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20 year old with chronic pain. Really long..but please read

JessyLovestheCubsJJessyLovestheCubs Posts: 43
edited 06/11/2012 - 8:41 AM in Chronic Pain
Hi everyone. I've written on here before but never on the chronic pain forum. Well, things have been going pretty bad for me lately and it gets harder and harder to stay positive. Here's my story...

I'm 20 years old and a sophomore in college. I've had back pain for 5 years and these past 2 years have been the absolute worst. The pain is in my lower back and it radiates down my butt, both legs, both feet, and toes. I played competitive soccer for years and had to quit because of this. It was like a huge part of my life was taken from me. I'm still dealing with this loss. When it first started I was diagnosed with spondylosis thesis, but then I went to another doctor last year who said I didn't have that.

My pain is constant and debilitating. I'm sorry if I sound like I'm complaining, but I rarely talk to anyone about this because I don't want to be annoying. I figure this is the place I can speak what I feel. Anyway, I can't have a job because I can't stand or sit for long periods of time. I can't even go to the mall without being in pain. Pushing myself to get to class is so hard. The stress of chronic pain has affected my happiness and my boyfriend's and family's happiness as well. Most weekends my boyfriend and I just lay in our apartment while I'm drugged up on pain medicine. My medicine makes me so so so tired, and makes me have no appetite. I've lost almost ten pounds because of it. I was 125, and now I'm at about 116. (I'm 5'3 by the way.)

My doctor (an orthopedic surgeon who specializes in the spine) said to take anti inflammatory medicine. That didn't work. He gave me a back brace which hurt more than anything. He put me in physical therapy which also killed my back. I had Ct scans, X-Rays, MRIs, EMGs all which showed nothing except for a slight bulging disc that the doctor said couldn't cause my pain. At this point, the doctor wasn't giving me pain medicine because I don't think he believed me. He gave me another back brace, again it didn't help. He made me go to physical therapy. It didn't help...surprise. At one point though, it got so bad I went to the emergency room and they referred me to a neurologist. Before I could get to my appointment I made another trip to the emergency room. By now I realize they can't do anything for me there, so I quit going, although I'm in terrible pain daily.

I went to my ortho again before the neuro and he had me get an epidural injection which didn't help at all. He finally gave me pain medicine after that because I guess he realized how much pain I was in. Then I went to the neurologist which was the worst doctor experience of my life. He accused me of faking my pain to get pain medicine. He yelled at me for wearing "fancy" nike shoes instead of better ones for my back. They were brand new tennis shoes that I bought specifically because they helped my back pain. He slapped my leg and told me I was cheating on the reflex test. He yelled at me for sleeping on my stomach even though I said I slept on my side. He said there was nothing to do for me. He said I need to take Tylenol and do physical therapy. I don't think I need to tell you that neither worked. By the time I left I was in tears and my mom was close as well. (One of my mom's friend's said they saw the same doctor, and they refuse to ever go to a neurologist again.)

My ortho referred me to a spine specialist and I just visited him about a month ago. I was hopeful that this time would be different. You know what he said? Take some Tylenol and do physical therapy! He saw I was close to tears and my mom basically snapped at him and said there is no way I can deal with this with Tylenol so he has continued to give me pain medicine but he doesn't feel like I should take it much longer. He said it is my muscles making me hurt which I just know can't be true. He said I need to become more active and start running. I don't know what to do! I already told him I cannot even walk to class without being in excruciating pain what makes these people think I can run?

I started my physical therapy again. The guy said he isn't sure if it will help me because none of the other pt rounds did. I can't even do the simple exercises without being in pain.

I take Tramadol around the clock, quite literally. I take 2 in the morning, 2 in the evening, and 2 at 3am. If I don't take it in the middle of the night I wake up in agony around 5 and don't get back to sleep.

I've tried to be positive for as long as I can. But, it is getting harder and harder. I come back to my apartment from class crying almost daily because of the pain of just being up. I went on vacation with my boyfriend and family and I know I just dragged them down, always needing breaks to lay down and everything. I would love to be active again, but every time I try, I just hurt myself worse. I'm only 20, I shouldn't be in the much pain all the time. I'm losing so much time just crying and laying on the couch, I want to go out on the weekends like everyone else on campus. I want to not hurt. Honestly, I think maybe I have forgotten what it feels like to NOT hurt and that makes me so sad. I just want to be a normal 20 year old, I'm sick of bringing people down by saying things like, "Oh sorry, I can't go to your party", or. "No, I can't do that because of my back."

What do I do? I go back to the spine specialist on the 8th. I'm thinking about asking for another x-ray. I just know there has to be something there. I know what my pain feels like and I know what sore muscles feel like and I know for sure that my muscles are not the problem.

