a follow up after he's looked at it?
As it turned out, I had an appointment with my PM this afternoon for my 2nd medial branch block, and said the appointment turned out exactly as he said it would. He just answered, "I kind of figured it would turn out that way, I'm sorry". So now, I guess it's back to my gp, who will probably take this guy's word as law, and will never get any further in the search to find answers, to understand this pain and to contain it... I can't believe this guy. He even said that I should stop taking the gabapentin and baclofen that I do take, and take more percocet!! Imagine!!
Well, I think I've got it all off my chest now, thanks for letting me vent, I am just so frustrated... and maybe a little angry, but the block injection took my mind off of some of it, lol...
APROUD CANADIANveteranButNOTa doctor, my thoughts are my own


  • I'm sorry. I hate when the medical community hasn't figured out something so just passes us off to see somebody else.

    I am not a doctor, but I have been diagnosed with arachnoiditis. Do you think you might fit that description? I HATE it when doctors just throw out fibro without really doing anything to work you up or listen. Arachnoiditis, at least my understanding, can cause pain in extremities not necessarily at the level of injury. Extreme sensitivity to touch(concrete block), temperature, cramping in feet/legs NOT from arterial disease but from pseudoclaudication(nerves in spine not getting enough blood flow due to scar tissue and can manifest by cramps in legs/feet.)

    Just a thought for you. One more, I HATE that because we try to work people automatically assume we must not hurt that bad. I hope you find some answers and some level of pain reduction.
  • I would be very flusterated too Kelly!! I am flusterated by the way my Doctors have treated me.
    Why is it so blasted hard to get answers and proper treatment??
    I was at my Ortho about my shoulder and was talking to one of his assistants about my chronic pain. The reason we were talking about it is because I need knee replacement surgery and was telling her I wanted to get my chronic pain under control before I had the surgery but the way things were going I was NEVER going to get it treateated. She said the reason for that was because I had to have narcotics to treat my pain and Doctors did not want to treat anyone with narcotics because of all the druggies out there. But what do the druggies have to do with me and my very real pain??
    I understand your flusteration Kelly but do not have an answer. All we can do is keep plugging on and keep searching. We can't give up our hope!!
    Sending a hug coz you need one. >:D<
    Patsy W :H
  • guys. Er, I'm so sorry, I can't remember your first name, maybe I should come back and hang out in chat again, it's been way too long!!! I do miss chat and think of all of you often!! Arachnoiditis... hhmmm, thanks for the info, definitely something to think and ask about. At the moment, I just don't know if I even want to ask about anything else. Sometimes I feel like my gp just thinks I'm grasping at straws, or trying to find something that's wrong with me. It's not that I'm trying to find other things, I just want to know what exactly is wrong with me!! It's not about "labels", it's knowing the answers, and finally being able to make an action plan specifically for that, in conjunction with everything else. Am I wrong to want that? I mean, I've already accepted the fact that I have chronic pain, and that I'm facing the rest of my life dealing with it, but I want to know what is causing the pain that isn't explained. I guess it's because I'm the person who needs to know how things work, why they work, and how to make it work again when it isn't, if you can't fix it completely. But right now, I'm so discouraged, I'm not even sure if I want to know anything else, and just to keep it at what I do know and forget about the rest, just to keep dealing with everything with my current treatment plan. Sorry, I guess I'm in a little bit of soul-searching mood as I was just at my ptsd support group today and I'm in that kind of frame of mind lol.
    Anyways enough rambling, I will definitely keep that in mind, thank you so much for that info!!
    Patsy, I can always count on you for your hugs, thanks!! I hope everything is going okay and things will move forward with your shoulder treatment soon!!
    I guess part of the reason for that long winded ramble, is that, is there anyone else out there that feels the same way? When do we stop searching for answers? Do we stop searching, and just accept that we have chronic pain without knowing why? I'd love to know other people's thoughts on this, and how you've dealt with it.
    Thanks so much for "listening" and putting up with my rambling!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Okay, so maybe I didn't word my post clearly. I do need help. I'm really at my wits end. Do I go back to my gp and ask for more referrals? Do I go back and ask more questions to nudge her into finding out why I have pain in areas where there shouldn't be any? Or do I just suck it up without knowing why I have this pain?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Just remember one thing it your body and pain.Myself I would ask her or him why do I have the pain there. If they can't tell you. I would be looking for some one that can. Nobody know your pain better then you. There no reason to suck it up.

