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New Here

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:28 AM in New Member Introductions
I just joined this forum. I have DDD (big black space between L-4/L-5 on my MRI) "pins and needles" in my feet every day, fibromyalgia and everything that goes along with it including killer flare-ups that wipe me off the face of the map for days on end, treatment resistant depression, anxiety and chronic bad luck (kidding...well not really).

I don't have time right now to write my whole story but I wanted to introduce myself.

I am 40 years old and have been "pretending" to be in pain since I was 18. It was all in my head, there was no evidence or any problems, Take these pills, oh sorry no insurance? Bye Bye....

Then years later an MRI shows the DDD. All of a sudden "yes you have real problem" So it went from me being crazy to having a rotten disc and two vertebrae rubbing together. There are things we can do to ease your pain... Oh wait you have Medicaid? Sorry they don't pay for anything. At least that is what I was told by the wonderful robot infested pain clinic I have to go to.

My life has been a painful roller coaster ride of rude and/or incompetent doctors and nurses, dangerous pharmacists and never ending fights for my rights as a person living on disability.

I joined this forum because I feel lost and invisible. Doctors don't seem to care, Lost my disability benefits thanks to one person who couldn't return phone calls, hopefully will get them back but not without a relentless battle. Pharmacy/pain clinic are useless. Nobody does their job. It all makes life very hard.

I read through some of the posts and feel like this could be good place to vent and maybe get advice.

I will be here later to write more.



  • dilaurodilauro ConnecticutPosts: 9,839

    For a Spine-Health Site introduction, Click on :

    Welcome To Spine-Health

    If you have any questions, feel free to contact (PM) any one of the Moderators here Priestess , Bruce , Paulgla, DiLauro

    The Spine-Health Web site offers so much more than these Member Forums.
    Check the various tabs at the top of the Spine-Health page and you will find so much that is offered here.

    Please remember that all information you receive from members on this forum is NOT
    formal medical advise. You should always consult with your doctors.

    To get back to the Forums, you can always click on Forum Home

    Please feel free to contact me at rdilauro@gmail.com or send me a message
    Looking forward to hearing more. From your initial post, it does not appear that you have any spinal surgery ...
    Is that correct?
    DDD is probably the most misunderstood spinal problem. The fact that it has the one disease in it makes it sound a lot worse than it is.
    DDD is something that almost everyone will show some signs of by the time they are 30. Some people will show it quicker and more severe due to a- Trauma b- Surgery and c- And some genetic situations.

    The good news is that in only the severe cases is surgery required. The majority of people can manage it through NSAIDS and an approved exercise program.
    I've read an interesting fact.

    DDD is a disorder that may cause low back pain. It is interesting to not that although 80% of adults will experience back pain, only 1-2% will need lumbar spine surgery to correct it!
    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
  • Hi,
    Thanks for the welcome. I have not had surgery. For years I have come so close to having it but each time I chicken out because I don't trust the surgeons. They have all told me a different story and it is confusing. the last surgeon I saw said that surgery is the ONLY option left as I have exhausted all other forms of treatment. PT, Injections, etc...

    He said "This surgery is not perfect and there is no way to tell how you will respond" he also said there was a chance I would be worse after and that it could be up to a six month recovery time.

    The fact that I have never been able to get my fibromyalgia under control makes it hard because it might prevent me from healing properly (so I have been told) I know they have to tell you the risks but he wasn't very convincing as far as anything positive about it.

    A few years ago I saw a surgeon who said I was a "perfect Candidate" for disc replacement surgery but he wanted me to get the fibro under control. I went to a pain specialist but after a few months of treatments that I didn't respond to he suggested the surgery might be necessary to stop the pain cycle.

    He contacted the surgeon who was to do the disc replacement and was told that I was discharged as a patient and there was no record of him telling me that I was a candidate. I was stunned and the pain specialist was also baffled. We both thought it might have something to do with Medicaid.

    The next surgeon I met with told me "You definitely have a severe problem and its no question you are in real pain but....Some people have real problems" This made me feel so bad because for some reason I ended up feeling guilty. Almost like I should just go away and stop wasting his time.

    The last surgeon I mentioned above sent me to the pain clinic I am still going to. He said there was nothing else that could be done. He said that nerve blocks and injections would most likely not help at this point.

    The pain clinic staff does not listen to me. I doubt they listen to anyone. I told a nurse there about the flare-ups I get. She told me I had to take Lyrica. I told her I had a script for it before and Medicaid would not cover it. She told me to go to aqua therapy. I told her I tried that also but again Medicaid would not cover it.
    She told me Lyrica is the only medication for fibromyalgia.

    I asked her if there was something she could prescribe for when I got hit with a flare up. I told her they are so bad that I am afraid of them coming.

    She said "We don't give patients medication to make them unconscious" I have no idea where she came up with that. that is NOT what I was asking her. Then she gave me two scripts for the same two things I told her that Medicaid would not cover and a pamphlet all about Fibromyalgia. I was insulted and saddened by the fact that people can be so insensitive. My depression got severe after that and I have not been able to break through it.

    Each time I go to the pain clinic I see a different nurse. I requested to see a doctor because my Primary told me to. i was told i would see a doctor the last time i went. I did not. another nurse I had not met before came in.

