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Searching for understanding

Hello All,

I'm a new member here. I came upon this forum through an online search for online support for chronic pain sufferers. I have had chronic, progressively debilitating pain for the last 9 years and have just recently been given multiple diagnoses involving my spine. I have degenerative disc disease, disc herniations and bulges and root nerve involvement throughout my spine.

Surgery is not an option for me, so said the last neurosurgeon and orthopedic surgeon I saw, as the damage/issues are too widespread. They said they would have no way of knowing which area to work on to eliminate my pain. Also, spinal fusions and surgeries, I've discovered, don't often work the way they are supposed to and sufferers end up in worse shape than where they started. That said, it's not an option for me anyway.

I am currently working full time but I'm barely hanging on. I'm on layoff notice and am scrambling to find another job with this company before May when my notice is up. I'm having a hard time dealing with the stress of job hunting along with the pain which is only made tolerable by medications, never finding full relief.

I have a nine year old autistic son and a wonderful husband who is my sole support in life. We have no family (foster kids) and no help other than each other.

Thanks for reading my little intro! I'm glad to be here and hope this little community can become a place I feel safe and can share.

Whym :)


  • dilaurodilauro ConnecticutPosts: 9,832
    Welcome to Spine-Health and how to get started here

    You will find a lot of useful information and the links provided in the link above. You can always use them as a reference guide for using both the Spine-Health patient forums and the medical side of this site.

    Just from what you posted, the Degenerative Disc Disease appears to be the least of your worries. DDD is the most misunderstood of spinal conditions. Almost everyone will have that by the time they are in the mid 20's Most cases are managed through approved exercise programs and OTC NSAIDs. However, the disc that is impinging on a nerve root, that would would worry me more. When the spinal nerve root is compromised, surgery is generally required sooner vs later.
    You dont want your disc to be pressing on your nerve root for a long time. Recovery from lumbar surgery is anywhere from 3 to 6 months, fusions may be longer, but recovery from nerve pain can take up to 18 months.

    I would sit down with your doctors, having your husband with you and let the doctor give you all the pros' and con's about having surgery, what type, and what happens if there is no surgery. You just want to have all the information so that you and your husband along with the doctors can make the best decisions for you!

    I am no doctor, but I would want to know why the doctors are reluctant to operate. Sure, they are saying that your problem is widespread. Some people have that also, so the doctors address one spot at a time until the problems are resolved.
    But I am just sitting here terminal to terminal, so could be other reasons I am not aware of.

    BUT, the one big thing I see missing is your treatment plan. What does your doctor having you do right now?
    Are you in Physical Therapy? Massage, Heat/Ice, Aqua Therapy, Traction,et.... Along with the various spinal injections that can help so much. And last what medications are you currently taking.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thank you for the informative reply!

    I've had a very hard time with physicians since I began the hunt to discover what was causing my pain. I have osteoarthritis in many of my joints so pain from one will sometimes confuse the rest. Physicians seemed eager to blame my pain on arthritis or fibromyalgia from the start. I have been seen by a fibromyalgia specialist (retired rheumatologist), two rheumatologists, a neurologist (who did EMG studies as I was referred for bilateral sciatica in 2008. He discovered the nerve involvement in my lower spine and his MRI highlighted the cervical damage and issues which sent me onto neurosurgery). The neurosurgeon did not consider me a candidate for surgery and his explanation seemed sound but now that I'm looking back and questioning things it's an area of concern. I did ask what would happen if I did not have surgery and he said the pain would worsen until I was no longer able to function...then surgery might be a consideration to try to eliminate some of my pain. My family doc seemed to agree with him. I will investigate this further.

    I went to see an orthopedic surgeon to get his thoughts but he was extremely dismissive and uninterested in my case. The neurosurgeon was more detailed in his review of my spine but simply told me I have the spine of a 90 year old lady (I was 37 then).

    My GP has had me on many NSAIDS including Celebrex, Tramadol, Toradol and Codeine. I developed bleeding ulcers from one such trial so the NSAIDS have been taken off the table. I have been taking Targin (Percocet) and Cyclobenzaprine for the last six months and they provide enough relief to get me through half of my work day. The second half is a matter of sheer will. I have stomach meds now too to keep my acid levels down as I've been throwing up for years now... Not related to my spine though, so will ignore med side effects and stick to the point.

