Discussion in 'Fibromyalgia Main Forum' started by mimilove, Jul 29, 2006.

  1. mimilove

    mimilove New Member

    Hello All!!!

    Been wanting to write to all of you for a while now; but couldn't and also wanted to wait and make sure I had the right info for you!!! It's long but please keep reading; I think you might benefit from it :}

    How many here has heard of Serotonin Toxicity Syndrome?

    After the last time I was on here, my health got 100 times worse I would say with my weight still declining and basically my body in complete shutdown!!! I kept telling all of those Drs I was seeing (a lot....too many), they kept disrespecting me, not validating me, ridiculed. I have been called everything under the sun...a drug seeker, an anorexic, a fake...."her moves are so cautious", symptoms may be psychogenic, "going to be very difficult to handle"........basically you name it I have been called it. But never the TRUTH.

    Four weeks my migraine prevention medication was cut back in half and my anti-deppressant doubled; the next day I awoke with tremors, a snapping feeling "spasm like" in my head, total confusion (couldn't even remember the month we were in). My new neighbor (God sent), took me to the ER. Had that particular Dr not been on duty that day, it would have been another Dr accusing me of "putting" this on. This Dr is the most "humane" Dr I have ever met in my life; he basically was doing his job. He was so compassionate, caring; did everything in his power to get my healthcare to admit to not taking care of business and just letting me fall through the cracks. He wrote down everything that Drs at my own Healthcare network wouldn't.

    Two days after the ER I called 911 with chest pains; ER Dr said this is "chronic", by that time I could barely walk, I mean barely a step.

    The admitting Dr from my Health Care Network came at about 6pm; did not want to admit me. He was convinced that it was the meds, he told my husband "Look, your wife is a beautiful young woman, I believe the meds should be stopped and she needs to get into a excercise program". I thought how dare he!!! The audacity!! Finally he admitted. They ran so many tests on me; I was in there for 6 days. It was BARBARIC, they would come at 5am for my blood and couldn't get it and milk my blood down telling me "you are too thin". They would poke me 7 times to get my drip line in, and it would just fall off in the middle of the night and I would be covered in blood. It's been 4 weeks I still have bruises and calcification from being poked!

    From all the tests they ran............they found nothing!!!!!. My admitting Dr was abruptly taken "off" my case.....I wonder why?! I was given a Dr who barely or intentionaly did not speak any english. Not even the decency to introduce himself and let us know what tests they are running and by the way this came up but it is of "no concern"............because to me "All Normal" is a completely clean slate, which is not the case.

    I almost went into cardiac arrest when they gave me a shot trying to rid my migraine and inflammation I had developped in my head after the spinal tap........Dr nowhere to be found for 5 minutes. I had a migraine the whole 6 days for 24hrs and for another week after I was discharged. Finally they gave me some steroid shots; a little bit of relief and since I have been eating 5 meals a day.

    A couple days after I got out, I started feeling a little bit better; so I started cutting back on my meds but the Topamax (I had actually stopped all together but Topamax in the hospital because I was vomitting around the clock, and noticed the excruciating, out of this world body pain was nowhere near the same), but my Neurosurgeon came a couple days later and put me back on Effexor XR) guess what???????? I no longer have the excruciating, out of this world body wide pains anymore that nothing and I mean nothing would kill!!!! Don't get me wrong.........I am still in pain but it's not the same pain, it's once I start moving coming from my waist it travels up towards my neck and shoulders, arms. I take 1/2 of a 30mg morphine tablet and I can feel some relief. Then I am left with numbness/tingling in my hands, around my mouth and sometimes tongue. It can be simultenously, one at a time, and just very sweaty clammy hands and feet. Then I have this one area on my right thigh that has numbness. Then I have tightness at the nape of my neck.

    I still feel ill, like something is just not right. My admitting Dr, did come in and tell me that he definitely thinks it is the meds and most definitely an Autoimmune Disease of some type that they just can't put their finger on yet and it's going to take years to clear. I had 3 Neurologist working on me one told me he believed it was the beginning of MS.

