i've quit all parmacuticals ,,,i am ready to curl up and DIE

Discussion in 'Fibromyalgia Main Forum' started by SCAP, Jan 20, 2009.

  1. SCAP

    SCAP New Member

    I am 41 f,,,,,,,,,,,,,I have been suffering for more than 15 years,,,,,,,,,,,,,,,,,,,,,I am so
    tired of pain,,,,,,,,,,,,,I decided a month ago that I was sick of all the meds,,,,,,,,I was on vicodin,,,,,,tramadol,,,,,,,,,,,,,zanaflex,,,,,,,,,,,,,I developed a tolerance to the vicodin,,,and I decided it was just as bad as the fibro,,,,,,,,,,,,,,,,it was just barely working for the pain,,,,,,,and basicly I just am sick of everything,,,,,,,,,,I refuse to stick another addictive substance into myself,,,,,,,,,,,,,I had 2 options,,,,,,,,,,,quit all meds,,,,,,,,,,or spend the next however many years I have left,,,,,,,,,increasing narcotic doses,,,,,,,,,,,,,,,,,I am sick of the pharmacy treating me like a junkie,,,,,,,,,,,,,,,,,,when i am taking meds as prescribed,,,,they treat all people on narcotics like losers,,,,,,,,,,,,,,they wont release your prescribed meds until exactally,,,,1 month,,,,,,,,,,,,,,,,,,,,I am sick of everything,,,,,,,,,,,,,,,,,,,,,
    I dont even know if I can get disability,,,,,,,,,,,,,,I feel like a worthless loser,,,,,,,,,,,,,,,
    I am always in my house,,,,,,I am in too much pain to do anything,,,,,,,,,,
    Ive tried chiroprator it worked some,,but my insurance wont pay for it,,,,and I am almost penniless,,,,,,,,,,,,,,,,,I live with the fear of just becoming homeless,,,,invisible,,,,,,,,,,,,,,,,,,,,
    I am soooooo sick of people saying how good i look,,,,,,,,,,,,,,,,,,,,,,I have tried to explain my fibro,,to people,,,,,,,,,,,,,,,,they dont get,,,or dont care,,,,,,,,,,,they say ,,oh just do this and this and this,,,,,,,,,,,,,,,,,,,,,,I have tried everthing lyrica,,cymbalta,,,,neurotin,,and on and on and on,,,,,,,,,,,,,,,,,,,,,,,,,,,,,I feel hopeless,,,,,,,,,,,,,,,Does anybody know my chances of getting disability,,,,,,,,,,,,,,,I live in NeW YORK,,,,,,,,,if not does anybody know of a good
    hypnotist/natural dr,,,,,,,,,,,in new york that uses non drug methods,,,,,,,,,,,,,,
    I am at the end of my rope,,,,,,,,,,,,again I;m 41 yr old,,,,,,,,,,,,,,,,,,,,,,I cant see living like this for another 40 years or whatever it;ll be,,,I have had enough pain,,,,judgement
    (i have family members who dont believe,,,,they think i'm lazy)
    anyway thanks for listening,,,,,,,,,,,,,,,,,
  2. Nanie46

    Nanie46 Moderator


    Please do not give up. I have had FM for over 20 years. I wish I had done lyme disease research years ago.

    Many people who were diagnosed with CFS or FM long ago, are being diagnosed with lyme. You live in an endemic state.

    Start reading info from the lyme experts.....start with these 3...

    "Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" October 2008 by Dr Joseph Burrascano. It is long, so start by reading pages 3-11. It can be found at:


    Then read "When to Suspect Lyme" by Dr John Bleiweiss. It can be found at:


    Then go to www.ilads.org and read their Treatment Guidelines.

    I don't know your history but everyone with FM or CFS should investigate lyme. Most Dr's do not know how to diagnose it.

    Start reading, it could change your life. Good Luck!

  3. Catseye

    Catseye Member

    What have you done about your diet?

    See beatcfsandfms.org for guidelines for treatment. I am using a natural doctor and he has done tests to determine what's wrong with me and recommended a very restricted diet and supplements. I am finally being cured, because it's just a matter of healing what's wrong, and now I have a life again. I was sick for more than 5 years, with about 3 of those years bedridden.