    I feel like I have to plan out what I will say because I want them to understand how this affects my life. I am done planning. after waiting two or more hours every time I go there I am in more pain and my brain is foggy and I probably can't articulate what I planned on conveying in the first place.

    I always leave feeling physically and mentally wiped out and like I am the scum of the earth. I'm not trying to be rude or mean to them. I just don't get it. they come in after making you wait for hours and act like you are wasting their time.

    I asked to see my records and was told I could not. I would have to pay 75 cents per page. I said that I had no money so the girl changed her mind and said "we can only give you copies of the last two visits free of charge" when I read them I could not believe how inaccurate they were.

    No mention of the conversation regarding the flare ups. There were comments like " Patient functions normally on current medications" I have told them time and time again that I need help. I need something to be done. I can't live this way anymore. It is obvious that they don't listen to patients.

    What am I doing wrong?

    Currently I am taking 90 mg cymbalta, 200 mg zoloft, lortab 7.5 when the pain is severe, and provigil because I can't sleep so I need it to keep me awake during the day.

    No medication that I have taken even touches the pain of the flares. When I get those there is literally NO hope of being able to function for up to two days. I can't get rid of any of the pain and I have no choice but to endure it.

    I feel like I am on a dead end street.
  • Something I have been wondering about...Is there anyone here that might be able to give me some advice on HOW to communicate better at the pain clinic? Do I have the right to file a complaint? I called there after the second time that nurse treated me like crap.i7ux

    I called to ask if I could avoid being seen by her. The girl on the phone gave me a really hard time about it and then said about the new nurse "You are going to hate her more than you hate the other one" I never said I hated anyone. I just didn't think she was a very helpful nurse!!

    After that I called and spoke to someone who was supposedly the head of the nursing staff. she said that girl was wrong to say that and that i had the right to ask to see a different nurse. I told her I didn't feel like I was being taken seriously there and she said "The problem is that you have Medicaid and they don't pay...any treatments that might help you aren't covered."

    So with that....I wonder if I even have any options now!
  • How sad & sorry the health profession has become. How many times has all of us been to see the doc & have to wait for 1-3 hours & the doc comes in & won't even give us the time we need to explain whats going on? Then on top of that they have the nerve to hand us a bill of $75.00 & way up from there. Whatever happened to compassion for our fellow man. I understand they have to make money but come on. I understand they are very busy but we are all humans & should be treated as such. god bless you in your search to become painfree.


  • Thanks Stinger,
    There are so many of us in this sinking boat. I know I am not the only one but that actually does not make me feel better. To know that each time I go to the doc I have to brace myself to be treated like I'm not worth their time.

    I keep telling myself I will never give up but as the years go by I feel more and more tired and hopeless. I hope I can get somewhere soon.

  • I have to say that reading your story made my blood boil. It doesn't matter that you have Medicaid, but you are sure to be made to feel like a second class citizen. It is unprofessional and down right cold of the nurse to ignore that Medicaid won't pay for Lyrica and she continues to turn a deaf ear. She should be looking for an alternative medication, like perhaps Neurontin. Before Lyrica there was no specific medicine approved to treat fibromylgia, so it is NOT written in stone that it is all you can have. Doctors write scripts for for off label uses of medications all the time, and Neurontin would be an easy fit to get the fibro under control. It is available in generic form and it is called Gabapentin. Why the hell couldn't they have told you that?

    I also have severe DDD and a host of other problems, and I know how bad it hurts. It is true that surgery isn't the cure all for the pain, that's one thing they got right. I've had 2 surgeries with no pain improvement at all and I'm left with permanent nerve damage.

    I wish things were different for you and I feel the medical community should find ways to help people that are in need and have inadequate health coverage. The problem is that no one wants to deal with Medicaid because they don't pay out enough money and providers don't want to accept very low payments. Therefore the patients stand to suffer inaccessibility to proper treatment and medication. And more and more doctors are turning away Medicaid patients.

    Is there some way you can look up another pain clinic who will accept Medicaid? It seems like you are getting nowhere at your present location since you are not being listened to. The staff can't get to know you if you have different nurses all the time and there is no continuity of care. It is obvious that there is communication breakdown and your needs aren't being met.
  • I am so sorry to hear of the inexcusable treatment that you have endured from the medical "so called" profession. Have you thought about writing everything that you want to say down on paper before the visit? I do this often as I also get the brain fog from the meds that I take. Do you know if there is a teaching hospital anywhere near you? They often provide great care and although it may seem like a hassle some of the time, you also have interns involved in your treatment and I think that sometimes they try a little harder. Theses places thrive on figuring out things that are hard to figure. Also they charge according to your income so I don't think that medicaid would be an issue. Check around in the larger cities near where you live and maybe you can find one. I sincerely hope that you get some help and relief soon. Never give up. Please keep us posted.
  • So sorry for what you are going through. I read so many stories about pain clinic experiences and it makes me realize I am very lucky to have found a doctor I love. Her daughter suffers from chronic pain and she really "gets it".

    I hope you can get some relief, including better communication with your clinic.

    Welcome to Spine Health!

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