If anyone has advice for me I would appreciate it greatly. I'm sorry if this sounded like a sob story. I really am not trying to make people feel sorry for me. I just needed to get this all off my chest.

Thank you for letting me get this all out. If I could just push this pain back and deal with it in my 40's or something, I'd love to. I just want to be happy and OK again. I just want to be normal.

If you have any info for me or anything that could help me...please please please tell me. If any of you guys just want to talk that would be cool too.

Also, sorry that this post was so long and scatterbrained.

Thanks for listening,



  • Luv your heart. You ARE having a rough time of it. It sounds like you have Sciatica. It is caused by something pressing on the nerve that runs down the back of your legs. Usually a bulging disc can cause this. Has your Doctor ever said any thing about Sciatica? It is very painfull. There is a forum about Sciatica on here.
    I am by no means a Doctor but that is what it sounds like it is tome. Is your bulging disc in your lower spine? That very well could be what is causing your problem.
    I am sorry I am not more helpfull. best of luck to you. I would type sciatica in a search box and read all I could about it.
    Sending a hug coz you need one. >:D<
    Patsy W
  • I'm sorry you're having all this pain and the Surgeon doesn't seem to be helping much right now. I think a bulging disc would cause pain and also the pain around it. I had facet joint pain that really hurt bad and facet joint injections helped for a short time. They assess the facet joints by asking you to bend back at your hips and if it causes pain or you're not able to bend back then it's the facet joints but I'm not a Doctor just had lots of pain from this. Have you tried acupuncture and does your PT do this? Are you taking something like lyrica or Cymbalta to help with your leg pain? I would keep looking for a Doctor to help you. That Neurologist sounded not nice at all and had no right to talk to you or slap your leg. Please try to bring someone with you to the Dr. to help with questions for the Dr. and be a witness to the way the Doctors treat you. You deserve to be heard by these Drs no matter just because you're young. There are other younger members here who've had surgery and they like you are for real. I hope you get the help you need. Don't give up. Sorry if I'm all over the place it's 4 am and I just wanted to support you and will be glad when they find out what's going on and what's causing your pain. Try heat or ice for your back and legs. Another great site to check out is www.chirogeek.com for description of bulging discs and all. You 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'm sorry you are in so much pain!

    It sounds like you are going through a bit of what I went through. When you are young, a lot of doctors do not take your pain as seriously. My pain started when I was 27 (I am 30 now).

    Is surgery a possible option for you? I can't really say since I don't know your situation. If PT and/or injections aren't helping then you need to keep exploring other options. Have you tried a tens unit (electrical stimulation)? There is also something called a Lidoderm patch that you put on your back over the painful area. They helped me for a while and are good because they go on the outside and are not addictive like narcotics.

    A little background on me - I am on my 4th round of PT because doctors refuse to believe that someone my age, with a "simple" bulging disc (actually 2), could be in so much pain. I have had to jump through a lot of hoops but I finally found a surgeon willing to operate on me if this round of PT doesn't work. I have tried EVERYTHING else at this point, though.

    I really feel your frustration. It is hard to be tossed around for years and not taken seriously. Unfortunately, all I can advise is to have patience while you keep pushing the doctors to come up with solutions. And don't be afraid to tell them EXACTLY how much pain you are in. Having your mother come with you to drive home this point sounds like a good idea. This is something I tend to downplay myself, so that I don't sound like I'm whining. I think this has really hurt me in the long run as far as doctors taking me seriously.

    Anyway, that is my advice. Not much but I hope it helps...

  • i really feel for you, i have felt your pain. its so hard to be heard but do not give up. the others wrote what i was thinking, ice,heat,tens unit.
    i have spondy as well, the best thing ive found to help is lying on my stomach, that goes against everything doc tells you but it helps me a lot.
    none of us wish to live with our pain but anything that helps a little is worth trying, all the best and dont stop trying to get the help you deserve
  • Are you near a major city? I would find a different spine surgeon to see. I prefer a neurosurgeon myself. Make sure to ask for flexion/extension x-rays of your spine. Spondylolisthesis can be very painful. I was told my MRI was normal by my PCP and only showed a bulgig disc. My NS ordered those x-rays and showed me that my vertebrae had slipped causing spine instability. You shouldn't have to suffer like this.