    I don't know if insurance will cover any of it but you can look at becomehealthynow and see.

    good luck
  4. Kittyweird

    Kittyweird New Member

    I, too have gotten off the pharmaceutical merry go round. While i realize that they have helped many fibro sufferers, they did not work well for me. Friends & relatives don't understand. How could they. You try to explain a disease that has sooo many symptoms & doctors don't even understand it.
    I am doing better than I have been since I quit most of the drugs. I take cyclobenzaprine (muscle relaxer) at night. It helps me sleep & I usually don't wake up in as much pain.
    Other than that I take Fibro Freedom, Fibro Multi-Vitamin, fish oil capsules and digestive enzymes. These have all helped a lot. I do gentle yoga stretches ,sometimes crying as I do so. It hurts to stretch, but if I don't things get tighter & more painful. Hot baths with Queen Helene bath salts.
    One of the best things I have done is to get to a place mentally where I value myself above all. People fear what they don't understand & they try to drag you down with hurtful comments. Sometimes they are just trying to help, others are non believers. I can't control what other people think & I try not to take their comments personally.
    I also try to keep busy, reading, crafting,etc. Hobbies help. Reading the various Fibro books, & joining this community has helped.
    In short, I believe that in order to live with this illness, you have to dig deep inside yourself & find strength. You have to learn to believe in yourself. I print out & send or give fibro articles to my friends & relatives.
    Good luck to you in finding your strength & remember, you are not alone, there are thousands of us.
  5. SCAP

    SCAP New Member

    thanks for the advice,
  6. SCAP

    SCAP New Member

    thank you ,
    I eat a balanced diet,,I dont like processed foods,I was a vegetarian for 16 years,,,I eat
    meat now,,the dr thought i wasnt getting enough protien
    I am 5'8 145 lbs,,,,,,,,
    I dont think diet is the problem,i avoid sugar,white flour,ect
    I also have been taking something called FIBRO-RESPONSE w/ malic acid and msm by,source naturals bio align? A friend of mine in California sent it to me,,but I kind of feel very energetic,,,with a body riddeled with pain,,,,it's like being trapped
    Thank you
  7. SCAP

    SCAP New Member

    That's why I stopped the narcotics and everything else,,,I was poisioning myself with the stuff to perrform at a acceptable level for the people who demanded it,,,,,,,,,,,,,,I just had enough,,,,,,,,,,,,,so now,,,I am homebound in pain,,,ect,,I have to find some solution to all of this, I amtrying to figure out what to do ,
    thanks for the advice
  8. hermitlady

    hermitlady Member

    Hi, I'm 47 just want to let you know I'm feeling the same way about meds. I've been diagnosed w FM/CFS/Depr ~10 yrs. I'm at the point now where I want to quit my daily Norco (hydrocodone) habit. I've been on it almost 2 yrs and am feeling like my life is somewhat controlled by this drug. I know exactly what you mean about being tired of people judging you, treating you like a junkie.

    If you don't mind sharing, how did you get off the Vicodin? I've started a slow weaning process, eliminating 1 pill a wk. I'm currently at 7 a day, so it will be a couple of months before I'm free and clean. This is what my dr suggested I do to avoid nasty withdrawals. I hope I can do this, I've never been dependent on any substance before...not a good feeling.

    I can't tell anymore if the pain I get is from FM or from my physical dependence on the Norco. It's probably a combo of both I guess. I'm so tired of not being able to figure out what's going on w my own body! I'm sure you can relate.

    There are other causes of fatigue and pain that are often missed. I have been recently been diagnosed w Mitochondrial Disorder. The CFS/FM fatigue has progressively gotten worse, so Dr ordered more elaborate testing.

    This problem w my mito causes an energy crisis within my body, the mito cannot produce energy due to biochemical imbalances. It's actually due to a genetic mutation that I never knew I had.

    I'm on supps for now, still waiting for more test results to narrow down my treatment. Hopefully someday it will make me feel better. It's so hard waiting....

    Keep coming here for support. There are some wonderful, understanding, smart people here that will be happy to help you if they can. It's so hard to deal w these dds, difficult to stay motivated looking for answers when you feel like death. We all know how you feel, hang in there and take care of yourself.

    xxxooo Hermit
  9. I wish I could help you, BUT I was about to post a "what can I do when pain gets too much. "I have severe pain in my real low back that radiates to my side, a bad knee and I feel like I have noo life. Its hard just to stay home and suffer , let alone go anywhere. I have a tens machine that helps the back somewhat but vicodin doesn't do much. if I go to a dr they want to give me effexor xr. Like I need another drug. lyrica doesn't work, neurontin nothing. Heck I wouldn't be depressed if I didn't have severe pain all the time. The days when pain came and left are long gone. I have had fibro for over 30 yrs and it has gotten so worse. OMG!

    So even though I can't help you, oh do I ever hear you. Sometimes I think these drs. put too much in the fibro blame. Good luck to you.
  10. gapsych

    gapsych New Member

    I know what it is like to have to take all the medications. I used only take Tylenol and that was very sparingly.

    Viocodin did not even take the edge off the pain.

    However, I have had sucess with the Tramadol. What I am going to change to is the extended release as I am having breakthrough pain.

    I know you do not want to go the route of pharmaceuticals, but pain can also damage your body and can make your pain worse.

