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Old 07-28-2009, 04:48 PM   #1
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Severe lower back pain. In need of help! Please advise...

Hello,
I'm new to this forum. I've been reading around and this place seems to have the most helpful people, so here I am.

I'll try to keep this post as short as I can. I apologize in advance, I like to be as thorough as possible so I don't miss something important.

I was 25 y/o when i injured my back. I am now 36. I was just told I have done everything that can be done and I should give up and keep doing what I'm doing. The problem with that is I am stuck in bed 90% of the time and in terrible pain.

What brought me to this....
Basically, I hurt my back in 1998 while at work. I continued to work with an undiagnosed, shattered L5/S1 disc. In 2000 my legs started to go completely numb and the back pain was much worse. Which led me to an emergency back surgery (Discectomy/Lamenectomy L5/S1). It didn't help with the pain so I was started on pain meds.

11/00: The pain was much worse and they discovered a possible infection in the disc space where they operated. I was put on an iv antibiotic for 6 weeks. Pain continues...

06/01: A second surgery (Microdiscectomy & biopsy). This didn't do anything to alleviate the pain and after this surgery I started noticing a burning/cold pain from my chest down to my toes.

04/02: A third surgery was recommended for the pain. I was told I had a 70% chance of improvement. So I went ahead with it. (spinal fusion + cage). I didn't see any improvement.

02-05: I continued with various procedures such as injections, physical therapy, continued on meds (7.5/325mg Percocet, 100mg Duragesic patch, 325mg Soma, 10mg Ambien, etc)

06/06: I had a Dorsal Column Stimulator test implant. The test unit did help with some of my back and leg pain. The final DCS was implanted, but once it was implanted I didn't have the same results. I would say it went from helping 50% to about 20%. They told me it could be the way it healed or because of my scar tissue.

06/09: The pain continued to get worse, the meds are less effective.


The pain management doctor mentioned I should have a Discogram to get a better idea of where the pain is coming from. The problem now is my worker's comp insurance is saying I've had too much done and they are not agreeing. They set up, yet another, IME and that doctor told me I shouldn't have anything else done.

I have also been told there is a possibility the screws from 6 years ago might be causing some of the pain. I can't have an MRI because of the DCS metal leads and battery. Another doctor mentioned most spinal fusion surgeries never last more than a few years. I'm not sure if it would have changed anything, but I was never told that prior to my SF surgery!

I'm in a lot of pain and the thought of it not getting any better or worse even is really making me frustrated and sad. It was also suggested that I may have RSD or fibromyalgia possibly caused by the original injury or one of the surgeries. I have really bad burning sensations all over my legs and my entire back. My muscles constantly ache and I always feel fatigued. I'm constantly having to cancel my aqua therapy sessions because I'm in too much pain to actually make it there.

I'm not sure if anyone has any ideas, but if so, I'd like to hear them.

Thanks,
Matt

 
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Old 07-28-2009, 05:59 PM   #2
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Re: Severe lower back pain. In need of help! Please advise...

First of all Welcome to the Pain Management board and you will find a lot of helpful people here. Second, I don't quite feel so bad now that I read your story (not to make you feel worse). I am just about the same age (35) and I've had chronic pain in my feet for 6 years and taken pain medications for 5 of those years. I am currently considering the spinal cord stimulator.

Anyway, back to you it seems like you probably have failed back syndrome and the best thing you can do is manage the pain. However, never give up hope and you can still search for anything possible that might help (surgery, treatment, etc). You did not say whether you have ever had any epidural type injections/trigger point injections, etc. These can be effective for some types of back pain. I guess the first thing would be to get the SCS taken out so you can have an MRI done. That is one things that scares me about getting one and also you can NEVER be defibrillated with one in.

Have you ever been on any of the nerve pain medications (ie. Lyrica, Neurontin, Topomax, Trileptal, Cymbalta, etc?) These can sometimes be more effective than the narcotic type medications. You might be at the point where only a pain pump will help. This is an implantable pump made by Medtronic that is put in and delivers either morphine, Dilaudid, or fentanyl to the intrathecal space in your spine. It is a last resort option for people with severe chronic pain but I have seen it help a number of people. You might want to do some research and ask your doctor if it might be right for you. that's about all I can think of at the moment. my wrist is starting to kill me (carpal tunnel)

brian

 
Old 07-28-2009, 09:13 PM   #3
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Re: Severe lower back pain. In need of help! Please advise...

