Dr. says my symptoms must be something psychological?

Discussion in 'Fibromyalgia Main Forum' started by JohnThreeSixteen, Oct 13, 2008.

  1. JohnThreeSixteen

    JohnThreeSixteen New Member

    I am so confused! I have been diagnosed with Fibromyalgia for about 6 months. I am on an SSRI and occasional Flexeril, Meloxicam and Tramadol. I don't take any of those every day....only as needed.

    Well, when I overdo it with activity....I have one night of sleeplessness and then I crash the next day. The reasons I can't sleep are pain, muscle spasms but something else also which I will try to explain.

    It's like total over stimulation that I feel after doing something strenuous. I can't "calm down". If I keep trying to be active, I get nauseous and feel like passing out. The other night, I was so wired that I had to put tissue in my ears to drown out sounds. There was NO WAY I could sleep...even with a sound machine on. Even after 2 Tramadol 50 mg each. This is what my Dr. didn't understand.


    He said it is either something psychological or something rare. WHAT?!
  2. goofgirl

    goofgirl New Member

    I think I know what you mean, only mine is the reverse. After crashing for three or four days, then I have a night or two where I don't sleep well and then I wake up at like 3 a.m. and can't go back to sleep, so I just have to get up. A lot of people here have had sleep studies to determine if they have something irregular with their sleep patterns. That might be something for you to look into? Also, have you considered asking for Ambien or another sleep medication to help you on those nights you have trouble? Others here can correct me, but maybe there is something going on with your adrenal glands. I believe exhausted or overstimulated adrenal glands could possibly cause symptoms such as yours. Might want to do some research on that.

    Seems like our doctors all are so anxious to blame symptoms on "psychological issues" when they themselves can't figure out what's wrong. I think as long as you practice good "sleep hygene", which your Dr. has probably talked to you about, i.e. not watching tv in bed, doing something relaxing 1 hour before retiring, writing out your worries in a journal before bed so you won't lie awake thinking, etc. He should consider other tests to help you.

    One last note; how long have you been on your SSRI? What time of day do you take it? I know when I first started Zoloft (an SNRI) I took it in the evening and it really kept me awake, so I started taking it in the morning. I'm still having trouble sleeping through the night, so my dr. prescribed Ambien CR.

    Good luck with your sleep problems. I know you'll find lots of responses and advice here from people who can relate. Keep us posted on your progress!

  3. 3gs

    3gs New Member


    Totally understand. Thanks for descriping this so well this is exactly how I react.

    Now I can have people read this and maybe get it!

    Your doctor I think is wrong and doesn't understand the many weird twists of Fibro. Now I know Im not the only one this happens too!

    here's to some good nites of snoring!
  4. JohnThreeSixteen

    JohnThreeSixteen New Member

    I take my SSRI in the morning, too. I don't drink alcohol or caffeine in the evening, don't have a tv in my bedroom, don't worry about anything at night. It's NOT anxiety. It's like being in a room full of screaming infants. It's total overstimulation....sleep is an impossibility. I went to church that next morning and had to stuff tissues in my ears during the sermon, lol. I didn't know if I was going to pass out or throw up sitting there. It just seems like it must be something to do with the pain or overdoing it...and some kind of response to it because it only seems to be the result AFTER doing something strenuous and only lasts for 24 hours or less. It's extreme. I have a had 2 c-sections before and I'd rather have another one than go through that again!
  5. klcooper

    klcooper New Member


    I think what you're going thru is common with fibro. I go thru spurts when I wake up in the middle of the night & my brain is going crazy, so many things going thru it and I can't stop it. (forgot what my Dr called it) I have to take Soma at night to sleep thru the night.

    I have to take Tramadol ev 4-6 hrs a day every day (and lots of Prohealth suppls.) been on tramadol for 2 mos. now, yay, been on alot of meds that only worked for 2 weeks to a month. You may wnat to try to take pain meds before you have to do strenous activity, maybe that'll offset the crash.

    I noticed sound and everthing is much worse now esp. at church, need to sit in the back & step out at times when the sound radiates. Everything seems so much more ammplified, pain, sound, stress, this is hard to deal with. I had 3 C-sects so you have to be in alot of pain to prefer that!!

