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Avatar universal

Pain - What could it be - will it get worse?

I have been living in pain on a 24/7 basis for over 4.5 years now.  I have been through about every test you can imagine and still nothing significant shows up.  I've stopped trying to figure it out and just treating the symptoms but I feel I am getting to the end of my rope and almost ready to give up.  The thought of living the rest of my life (I am only 49) in this pain is too much to even think about.  I can tell you what it is not more than I can tell you what it is.

I'll start by the known medical issues:  osteoporosis (bones equivilant to a 70+ year old); secondary hyperparathyroidism, prandial hypoglycemis (occasional), thoracic degenerative disc disease, depression (imagine that), kidney stones, complex kidney cyst, and now high blood pressure (since being put on prednisone).  I think that is about it.  It does show some inflammatory process in my lower lung basis but nobody has said this is a problem.  I do not have any type of digestive issues like reflux - that has been ruled out.  It is not my gallbladder - also ruled out.  

The pain is in the center of my back/chest - almost like a band of pain around my xyphoid (about the area of a bra strap all around the torso).  I feel better when lying down.  I am on a LOT of pain killers and the dose has not been increased in a long time so the pain continues to get more intense over time as my body becomes immune to the meds.  Most days I sit at work in pain and have a hard time dealing - but some days are okay.  I don't know how long I can keep doing this but without any type of diagnosis, there is no way disability is an option.  I have been told by several docs (of the many I have seen) that it was in my head.  How they can determine that meeting for the first time without asking any questions is beyond me - but they think they know me.  My PCP knows me well and is not concerned with drug abuse, and I have been through a lot of medical issues since the age of 18 - many surgeries - and I am not one to say I am in pain just to get medication.  The pain will wake me up at night and is very severe at times (I would not be able to survive without the meds).  When it first started, I thought I was having a heart attack and was rolling on the floor in pain - it was terrible!!!!  I did not have a fall that triggered this - it came on after a bout of antibiotics and an ear infection that won't go away (I have station tube problems and my ears don't drain properly so I get a lot of infections).  

Does anyone have anything like this?  Any possible causes?  Solutions?  Help?
8 Responses
Avatar universal
thoracic degenerative disc disease you wrote. Is there any nerve issues with this that could be causing the pain? It is the general area you are talking about. Have you ever had an emg done to see about whether a nerve is invovlved?
Chadry
Avatar universal
Yes, I've had an emg and it didn't show anything remarkable.  I have a schmorl's node in the area of my pain - the ddd is in the same area.  With the lower lung bases, that is also in the general vacinity as my pain.  But, they say it can't be that.  I think the docs I see up here don't believe that DDD can cause this much pain or smothing.  Any help or just talking would be appreciated.  I don't know where to turn - I've basically just given up on ever figuring it out.  I've been to so many appts. that I don't really want any more - I can't take the disappointment!  I go see a specialist because they think maybe.... then they drop me like a hot potato because I don't fit the "typical" findings.  My pcp told me I really need someone to take all of the pieces and put them together to figure it out.  But there is nobody around here that has the time or desire to do so I guess.  The docs don't even talk to each other.  They send reports of their findings and that is all.  My endo doc told me I need to have one point of contact doc to work ont his because I have so many things going on in different areas - I need someone to look at everything and try to figure it out.  Sorry to blab on and on.... I'm so frustrated
Avatar universal
Don't be sorry about anything. It really does sound like you need one doc to work it all out. There is just too much going on. DDD can give you alot of pain. I know. I have it. It really is the pits. I am not quite sure what everything is that you have but your life sure can't be no picnic. I just love when you go to a doctor and try to tell them what you are feeling and they just say things like well you are just going to have to live with it or it doesn't look that bad, but you know you are having alot of problems. I know I had to deal with workmen comp docotrs and they just love to tell you there is nothing wrong and go to work. Now one doc wrote his report for the judge to read about my case and said this was all a pre existing problem and that is was mildly aggravated by my injury. Well that was news to me because I never had any problems before with my back or neck before my injury. He wrote that i have DDD and that i can still work but I need to avoid a job that requires bending, stooping or sqautting. I have not worked in over a year because i lost my job due to my injury. I am still trying to figure out what kind of job I can get that does not require doing some of those limitations on a daily basis.
Oh well we all need to vent sometime. i will check back and see how you are doing. Yeah it is hard to imagine why you would be depressed.
Take care,
Chadry
661638 tn?1249689331
Well it may make you feel better to know that i am 24 and just had a discogram finding at least 3 torn discs( probably ddd). The pain will go down my legs, around my hips, and from epidurals ive had my period for 2 months straight!  
I had had this awful , uncurable pain for three years before i found a doctor that finaly (maybe) found what is wrong with me with a few simple MRI's. I went to a Pain Management clinic, reffered by my neurologist that just didnt have any answers for me anymore. He had also suggested to me that I gather up all my tests, their results, and send them to well known or respected doctors accross the country. ( sometimes the medical colleges will look at these medical mysteries to try to find a connection, same with holistic dr.'s and eastern medicine types) I never had to do that, but it is an idea. The pain clinic guy really is working hard for me, so if you havent tried that yet, do it, get allllll of  your previous records from every dr and bring it with you.
I also have a book that has helped me some. Days where i just dont think i can take it anymore, realizing i will be in pain for the next 60 years of my life, i read it and it helps to realize that state of mind and stress really effect the way we feel pain. And NO pain is in your head like they say. It can be that since you are so stressed your original pain is made worse, but nothing is ever made up that badly, check this book out ( try amazon they sell used coppies)  and do a search on the internet for the gate effect? it deals with how our depression and stress level will actualy make our physical pain worse. i have learned a lot in the last few years on how to deal with this and we all have our weak moments, or weak months :) mine is now too, so i wish you all the best and hope maybe any of my suggestions may help you a bit.
Trista - "10 simple solutions to chronic pain - how to stop pain from controlling your life" by Blake H Tearnan, PH.D. ( he runs a clinic in nevada for chronic pain sufferers and all of his tips are things my pain psychologist has me do to help me work through flare ups and to feel better about the life i have now)
Avatar universal
I am 32 years old and understand how you feel.  I have chronic back pain that is sharp and achy that runs from the top of my neck to the bottom of my feet. I was born with an extra vertebrae, two of my vertebrae in the middle of my spine never split as they should have when I was a child, and I have been diagnosed with DDD.  I used to have a semi-normal life with a good job.  Now I feel helpless because I am currently on long term disability awaiting word from social security disability.

