Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test


armelindarmelind South TexasPosts: 88
edited 12/20/2015 - 7:57 PM in Chronic Pain
Today I'm going to let you in on a little secret. Today my body experienced the most pain that I could feel without audibly crying out and begging for the pain to stop. I truly do not know how I got through today. I know that I am NOT supposed to mix alcohol with my medications, however, when I do it helps to put the pain on a level thats about three feet away from me physically. I still have the pain but its far enough away that I can almost distract myself enough to not care that it is there. And with that, I have to figure out a way to send that information to my doctor to let him know that my daily quality of life is pure garbage. Because I never know when I'm going to hurt so bad that my arms shake, my body trembles, I sweat and I moan in my deepest levels. I have no idea how I am supposed to carry on with my life knowing that this will only get worse. And to make things even better, I am starting to notice fatigue in my legs after walking short distances. Everything feels like I am walking uphill in a high altitude environment. My hips strain I am out of breath my body gets stiff and I feel as though if I don't stop my legs my hips and my pelvis will fail me. I am so lost I have no idea what I am supposed to do. My doctor has told me that exercising could help but it could also cause more complications. I have tried doing more only to cause me more pain. So today I am here fatter than I have ever been, in a worse state than I've ever been in my entire life. And the only thing my doctors can tell me is " i am sorry". I have had every procedure that could eliminate my pain. However, each one has failed me. With this information and the MRI scans, my doctor says it will only get worse. I have one last treatment to look forward to, however it won't be given until I start losing range of motion or lose my ability to move. My thoughts on this are that when I am in a wheelchair, that's when I will be able to be helped next.
So far, that is what I have to look forward to. It's so unfair to me and so unfair to my wife and daughter. I don't believe I did anything to deserve this. But nothing in my life was over easy so why should things get any easier?



  • But I want to say I'm so very sorry for what you are going through.
    How long have you been suffering?
    I hope this week brings something positive for you.
    Kirsti x
  • adolf_smithadolf_smith Posts: 1
    edited 12/20/2015 - 11:58 PM
    I cant help you but i suggest to take suggestion on a doctor
  • armelindarmelind South TexasPosts: 88
    How long has this been? Well lets say it has generally spiraled into my current condition in late 2008, when I realized I had hurt my back (AGAIN!). This time, I gave it 2 weeks to get better but the pain only got worse. My first set of drs kept me on a pain pill regimine for about a year and a half with nothing else...other than to try to keep busy but dont do anything if it hurts. Basically, live and do my physical therapy by keeping active but dont strain myself.

    Well after nothing but more pain meds, I changed doctors and they immediately sent me to a pain management specialist. he performed some kind of injected dye test into my back and found that I had 2 ruptured disc and another one was slightly herniated. within 3 weeks was sent to a surgeon and was told that surgery was "highly" recommended. After reading up on this stuff and saw that success rates were fairly good and the surgeries are fairly common now, I decided ok. Anything had to beat the pain I was going thru.

    After coming out of surgery in May 2011, I relaized I was capable of feeling WAY MORE pain. For a few months I was actually better but my pain levels started to come back up. After awhile, my doctor did many tests and finally came to the conclusion that maybe the hardware in my back maybe causing the pain. Oh yeah I am still on pain meds at this time too. After several more months, I get the hardware removed and I do start feeling better. But again after a few months, my pain starts getting bad, and then I go thru several other procedures, nerve blocks, RF nerve ablation. Nothing helps.

    Finally, in 2013, I get a MRI with and without contrast and they can see the beginnings of nerve damage. They tell me what they think it is but want to wait for several months and get another MRI to see if there is any changes. And in 2014 I get my diagnosis Epidural Fibrosis. I am then told thats what I got and I can do nothing about it. It may or may not get worse. Well it seems that every few months I hit a new pain plateau. Meaning, just when I think I cant feel any more pain for anhy duration of time, I got a boost in my pain level and that becomes my new baseline. And I have been told my current pain meds are as high as they want to go. I am currently on Methadone for my pain. Early in the process I tried the patches with the pain meds in it...my body didnt like them. I was very anxious with them and my skin crawled. And from my experiences with morphine after my sugeries, it didnt really help reduce the pain. It just made me light headed but the pain was just as strong and I thought that kind of strong pain med is a waste if it doesnt help in any way.

    I have tried marijuana to help with the pain, and it didnt seem to help. With insomnia, back pain and now my weight issues, I have no idea what a good night sleep is. I am never comfortable and I am always in pain. As for chores... it takes about 10 minutes of light work and I am sweating and and light headed and blinded by the pain. I am reduced to a sedentary life with no "marital bliss" and no positive outlook. My doctor says I should feel lucky because many with my condition are unable to walk at all and either confined to a wheel chair or stuck in bed un able to move. YAY ME!!

    Ok, in short to answer your question... I have been in severe pain for 3 yrs about and fairly bad pain since 2008. And once I start losing mobility....not IF... but WHEN... thats when the last resort procedure will be introduced. I can already feel the weakness in my lower extremities. So... next year? maybe the year after? Until then, I am left to my lonely room in pain.

    However, I am one of the lucky few with this condition. 10% of all back surgery patients have some sort of pain for an extended amount of time. about 20% of them continue to have pain issues after 3 yrs. And I fall into the next category, about 5% of the 20% have a chronic pain issue for the rest of their lives. So if you need surgery, you should only consider it if it is the last resort. And if you do end up needing it, there is still overwhelming odds that you will turn out fine. Unfortunately, for me, I fell thru all the cracks. IN laymens terms, what I have is called Failed Back surgery Syndrome.
  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • MeydeyMMeydey Posts: 209
    edited 12/23/2015 - 6:59 PM
    Sorry to hear of your predicament. I totally understand what you're going through and have similar back issues. It all started with herniated discs at L4-5 and L5-S1. After a microdiscectomy and TLIF on both levels, I felt even worse. I also developed epidural fibrosis as well as permanent nerve damage, and was diagnosed with failed back surgery syndrome (or post laminectomy syndrome). I've had several epidural injections, physical therapy, aquatherapy, RFA, and tried a variety of pain medications. I was on Methadone for a few months and went through an unsuccessful neurostimulator trial. What really made a difference and improved my functioning was the pain pump implantation. After a few years, I feel it was the best option for me. I still have pain, and I take Norco and muscle relaxers etc. but my quality of life is better now. I'm not stuck in bed like I used to be, and that was pretty depressing. I notice that my hips bother me when I walk, and the doctor said it was because of the gait issues with back problems. Whatever happens, don't give up..there are other treatment options to consider with your doctor's guidance. What works for one may not for some. Hang in there and take care.
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
  • armelindarmelind South TexasPosts: 88
    Wow... you have given the only good news I have heard in 2 or 3 years. Are you also basically immune to Morphine? I dont know what you use in your pain pump. If its Morphine, then I guess not. For me, Morphine only made me high...didnt help my pain issues at all. i will ask my DR about painpump thing.

    Thanks again.
Sign In or Register to comment.