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I am at 0 on coping skills.

PeppermintPPeppermint Posts: 34
edited 06/11/2012 - 8:49 AM in Chronic Pain
You know we have all gone through the toughest times of our lives dealing with our spines. When my boss sent me home Wed. before Christmas saying she had to send me home without pay till my apt. with my neuro on Jan 11th. All I could do was cry. scream and stress. It is NOT MY FAULT. She said if I could not come back full time at that time I would not have a job. well That apt. was a nightmare. My neuro is dry and lacks empathy.. I was sooo upset. after the 1 1/2 hr drive there with no pain meds I was just mind numb. Anyway I told him about the terrible spasms and pain I am having and that I was still having pain with my left arm. Well he looked at me said am I anxious or depressed. I said NOT anxious but heck yea I am depressed or stressed I am losing my job. I am in constant pain. I had just had a medial branch block test a week ago. Pain mang. wanted to do radiofrequency on the nerves. The neuro said you don't need that you need botox. I was like OK. still in shock. I said well I need something to state I can still just work half days till this procedure. He said I can't do that. From a surgical standpoint you are healed and can work full time. I was in shock. I said well I still can't sit up for more than about 2 hrs without terrible pain. And needing to lay down. So I go call the pain mang. the next morning. The nurse was well I can't even describe it. I was in uncontrollable crying by the time I got off the phone with her. she said well I hurt when I come to work. And the dr. is not going to go against the neuro. so he will not give you a note. YOu need to go to work. I Said are you serious.. HOW CAN I? I am under your care and on meds that say don't drive while taking. So she says I will call and check on you since I was so upset. HAVE NOT HEARD FROM HER.. I was ready to give up at that moment. I could not take the pain and the lack of caring. She kept saying calm down and answer me do you want your job. I said of course I want my job. I want my life back I want to feel able to work. Sheeeesh... I felt sooooo alone at that moment. Still waiting to see if my boss will hold my job since they may not can get me in for the botox till the 31st. Anyone have good results with botox? Any thing else I can do.... I feel like all I do is cry because I try to function and am having such a hard time. When do they finally admit something might have gone wrong a nerve might have been damaged or something. sheesh any advice would be most helpful.....


  • Thanks for reading MY LOOONG POST...
  • Sorry to read about your experience with the docs. Two things that come to mind when reading your post. First, is that Botox really does help in many situations. I've had numerous rounds of multiple injections in my back and also in my neck. The ones in the back worked well, the ones on the neck did not. The second thing that comes to mind, is that docs tend to work with and fight harder for patients who are willing to go along with recommended treatments.

    Hang in there, rough spots do tend to go away after a bit and then life gets back on track.
  • Thanks. I have gone along with everything they have suggested. I was just curious as to what he thought was going on and if it was not nerves since the Pain mang. dr. had me to do the medial branch block and wanted to do the radio freq. after. So just want to be clear what they are thinking. I know it sounds like I am mad. Well not made HOPELESS and HELPLESS.... Just tired of living in PAIN!!! Tired of taking pain meds to get through a day and not having them help but knowing I don't wanna sound like a baby by saying they are not helping. I am using my tens unit, heat, lidoderm patches, valium, xanaflex(works but makes me sooo sleepy.. Hard to take unless you have time to nap) and lortab twice a day. I had them cut back from 10 - 7.5 because the 10 made me so nauseated. So I guess I am just at a low point and relying on God to get through the rough times. I am just feeling the struggle of not being the worker, wife, mom, person I could be. I want to fight to get better but some days you do feel like giving up...
  • Sorry to hear about the Drs not writing a note for you. Will your Primary Dr be able to help you with that? It doesn't seem right if you're having pain to go to work. I hope your Primary Dr. could write a note saying you're ill and unable to work. If you're in pain your Pain Management Dr. should be helping you. Go to the ER if it's unbearable. Don't know if you have any sick benefits from work at this time. I pray things work out for you. 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
  • It can be pretty rough to go thru this kind of pain and when you have all the other turmoil going on besides it - I think it makes it worse. Stress is definately a factor for me. It is hard to not worry and stress and feel guilt, but realistically, you don't deserve it. You need to take care of yourself and if you need to find a different doctor, then get on the phone and find one. I know you mentioned the lortab made you sick. Two a day is not much at all. I would talk to the doc about switching to maybe a percosett or percodan, try something different. Neither of my kids can take lortab without throwing up, but it nor the others bother me at all; they can however take percadan. Everyone is different in how they tolerate different meds. Good luck, take it easy, try to relax, and remember... Worry does NOTHING to make anything better. It doesn't change a thing, in fact it generally makes you feel worse. Take each day at a time.. Marion
  • Thanks everyone. I agree Stress does not help you relax at all ;-) Charry, I was going to go to the ER last Wed. but called the pain clinic. she said just double my meds as I had an apt Friday with them. I signed a paper with pain mang saying I would not go to anyone else for the pain. Nor would I get pain meds from anyone else. So I was afraid if I did they would drop me and I would not have any help. Sheesh Why am I so worried about the rules. I agree I need to think about myself for a bit... Thanks for the advice and the understanding...
  • Peppermint in your list of meds you didn't mention any neuro drugs. Have you tried any of those? I would seem that if the PM doc thinks a block would work that a neuro drug would also. My neurologist does the botox injections but he does them right in his office and usually will do them during that appointment. I can't imagine him having you wait weeks for relief.

    As far as work are you covered by FMLA? That would allow you to work part time and they couldn't complain. See if your company meets the requirements to be included.

    As far as your doctors...do you always feel like this with them? We all have appts that we walk away from frustrated. It sounds like both of these doctors are leaving you angry and frustrated. If it is always this way you might want to consider looking for other doctors. No reason to put up with bad service from anyone and doctors are no exception.