Brian,
Thanks for replying. I actually keep the SCS on 24/7 now because when I turn it off my leg pain gets really hard to tolerate. At times I will also turn it very high to try and take my mind off my back pain. I know it sounds like I am trading one pain for another, but it gives me a short break from the usual pain. I think I need it for my leg pain though. I had no idea about not being able to be defibrillated though. That kind of scares me...

As I mentioned for 02-05 on, I did have quite a few injections over the last few years. They've been referred to as many different things so I'm not sure if they are all basically the same or not. Epidural, SI joint injection, Left SI, Steroidal injection, nerve blocks. In all I've had about 15 and not a single one had given me any noticeable relief. A few of them in fact gave me intense leg pain.. luckily short term.

As far as nerve meds, I am currently on Lyrica 25mg (in the AM) and a 75mg (in the PM). I really don't notice any difference with them so I'm not sure if I should even bother continuing with them.

I have also tried Neurontin & Cymbalta in the past without any noticeable change in pain. I am always willing to try anything that might help.

The only concern I have about the pain pump is that I don't tolerate morphine too well. I get a lot of nausea with it and I am already taking 100mq of Fentanyl with the Duragesic patches.

I am currently waiting for the pharmacy to fill my prescription for Nucynta 50mg, but from what I have been reading is doesn't sound too promising. I will try it with an open mind though.

Is the pain you are feeling in your feet related to a spinal injury? I hope you can find something that helps you as well.

Matt

 
Old 07-28-2009, 11:30 PM   #4
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Re: Severe lower back pain. In need of help! Please advise...

Welcome Matt,

I agree it sounds like Failed Back Surgery Syndrome. Alot of us have it.

My pain is pretty bad and I have not gone through half of what you have with your back. All I do is keep on trucking. I'm on the Fentanyl patch and Percocet every 4 hours. Sometimes I can go longer then 4 hours and other days under 4 hours.

I tried the shots last year. I did the Epidural, Facet and Radio Frequency. It didn't help. Then after my last MRI showed Stenosis above the fusion and another bulging disc, my Dr. sent me back for more shots. So far I had 2 epidural and one Facet. They may have helped a tiny bit for a day or two. Those Doctors seem to think that is good.

I've also been doing Aqua Therapy. That may be helping a little. When you are in the water it is great. Once I get out then a little stiff. When I was doing that with seeing the therapist I think it was better. But my insurance stopped that.

My post sounds kind of depressing which I didn't mean to do. Just wanted you to know you are not alone.

I think you have to keep trying whatever you are able to. Never give up. I have to hope that there is something for us. I'm 44. I had back pain since I was 30. Had the double fusion in 2006 for Spondylolethesis (sp?). They also took out a disc (Discectomy), Laminectomy. Since then it has been bad. Could not go back to work. Fighting for Social Security since March 2007.

Things sound like they are at the bottom of the barrel but I still have hope.

I think you just have to have hope even when it is hard and keep trying.

Again, welcome. Hope I helped a little.

 
Old 07-29-2009, 08:56 AM   #5
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Re: Severe lower back pain. In need of help! Please advise...

You may want to get a lawyer to fight WC for the needed tests. I don't think they can't say no to you unless you've reached MMI. (Maximum Medical Improvement)...

I don't know what to tell you about your back issues, except, keep trying to find THE procedure/process that helps. Even if it's a momentary respite from the pain.. just keep trying.

I just received my script for 100 mg nucynta last night. I was on 10 mg vicodins, three times a day.. along with neurontin, soma and celebrex (and Lunesta to sleep). I took my first pill this morning and so far so good. So give it a shot... it may help.

 
Old 07-29-2009, 12:53 PM   #6
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Re: Severe lower back pain. In need of help! Please advise...

