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Somebody help me, this pain is killing me!

From: lcg27526 - on 07/29/2010 4:05pm

Hi,

I am new here. I have been looking at letters people like me have written and finally I know I am not alone in my pain. I am 50 yrs old, have digenerative disc disease, spinal stenosis and arithritis in my lumbar spine, L3-L5. I have been dealing with this for 10 years and the pain is through the roof. I went to a pain management doctor for several years and went through many procedures, such as, epidural shots, nerve blocks, RF procedures. These would give me some relief, but gradually the relief only lasted a couple of weeks and that doctor basically told me we can continue with these procedures, but I can't promise you any better results. I went to a neurologist who did a new MRI and nerve conduction study which showed increasing digeneration in my lumber spine and no nerve damage. My pain is never below a 7 on a scale of 1 to 10, and that is while taking 4 to 5 oxycodone per day. By the time it is 7pm at night I am in tears I hurt so bad. And this is without doing anything more than walking my dog once in the morning and walking from the couch to the kitchen to the bedroom. I went to a spine surgeon on Tuesday and they are going to do a discogram next Friday on my L4-5 disc, which shows completely black on my MRI. I am hoping this will show what my problems are coming from. My neurologist has been trying to find a new pain management doctor for me with no luck. All the pain management doctors tell me they cannot do anything more for me and send me on my way. I feel like I am losing my mind!! I have no life, much less a quality of life. I am very lucky I have a great husband that rubs my feet when I am laying there crying and screaming from the pain. I cannot live like this for the rest of my life, something has to change!!!! The surgeon said that he may be able to do a spinal fusion on that disc to take care of the pain, but he said that is not guaranteed. I am hoping for some good news next Friday after my discogram!! Can someone out there please give me some hope????? lcg

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on 07/30/2010 11:26am

Hi, Icg. I am new here as well. In fact, I joined up because while just looking around for anything new on Arachnoiditis, I found your post. I, like many others, know exactly how you feel, and sometimes, hope is hard to come by.

I won't bore you with my details... don't talk about it much anyway... suffice to say, I know exactly how you (and your husband) are feeling, but you've already got the greatest aid to learning to live with this. Someone who loves you and stands by you.

One thing I have learned, is that all things change. There is little medicine can do to help you, because the knowledge just isn't built up enough yet. But your body will constantly strive to heal itself, and all you can do is help it the best you can. Nutrition is very important (though often difficult to maintain, I know), as is exercise (when possible). Myself, I can't exercise... can't do yoga or tai-chi or anything like that, because any muscle stretching starts the spasms and cramps. But, I can gently walk my rescued Greyhound (he is very gentle with me), and when the weather and my body both permit, some gardening.

The most important thing for me, was mental change. One literally has to change one's mind. I know I shall have to try to find better words for this concept, but imagining your body healing while doing gentle breathing exercises and light meditation is what I mean. Actually learning how the body works... imagining in the mind, the extra oxygen in the blood, the blood flowing to the painful areas. Actively thinking about relaxing the muscles. It takes time, it takes some work. And I am getting much too wordy.

There is hope, but it lies within you. And you have much more strength in you than you believe you do.

Let me give a quick summary: 1978, broke neck, didn't find out about it until; 1990, had surgery, fixed neck; 1994, rear-ended in car accident, undid the surgery; 1998, progression of diseases in back + stubborn refusal to accept limitations = suicidal despair and dear wife learning to use internet to finally find me a pain doctor; 1998 to 2005, mostly in bed on increasing doses of pain meds, examined at four different pain specialty clinics, seen by countless doctors; 2005, finally diagnosed, no treatment, no cure, took matters into my own hands and weaned myself off ALL the pain meds; 2006, began gentle exercise and progressively longer dog walks to build up muscle strength; Present, I'm still in rough shape, the pain is constant, can't work, can't play, BUT... every day, I can get up, dress myself, can walk the dog several blocks if the weather lets me... I can cook an occasional brinner, and I'm tearing up the miserable excuse for a front lawn and turning it into raised flower and vegetable beds with a slightly Japanese Garden flavor. I recycle our waste and make my own compost, and can even drive the car once in a while. I only use Ibuprofen now, plus a few herbs, and plenty of water.