    Best wishes,

  • I had serious pain for 2 years and went to several Drs both Ortho and Nuero before I found out what was wrong. I went to a spine clinic, in Mpls, where they said I could have a torn disc.Mri and Ct dont always show this, and bingo, that was it. In fact there were three of them that showed up on a test called a discogram. I think you need to go to a spine clinic where they will look at you better. Or, ask your Dr about the discogram test, which will tell if you have a painful disc.
    Dont give up, I didnt and am glad I didnt. I though I was going nuts, but finally found someone that did the right testing. Good Luck. Love, Robin
  • Thank you guys so much. I can't even begin to describe what it's like to finally have people who understand. I mean, my family and boyfriend feel bad, but they don't understand the pain and frustration of all of this.

    To address a lot of the questions that were asked...

    Yes I've talked to my doctors about sciatica but they didn't even acknowledge it, they just nodded and changed the subject.

    Yes I've tried a tens unit and it hurt me really badly so I quit using it after a week or so.

    No doctor has talked to me about surgery because basically they don't know what's wrong with me so there's no specific surgical procedure to do. The only doctor who even mentioned the word surgery said "I would love to do surgery on you and just fix all this, but I just don't see anything I can operate on."

    I sort of live in a major city. I live in Iowa City and I go to the University of Iowa Hospitals and Clinics for my treatment. The hospital is supposed to be one of the best, but with my experience, I really don't like it. You always have to be seen by a student first before the doctor which makes me mad because this isn't a game to me, I don't want the student to try and guess what's wrong with me, I want to see the doctor and I want him to do something about it. Not to mention the fact that they give the students white coats to wear which makes them act soooo cocky and talk down to me. Actually, all the doctors there talk down to me and are full of themselves. But they are supposed to be the best. The only doctor there that I liked did scoliosis surgery on my brother, and actually he is world renowned orthopedic spine surgeon. Dr. Weinstein...heard of him? Unfortunately he didn't see anything wrong with me, I would have loved to continue see him.

    When I go to the doctor in 2 weeks I will definitely mention everything you guys I've told me. I'll demand another X-Ray and discogram.

    Again, you'll never know how much all your support means to mean. I know all you did was respond to my post but at this point in my life having people who feel my pain is the best medicine for me. I'm already feeling more positive about this.

    Thank you guys so much!
  • Sciatica pain on its own without remarkable MRI/CT/XRAY findings, in my experience, isn't operable, only the symptoms can be treated. Has anyone recommended nerve pain meds or neuroepileptics (neurontin, Lyrica, etc) that have corollary pain reducing effects?

    Pain mgmt. docs who are DO's as opposed to MD's can do physical manipulations that have both analgesic and preventative effects, and both kinds of docs can do nerve blocks to diagnose which nerves are causing your distress and then try to ablate those nerves to deaden the pain signals. And spinal cord stimulators show great promise for sciatic pain.

    I have had lower back, hip, and leg pain x 4 years, and like you have very vanilla MRI's with only some arthritis and a very mildly herniated disk. I now have a spinal cord stim that covers 60$ish of the pain I battle.

    I wish you only the best, and can definitely say I feel your pain." I can definitely relate to your need to constantly get flat and with having to cancel plans,

  • I went to the U of Iowa clinics as well. I have a friend that is a Phycians Assistant in the Hospital whose husband also had back issues. He went to an Ortho and they told him PT. Then he went to a nuerologist there that operated in 2 days. Maybe you should make appt with a neuro. Just my own expierience. I went to Ortho there that wanted me to go through phsycal therapy program for 2 weeks. I had already done most of it and went on to the Spine Clinic in the cities. They found the tears by the discogram. The Ortho there said not all tears show up on MRI or CT. Even if they are small they can be very painful. That is exactly what they found on three discs.
    Hope this helps you. If you want to know who to go to at U of I or the cities, PM me and I will get the info to ya. I live in North Central Iowa. So a trip to Iowa City is 3 hours. Just had surgery there Oct 26 for a tumor in my eye socket. They are rated in the top 5 of the world for that. So I felt good about my surgery and it went well. I had 15 DSrs at tumor board discuss what they were gonna do, cause my tumor was so rare, they couldnt even give me percent of chance of cancer. They had only had one other case similar to mine. Anyway, Good Luck.Love, Robin
  • Hello, I wanted to reccomd Chiropractic to you if you have not tried it as this can be very,m very beneficial - they can do both manipulation of the painful area and/or Graston which is a massage technique or use a Decompression machine which could be very effective if you have bulging discs. I love my chiro.

    Also definetly ask about Lyrica, cymbalta or some of the related neuromodulators.

    And last have you looked into alternative meds - supplements like serrapeptase, SAM-e, Curcumin, Glucosamine/Chondroitin, etc?
  • Also Jessy You might want to see a pain management
    I found one that is great and will listen to you.
  • So sorry to hear you are in such awful pain.
    My son complained of severe pain for years and the doctors said that there was no way his bulging discs could cause that much pain. He too has it radiating down his legs and into his feet.

