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In need of advice and understanding please!

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Chronic Pain
My name is Jessica. I am 26 yrs old, married and have 2 daughters on 3 1/2 and the other 9 months. I have had back pain since i was about 9 off and on only coming every once in a while and it could have been a month or a year before another episode hit. I started dancing at gentleman's clubs when i was 20 and the pain started coming more often but i always believe it was because i was working muscles i didnt normally and some of the stage tricks arent easy on your body. Then when i had my 1st child i was in constant pain my entire pregnancy and it seemed to fade out again when she was born. In nov of 2007 i ended up in the er because i could barely move without crying in pain and when i went to go see my doc she said i had a slight scoliosis and sent me to pt which honestly just hurt a lot. I did that for several months, stopped for a few and then ended up back in the er may 2008 after i got pregnant with out second child. I went thru a rough pregnancy including having to be hopsitalized when i had a nasty kidney infection due to stones and unbearable stomach pain that had me bedridden and on constant iv pain meds the last 3 weeks of my pregnancy. After that everything seemed ok till this past feb/march when i was having horrible pain in my middle and lower back and ended up in a hosptial again for a week still on an enormus amount of meds. The did a ct scan and a mri but found nothing. I was put on 8 different meds none of which helped and started going to pt again this time including aquatic therapy that while it did help my build up my strength, did nothing for the pain and i ended up in the hosptial again for another week with massive spasms that were actually treatable at the time but the whole of the pain was still there. That doc tried to diagnose me with fibro myalgia and gave me a prescription for cymbalta which just like every other medicaton did nothing. I fought with my pcm on base for different meds and they finally stopped treating me because they wanted me to see and neurologist and didn't want to be bothered. (And no i was not specifically asking for narcotics just for another option to help the pain stop). I was still in and out of the er every 2-7 days and finally got to see a neurologist. By then i was able to pinpoint the worst of the pain and he actually seemed like he wanted to help. HE did 2 bone scans, 2 mris, a emg and several blood test which all came up with nothing. He is now giving me steriod shots for fibro myalgia but everything i have research on that particular diagnosis does'nt completely fit my pain. Mine is centered directly on my spine about 2 vertebrae up from my bra line and extends outward and downward for another 4-5 vertebrae tho not as bad as the top point. I also have some acute pain in the middle/lower part of my back where recently it popped and is now grinding and popping creating even more pain. I have been going thru this for almost 7 months and i'm tired of it all. Tired of er visits where the doctors either look at me like and idiot when i tell them what my neurologist says, or look at me like im a drug seeker because i would rather visit the er for something to help rather than double or triple up on my home meds as i've seen others do. I'm tired of not being able to pick up and play with my daughters out of fear of ending back up in that er bed. I'm tired of worrying that im going to need to be on dialysis before i'm 40 because the drugs have destroyed my system. Ive tried the pt, the exercise, the tens unit, the meds, and a few other things trying to get my life back on track but i'm running out of ideas and help. I really don't think its fibro myalgia and i'm afraid to question the doctor cause he is the only one who has even tried to find a decent diagnosis but i'm afraid he is wrong and i would like some advice on pain management and second opinions on what might be causing all this pain. I would truly appreciate your help

Jessica H.


  • i happen to have the worst tolerance for pain meds. They can give me 10mg of morphine or 4 of dilaudid and i dont even get tired. Maybe a lil silly but im still functional. It makes getting home medications that work next to impossible especially since my nerurologist says that where the pain in centered in my back is so hard for the oral meds to reach. Its becoming an issues because even tho he is the one to say that he looks at me funny when i ask him to change the meds to something that will reach that area.
  • Welcome to the spineys club. I don't have any idea what may be causing your pain, but you are in the right place for spinal problems. Weekends are a little slow for replies, so hang in there. There is one test I can't remember the name of :S where they inject dye in, and seems to sometimes find problems that MRI's miss. I'm sure someone will come up with the name. I haven't had it done, so I'm drawing a blank.

    Don't give up hope, sometimes it takes several dr's and lots of tests to find out just what the problem is.