    I was referred to a pain clinic and the physician decided to treat me "like I have fibromyalgia" (everyone wants to pin this on fibro) and prescribed aggressive, painful physiotherapy and would then give me a lidocaine injection to my cervical spine. The pain relief would barely last until I made it home and the forceful physio left me nearly bedbound for days following. I've connected with other physiotherapist who does water based therapy and am having more luck there.

    So basically, I'm being given medications that don't quite work but allow me to make it to work safely. There is no future plan for me aside from carrying on until I can't carry on any longer. Dismal, I know, but I'm now at the point in this process where I want to find ways to manage the pain and just carry it with me. Trouble is I'm sleeping 15 hours a night just to keep going.

    I have annual follow up MRI’s and constant appointments with my family doc for med adjustments but really, I’m not getting anywhere and the pain is only getting worse. This is what brings me here…to source out some new ideas.
  • dilaurodilauro ConnecticutPosts: 9,832
    edited 02/19/2014 - 6:39 AM
    Its frustrating.
    You take one medication that is suppose to help in one area and then it effects another area.
    I have been on so many different medications basically non-stop for over 8 years and it has its toll on my stomach.
    I used to live on Alla-Seltzer 4 times a gay, but that isnt good eiterh. I finally got a prescription for Zofran, that has just about eliminated my stomach problems. Before that, without any warnings, I would go into violent vomiting for hours.

    Now for Osteoarthritis, that's become my best friend and enemy. Please take a loo at one of my threads Arthritis - What type do you have

    I explain in detail how OA has ripped through my body and was the reason for 4 complete joint replacements. Plus there is a link to Spine-Healths other medical site, Arthritis help.

    Stay strong, stay positive, never give in or give up. You can beat this
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilaurodilauro ConnecticutPosts: 9,832
    edited 02/19/2014 - 12:06 PM
    dont really help, you should look at turning towards the Eastern way of medicine. They have been dealing with pain, injuries, sickness for centuries without the use of chemical compounds.

    My physiatrist manages my total condition, which besides spinal is advanced degenerative joint problems. She sent me to this little Thai massage specialist who do wonders in helping my thoracic condition. I've been with this man for over 5 years now and he has taught me a lot about Eastern medicine.

    • - Aroma Therapy
      - Music Therapy
      - Meditation
      - and more
    So, now I embrace our standard way of medicine, but I have had so much success with Eastern ways.

    I always like to mention this to folks that seem to be at a dead end. I know, I've been there before.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • One thing about disc degeneration that confuses some is some doctors consider many things tears, smorl nodes and at times even herniations to be DDD. Some of this for a younger person is not normal . Annular tears are often lumped into DDD until a discogram comes along and proves its the source of pain due to inflammatory process, it's real name is internal disc disruption and that can be much more painful than true DDD . So while true DDD is normal at most ages some of it can depend on doctors interpretation and lumping all in . Just my two cents based on my exp
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • WhymWWhym Posts: 10
    edited 02/20/2014 - 3:53 AM
    Thanks for the info! I'll read up on your experience with OA shortly.
    I am just at that point now, looking into alternatives to drugs, or, something I can do in addition to. I've started from 'mindfulness' and I find it rather easy to stay in the moment because the pain calls me right back if I drift off. I use it to keep myself grounded, in a way. Meditation is something I'm going to look into, yoga too maybe. I don't think there would be much harm in either, even if they don't help me. Thanks for sharing your thoughts on that. Have you had a lot of luck with these therapies? I have a degree in musical theory and (strangely) haven't even though of music therapy! Another great idea to research.

    As for the side effects from the meds, blech. Just this month my GP put me on Dexlansopraxole (commonly used to treat GERD) and it's helping some. It's MUCH better than throwing up all the time. I did a year of that and ended up with more damage than I started with!. The Risk/Benefit equation is a part of daily life though, sadly. I'm hopeful that some day, I will find a balance between all of this.

    Thanks again. I'm already finding the info on this site very useful. Glad I stumbled upon it. :)
  • I've been learning this of late about DDD. It seems to be used as a blanket diagnosis as a catchall and it doesn't really seem to help the patient at all. I have an autistic son and it is a similar situation. "Autism" can mean a whole range of functioning from completely self isolated and unable to interact with their environment to functioning so high most people don't even notice the disability. I try not to say "DDD" to any new physician I see because they wave it away. "Everyone had DDD" they say. It's a very unhelpful perspective.

