WENT SCRIPPS TODAY!!

Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Nov 22, 2002.

  1. 2BPainfree

    2BPainfree New Member

    Hi all...

    Well...I traveled a very painful 2 hours to get to Scripps Clinic in So-Cal today! I wanted to share with all of you what this "specialist" (He is a Rheumy & pain specialist)had to say:

    After exam...."Yep, you have Fibro & CFS which go together"
    DUH!!!! Anyway, he went on to say:

    With true chronic pain if the pain is not adequately controlled the chemical changes in your brain along with ongoing frustration lead to depression (the #1 symptom of depression is severe fatigue)...He went on to say: Pain, fatigue, sleep disturbances, and depression are completely linked together... forward, backward and sideways. He said you CANNOT treat "one" of the 4 components and expect to get results...ALL 4 must be treated ADEQUATELY and EQUALLY to get to theraputic results.

    His analogy(he said when he lectures to Doctors on pain managment) is: the 4 components untreated is like trying to hold warm jello in your hands, it just keeps slipping thru your fingers...you NEED the BOWL to keep the jello together. The bowl represents total "adequate" treatment.

    Treating only one aspect of the 4 components will NOT work.
    Long & Short of it: Oxycontin on a REGULAR basis, antidepressant on REGULAR schedule (I take wellbutrin)
    Will control pain, relieve drepression which will help relieve fatigue and then allow better sleep. (sounds good, hope it works!)

    Oxycontin releives my pain & fatigue but I don't like to take it when I "don't need it" DUH...instead I take vicodin which makes me feel like crap. Oxy needs to be taken on a regular schedule whether you have pain or not, just like the antidepressant needs to be continued even when you feel better. My Bad...because out of guilt of thinking: I'm NOT depressed, I can HANDLE this, I don't need this stuff to get well.

    Instead, I have taken vicodin for years trying to beat fatigue & pain, then feeling guilty for taking it, thinking THIS is why I am so fatigued, but I couldn't "NOT" take it.GUILT, GUILT, GUILT. I have been afraid to take Oxycontin on a regular basis for fear of REALLY being an "addict" already beating myself up for the 6 vicodin a day that I can't go without (otherwise can't function.)

    Time to "get real" as Dr. Phil would say cause "what I'm doing now just ain't working!" I am going to QUIT fighting this disease and start managing it...if this means oxycontin, antidepressants and whatever else on a REGULAR schedule than so be it....NO MORE GUILT!

    I don't know if any of this made since, but I hope to those of you who are new this may help a little. This doctor say's PAIN RELEIF is a vital component in getting well! DUMP THE GUILT!

    Sorry for rambling,
    Susan

  2. 2BPainfree

    2BPainfree New Member

    Hi all...

    Well...I traveled a very painful 2 hours to get to Scripps Clinic in So-Cal today! I wanted to share with all of you what this "specialist" (He is a Rheumy & pain specialist)had to say:

    After exam...."Yep, you have Fibro & CFS which go together"
    DUH!!!! Anyway, he went on to say:

    With true chronic pain if the pain is not adequately controlled the chemical changes in your brain along with ongoing frustration lead to depression (the #1 symptom of depression is severe fatigue)...He went on to say: Pain, fatigue, sleep disturbances, and depression are completely linked together... forward, backward and sideways. He said you CANNOT treat "one" of the 4 components and expect to get results...ALL 4 must be treated ADEQUATELY and EQUALLY to get to theraputic results.

    His analogy(he said when he lectures to Doctors on pain managment) is: the 4 components untreated is like trying to hold warm jello in your hands, it just keeps slipping thru your fingers...you NEED the BOWL to keep the jello together. The bowl represents total "adequate" treatment.

    Treating only one aspect of the 4 components will NOT work.
    Long & Short of it: Oxycontin on a REGULAR basis, antidepressant on REGULAR schedule (I take wellbutrin)
    Will control pain, relieve drepression which will help relieve fatigue and then allow better sleep. (sounds good, hope it works!)

    Oxycontin releives my pain & fatigue but I don't like to take it when I "don't need it" DUH...instead I take vicodin which makes me feel like crap. Oxy needs to be taken on a regular schedule whether you have pain or not, just like the antidepressant needs to be continued even when you feel better. My Bad...because out of guilt of thinking: I'm NOT depressed, I can HANDLE this, I don't need this stuff to get well.