It's much better than it was, and most importantly, there is peace and joy in the house again.

It will be so for you as well, but it will take time and adjustment. I hope this helps, I have subscribed to this discussion, in the event you wish to communicate further. Hang in there.

Rei

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on 07/30/2010 12:49pm

Dear Rei,

Thank you very, very much for your advice. Yes, I am very lucky to have such a wonderful, caring husband. My biggest fear is that he will finally get tired of all of this and leave me. He says I am being silly and he won't do that. I am trying to be positive and help myself to heal. I took biofeedback lessons years ago to deal with migraine headaches I have had since 17 yrs old, so I am able to do relaxation and meditation exercises and they do help. I have realized by reading on this site that I need to adjust my approach to my schedule to taking meds and any activity I feel I need to do that day. I am going to do any activity in the morning when I feel my best and my pain is the least, and rest in the afternoon. I am also going to change the schedule I take my meds. I used to take them evenly spaced throughout a 24 hour period, but I am thinking I need to see if I can take less in the AM and more in the PM, when my pain increases a lot. Hopefully this will help. Can anyone out there tell me if they have tried something like this and if it helped them.

Rei, I think it is amazing that you have been able to completely stop all pain meds and deal with life without them and any other help. It does give me hope that if all the doctors continue to tell me they cannot help me, that I can somehow figure out how to live with this. I have been dealing with pain in one form or the other my whole life (long story, won't go into), so I can take a certain amount of pain, but sooner or later the body says "Okay I have had enough of this, go on if you want to fool but I am not" , so yes is guess I am stronger than I realize at times. This level of pain is new to me and I realize that it is mentally exhausting as well as physically exhausting. So I need to get my mind straight as well. Thanks for the advice and I will take it to heart. If anyone else has any advice for me, please share it with me!

Grateful for any help,
LCG27526

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on 08/02/2010 9:30pm

ICG,

The Discogram they will inject a dye into your intervertebral disc and if it is the culprit should create the same pain you feel on a daily basis. If there is really no pain then that disc is probably not the problem....but usually a severely degenerated disc is pretty easy to spot on MRI and they might just do a Discogram for insurance purposes or just to make sure (liability is a big thing in medicine today!) At any rate some sort of interbody fusion would probably be the recommendation, so you can look into ALIF's, TLIF's, PLIF's, etc. Alot of times this is also accompanied by pedicle screws and rods to stabilize that level of your spine while hopefully your fusion is occuring...it can take 6-12 months or more for that to occur. This site has great research topics and you can find out what's in store for you there or just look up some videos on OR Live or Youtube or something if you'd like to see what they do. Best of luck.

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on 08/03/2010 9:45am

Hi Iam charlin joseph 30 years old. Just listen my story and you will feel that miracles still happens and also you could come out of the pain too. Nothing is impossible.Iam really sad for your unbearable pain but i know what you are experiencing with the pain since Iam a patient of Ankylosing spondolyssis. I was suffering from this disease from 15 years but all this years pain will come and go but it was never permanent. However in 2008 my entire life was changed I was diagnosed first time for ankylosing spondolyssis. The pain was so unbearable and also there is no treatment available in india. Though i work for a US company that time I could visited many rheumatic doctors but they just answered that there is no medicine for cure this disease as of yet. They advised my remicade injection which is a TNA blocker for controlling the inflammation. My spin was tottaly stiff and it was abnormally bulged . Simply i could not move , I was so upet that everyday i go in internet for search any cure for this disease. Day by day my disease worsening. Then i decided that i will discontinue alopathy and will go looking for any cure in any other medicine.