    I finally found an Imagining Center that used the Standing or Sitting MRI's and sure enough, there it was on his MRI, his spondylolisthesis. He was so happy to finally have it confirmed!

    There aren't many places that have them but I will PM you some info on it.

    I hope you can find your answer soon. You are so young and have so much living to do. Hang in there.

    Peggy x
  • To be so young and in so much pain must be frustrating. I don't have anything extra exciting to add to the others, but I would definitely look at having another MRI or Discogram. The Discogram can find problems that other tests can't.
    Good luck to you, hope you are feeling better soon, Lisa
  • I fully echo what Peggy is advising. In a recumbent MRI, I only showed a tiny bulge at C6/7 - was numb, weak and pain down the arm! Surgeon said, "Nothing there to fix, I wish I could help." I then asked him if I could get a positional MRI. Bing!! It showed clearly that I had herniated, and too it was slammed up on the nerve root! I hope you have one of these sites near where you live and can get one. Please keep us posted!!


    Ps... for me, anymore spine MRI's for me will be the positional one. :-)
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Jessie,I just wanted to let you know I'm sorry for all the pain you're in.I've suffered from neck pain for many yrs,my lower back pains are really starting to bother me the last 6 months or so.Just try really hard to keep a positive outlook on things,as hard as that is sometimes,I've learned over the yrs it really does help to look at the sunny side of things.Just know we're all here to support you any way we can.Take care of yourself,if I can help you in any way just let me know.Peace and Love! Mark
  • Again, thank you to everyone who has responded to me on here with advice and support. It is exactly what I need during these frustrating times. I am so lucky and grateful to have found you guys. I can not think of a way to pay you all back except to support you guys on your journys as well. If anyone wants to talk feel free to Private Message me.
  • I sent IM. I would research Lymes Desease. Exspecially how it relates to chronic, sciatic and spine pain.
  • your condition is about like mine I was tild i could end up in a wheel chair if my slippage got amy larger so i did big mu=istake something is 10 to 15 days no sleep just sit and cry alot rhe med you are taking did nothing to touch my pain dont know if they say you need surgery but beware they are like used car salesmen once you get it its your and go on your marry way and i am now taking painful injection that dont work either i still take 2 differnt kinds of meds and its only takes the edge off of it dont know what i will do if nothing works and they dont believe about how much pain iam in and whey wont give me meds i feel for you not everyone will treat you that way keep looking for someone to help you i feel you pain really and its not fun beware of dr who want to cut on you you could end up in worse sgape than you are take care tc
  • I am sorry that you are in this kind of pain so young. In 2008 after 2 previous back surgeries, I started having terrible pain in my leg that had me on a walker for 3 months. The doctors did a new m.r.i and all kind of test and still couldn't figure out what was causing me the terrible pain. Luckily, I had an excellent neurosurgeon that decided to do exploratory surgery. He had an idea what level because of the way I was sitting, which was unbelievable to me. Anyway, he did the surgery and found a bone spur that the main nerve root was hiding. it explained it as your knuckle sticking up and the nerve lying over it bent. it was actually hiding the bone spur. He removed it and that night I was pain free except from the surgery site, of course. I would keep looking for a doctor who is willing to find the cause of your pain. I have read alot of stories about poor doctors so I hope you can find a good one. Good luck!
  • Hi Jessy' Man you are too young for this stuff.I read your post and i can relate to everything you are saying. I was 29 myself when my back trouble started and boy i got the run around by every doctor there is .Its good that you can put all your feeling out there,for most of us felt same thing,and still do of being left out of enjoying life as we see others doing, and we dont want others to see us in pain. People that have no pain realy do have a problem understanding how this pain changes our life and most of them are cought up in there so called problems which we know when they are healthy, most problems they have are very small usualy next to what we deal with,and mostly brought on by them. I am speaking from what i experianced in my last 20 years for i am 49 now and suffered from the time i was 29. Only way i can explain the doctors actions toward ya and being such an idiot toward ya is.He is looking at a 20 year old girl who might need surgery. With him knowing that facts of so many bad outcomes of back surgery,where some are in much worse shape after back surgery such as myself then before surgery,that they posibly think they are doing the right thing by sending you away, and force you to do everything other then surgery and try every other posible option. I am probably not telling you anything new with what i just said,and i am surely not saying its the right thing to do for them not to at least find the problem and then let you decide on weather you want the surgery or not. You would think they would at least be smart enough to keep looking and find the cause so you at least know what you need to treat. I did every alternative treatment for 18 years before i finaly had a discogram that showed i had a leaking disc. Thats when i finaly let them do surgery. It took the doctors 18 years to recomend a discogram.That tells me my disc was leaking for 18 years and i guess its posible surgery might have been done too late and thats why i have nerve damage. Only thing i can recomend to you Jessy is dont take no for an answer. Insist that they find the cause of your problem with what ever test needs to be done. A good pain clinic is a good place to start, for they work close with the ortho and neuro to do a lot of these tests. I wish you beter days to come and hope you find a good pain doctor to help ya. And as i said dont take no crap from any of these doctors, make them do there jobs. Thats why they are doctors. Our employers have expectations from us when we work for them, we have same expectations from doctors when they working for us. Hang in there Jessy' Sincerely Yours; Alexhurting ps; GO SOX''LOL
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • O:) Hi-I haven't been on here in months, so I don't think it was by chance that I ended up reading your post-I believe it's a God thing.
    About 15 yrs ago I screwed my lower back during a windsurfing accident. I couldn't even stand up straight. It felt like I broke my back!! I also had shooting pain down my left leg and constant severe pain, especially in the buttock and upper hamstring. All I could do for 3 yrs. was take pain pills, muscle relaxants and zombie out. All my films were negative. Turns out all my pain was b/c my left sacroiliac joint was out of alignment. I would go to get adjustments, feel a little relief, then bend over or move the wrong way only to throw it out again. B/C of years of being out I had developed severe instability. Then I found out about Prolotherapy. THis saved my life. After going through the 3 visits I felt stable again. It totally healed me. My husband herniated his L-4-5 disk a few years later. After failing @ P.T. nerve blocks etc.he went to try prolo. The doc placed it in the ligaments that run vertical to the vertabrae. With the increased thickening of them due to the prolo, it was enough to coax the disc back in enough to relieve his pain. All I'm saying is this: If you go to a surgeon they will want to CUT.Go to a neuro they want to medicate you. Graston has also recently helped us both with other chronic pain issues. You owe it to yourself to re-think things, esp.if all your films/tests are negative. Also, about 20% of population is walking around with herniated discs but are asymptomatic, so don't let a dx.of that trigger all your decisions. If you look at the success rate of spine surgeries, they aren't that great, most of these people end up needing more. I hope that helps, your'e in my prayers and keep me posted.
  • Hi there, Not sure how I missed this when you posted as I was pretty much home-bound at the time.

