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At a loss!

Aussie_GurlAAussie_Gurl Posts: 6
edited 06/11/2012 - 8:47 AM in Chronic Pain
I'm new here and from Australia so hopefully you'll understand the medications etc...

anyhow I have chronic lower back pain and nerve pain in right leg. right leg weakness, numbness and sometimes tingling. I have had this pain for 2 years, i have had alot of investigations and am currently having more, tomorrow im having nerve conduction studies.

i am here because my specialist in my regional town (im in hospital in city, 4hrs drive fro home but was air ambulanced here) presurred me into having nerve root block injections with local anaesthetic and steroid. i say pressured because my nerve damage/injury was caused by a very negligant anaethetist who for my casearean birth had 7 very painful attempts at epidural, hit nerves twice which felt like electric shocks down my leg. (this was my 3rd caesarean and had no problems with the others) I was scared at the thought of more needles in my back but he was cutting my pain med so felt like i had no choice. this procedure was very painful and the dr said he could tell it was very inflamed and damaged.

well the nerve blocks flared it all up and here i am.

so, my problem. i am on fentany patches, one 25 and one 12 and 300mg twice daily of lyrica. my nerve leg pain is pretty good i think thanks tp the lyrica, but it got to this dose to get good relief. when i was admitted it took alot of pain meds to get on top of my psin. they did some mri scans and referred me to a pain dr. he basically cut all pain relief including from tomorrow cutting my fentanyl patch to just 25. i am still having killer stabbing back pain at times still reducing me to tears :( my leg at times is so 'dead' i can't make it do anything! the plan is to send me back home in 36 hrs with pain relief cut to the one patch, the lyrica and 20mg of slow realease oxycontin twice a day (i hope this is the case) and nothing for the times when the pain flares up.

they have enrolled me in a course called ADAPT whixh is 3 weeks full time. suppossedly the demand is very high and outpatients have to wait 18 months to get in. i am enrolled to start in 4 weeks. its is basically about managing chronic pain medication free. in fact they want you off all pain meds by day 4 of course and help you withdraw.

are these courses really this good? what am i going to do for the times when the painis so bad i am bed bound and in agony?

I have 2 small children including one with severe cerebral palsy. my husband is supportive but said to me he cant wait for me to do the course so he can 'get his wife back"

please help! any advice from others who have been down this road? are these courses that good? how am i gunna manage this level of pain with no meds?

thanks so much if yoy got this far, it ended up being long!



  • i meant to describe the pain better, basically like a knife in my lower back, i also get spasming and when its bad i get the burning nerve pain back down my leg. how on erath am i going to manage this for life with no meds? even if i had them for flare ups?
  • Hi, Aussie_Gurl, and welcome to the Spine-Health support forum.

    You've had a tough time and it looks like it's not over yet. I'm at a loss to share any helpful advice, really. I'm just newly started on Lyrica, myself--I'm 2 1/2 weeks post-op 2-level lumbar fusion with intermittent severe sciatica in my L5 nerve. Pain meds alone (oxycodone or hydromorphone) did not control my pain. Lyrica has been the med which has done the most for me. I'm currently taking 50 mg three times a day and I can up it to 4 times a day if needed, which it has been the last 24 hours. It would seem like the Lyrica should be doing more for you than it is. You're already on a pretty high dosage but I don't know how much a person can safely take. I think I remember a post by someone who was on 2,000 mg of Neurontin per day (similar to Lyrica). Hopefully, some other members will jump in here with more information which may help you. Wishing you the best in controlling your pain, getting that nerve to settle down, and you being able to get back to your precious family. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • So for the next few weeks instead of 37.5 mcg. of the patch, you'll have 25 mcg. plus 40 mg. of Oxycontin and then in three weeks you will take a course to help you use new strategies to help you to control your pain? You'll then get off of all of your meds.?


    Why does your doctor want you to stop taking pain medication?

    Does he really think that this course will get your pain totally under control?

    On paper, it sounds GREAT! But to me it seems like EVERYONE with CP would go there if there were a course that allowed you to be medication free because it helped you that much. There would be no need for pain medication. I would LOVE THAT!!!I can't stand taking meds. every day. It sounds awesome, but it also sounds like it could be too good to be true. On the other hand, it's important to stay positive about these things because maybe it could really help you.

    Have you talked to your doctor about your concerns? I would be worried too. I would ask my doctor why he thinks this will eliminate my pain to the point of not needing meds. or therapy and all of the other things I use to control it.

    Maybe I'm missing something here, so hopefully others will chime in.
  • about these classes. I don't know why a doctor worth his salt would assume that if they send you to a class your pain will go away. Pain medications are no fun -- I spent nearly three years in a fog because of them, but if you need them to stop (or even minimalize) the pain, I don't think the doctors should try to withhold them from you. Your husband should remember that it's not the pain meds taking you away from him -- it's the damage to your spine!

    I wish you the very best.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • thanks so much for the understanding replies, well last night i got zero sleep in hospital! the nurses were very understanding but the dr just wouldn't give, it was only when i was in tears they gave me a small dose of endone and valium.

    i just don't know who i'm going to see for pain meds once home as my gp will only do what the pain team says :(
  • I wish you luck
    Can you get a different doctor or maybe go talk to a therapist to tell them what your going through so maybe one doc to another something can work out to help you?
    You have to be able to take care of your child. I think you need to make your doctor understand that. Maybe the doctor is just trying to see if this will work ofr you? If your there all the time or at the ER then he will know that you really DO need help FROM your pain. I really don't know what to tell you. I wish I had some magical answer for you. Best I can think of is what I have stated.
    Good luck and do keep me informed.
  • Aussie_Gurl,

    Welcome to Spine Health!! So sorry to hear your pain is so bad. *HUG* I guess the first point is to pin point *what* is generating your pain. Is it nerve, muscular, skeletal? If it's nerve, drugs like Lyrica, Neurotrin (sp) are for nerves. Narcotics and Opiates are for the mechanical pains.

    With all that said, I agree with Isteller in that a course of being pain free without meds? Seems out there, or too good to be true. Please keep us posted when you go through that course. I would love to find a way to knock down the pain. Though physical pain is still physical pain. I hope you find some relief soon. Support *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Someone else from Australia said that Australia has a pretty negative view of the use of opiates. I guess that's the case :(

    I've heard nothing but good things about similar classes, to tell you the truth (these classes use intense cognitive-behavioral therapy to teach you to manage your pain with your mind. They are not based on any belief your pain will go away, they are simply another pain management technique). But you sound so scared, that I'm scared for you!

    I really dislike people who fix unbroken pain med regimens. Were you kind of dopey on the fentanyl? That seems to be a pretty common side effect, but the pain relief is pretty good. I'm going back on it pre-surgery because nobody's going to care if I'm dopey post-surgery, but I'm sure going to care about the pain management!

    Please keep us posted. And maybe inform your husband that if he wants his wife around, he should probably help advocate for proper pain control, as wives with 6-8 pain levels tend to not be so pleasant to live with.
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