    Thanks for the info. Much appreciated.
  • anelsen15anelsen15 Posts: 119
    edited 02/20/2014 - 5:46 AM
    I agree 100 % with you, when used outside its meaning and not defining certain things it is not helpful for the patient. The best thing to do is to ask each one what is your description of DDD. Having "DDD" is basically like saying "aww you are just like everyone else who has it" but if DDD has tears and herniations lumped in you are no longer neccessarly dealing with normal things. I see it alot when dealing with herniations, buldges that do not hit nerves and I see it with annular tears. All can be severly painful at certain times. For me an experienced person in spine problems I read my MRI and I can see to ask about certain things, but when I was young for first time it was "you have DDD and go back to work" turns out it was much more . I personally dont like the term. Its like fibro, arthritis as it can be truly what you have or a catch all , its all speculative based on doctors meaning
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • SarahLindeauSarahLindeau Posts: 767
    edited 02/20/2014 - 8:51 AM
    My heart goes out to you. You are about my age and are fighting he good fight, trying to hold on and keep your head up despite grim circumstances. You're still working and getting up and out of bed every day to do what you need to do to get through the day. You should be commended for that. Your husband as well. The cowardly thing to do is to hide your head in tha sand and become bed bound. You are not doing that and the fact that you're still searching for your relief says you're not about to give up. That kind of attitude is a blessing and a big positive for you and your future.

    I, along with many people on this forum, was misdiagnosed for years. I had a ton of hip pain and the lazy diagnosis was sacroiliac joint dysfunction. The cortisone shots in my hip did nothing. That should have clued in the dr but unless you're persistent, sometines you won't get a proper answer.

    I hope you do find some way to get relief. Like Ron said, try new things. You never know where your relief may come from!
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • ABurningPainAABurningPain Posts: 15
    edited 02/21/2014 - 3:48 PM
    I relate so much to what was said about being at a dead end. I spent the last 5 days in the hospital due to the anxiety and depression that has overwhelmed me because of the pain. I finally told the doc to let me go home because they were not helping me and I MUST get back to work. Being truly at a dead end, I have to find a way to deal with this pain and get on with life. I live alone and have no outside support financially, so it is quite a bit more stressful. After the last 5 days I realize now that giving up isn't the EASY way..
    ACD&F c5/6; Lumbar DDD and bilat neuropathy..
  • So sorry you all deal with what you do.
    I can't imagine working in the pain you are in hopefully it is not a job that
    requires you to labor. You are such a strong person to go on working even if there
    is no choice we all need food and pay bills. Wish I had a way of bringing some
    sunshine into your day. I have people around me but they don't get it which
    sometimes really makes it all harder for me to deal. I have fought major anxiety
    problems I know where you are coming from with that one, it gets scary.
    So many times I just want to forget it all but I have a beautiful Grandson and Granddaughter
    who truly need me.
    Please keep us posted and if you ever need to talk or vent do it. I find it helps a lot.
    Take care of yourself ok.
  • mcjimjammmcjimjam Posts: 307
    edited 02/22/2014 - 4:26 PM
    I find it strange that degenerative disc disease is just normal aging of the discs. If something is normal, it is generally not called a disease, disorder or used as a medical diagnosis.

    I have degeneration in my discs and I am only 23. My doc thinks the problems started in adolescence (age 15). If you are young and have badly degenerated discs, I don't see how one could call that a "normal" process.
  • dilaurodilauro ConnecticutPosts: 9,832
    The only dead end is one that you create.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thank you so much! I've been reading a lot of posts on this forum and am finding the same sort of situation happening to others. I knew there were many out there but I've not had the chance to connect with too many people who truly understand.
    Because I manage to get up and make it to work on a daily basis has most people convinced that I'm not in a lot of pain or that it's treated and under control but really, it's just the opposite. I'm fighting hard to keep going forward. I'm not anywhere near giving up, as difficult and frustrating as it is most days. I have an autistic little boy to stay strong for so it makes things easier, I think.

    Again, thanks for the understanding and kindness. :)
  • WhymWWhym Posts: 10
    edited 02/25/2014 - 4:29 AM
    I'm sorry to hear about your recent hospital stay. :( I also have issues with depression and anxiety although mine is pretty well controlled at this point (years of therapy and medications later!) It makes everything all the more difficult when you have that to wade through too. Glad to hear you've been getting help though. It's not easy to ask for and, like you said, giving up isn't the easy way either.

    I have a wonderful husband and son who support me endlessly but they are all I have. I have no friends or family outside these two so I know that feeling of vacancy too. I hope you have a few good friends to lean on, at least.

    Thanks for the note. :)
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