By merciful gods grace i met one Homeopathy doctor in India itselt who is a researcher. After taking only 5 months medicine my horrible pain was stop at once.all the inflamation is tottaly controlled.
A man who could walk for 1 year walking. I have not gone any surgery. And the good part is it has no side effects.
So kindly if u feel any assistance regarding this same doctor kindly consult.

thanks
kevinjoseph51@gmail.com
91+9043577630

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on 08/03/2010 11:47pm

I have all of the same back problems and arthritis that you have. Also was suggested to me to have a fusion. When I said "no" was suggested I get the injections. My mother went through that for years with minimal, short time relief. I was always very active. At 62 I was using a cane part of every day and taking narcotic pain pills. In desperation, I remembered that years ago I had attended a conference where an physician who was an arthritis specialist said that years of research were in and that glucosamine and chondroitin definitely rebuild cartilage and help with inflammation. I had taken the pills off and on for a few years, but I don't think they really got into my system. On a walk through a pharmacy one day, I noticed a bottle of liquid Glucosamine, chondroitin and msm. I thought what the h_ _ _, I was in so much pain that I would try anything short of surgery. I can't swear that this was what helped, but after about 2 months I was using the cane less, almost never after 6 mo, now I really don't know for sure where it is! Don't get me wrong, I still have pain and always will, but it is tolerable and I can walk. Also "stretch, stretch, stretch". Stretching will be painful at first but stretch as far as you can and hold it as long as you can "don't bounce your stretch". Hope this helps.

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on 08/04/2010 12:22am

I would not do a discogram?Doctors dont even do them anymore cause they actually cause more problems then cure them.My neurosurgeon told me that when I had a discogram done by another dr that they actually can tear the lining of the disc and make things worse.Just listen to how it sounds if they inject die into the disc through the needle hole they put in your disc.The needle hole alone will cause a tear and where does the luquid go through and out your already torn disc,which it turn makes the tear bigger.It's only common sense and I would love to hear anyone even in the proffesion argue that. I have same problem.I am 8 months out of 2 level lumbar fusion.My pain is exactly the same as before the surgery but my leg pain is waaay worse now.I dont understand a Dr that would leave a disc space the way my l5 s1 disc is in the pic.As you can see my doc got the spacer beetween my l4 l5 space and was able to get the bad disc out of that area as well.But the l5 s1 space he was not even able to get out because it was crushed so bad.Now from what I have researched when someone has crushed disc that bad they go in from the front and the back but my doc only went in from back. I am positive that is why I still have the same pain as before. Also he was only able to get 5 screws in my spine instead of 6. He said if he would of put the 6th screw I would be paralyzed on my left side??The 6th screw woulda crushed the space worse and caused more damage.Anyhow I feel these dr's most of the time know they wont be able to help you but they have to maintain their bottom line.it's all about the $ Benjamins and we are the victims.We go through these useless surgeries for the benefit of no one but the dr's wallet and hospitals quota.I have seen 2 other dr's since surgery which one said he would of went in from front and back and the other said I wouldnt benefit from any surgery and he would of never done surgery on me in the first place.He said he would of told me to get on long acting pain medication and that would be the rest of my life.So I went through and suffered like you for absolutely nothing at all but more pain and stronger meds.I have been thinking about suicide a lot lately and dont know what to do.I hate living like this in severe pain allday and night.I cannot sit and watch a movie with my wife or sleep lying down flat I have to lay on my side at all times.I have severe burnig pain in lower back allday and night and severe burning down the back of my legs.Everything seems 3-4 worse since the surgery and thats why I put it off for 10 years.I was in a bad bike accident 12 years ago and was told then I needed 2 level fusion.Well I was 24 at the time and was to afraid of fusion.By the time I turned 35 I could barely walk or sit at all.I take 4- 80mg oxycontin and 8- 10mg endocet a day and still I suffer horribly.Doc says all the same stuff,I will heal with time and yadda yadda yadda.They are all crooks if you ask me.As soon as they operate on you they are done forever with u.Atleast my doc was.Anyway has anyone else suffered like this or had the same kinda problems as me out there and wanna comment.Thank God I was able to find the greatest most understanding Pain management Dr in the world and he has made my life somewhat better.Atleast with the meds I can get some things done and have somewhat of a life but without them I would find the 8th level of parking garage delightful:)GOD BLESS..

