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New to site and could really use some help

Laur en PainLLaur en Pain Posts: 47
edited 06/11/2012 - 8:36 AM in Chronic Pain
Hi everyone, I am new to the site and hoping for some advice and support. I am a 27 year old female with 2 surgeries under my belt and a lot of pain is all I have to show for it. I had a laminectomy for a herniated disc at L5-S1 in 2006 after trying PT, spinal injections and a couple other things. At that point, I did not have back pain but had terrible sciatic pain in my right leg which was the side of the herniation. After the laminectomy, I started having really bad low back pain mainly on the left side which I thought was weird bc the surgery was on the right. It did get rid of the sciatic pain however I don't know now which is worse. Went back to that surgeon post op numerous times and he just kept telling me that everything was fine and he did his job and could do no more. I went to a few different docs in the meantime and was diagnosed with fibromyalgia. I do have almost every single symptom of fibro and don't doubt that I have it, but I can't help feeling like there is something else causing the low back pain which is often much worse than the fibro type pain. In 2008 I went to see another neurosurgeon and was told I have DDD and the disc needed to be removed. That fusion was in Dec. 08. I am still having really bad pain, I would say worse than before the fusion but keep being told that everything is "structurally" fine. So i am still being treated for fibro to manage my chronic pain that I can barely stand every
day (was actually in the ER all night and morning bc my back pain was so bad that I didn't know what els to do) but I am forever rooting around for
some underlying cause that may have been overlooked. Any ideas on what to do next? I have tried PT, epidural and oral steroids, Chiro, acupuncture, holistic docs, you name it. I still have a feeling that it has something to do with the nerves in that area but don't know how to figure out for sure. Also, any tips on getting approved for disability first time around? My rheumatologist doesn't want me working anymore bc most days I can barely get out of bed. Currently on oxycontin and percocet. Sorry this is so long but it's been a long time since I've had anyone to talk to about this stuff. I would greatly appreciate any advice or help from
anyone that can offer it. Thank you so much. Lauren


  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. so glad you stopped by. i don't have any new ideas to offer you but keep your eyes open on the forum and i am sure something will come up.. good luck and keep us informed! Jenny :)
  • Thank you so much Jenny. How did you find out that you have nerve damage? Is there a test for that? Lauren
  • I hate to see someone as young as yourself be in so much pain, however, pain knows no age limits. I myself suffered with pain since I was a teen. Many many years ago lol.

    I also have Fibro, had the back surgery and have suffered terribly since the surgery. I don't have any answers for myself, but hopefully some of these wonderful people here on the board can help with your questions about test and such.

    I just wanted to let you know that with Fibromyalgia it can be a very nasty thing to deal with after back surgery. I myself went into a flare with it that lasted for 13 months. Between the pain from recovering from back surgery and then the added Fibro pain I nearly went insane.

    For some who suffer with Fibro pain meds such as percocets or loratabs help with the pain, for me however it doesn't touch the FMS pain. There are some things that can help.

    Gentle stretches (often) get up and slowly keep moving about), rotating the joints often and slowly, soaks in a warm bath, rice socks heated in the microwave and placed on the aching spots (always swore I needed a rice suit myself), meditation, and if all else fails, a good loooonnnnggg cry!

    I had my back surgery thinking that finally I was gonna be pain free with my back and hips, little did I know that I was going to end up in WORSE pain than before I had the surgery. I am now labled Post Op Severe Back Failure, simply meaning it didn't work for me. The scar tissue left now has nerve endings either growing through it or tangled up in it.

    I am going today infact to see my PM doctor to set up the trial for my SCS. Don't know if it will work for me or not but I don't know what else to do. As the PM doc stated... " It's at the point where nothing else works".

    Good luck and please make sure you check back often, others I am sure will respond and have wonderful advice for you here. And keep us updated on how you are doing and what is going on with you.


  • i too have had two back operations and countless painful procedures on my back and i may require a third operation ..to be honest with you the reason that most of us find this site is we are in constant pain and there is nothing that can be done other than strong drugs .maybe you should see your doctor and sort out some stronger pain killers and when you go see if he/she thinks that you need re scanning? meantime you could try a TENS to help you ? good luck its not easy to treat stubborn back and leg pain .i suppose you have trod the recliner .pillows between the knees when you are asleep etc? a memory foam overlay on you mattress can help too .just don't fall for the infomercials that claim they can cure back pain with some device that cost 199 pounds!! you know the type of thing i mean!
    take care
  • You've come to a great site for support and sharing. Have you tried Lyrica for the fibromyalgia? Healing from a fusion, unfortunately, can take up to 2 years. I too had bad lower back pain, but now it seems to be easing up a bit, still there but better.

    As far as applying for disability, you have a major area covered. Your doctor is behind you. Make sure you have a copy of all of your medical records. At your age, they will look at the fact that you may be retrainable in another career. Check out all the information on www.ssa.gov. IMO, I would hire a disability lawyer to help you.