I went and saw an orthopedic (instead of a neurologist) and supposedly was a perfect candidate for the “NEW” implant called the Charite’ artificial disc in my L5/S1 joint.  This particular joint was bone hitting bone because the disc had disintegrated.   This procedure and disc was supposed to cure my pain and problems while keeping the joint in normal motion.  It was going to have less recovery time and I could have my life again.  I fell for it like a dummy and had it done.  The operation was done by cutting me across my belly to insert the disc.  I hurt for 2 weeks from the incision but then, my back started hurting again.  As said in this forum before…Every one I went to for help stated everything looks fine and the disc looks good as if it is in place.  I have seen several docs and they all say the same thing.  I live in NC and went to Duke University to see the head doc over neurology.  He said the same thing and was such an *sswhole.  

Now I go to a specialized place for spinal problems for pain management now.  I have had several injections which have never worked.  Since going to this place, I now have a spinal cord stimulator that sends impulses beginning at my lower back, down the back of my legs, and to the bottom of my.  With this implant, I cannot have another MRI.  It helps but the pain is still there and I am like you and not sure what to expect next.  

I am so tired of the pain…
Avatar universal
Thanks for sharing your stories and the kind words and suggestions.  I will continue to investigate the possibilities and try anything there is.  It is just so frustrating that with all of the medical advancements out there nobody can help us!  I've never been one to want attention or thrive on the attention so I don't believe it is in my head.  I do have a lot of medical problems but I guess it could be worse.  I just want my old life back.  It has definitely affected my life in a bad way and I'm a fraction of the person I was before.  My house was always spotless!  To the point of being rediculous.  I did so much for others and enjoyed my life.  Now, some days I just struggle to get through the day.  Without the pain meds, I wouldn't be here.  Thank god my PCP knows and understands me and believes my pain is real.  Some docs up in Maine don't even believe in DDD - which is very sad for anyone who has it.  We are so limited really in specialized care and with my health insurance, I can't go outsidethe network to be covered - can't afford the care elsewhere.  I've tried about everything out there except the spinal stimulator - I got approved for one, but was told that the location of pain would be difficult to treat and it may not even work at all.  I opted not to do it.  Then I came across polymyalsia rheumatica (whcih my grandfather had) and I'm on prednisone now.  It doesn't totally fit the whole presentation I am having, but neither does anything I seem to have.  My doc says I'm a mystery.  They can't even figure out why I have the secondary h yperparathyroidism.  So.... why should this be any different I guess.  Anyway, the higher doeses of prednisone were great!  The first week (being on high dose - which tappers off each day) I felt great and even didn't take the pain pills hardly - I was able to function like before, do anything I wanted, and actually felt great!  But by the time it was down to 1 pill a day, I was right back.  Unfortunately you can't take that stuff on high doses for long, so I'm on a lower dose in the hopes that over time it will lessen the pain.  Oh well, we'll just have to see what happens.

Thank you all so much for listening.  It is nice to have someone who undrstands to talk with.  I feel so alone and isolated (even though I have a wonderful family) but I hate to burden them constantly about my problems.  I feel it has been going on so long, they really don't want to hear it any more and I know they try to understand, but they really can't.  Know what I mean?

Well, again thank you so much!!!!!!!!!!!!!!
Avatar universal
Well at least that is all of can do is have someone to talk with about all the **** that goes on. I know what you mean about complaining about being in pain. i think to myself sometimes that if i was everyone i would not want to hear it hear all the time either. Sometimes I get on my owm nerves with it. LOL.
I have a great family too but I know that do not really understand how i feel all the time but they do not push me to do anything i can not do. I want my old life back too. I used to do so much everyday. Now if I get a little bit of anything done I feel like i accomplished so much. My house used to be very clean also. I remember that Sundays were our cleaning day that we got together and got things done. well most of the kids are out now so i decided that i was going to try again today. I am now sitting here in so much pain from doing so little. I miss my old life. I put my music on and started out like i used to do, that was short lived but the little time i was able to do it made me feel good.
DDD is not a fun thing to have. By the way I am about the same age as you. I am 47 and sometimes I walk like my 85 year old Mother. We limp around together sometimes.
Take care of yourself and come back and post again.
Chadry
Avatar universal
Thanks for sharing your stories.  It does help to talk about it - doesn't make the pain go away, but makes me feel better.  Atleast I am not alone.
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