Anxiety has nothing to do with FM?

Discussion in 'Fibromyalgia Main Forum' started by emah, Sep 11, 2012.

  1. emah

    emah Member

    Ok, went to the dr (psychiatrist) who handles or I should say handled my anxiety and depression dx. He told me that anxiety had absolutely nothing to do with fibro (are you kidding me?) and they were two separate entities and the articles I read on internet were just a bunch of people writing about things they knew nothing about (paraphrasing/my interpretation)

    I told him that I had stopped my anti-depressants because I didn't feel well when I took them and I felt like someone had turned my engine off and I felt like I was neither progressing nor digressing. Kinda like being stuck in neutral. He prescribes xanax for my anxiety which does work and I'm on a low dose.

    He told me that if I didn't get back on the anti-depressants (175 mg of effexor or stronger if I liked) that within two weeks my anxiety would be worse and so would my quality of life.

    Fortunately for me he is moving his practice to a hospital and I will have to see another doctor. Also he gave my refills to last thru Dec. which gives me a good amount of time to locate another doctor.

    I really just wanted to .......well I guessing you can fill in the breaks. It irks me so when drs act as if we do not know our bodies or that we are idiots bowing down to them to obtain their info from their vast wisdom.

    (I am not new to anti-depressants, been on and off of them for years)I have tried so many different anti-depressants that for me I have become anti anti-depressant.

    (I am not new to anti-depressants, been on and off of them for years)d But the cllincher for me was that anxieity and fibro were not conneced. So tired of this DD!

    BTW, please I don't mean to use this community to simply complains, tho that is what I have done the last posts, pleaes if I can be of any help, I am there.
  2. neoplus1

    neoplus1 Member

    From everything that I have read about fibro as well as my own experience with it, it seems to involve some hypersensativity in the nervous system. That could explain the pain, other strange sensations, brain fog, fatigue, and depression/anxiety that can accompany it. Anxiety is a bit of a sensativity issue as well and can be an exaggerated response even when the anxiety isn't warrented. People with anxiety also have poor stress responses.

    I have Fibro and anxiety and can say for sure they are definitely related. YES they are separate illnesses and can have them separately, but they do often go hand in hand. Just the symptoms of fibromyalgia can lead to anxiety.
  3. Mikie

    Mikie Moderator

    Can be related to CFIDS/ME and FMS. We often have abnormal neuron activity in our brains. This can cause anxiety, sensory overload, tinnitus, insomnia and a host of other problems.

    I had a sleep study done and the results showed that my neurons cannot shut down so I can sleep. Noise, light, sound, touch and movement can cause aggitation and anxiety in me. My doc prescribed Klonopin to calm my brain so I can sleep. I take it at bedtime and carry it with me when I go out. If I have some sensory overload while I'm out, I can nibble a piece off and let it dissolve under my tongue. That provides almost instant relief.

    There are other antiseizure meds besides Klonopin which help with this. Some people take neurontin. Meds which increase GABA in the brain help with these symptoms. Do some research to find papers you can print out, highlight, and take to your doc. He is obviously not informed.

    Love, Mikie
  4. IanH

    IanH Active Member

    In what way do you think FM is related to anxiety?
    Have you received a diagnosis of FM? Of depression? Or both?
    Also note that anxiety is often a symptom of depression as is chronic wide-spread pain and fatigue.
    [This Message was Edited on 09/13/2012]
  5. Mikie

    Mikie Moderator

    Over the 12 years here, we have had people with FMS and CFIDS/ME complain of symptoms possibly related to abnormal neuron overfiring and misfiring. Dr. Cheney wrote an excellent article on this. I have been diagnosed with CFIDS/ME, FMS and letely with Sjogren's. It was my sleep study which indicated the abnormal brain function which caused my insomnia. Dr. Cheney's article mentioned the other symptoms, such as anxiety, sensory overload, tinnitus, insomnia, etc. Klonopin helps me sleep and helps with other symptoms as well.

    I'm not saying there has been a study which indicates a relationship between anxiety and FMS. I'm only citing the years in which our members have mentioned this symptom and the relief they get from Klonopin or neurontin. Some have had improvement from other things which increase GABA in the brain. Let me change my response to, "I absolutely believe there is a relationship based on empirical annecdotal evidence from out members." This is my own personal opinion and I'm not a doctor nor a medical professional.

    While we are always grateful to our professional members and the studies, papers and abstracts posted here, we also give a lot of respect to our members who post about their sympoms and the treatments which help them. This shared info has been invaluable to many of us. Almost every treatment which has helped me get out of bed and off morphine is something I first learned of here from our members.

    I do not suffer from depression. My anxiety is likely due to the slight state of seizure from which I suffer and which has been documented by tests. The only time I suffer from anxiety is when I'm in sensory overload from harsh noises and lights, strong odors, touch or too much movement around me.