    Instead, I have taken vicodin for years trying to beat fatigue & pain, then feeling guilty for taking it, thinking THIS is why I am so fatigued, but I couldn't "NOT" take it.GUILT, GUILT, GUILT. I have been afraid to take Oxycontin on a regular basis for fear of REALLY being an "addict" already beating myself up for the 6 vicodin a day that I can't go without (otherwise can't function.)

    Time to "get real" as Dr. Phil would say cause "what I'm doing now just ain't working!" I am going to QUIT fighting this disease and start managing it...if this means oxycontin, antidepressants and whatever else on a REGULAR schedule than so be it....NO MORE GUILT!

    I don't know if any of this made since, but I hope to those of you who are new this may help a little. This doctor say's PAIN RELEIF is a vital component in getting well! DUMP THE GUILT!

    Sorry for rambling,
    Susan

  3. allhart

    allhart New Member

    sounds like you found a grate dr ! the frist time i tried oxy i didnt take it everyday insted like you took more of my others finally the dr said just try it 2 times a day for a week everyday and see how you feel it was a mircle ! wish i had it now ! im glad everything went so well
  4. Mikie

    Mikie Moderator

    Perhaps I should re-examine my perceptions of rheumies. I believe this rheumy's being a pain specialist as well probably sets him ahead of the rest. So many rheumies, as well as other docs, are totally afraid of prescribing adequate pain meds.

    I, personally, do not suffer from depression because I believe the depression is a result of pain and lack of sleep. By relieving the sleep problems and pain problems, I do not have the problem with depression. My sleep disturbances were producing the fatigue, not depression.

    Antidepressants can sometimes exacerbate the overfiring of neurons which is why we cannot sleep. So, in essence, they are counterproductive to our getting restful, quality sleep. Unfortunately, prescribing antidepressants is common for docs treating our illnesses. According to "Worst Pills Best Pills," Wellbutrin is used to treat severe depression that is not caused by other drugs, alcohol, or emotional losses (such as the losses produced by contracting an illness). The manufacturer does not recommend use beyond six weeks. It is related to amphetamines. Higher doses increase likelihood of harmful effects. With doses more than 450 milligrans per day, the risk of seizures increases tenfold.

    Please go to our library and read Dr. Cheney's article on Klonopin. It does a really good job of explaining why we cannot sleep, have sensory overload, restless leg syndrome and anxiety. It is because our brains are already in a slight state of seizure. SSRI's or amphetamine-family drugs like Wellbutrin or stimulants like Ritalin just cause the neurons to fire even faster and eventually cause brain damage.

    So many docs prescribe these types of drugs and then give their patients something to help them sleep at night. This is like the upper/downer pattern which eventually leads to the problems Judy Garland suffered from. These two treatments are totally incompatible.

    Klonopin stops the seizure activity and allows for quality, restful sleep. There are some people who cannot tolerate the Klonopin. Some can tolerate Neurontin which is also an anti-seizure med, but they do seem to build a tolerance to the Neurontin, whereas people do not seem to build a tolerance to Klonopin. Klonopin also helps with the RLS, sensory overload, and anxiety/panic attacks.

    Also read Dr. Cheney's sister article on SSRI's and stimulants.

    Love, Mikie
  5. 2BPainfree

    2BPainfree New Member

    Thank you both for responding!

    Allhart...Just curious, how many mg's of oxy per dose was prescibed to you?

    Mikie...thank you so much for all the feedback! I will certainly chech out the info you recommended...and whip out a PDR to find out what's up with the Wellbutrin and also why they have me on it long term...good catch! Thank you!

    R/E: Rheumies: My (regular) rheumie will prescribe only vicodin. She's not against oxy, even thinks it's a good idea
    but let's a pain managment person deal with prescribing. In fact she refers me away for everything...I don't feel she helps with anything other than the arthritis (which is managed...thank you God!) I have been SO frustrated with her which is why I went to Scripps...Glad I did! Here's the funny part: She's "suppose" to be the leading Rheumy in Orange county, even for fibromyalgia!!! She never once set up a plan for me to help control the fibro. Just said I'm "too" emotional and should see a psyciatrist. How do ya like THAT! (wouldn't even respond to my distress when I would fax her!)

    Go figure...
    Love to you all,
    Susan/Calif