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on 08/11/2010 8:05pm

Dear Icg,

My name is Bradley, I am from Michigan and I am 27 years old. I hurt my back a little over 10 years ago. I hernoated L4-L5 and bulged S1-S2. I had a laminectomy on L4-L5. It never got better.
So the past 10 years I have been doing pain management. Well lets just say over the years my back got WAY worse. Now I have spinal stenosis, arthritis, & herniated disks from L3-S2. So i have seen multiple doctors over the years and not 1 referred my to a neurosurgeon. Until Now. I had to run to the bus a 1 block slow jog and My back pretty much gave out on me.
I went to the surgeon yesterday and now I have a surgery date for the 23rd of August. So I got in a little less than 2 weeks. He is going to do L3-S2 and he is going to do a Pedicle Screws and rods. I am scared spiritless.
I know exactly how you feel. I cannot even walk to the bathroom without taking a break sometimes. I have to ride in a wheelchair or a amigo. Which is embarrassing because I am only 27. I cry all the time as well. Have you tried Methadone? I love it.I have tried Oxycontin, but personally they don't help me. I have been on methadone for 5 years now and I don't want to take anything else. The methadone is a miracle drug. Before I injured my back more 2 moths ago. I would take my dose of methadone and within 20 minutes my pain used to subside. My pain was at a 8 at all times before I would take the methadone. After it would kick in my pain scale would drop to a 5. Which is a tolerable number. Now my pain is at a constant 10.
My doctor has cut me off my Methadone i have a few left. But the reason she cut me off is because I failed the test for Marijuana. I failed 1 drug test in the past 10 years. So now I have to try to find a new doctor to prescribe me my pain meds before I have surgery on the 23rd of August. While in the crazy predicament I am in. I am in to much pain to look for a doctor. I have been going to this doctor office for 2.5 years. I don't like to start over again.
Good luck and god bless you. I hope everything works out for you sweetie.
I can so understand where you are coming from. We are in the same boat here. And I am sorry you have to deal with this. Your best friends after surgery are close friends, support, pain meds, and & the word of God.(if your religious)

Sincerely your new friend,
~Bradley S.~

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on 08/12/2010 11:16am

I just wanted to update you all on my situation. I had my discogram last Friday. It was a success in that it identified for certain that L4-5 disc is the case of my pain. I am very lucky I have a great doctor and nurse helping me. The discogram was not pain free, but I did not expect it to be. I made it through and now I go to my surgeon tomorrow to discuss fusion on that disc. I will keep you all informed.

Bradley, thank you for you comment. It is real bummer that you failed a drug test. I could not even think of taking anything that would jeopardize my recovery. And by that I mean, my road to getting past this very painful place in my life, through the help of very talented doctors and nurses, and being able to exercise once again and continue to lose the weight I need to lose to be healthier. I know that if I do not do what they tell me to do, that they will not and can not help me. I think we all need to remember that we are part of the solution to getting better. Along with the help of family and friends, Our doctors can help us if we will also help ourselves!! I feel very blessed to have the help of the doctors I have and hope to say that very soon I am on the road to getting past this. Or at least getting to a place where it is managable and I can once again rejoin the world of functioning adults!

Thank you all and I will stay in touch. You are all great sources of hope and information.

lcg27526

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on 08/15/2010 11:37pm

I can almost repeat what all you said!! I refused the oxycodone and only take Norco for the last 4 years but they no longer work and my condition of the spinal stenosis, 2 herniated disks, arthritis and DDD has gotten worse. With no insurance, no one would touch me as far as a specialist until recently when I finally qualified for SSI then was able to see a specialist. I have made so many trips to the ER, it isn't even funny. I can't walk from room to room and all the other things you talked about. The pain is unbelievable like you said. Reminded me of being in labor!! But was constant and debilitating. The specialist did another MRI, (the last one was 4 years ago when I had insurance) and said we are doing an epidural right away then surgery. My thoughts and prayers go out to you but just wanted to let you know you are not alone. Will write after I have all this done and if it is better, will let you know to suggest you do the same. Take care and God Bless.