    Hope you can find some relief.
  • No I don't always walk away frustrated and angry. I really like my pain mang. dr. Just seems that lately it has gotten so BIG that you don't often get to see the dr. You see a nurse pract. (which is ok because sometimes they take more time and they listen and act like they care about the patient as a whole...) My last apt was over 2 hours. That is not a normal with them. Check outs are slow but normally they get you back quickly. My neuro is always slow they are always overbooked which has been this way from the start. I am ok with that. You don't want a dr. that you can get in with in a week. hahahha Yes I have been on both neurontin and Lyrica. Could not tolerate either.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Everyone's systems are different. I couldn't tolerate any of the neuro drugs. Then I was told by another spiney to try Lyrica. Witch was the only thing I hadn't tried. But to try it at a lower dose than prescribed. So I tried 50 mg. in morn and 50 mg. in eve. And it worked and I could tolerate it. It did however take some time for my body to get used to the side effects.
    I think what I would do is try them 1 at time, again but at a lower dose and see if one of them may work for you.
    I personally think that the Dr's. have been told by the drug reps to get people on too high of a dose. A high dose may be good for some but a lower dose may be the ticket for others. I'm one.
    Make any sense? :?
    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 so relate to most of what you posted. Before I go on, I tried neuroten and it di nothing for me, then a nuerologist told me to try Oxcarcazepine for a new pain that started las June. It was like nueropathy in both legs and feet and it was unbearable I went to the ER several times because it was so bad. Then my old neurologist prescribed Ox.. and told me to try it, my thought was ok, sure. I filled it and took it when I got home, within 30 minutes the nueropathy pain was gone and i was back to my chronic pain which pain meds could control enough that i could manage without goung nuts.

    The pain meds you are own seem mild for the pain your describing. I agree with an earlier post about trying percocet or oxycodone which for me have had few side effects and work fairly well.

    I have been feeling like you sound since my back surgery on December 14, 2010 on my lower spine. My pain seems worse and the right leg which wasn't a big issue has really gotten much, much worse.I am having pains in places I didn't have any before from tow fingers on my left hand, to my mid upper spine with a burning pain going across my back side to side and my lower back, right hip, right leg to ankle.

    I have severe anxiety, depression, and frustration. I also fear they want to reduce my pain meds which frightens me since I have very little control and I feel they do not understand my situation or the chronic pain and how my life has changed. Take it one day at a time as they said because worry doesn't help.

    I do understand fully how you feel and I will keep you in my prayers. Somehow i'm sure we will make it even though it's a rough ride.

    Take care and God bless
    AL S
  • Peppermint,
    I understand completely. I've had two fusions and a spinal cord stimulator . My neurosurgeon told me my fusion was solid and stays looked awesome and I could go back to work. I, like you, can not sit for more than 1-2 hours. I tried and tried it for weeks - even did half days, they doubled and tripled my meds and I ended up crying in pain and vomiting from the increase in pain meds.
    Pain doc didn't want to write me off work since NS said I could work. It was HELL. I finally talked to them at work, and they didnt want me coming in either. My pain doc did not want to go against my NS even though it was MY IDEA to go back to work, not his. I used the magic words with my pain doc. I told him I was not SAFE at work. I was driving stoned on meds, and waking up and down stairs drugged up. He finally wrote me off work. My work told me to use the words " not safe" they felt i was not safe and told me to tell doc that. It worked.
    Went back to see NS and he states that my CT looks beautiful and has no explanation for the pain - hmmm...maybe it's the 6 screws, 2 bars, 2 cages, andwaires and a battery in my body???

    Work mans comp is giving me a hard time. My pain doc is understanding though. As best he can be. I imagine that they hear a lot of bull crap sometimes. He is understanding and really tries to work with me although i don't seem to think he understands my pain at all.

    I just wanted you to know that you are not alone.
  • Thanks everyone. I will use the words not safe at my next apt. I am going to be more FIRM that my pain is NOT under control... Hopefully I will get somewhere. As I have to judge when I feel I can afford to double my pain meds and then go a day without because I only have x number for the month. When my neuro asked if i was anxious and depressed, stressed. I almost laughed but instead I cried. I wanted to say DUHHH OH wow I am in total disbelief that he was not more caring. Guess it was the wrong time of the month to be dealing with emotional issues so I was a wreck....
  • Hello Peppermint,
    It is a myth to imagine that our pain is under control and we all live with pain of unimaginable levels all the time, it is unrealistic to think that the pain doctor without progressive treatment or collective strategy would reduce your or any pain to a reasonable level, I have not sat round for the last twenty years putting that onus on others unable to match my expectations, we soon learn to distinguish between that hype of effective pain management and our reality.

    I applaud anyone who asks for help in knowing that things could be better, this is a slow and incremental learning process, we all have that need to develop a coping strategy, that takes time, knowledge and understanding with a responsibility to ourselves. Many people here have lost jobs, financial stability, homes and relationships due to pain and it is not easy.

    Evidence here suggests that those starting off on this painful journey have a rocky and challenging road ahead as we all improve together, much experience is evident here from all those who have gone before you and trodden those similar painful steps, we share our support with care and understanding, as you yours.

    Take care and good luck, we all learn something new about pain everyday.

  • Peppermint,

    Have you been keeping a pain log? In that log, are you listing what levels of relief you get with medications, TENS, heat, ice etc.? This could help them "see" what you go through daily. On that log I too would list what activities are restricted (sitting, standing, walking etc.) during your daily activity? Just a thought... I understand your frustration. Hang in there woman! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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