    Hope to see you pain free

  • I would keep getting referrals to other Doctors and get their opinion you need to keep looking for someone to help you. I hope you can find some relief soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I absolutely agree that you should ask for more referrals because you ARE worth it and deserve to have your symptoms investigated so you can have a clear answer to your problems. Never give up trying because your pain is real and has affected your life, and it doesn't matter if you are working or not. I hope you find a specialist who will listen and do their best to help you. Take care
  • Thanks everyone, and meydey, you have no idea what your words mean, especially after having a total meltdown Sunday. I woke up with such a bad headache, on top of my normal morning pain and stiffness in my neck and back, and my leg and feet were cramping so badly. I know most of it was due to having to go to a wedding on Saturday, which meant 2 hours in the car to get there, 5 hours there and another 2 hour car ride back... So Sunday, all the housework taunted me, and I just couldn't muster the energy to do it, but it so badly needed to be done, hence the meltdown. My boyfriend found me, and ended up doing a lot of the housework that he normally doesn't do, above what he normally does.
    Anyways, I have an appointment tomorrow with my gp. We'll see how it goes, although I'm not very optimistic. I'm just so tired of having to advocate and fight for myself when I don't have the energy to do it anymore. I feel like I keep getting swept under the rug, and right now it sounds like a good place to hide out for awhile... I'm finding it so hard to maintain any positive train of thought right now, which is making me feel even worse.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • My turn.
    You are definitely worth it, you definitely need to keep pushing for answers. If Fibromyalgia is a possiblity then what about a referral to a rheumatologist as they're the experts. Have you had a complete blood work up recently to see if ANA or ESR's are eleveated as well as the usual culrpits like Ross Rive virus, mononucleosis (sic?)
    Lay it out to your doc, tell them exactly where you are at emotionally and mentally that this is dragging you down to a new low and if they don't start trying to find answers the consequences could be far reaching.
    So get a referral to a rheummy (first port of call), neurologist (nerve conduction studies), psych so they can't say it's in your head, plus they can help sort through the low moods you get from having to deal wih this crap all the time.
    That's all I have right now my happy pills are kicking in. I'll ponder on it some more.
    I joined a site called just answer where they have specialists on line to consult with you. You lay out the history and what you want to get out of this consult and a qualified doc will respond to you with his opinion on what you should do, you can reply to him as many times until you are satisfied with his opinions and suggestions and then either follow his advice or use the bits that seem most relevant to you.
    of course I did recently for my stomach problems and was told to go straigh to ER (I didn't but the options there.
    I have a cake to make i'm being paid to do, so I don't have time for dramatics
    Any that's my two cents (sorry penny's) worth.
    I hopw you find something that helps.
    Man drugs have kicked in i'm struggling to tpe anynore.
    Take care and hold onto hope with both hands and don't let go.
    you're not alone
    Khliede or bugger it can't rite myh name noew
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    :? Good luck with the new meds and tens unit! After reading this thread, I think the one Dr. didn't even have the courtesy to hand you off to the next! It seems to me like he threw your file in the shredder!
    I hope you have continued luck with your G.P. But if not, from what I've read here, your P.M. Dr. seems to take a little more interest. Maybe he could ask for referrals for you.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I am so glad and relieved that things went your way this time at this appt, and it sounds like your doctor is covering all the bases with you. Please let us know if your doctor finds out anything, and I hope it's not anything serious and that you also finally get answers to your symptoms. Take care
  • So I had my appointment today with my gp. I told her everything the physiatrist said, and she wasn't very impressed, but still has to wait for his report to come in, which is fine. I asked her when do I just give up and stop looking for answers, and she said I shouldn't. I told her again, about my headaches, which I've been telling her for over a year now, and the hyper-sensitivity to touch my head, and the stabbing pain I get in a couple of different spots during these headaches, and she said "oh, well, those are called icepick headaches" and then said something along the line of migraines, which she has never mentioned anything about it before. She increased my oxycodone prescription, and is going to get authority from our medical powers that be to prescribe me Lyrica, so I'll come off the gabapentin, and said that if that doesn't help any better, will look into an extended release narcotic, like oxycontin or along that line. She also sent a referral to a neurologist, and said hopefully he'll order nerve conduction tests to find out about the cramping, spasms and unexplained pain. She also ordered blood tests, which I had done right away, and thankfully the medic got enough of a sample before my vein collapsed, lol.
    After my appointment with her, I had to see our clinic nurse practitioner to get my depo shot. He knows all about my case, as he saw me once at the clinic, when I had gone in because my entire left side went completely numb, so he asked how everything was going. I brought him up to speed, and he asked if I'd ever used a tens unit, which I said yes, while going to physio. After he gave me my shot, he asked for my work extension, and said he would be getting back to me this morning. By the time it took me to get back to work from the base hospital, he had already called and left a voicemail. He got authority for me to go out and buy a tens unit, and I will be reimbursed!! I can't tell you how happy that makes me, as I always felt better, with both my neck and my leg, after using it in physio!!
    Long story short, (well okay, a little too late for that, lol) I am feeling a little better about my care.
    Lesson learned for those who may be going through the same sort of thing, or who might in the future, stoicism will get you nowhere, and if your doctor is just pushing you through the machine to get to the next person, stop them, and remind them again and again that you do need their help with your care. You will get nowhere fast, if you don't keep the line of communication open, and remind them of how much pain you are in. I know that is my fault, and from now on, if I have to remind her at each appointment, I will.
    For everyone who cared and sent me advice and well wishes, thank you so much, again. I'd still like to know at what point do we stop searching for answers, but today wasn't it for me, thanks to your words of encouragement. And look what it got me, another referral, new meds, and a tens unit!! For that I'm grateful!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Keep on pushing and there is never a time you should give up in my opinion as the answer is out there somewhere.
    Enjoy your TENS.
  • That's good to hear you'll have some proper medications. I too take Oxycontin and it really helps. Bonus that you're getting a TENs unit also. Persistence even when it's hard to find the energy pays off. I'm glad to see you're getting some care from your Primary. My Primary also let me look for my own PM Drs that I've found online and she gives me the referral. It seems they're the best ones to get your treatment you need. I hope you're feeling better soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Jim you have no idea, he completely dismissed me and crushed my spirit. He actually cut me off mid sentence when he stood up and said good luck. I think part of the problem was that I told him who I was seeing for pain management, and they know each other, and I think they hold a mutual disrespect for each other, lol. I now know why my PM doc doesn't respect this guy. I'm sure all the drug seekers just love him, as that's all he does, push drugs. Surprising in this day and age.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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