    I am so sorry for what you are going through. You are far too young which seems to be a challenge too. Not only do you have to face this at such a young age, but you are also facing it at a time when doctors worry about prescription drug abuse in youth. They should never have accused you of this unless you were 'going through' a prescription too fast. Very hurtful.

    No doctor should "yell" at you. If they are stern on what to do and not to do that's different but talking down to someone is no way to treat someone.

    I think folks here have given you some great advice. I would indeed look at a Pain Mgmt doctor, ask about Lyrica/Cymbalta/Neurontin (?sp) which are all someone of nerve blockers to reduce that pain. Also, whoever mentioned lymes disease is wise...it's worth checking into to make sure you rule that out.

    I have sciatica and was able to deal with it for years with PT and occassional NSAID Prescription and just watching my activity and diet.

    A few other things -> make sure you stay hydrated with water, walking is actually good for you (no need to do distances but walking even 10-15mins every few hours is helpful), ice to keep inflammation down on your back 2X/day for 10 mins, Keeping your core muscles strong (which sounds like you are pretty fit and do), and don't give up.

    Also, don't rule out one type of doctor b/c of an experience with a particular doctor.

    I saw 7 opinions varying from OrthoSpine doctors to Neurosurgeons...was able to find great ones in each field. Varying personalities...all valuable information that I look back on and am thankful for.

    But, like you, I didn't stick with the doctors that I felt 'challenged' by. I selected a doctor that both my husband and I connected with and trusted (and who had good credentials). It makes all the difference. So don't give up hope...keep searching and leverage your Mom for support in the appointments. I took my Mom along at your age and I think it helped to have another set of ears.

    The other semi-positive thing is that at least the doctors won't go in for "exploratory" surgery. It seems that you found a doctor willing to perform surgery on someone your age if he can figure out what's wrong.

    If all else fails, I can send you some ideas in PM.
    It may require travel but you have your entire life ahead of you. I'm so sad that you are struggling to get an answer to you problem.

    Gentle Hugs.
  • I just noticed your pup! What a sweetie.
    I have to say that my dog is often my most comforting friend. She almost knows when I need her the most...from just sleeping near me to trying to make me laugh. I hope your pup brings you as many smiles.
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