    We have members who will do nothing without a scientific study to back it up. We have other members who try things empirically based on the anecdotal info they get here as long as they perform due diligence and weigh the potential risks versus the potential benefits. This is how my docs and I worked to help me heal. Neither of these methods is wrong. It's a matter of personal choice.

    Love, Mikie
  6. Mikie

    Mikie Moderator

    Fibromyalgia Depression & Anxiety

    Depression, anxiety, irritability, mood swings, personality changes and panic attacks are all symptoms that may accompany fibromyalgia. They do not cause FM; in fact, they are more likely to be the result of it. According to Dr.Robert Bennett, a reknowned FM expert and researcher, the number of fibromyalgia patients who experience depression is no greater than for any other chronic illness.

    Despite multiple studies proving fibromyalgia to be a very real physical illness, some patients still have to cope with healthcare professionals who persist in thinking it is primarily a psychiatric problem. However, the tide is turning. With the FDA approval of two medications to treat FM, more and more healthcare professionals are taking it seriously and learning how to treat it.

    If you have symptoms of depression, anxiety, or any of the other mood disorders mentioned, be sure to talk with your doctor about it. Left untreated, these symptoms can actually exacerbate many of your other symptoms (e.g., Anxiety causes stress; stress contributes to pain, insomnia, increased fatigue, digestive problems, etc.) and seriously interfere with your quality of life
  7. IanH

    IanH Active Member

    Of course people with FM will experience "anxiety" over such a devastating illness.
    However there is no evidence that FM causes an anxiety disorder or depression or vice versa. I think this is what the doctor might have been saying.
  8. Mikie

    Mikie Moderator

    I understand and agree. There is enough going on with sick people to cause anxiety and depression. There may also be physical reasons for the anxiety. In such cases, it may take medication to help with the anxiety. I had therapy when I got sick. It was my therapist who suggested my doc order the Klonopin after reading Dr. Cheney's article and the results from my sleep study. Dr. Cheney is a world-reknown expert in CFIDS/ME but my own specialist has said that often it is impossible to draw a circle around FMS without a Venn diagram which includes a circle around CFIDS/ME and the area where the common symptoms intersect. Let me see whether I can find Dr. Cheney's article. It's a good read.

    Love, Mikie
  9. Mikie

    Mikie Moderator

    Dr. Paul Cheney Discusses the Benefits of Klonopin
    (947 votes)
    By Carol Sieverling • • October 12, 2001

    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( 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."

    Rating 3.5 (947 votes)

  10. emah

    emah Member

    Thank you
  11. emah

    emah Member

    Thank you all for responses. Physically it has really been a challenge these past 3 weeks. I like to respond to all when I can but I wanted everyone to know I appreciate the responses and will be studying some of those same responses.
  12. MicheleK

    MicheleK Member

    Thank you Mikie for digging that up. Very informative. There are indeed both phyical and emotional causes of anxiety with these illnesses. Patients may feel surprised when it happens. Knowing why something may happen is the first step in dealing with it. I'm surprisde we are not all nervous wrecks to be truthful! Hugs, MicheleK
  13. Mikie

    Mikie Moderator

    I agree! Who wouldn't suffer depression and anxiety with all we have on our plates. It was such a relief to me when I found this article. It explained everything that was happening to me and gave me the treatment--Klonopin. None of my docs has ever had a problem with my taking it. I know it comes with the risk of physical dependence but, in my case, not physical tolerance. I have been on the same dose for years.

    Klonopin is one of what I call, The Pillars, of my regimen. Before I started the peptide injections, the Guaifenesin protocol was another Pillar. A third Pillar included treatments to rid my body of stealth, chronic infections. Hormone Replacement Therapy is the fourth Pillar because it stops heart palpitations. Finally, the Methylation Protocol is the fifth Pillar. Of course, there are other little things I do but these Pillars are vital in my healing regimen. Klonopin has been a God send to me, almost a miracle drug. I don't like being on a medication which causes physical dependence but the upside totally outweighs this downside.

    Love, Mikie
  14. emah

    emah Member

    I go to see my pain dr. tomorrow. I will ask him about Klonopin and see what he says. I didn't quite understand all that you wrote but what I did understand you are on the offensive with this DD and good for you. I'm gonna follow your lead. ((hugs))
  15. Mikie

    Mikie Moderator

    Good for you. We just can't depend solely on our docs even when we have good docs. We have to do our own research and ask questions. You can print out the Cheney article and give it to your doc. I did that and highlighted the important points to save him time. I explained that Dr. Cheney is one of the world's most highly respected experts on CFIDS/ME. He and his partner treated many of the victims of the cluster outbreak in Incline Village in the 80's. So, he's been at it a long time.

    Good luck.

    Love, Mikie