    Hope it gets better soon.

    LEFTYGG Member

    its like explosions in my brain if someone makes a sudden noise while im sleeping it feels like electricity shoots thru my body its sensory overload.

    get ear plugs and a sleep mask it helps love gail
  7. JohnThreeSixteen

    JohnThreeSixteen New Member

    So my Dr. wants me to get off the SSRI I am on and come back to see him Nov. 3rd. Is that long enough to get off an SSRI? I don't think so! He wants to see what my symptoms are like not on meds. Then, if he can't help me, he's going to refer me. Well, I imagine in addition to withdrawal symptoms, my Fibro pain is going to be rearing it's ugly head BIGTIME! Help!
  8. Mikie

    Mikie Moderator

    Can be a slight state of seizure. Many of us have it constantly. Klonopin and neurontin have been used with success to stop the seizure state. These are what I consider "heavy hitter" drugs which can cause physical dependence, so if you consider them, be sure to perform due diligency and weight the potential benefits versus the potential risks.

    Klonopin has been a God send for me in allowing sleep; stopping the "noise" in my ears; easing my sensitivity to noise, movement, touch, and smell; and helping with pain and muscle spasms.

    There is an article here by Dr. Cheney on this seizure state. He believes that it can damage the nurons in our brains and that the Klonopin helps prevent premature death of the neurons. I'll go find the article for you.

    Again, whether to take Klonopin or Neurontin is a personal decision and should be made with one's own doc. If you doc thinks this overstimulation, he or she isn't aware of this part of our illness and the article might be very helpful. It is NOT psychological. Good luck.

    Love, Mikie
  9. Mikie

    Mikie Moderator

    Dr. Paul Cheney Discusses the Benefits of Klonopin

    by Carol Sieverling


    Editor’s Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic’s Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

    Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

    Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

    In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It’s as if our brain’s "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

    Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person’s threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.

    How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

    Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

    Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can’t tolerate more than half a cc.

    On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

    Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava “daytime only”; and valerian “nighttime only.” The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

    Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.


    When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren’t exactly identical to the original products, and with most drugs the slight variations don’t matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.


    Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

    Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

    Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It’s prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal."


    Dr. Cheney said that he honestly doesn’t understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It’s not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

    Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll die of something else first."

    The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it’s not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn’t an option for most of us, so we need to find the maximum dose that doesn’t make us drowsy.

    Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

    Though it can’t stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you’ll have more of your brain left."

  10. JohnThreeSixteen

    JohnThreeSixteen New Member

    That article is good and sounds like something I am going through. And yes, I need to find a good Dr. I don't have insurance and was trying to stabilize this without going to a specialist and having a bunch of testing. But oh well....looks like I have to anyway.
  11. JohnThreeSixteen

    JohnThreeSixteen New Member

    A change in taste. Can this be related to your article, Mike? I'm gonna google...I started noticing my coffee with cream and sugar tasted bitter in the morning. Actually, I was using Splenda and I added two packs then instead of one...still bitter. I switched to sugar a couple of months ago and it still is weird. I stopped drinking diet coke...I'd only have probably two a day but I switched to Vitamin Water. It comes and gos, that weird taste and the strange changes in taste it causes. It would be great if I could figure out what is going on with me! Where is Dr. Cheney? He might be worth traveling around the world to see, lol.
  12. JohnThreeSixteen

    JohnThreeSixteen New Member

    A change in taste. Can this be related to your article, Mike? I'm gonna google...I started noticing my coffee with cream and sugar tasted bitter in the morning. Actually, I was using Splenda and I added two packs then instead of one...still bitter. I switched to sugar a couple of months ago and it still is weird. I stopped drinking diet coke...I'd only have probably two a day but I switched to Vitamin Water. It comes and gos, that weird taste and the strange changes in taste it causes. It would be great if I could figure out what is going on with me! Where is Dr. Cheney? He might be worth traveling around the world to see, lol.
  13. Mikie

    Mikie Moderator

    But I suppose it is possible that taste could be involved as well as our other senses.

    Love, Mikie

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