    I will try and find an article that explains this.

    Whatever you choose, good luck.
  11. gapsych

    gapsych New Member

    ScienceDaily (Feb. 6, 2008) — People with unrelenting pain don't only suffer from the non-stop sensation of throbbing pain. They also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions.

    In a new study, investigators at Northwestern University's Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger these other pain-related symptoms.

    Researchers found that in a healthy brain all the regions exist in a state of equilibrium. When one region is active, the others quiet down. But in people with chronic pain, a front region of the cortex mostly associated with emotion "never shuts up," said Dante Chialvo, lead author and associate research professor of physiology at the Feinberg School. "The areas that are affected fail to deactivate when they should."

    They are stuck on full throttle, wearing out neurons and altering their connections to each other.

    This is the first demonstration of brain disturbances in chronic pain patients not directly related to the sensation of pain.

    Chialvo and colleagues used functional magnetic resonance imaging (fMRI) to scan the brains of people with chronic low back pain and a group of pain-free volunteers while both groups were tracking a moving bar on a computer screen. The study showed the pain sufferers performed the task well but "at the expense of using their brain differently than the pain-free group," Chialvo said.

    When certain parts of the cortex were activated in the pain-free group, some others were deactivated, maintaining a cooperative equilibrium between the regions. This equilibrium also is known as the resting state network of the brain. In the chronic pain group, however, one of the nodes of this network did not quiet down as it did in the pain-free subjects.

    This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. "We know when neurons fire too much they may change their connections with other neurons and or even die because they can't sustain high activity for so long," he explained.

    'If you are a chronic pain patient, you have pain 24 hours a day, seven days a week, every minute of your life," Chialvo said. "That permanent perception of pain in your brain makes these areas in your brain continuously active. This continuous dysfunction in the equilibrium of the brain can change the wiring forever and could hurt the brain."

    Chialvo hypothesized the subsequent changes in wiring "may make it harder for you to make a decision or be in a good mood to get up in the morning. It could be that pain produces depression and the other reported abnormalities because it disturbs the balance of the brain as a whole."

    He said his findings show it is essential to study new approaches to treat patients not just to control their pain but also to evaluate and prevent the dysfunction that may be generated in the brain by the chronic pain.

    The study will be published Feb. 6 in The Journal of Neuroscience. Chialvo's collaborators in this project are Marwan Baliki, a graduate student; Paul Geha, a post-doctoral fellow, and Vania Apkarian, professor of physiology and of anesthesiology, all at the Feinberg School.
  12. hermitlady

    hermitlady Member

    "However, these boards are meant to a place we can come for support. Not judgement. Let's try to keep it that way, shall we?"
    I don't understand why you said this. From what I've read, people have been posting supportive information, not judging anyone. I'm sorry if something made you feel judged, not a good feeling.

    The main ones who seem to judge me about meds are the stupid pharmacists and doctors! I had to change pharmacies cuz the pharm was harassing me everytime I got my Norco refilled. Just got tired of it.

    If you are comfortable w taking pain meds, so be it. I was fine with taking them until the last few months when I've had to increase dosage and have noticed how dependent I've become. At first, Vicodin gave me my life back, it was a wonder drug. Unfortunately I haven't found any other pain med that works as well without side effects.

    If you don't mind sharing, what meds have you found that you can rotate between to avoid tolerance/dependence? I need to talk to dr about trying that if I can't stand getting off the Norco. I tried MSContin, but it didn't do much. I'd like something that is longer acting, the Norco only lasts 4 hrs for me.

    Here's hoping for a pain free day for us all!


  13. SCAP

    SCAP New Member

    you aske how i quit vicodin,,,,,,,,,,,,,,,well i did it quick,,and fast,,,,the wrong way,,,,it was the worst thing i have ever been thru,,,,,,,,,,,and it's been about a month and i still gey anxiety
    especially since im in pain 24/7,,,,,,,,,,,,,,,,but,,,i was so sick of the medicine,,,that i just wanted it out of me,,,,,the dr sent me clonidine,,,some type of withdrawal drug,,,,but when i read the insert from the pharmacy,,and read all the info,,,i decided to not use that either,,,,,
    and right after the vicodin withdrawal stopped,,,,,,,,,,,,,i quit the tramadol i did that over 4 days decreaseing the dose by 1/2 every day,,,,, and honestly the withdrawal off that was also as bad as the vicodin,,,,,,,,,,,,,,,,,and then i stopped taking the zanaflex at night,,,,,,i just decided to be pharmalogically free,,,,,,i wish i never took vicodin ever,,and it will probably be a long time until i feel normal again,,but at least i wont have to worry about the drug effects making more problems in me,Anyway,,Ihope that helped,good luck