    Lots of >:D< . You are blessed to have two wonderful babies. Even if all you can do is just sit with them on the couch and read to them, the time spent with them is more important that what you do. Best wishes
  • of mri's with contrast. That is something i have tried to get done because i think i will show something the mri's are just not catching without but the radiologists in my area refuse to do them with contrast unless you already had surgery or are about to or have a tumor. It sucks and i don't know if there is a way around it. Maybe my doctor can come up with a reason to do them that way.
  • perhaps it is time to take a look at fibro and maybe get a treatment plan going. :? sometimes knowing is far easier to handle than not knowing.. :T your life is at a standstill right now with your children and your job.you have found a doctor willing to start some treatments and diagnosis for fibro so see where that goes.. :D don't let fear run your life. it will ruin it!!! ~X( good luck and know we are always here! :D Jenny :)
  • Welcome to SH, a great site for support. I think maybe Maggie was referring to a CT myelogram, which will show if the pain is coming from a damaged disc. MANY times a plain MRI will not show exactly what is going on. Also, have they done flexion/extension x-rays of your back? As you have to lie down for an MRI, sometimes there are problems not seen when you are bending forward or backwards. I had horrible spasms, went for lumbar MRI, and my regular doc told me it was normal. There was a bulging disc at l4/5. Went to see my NS for follow up of my neck fusion, he knew right off what the problem was. Took the above-mentioned x-rays, and noted I had a slipped vertebrae causing spinal instability. You mention pcm on base, I assume you get your care from the VA???

    Best wishes to you,

  • I can somewhat relate to what you're going through. My pain began when I was 12 or 13 years old. I have a scoliosis located between my shoulder blades (s-curve). I've dealt with this pain for 50 years. I've seen numerous drs over the years and there was never anything they could do for me. I've also had low back pain off and on over the years. You just have to learn to live with this condition. I have 3 children and it was never easy doing everything I had to do and deal with the pain. I've also been diagnosed with fibromyalgia, though I know this has nothing to do with the back pain.

    Be very careful with pain pills that you don't become addicted. My experience has been that pills never really helped and because I'm very sensitive to medications, I don't take anything except tylenol arthitis and sometimes I take darvocet. I've also used my share of heating pads and ice packs over the years.

    Good luck to you, Jessica, I know it's difficult. Keep us posted.
  • For all of the comments back. I will talk to my Dr. about having some of those other xrays done maybe that will show i always wondered if there was something that wasn't showing because i was always in one position. I appreciate the support and the words to keep going and i plan to. Its been a very frustrating couple of years and the road doesn't seem to be getting any smoother. As for the medications i am being as careful as possible fully aware of the side effects and the addiction risks. My husband on my request helps me monitor my med intake and i dont take as many pills a day as my prescriptions say i can and i worry myself about needing to the er for hardcore narcotics. Im just trying to find a way to keep going for my kids for my family and for myself. If anyone else has any comments on other tests i should talk to my doctor about please let me know. Oh and no i don't go to the VA my husband is in the army but it getting medically retired soon due to knee issues and time is starting to get short on what i can get done before my insurance runs out. Maybe thats part of my desperation to get answers knowing there may be a period of time soon when no one will be looking for them except me. I have no problem with the fibro myalgia diagnosis if its the right one but it just doesn't fit everything and i don't fit all of the critera for it that it makes me doubt the diagnosis. Thank you all so very much and please keep the replys coming.
  • a Pain Management Specialist? I have found that lots of times surgeons want to send you down the road if they don't see anything to operate on. I went through 2 years of excruciating pain and no diagnosis. My PM was able to diagnose me with the use of a discogram and several other procedures. Some thimgs will not show up on an MRI or xrays and it takes other methods to find the problem. Good luck and please do keep us posted.
  • My doc finally found a med combo that helps without knocking me out but only after a horrible 48 hour period of no sleep and no help from the er. Im now on celebrex soma and lortab 10's!!!! Wish it wasn't so much to keep the pain down and now instead of saying that its fibromyalgia he thinks it might be some sort of spine arthritis. Joy and rapture. Gotta see a rhumetologist now but at least they are still trying to find answers. Also got another set of mri's to check the popping and grinding in my lower back. Here's to feeling better for once!!! yay!!!
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