Hi and thanks for taking the time to reply. It does help to know there are others in my condition that still have hope. I was hopeful until the point when the doctors told me not to pursue anything further. I really can't do many of the things I enjoy anymore. A few years ago I bought a new digital piano and haven't been able to sit to play it more than a handful of times because of my back pain. Not to mention all of the more active things. I lost a lot of friends and a my girlfriend of 7 years because of this. All of that combined with my pain really takes away one's hope.

I'm also frustrated with all the surgeries and as much as I dread the thought of going through anything like this again, if it helps reduce my pain I would do it in a heart beat.
I was never followed up on with my spinal fusion because the surgeon left the practice and other than having the staples removed and the site looked at by a nurse practitioner, I have been alone on this.

I haven't been able to work for 11 years now and I'm stuck at $77/week from W/C which will never go higher despite the cost of living increases and since I was only 26 when I stopped working, my SSI is only $600/month, then I have to take out $100/month for Medicare. Money isn't my motivation for pursuing relief though. I would give every cent and belonging to get rid of this pain, but I feel useless not being able to do anything and be stuck in bed all the time.

I know all of this does cause depression and finally after a few hearings the insurance company has agreed with this. Unfortunately I can't take any anti-depressants because I have side effects with everything I've tried so far. If I could get some relief from the pain I know it would go away.

I am pretty sure I do have RSD which can intensify other pain. Unfortunately there isn't anything to do about that. It just feels like there is something really wrong with my back and the doctors aren't finding it. The weird thing is when I put a couple fingers on my surgery area and push hard, I feel a little relief. Is that normal? The doctors and surgeons don't seem to think anything of it.

I hope your situation improves. I really wish they would have some breakthroughs in pain management and especially in back pain. It seems like so many people are in pain and the surgeries are still pretty barbaric and only provide short term relief from what I can gather.

Matt

 
Old 07-29-2009, 02:04 PM   #7
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Re: Severe lower back pain. In need of help! Please advise...

Quote:
Originally Posted by spoonmanx View Post
As far as nerve meds, I am currently on Lyrica 25mg (in the AM) and a 75mg (in the PM). I really don't notice any difference with them so I'm not sure if I should even bother continuing with them.
The only concern I have about the pain pump is that I don't tolerate morphine too well. I get a lot of nausea with it and I am already taking 100mq of Fentanyl with the Duragesic patches.
Matt
Matt,
That dose of Lyrica is quite low. Usually the normal dosage is 150mg-600mg. I was taking 600mg for over a year and it was just too sedating so I decreased it to 450mg/day which I take all of it at night before bedtime and it seems to last throughout the day as well. There are times when i will take 1 pill around 8pm if the pain is bad enough but I usually take all 3 pills at night when i get home from work.

I know exactly what you mean by losing your girlfriend, My ex-wife who I was with for 11 years left me partly because of my physical problems and the limitations that I was having. I ended up having a nervous breakdown from the pain and that is the point when she left me.

As for the pain pump, the medications are directly pumped into the spine and it is completely implantable just like your SCS. There are other medications that can be used besides morphine but this is what they normally start with. You dont' have the same side effects or not nearly the same side effects because the drugs are pumped into the spine directly and don't go through the digestive system and into the bloodstream. So alot of the drowsiness, dizziness, tiredness, blurred vision is not even a problem when you have the pain pump. Plus YOU WOULD NOT BE ON THE DURAGESIC anymore. The pump takes the places of any and all oral narcotic pain medications or the fentanyl patch too. It also takes a micro percentage of pain medication to treat your pain effectively because it goes straight from the intrathecal space in your spine to your brain, there's barely any waiting process. You should definitely check it out and research "MEDTRONIC PAIN PUMP" OR "MORPHINE PAIN PUMP". good luck.

brian

 
Old 07-29-2009, 03:48 PM   #8
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hessie28 HB Userhessie28 HB User
Re: Severe lower back pain. In need of help! Please advise...