    Best wishes to you,

  • Welcome to SH.
    Yes, a Neurologist can do a test to see if you have nerve damage.
    I am assuming your Oxycontin is ER that you take every 12 hours. If it is perhaps you need to up the dosage. Oxycontin is very good for nerve pain.
    You could have scar tissue that could be causing your pain. I do not know...it is just a thought.
    Good luck on finding the source of your pain. It does take time and is very flusterating.
    As for the disability. That is very hard to get expecialy at your age. Usually you have to hire a Lawyer after being turned down about 3 times or something like that. I assume you are thinking about SSI? I am really not up to speed on all that. I am sure someone here will be more help than I.
    Best of luck to you.
    Patsy W
  • Hi Lauren,

    First let me say welcome to spine-health. You will find lots of other members here who know exactly how you feel and what you are going through. I like the attitude you have to keeping looking for something to help the pain. Have a look around, check out the fibro forum and the low back pain forum as well. You will find others dealing with the same things as yourself. The only thing that came to mind is are you fused yet? If so have you talked to the surgeon that possibly your hardware could be causing some of your problems?

    The one thing that most chronic pain suffers start to realize is the pain is never going to go away completely. We strive to get to a point that the pain is just there, but no longer controlling our lives. Don't ever give up trying or looking for answers. The other thing you have to realize that it often takes a combination approach of things to help with the pain. Say meds, tens unit and some stretching. However each persons blend is different. Hopefully you will find the blend that works best for you to get the pain under control.

    AS far as the disability question check out the insurance forum lots of folks posting there about that issue. One of the mods has done a lot of professional work on SSDI and knows lots about the system.

    Anyway just wanted to stop by and welcome you to spine-health. Look forward to reading more of your post. Take care.
  • I agree with all the above. Just wanted to tell you that I got my disability first round within 3 months and what helped me was a letter from each of my drs,pcp,pm and Nero. I didn't need a lawyer. Good luck with it. And good luck finding out whats going on with you. You will find everyone very helpful here and alot if good advice and support.
    Just don't give up and continue researching all you can. We are all in some sort of pain here. It's hard, but you hang in there!!!
  • I, too have Fibro...for about 20 years now. It is sometimes worse than the neck and back pain!! Or, at the least, it is exacerbated by the other pains.

    I have to agree with TamTam. We have to somehow come to terms with our pain and just try to cope with it.
    Doesn't mean give up, just can't keep hoping for a miracle to happen. Sometimes they do...but I haven't experienced one yet :W

    As for disability, I was approved the first time almost right away in 06; tried working for about another 9 months or so, and finally had to give it up. Was then approved within 5 months of the last day I worked. Like Hollie said, just be sure to get letters from all your docs and make sure they give them the proper info (Uncle Sam is a bit picky)and you can probably get it very soon after applying. I needed no lawyer, either.

    Best of luck and kudos to all who share their lives with the monster-Fibromyalgia. It truly can make you feel like death.

    God Bless
  • I don't have any info to offer you, but still wanted to drop in and say "hi" & "welcome". This is a GREAT group of people :)))
  • This is a great site with many caring people. I wish I had some good advise for you. Everyone on here has the sme problem-PAIN. We all realize that none of us will ever be back to the way God made us. Just praying you will have a better day tomorrow! God Bless
  • Wow, thank you all so much for your responses. It is good to know that I am not totally alone in this, not that my husband isn't a huge help but he just doesn't really understand. And I don't mean that it's good that any of us have to deal with what we do, but simply that it is nice to have so much support from all of you amazing people who make me feel like I can live with this. I have been back and forth about going back to work just because I feel so useless sometimes but then I think back to 2 months ago before I left and how hard it was to push through every day with a happy face. It's hard enough actually being in pain but then to have to smile your way past it and pretend that everything is ok when every fiber in your body is screaming "go home and lay down!" I think that as much as I miss work, I should listen to my rheumy and just file for the SS disability. It's not like I can't ever go back if by some miracle I am better some day, right? Just a rhetorical to make myself feel better. Hehe.
  • You are so young to have all these problems. Were you in an accident or something? My Dr. said Fibro was mostly soft tissue problem. Fibro does take alot out of you. The problem with meds is they help one thing and mess something else up by side effects. Have you been to a pain specialist?
  • I was in a car accident about 5 or 6 years before I started having the sciatic pain however I don't think that it caused the herniation. I had an MRI after the accident because the car flipped but there was no injury at that time. I guess that doesn't necessarily mean that it didn't do some damage that later caused the disc to herniate. I didn't have any back pain at all before the first surgery, just the sciatic pain in my right leg. It wasn't until after the laminectomy that I started having the other pain. I went back to the surgeon post-op complaining of the pain about 7 times and he kept telling me the surgery was a success as far as what he went in for and that there was nothing more he could do. It wasn't until last year that an MRI showed a recurrent herniation so I went to a new surgeon since the first one obviously missed the fact that I had DDD which the second surgeon told me he could tell from my MRI from before the first surgery. Great, huh? So the general consensus is that possibly the first surgery caused the fibro? Or that maybe I already had it and the surgery just exacerbated it. who knows, right? I am just really glad that I found this site and all the support it offers. Thanks to all. :) Lauren
  • to my joke friend
    it takes a long time to get over pain if you can. i have had 4 surgeries the first one was 8 years ago. they took out metal and have had injections etc and the bad news is that statistically1/3 get better 1/3 stay the same and 1/3 get worse. you might have to live with pain the rest of your life. my pain is like a friend that comes over and visits all the time without an inventation. i have it all the time and try to ignore it. i work and go on vacation but i am still very limited .
    went to disneyland and used a motorized vehicle to get around but good news is that you are always firs in line for the rides.
    get used to idea that you will always be in pain and take your meds that is all you can do
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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