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on 08/23/2010 2:12pm

Hi, I am 61 years old, and going thru the same as you. My MRI showed that there is a right paracentral disc extrusion which extends superiorty and is impinging upon the right L4 and L5 nerve root. This is causing terrible pain down my right hip and down my thig. I also have arithritist in my spine. I live in Ohio and the doctor here did a Epidural Injection procedure on me one time and it lasted for a month. I moved to Indiana and the doctors there did the same procedure on me three fridays in a row and it lasted for a whole year. Pain free omg I thought I had my life back until recently when all the steriods of that procedure wore off. Now I have been in severe pain again. I go to the hospital tomorrow here in Ohio again ( A different one than the one I went to previously.) Hopefully, they will help me because this pain if running me crazy. I hope the best for you.

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on 08/23/2010 4:22pm

First i'd like to say i feel bad for u, I'm in your shoes since i was 34 , i've done therapy,injections(pre and post),hardware block,nerve blocks,pain meds,sugrery, everything out there accept for the spinal cord stimulater that i'm told will be the best thing i can do for the pain world i live in, if not anything else it will help with my leg and feet pain that stops me from everything. i'ts been 4 years and counting since my work accident". Surgery didn't work for me, but a few people i know it has, but i also know other people that only made things worse. I wish there was a way to tell if you are the one of the people surgey is for, but it is only a 50/50 and a roll of the dice. I'm going to be 39 next week and i wish i was dead already, I can't belive that I will have to live the rest of my life like this, I have lost 4 of the most important year of my childerns life. My younest just turned 19 and my oldest turns 21 next month. every day i wake feels like it can be my last. My advise for u is, The choose is yours dont listen to the doctors listen to other people you know that have had these procedures and belive them when they give you good and bad of what u could be faceing. Sugery may not be the answer,Start small and save the big one(SURGEY) for last. Good luck my friend, my heart go's out to you on your journey. and sorry for my spelling and pung.

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on 08/26/2010 2:04am

Hello LCG

I am new here also and have been sick x 25 years with hip dysplasia and now for the past five years with ddd and unable to work for past three years. I think that you can do something else and that is to ask your doctors to try new pain medicine. I tried oxycodone and that whole line and it made me really sick to my stomach and didnt do anything for pain. I also had bilateral shoulder impingement and had a surgical procedure and was then having to deal with post operative pain and increased back and hip pain, and my doctor put me on morphine and a Fentanyl patch. Those have worked well for me, and yes, there were times when I had to call the ambulance because I had a herniated disk or bulging disk episode but the meds work well for me. True, ive gone to 100 mcg in three years but that's what I had to do to take care of the pain. Since Im in Canada, I want to apply for medical marijuana but don't smoke it unless you get a license and can do it legally. Some people are in such pain that they opt for that to see if it will help and then they inevitably fail an unnannounced drug test and then have problems, further complicating their lives.

So there are things to do. Again, only you know what your pain levels are and doctors are notorious, according to studies to UNDERTREAT pain! They don't know what your pain level is, and neither do I, only YOU know and you have every right to live without excruciating pain. And someone was criticizing me somewhere in an earlier post for talking about pain meds, but some people DO need pain medication. As I said before we would not make a judgment about a cancer patient and deny them pain medicine, would we?

Also for Mr. Hook, who responded to your Comment, I hope that you know that therapy is very helpful. I know that for some people this is a perceived sign of weakness, but when people live with chronic pain, lose their ability to work, lose their partners, lose their social lives, because they are unable to move and are in pain and suicidal or thinking about ending it, therapy can be a very helpful treatment modality. I know that it has helped me.

I wish you the best, and remember that there are always other options and speak to your pain specialist. I was on at least five different pain medications before we found two that worked really well for me, and I'm sure that you can also. Of course, i suffer from horrible constipation, but I would rather have to deal with that then to be in excruciating pain all day long.

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