Matt, it's not easy

After my surgery I was forced to take a disability Retirement. I had been there 22 years so I get a small pension. Someone today asked where I worked. I mentioned I was offically retired due to my back. He said "Congratulations". So I said, I would give it all back to be able to work again. It's the truth. After 22 years I was finally making good money. So my salary was reduced by $30,000. Luckily I have my husband. I am lucky because he has stuck by me for 10 surgeries. Number 11 is pending. We will be married 18 years in Sept. I try my best to try to keep things normal for him and my 15 year old son. I push myself so they don't realize what pain I am in. Lately I've been complaining. Makes me feel guilty. I have lost touch with most of my friends. It's not all their fault.

Hopefully we will all get relief someday. Feel better.

Kathy

 
Old 08-09-2009, 02:23 PM   #9
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Re: Severe lower back pain. In need of help! Please advise...

Wow! I felt like I was reading my own story! I am in the exact same boat and literally "feel your pain". Long story short: two discectomies, a trial surgery called a dynasis, two level fusion L5/L4, ANS stimulator implanted last September (6 total). I continue to suffer with constant, chronic pain.

I take Opana ER 20mg every day with a Lidocaine patch. Got some relief from injections, but they have stopped working. I have two herniated discs above the fusion and have constant, burning nerve pain. I tried Lyrica but it made me sick.

I am still working (fortunately) although I'm not sure how much longer I will be able to work. My doc wants me to have another surgery to open up some space at L3 and L2.

So, if it helps, you are not alone. There are others out here, suffering every day. All we can do is keep going and keep trying.

Hang in there!!!

 
Old 08-10-2009, 08:00 PM   #10
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Re: Severe lower back pain. In need of help! Please advise...

Sorry to hear that. I have felt that way about a few messages so far and I feel badly because I know the hell that I go through. I guess it helps to know others have this and are getting on with their lives though.

I really feel the percentages the surgeons give us are extremely biased! I was told on 3 of my surgeries that I would have between a 50% and 70% chance of getting rid of at least 60% of my pain. I was told that since I have never smoked and am not involved with any strenuous activity that I was a perfect candidate for a spinal fusion. Everything was positive. I didn't expect to be pain free, but I did hope to be able to lay down without a knife grinding feeling in my lower back and the constant feeling of my legs and feet are on fire! I was never told that a spinal fusion was a temporary solution and that it rarely gives relief for more than a few years.

Now, the very same surgeons, are telling me the scar tissue from the past few surgeries is possibly to blame for the increasing pain and the reason the spinal stim might not be reaching my lower back pain! It's really frustrating. From what I have read, it looks as if my constant muscle aches, lack of energy, and depression (possibly fibromyalgia) could be caused by the surgeries also.

The next step is to have a discogram (discography) which I am still awaiting approval on. It's going on 4 months and another IME since trying to get authorization at this point so I am hoping I will have an answer soon. The insurance company was trying to say that I have been through everything and there is nothing more medically that can be done for me. I am 36 (in severe pain since age 25) and I don't agree with them. I am still hopeful at this point.

I'm not really sure what to do if they tell me a disk above my surgery area is causing the pain. I don't think I can take another surgery. I have no faith in surgery... but I need to do something since I am stuck in bed 24/7 and in constant pain. At this point I would be happy if I could just sit or lay down without feeling like this.

I was also told the screws from my spinal fusion/cage might be causing the pain and that they can be removed. Have anyone experienced this before? I really need some advice on this.

Thanks to everyone who sat through and read this. I know I have a habit of running on too long.

 
Old 08-10-2009, 08:55 PM   #11
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Re: Severe lower back pain. In need of help! Please advise...

spoonman:
You said that you have fatigue, tiredness, and depression. Has your doctor ever tested your testosterone level? Anyone who is on pain medications for a length of time will start to have diminished testosterone and you will start to experience the symptoms of low T: low libido, depression, fatigue, constantly tired, loss of muscle, gaining fat around the belly area, etc.

I would highly recommend that your get your T level checked. I got mine checked last year and it was at 188 (normal is 300-900) and I am 35 years old so it should be around 500. I started on T therapy and was amazed at the results. Plus low levels of T have a detrimental effect on the heart.

brian

 
Old 08-11-2009, 11:33 AM   #12
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Re: Severe lower back pain. In need of help! Please advise...

Hey Brian. Yes, I was tested recently and both my Vitamin D and T are very low.

Testosterone - Serum 174 L ng/dL
Vitamin D 14.5L ng/mL

Unfortunately worker's comp doesn't believe there is any relation between my back pain/pain meds and my low T so they won't cover the cost. I have Medicare, but only Part A and B.. so it would cost me around $300-$400 out of pocket each month which I just can't do at this time.

Do you know of any articles that prove the use of pain meds to cause low testosterone levels?

Thanks!
Matt

 
Old 09-04-2009, 08:45 PM   #13
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Re: Severe lower back pain. In need of help! Please advise...

Well, the Nucenta 50MG (1 every 4 hrs) was no good for me. I tried it for 2 weeks and after doubling the amount my Dr prescribed I gave up on it and went back to the Percocet 7.5/325 (along with the Duragesic 100mq). I also had a lot of trouble urinating after about a week of using it and it just got progressively worse. I tend to have this problem with a lot of meds, but mostly with the anti-depressants I have tried. I'm currently not taking any because of this.

After another month of going back to the Percocet/Duragesic combo, my Dr tried yet another pain med. This time he gave me a script for Morphine Sulfate 15mg (1 every 6 hours) Is this the same as Morphine? or is it another derivative like Oxycontin? I just sometimes feel like he's giving me less instead of more for my pain.
This is supposed to replace my 8 Percocet (8.5mg/325mg) a day, again along with my Duragesic 100mq and Lyrica.

Is there any meds that people are having better results with that I should be trying? I have been searching for relief for over 11 years now and the pain just keeps getting worse. I don't even know if my muscle aches and other pain is even caused by my back at this point. It just seems like everything hurts no matter what I do.

Thanks for your help,
Matt

 
Old 09-05-2009, 06:42 AM   #14
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Re: Severe lower back pain. In need of help! Please advise...

Hi Matt,

I hope that the doctor told you to take a supplement for the Vit D? Do you know if they tested your B12 levels as well? My primary problems are muscular so I didn't think that much about the increase in mucle pain/problems. My massage therapist noticed that my muscles did not seem to be working properly, so my Dr. did some bloodwork and both the D and B12 are way down, with the B12 low enough I've got to get injections. The exhaustion and muscle pain are symptoms of not having enough of these vitamins. You might want to ask your Dr. about this

Hope you find an answer soon.

Tigg.

 
Old 09-05-2009, 08:55 PM   #15
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Re: Severe lower back pain. In need of help! Please advise...

Quote:
Originally Posted by tiggertoo2174 View Post
Hi Matt,

I hope that the doctor told you to take a supplement for the Vit D? Do you know if they tested your B12 levels as well? My primary problems are muscular so I didn't think that much about the increase in mucle pain/problems. My massage therapist noticed that my muscles did not seem to be working properly, so my Dr. did some bloodwork and both the D and B12 are way down, with the B12 low enough I've got to get injections. The exhaustion and muscle pain are symptoms of not having enough of these vitamins. You might want to ask your Dr. about this

Hope you find an answer soon.

Tigg.
Thanks for the reply. I am taking Vitamin D 5000 units (every 3 days) and according to my last bloodwork back in June, it seems to have gone up, but It's still on the low side, as is my T levels.

Vitamin D levels in May
Vitamin D 14.5L ng/mL

and in June (after a month of supplements):

Vitamin D, 25-Hydroxy
Vitamin D, 25-OH, TOTAL 57
Vitamin D, 25-OH, D3 12 (ng/mL)
Vitamin D, 25-OH, D2 45 (ng/mL)


T levels with treatment are still only 204 (should be up around 800 from what I can gather)

I wasn't tested for Vit B12 unfortunately.

The only other thing I noticed out of the norm on my blood work is something listed as LYMPH (5d) which is 46 (it says the norm is between 16 & 44.8). I haven't been able to find much about this other than people saying it could be a viral infection.

I am still hoping for this Discogram to be approved so the doctor can get a better idea of where my back pain is originating from.

The Morphine Sulfate (15MG, 1 every 4 hours) is not doing anything for my pain. I just started today at 2pm and have been taking them every 3 hours and I'm still in a lot of pain and stuck in bed yet again.

Back to the drawing board I suppose...

 
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