    What I want to tell you guys is this. I hope you are still reading. I know it's long. For all of you reading this. I just got back last Friday from a follow up with a Rheumatologist in L.A. Fibromyalgia, depression, and hyperthyroidsm were ruled out!!!! She told me must have been the meds. And I have just discovered in my records that my HealthCare Network has known about this since last January and I was never's called Serotonin Toxicity Syndrome. My ex-PP writes about it, but puts me back on anti-deppressant which I am fighting not to be on telling them "I am not deppressed!!! If I am, it's the psychological wound that I am healing from what they have put me through!" Remember I told you guys the minute they gave me the first anti-depressant I immediately had spinal pain? And they changed 3 different ones, and then finally Effexor XR, so my body never could tell the difference whether the pain was for real or drug induced? I mean how could I tell? Unless I stopped it? Which happened once for 2 days cold turkey and all I did was cried uncontrollably and they put me back on it. This time I weaned myself off.

    I am not sure what is around the corner for me, the worst is knowing there is something wrong but not knowing what it is. I am feeling a lot better than before; but I am cured........NO. I seriously without a doubt believe those meds caused a damaging effect to my immune system, is everybody the I told them from get go....that I don't do well with meds...somebody posted an article from FDA warning about dangers of migraine meds mixed with SSRI'S, I think I am a victim of that!!!

    To think you could be so honest and be taken for such a liar, to have a Dr take your life for granted and treat you like a guinea pig.

    The reason I wanted to post to you is to all of you who are in doubt of your diagnosis of Fibromyalgia I believe you are correct in doubting........Don't get me wrong please.....the symptoms are real.....the diagnosis is not. The name from what I understand talking to all those Drs (after all they ruled mine out)is when they simply DO NOT know what is wrong with you they say you have "Fibromyalgia", I was told by a top Neurologist that it should never be accepted, Drs should be "challenged" to find out what is wrong with the patient and the correct diagnosis or NONE at all should be given. A diagnosis of "Fibromyalgia" is too vague, let's Drs "off the hook" too easy to work to really find out what is wrong with you. Besides there are so many things they need to rule out before they can even come close to saying that name. But mind you the symptoms many, many times come from the meds..................had I not been soooooooo close to possible death (Serotonin Toxicity Syndrome: you can be in it for a long time......I was since December 05, the only 2 things I did not suffer from but came close to were coma and death) so please I would not be saying this to you today if I had not gone through it myself.

    I always knew something was wrong........they kept telling me the only way to treat Fms is with SSRI, and I would feel worse. And no amount of Morphine would bring even the slightest relief. It was like venom, poison running through my veins. Far cry for someone who has never tried street drugs in her life and only been on advil before. It was like grenades going off inside my body, and like somebody was vacuuming the life out of me. Something was wrong I knew it; I took control. They tried to steal my identity and rob me of life. Since Jan I had been nowhere but to Dr's appointments when I could, not a single meal was cooked for my exhausted husband who did everything for me.......I mean everything. I cannot believe, would not believe how far I had fallen, just could not accept that I was this ill but no Dr would admit on paper that I was seriously ill, borderline malnourished, my organs were failing. I challenged them to admit and they had to throw out FMs and Depression. They had no choice but to throw them out.

    As of today I have cooked a couple of meals for my husband, I have been shopping (that is my new excercise routine), I have had sex with my husband again........basically slowly rebuilding my life from the emotional, physical and psychological wound that my healthcare network put me through all because I went in with a migraine and the Dr couldn't give a damn and diagnose me with depression against my will and sent me to "behavioral health" and I thought I was going to migraine therapy.

    To all of you I say this Beware of your meds! Take control of your lives, it may be easier than you think............I saw no light at the end of the tunnel. I thought I was dying.....I came close to it. Taper off the meds, not to all but to some people medications can have damaging effects. I will never take another drug unless it's going to save my life. I currently take Topamax for migraine and as needed 1/2 morphine but I suck up the pain as I am not sure of the cause of it yet. I think my migraines have gone haywire a lot to do with my environment and I will take care of that too, because I don't see myself being on Topamax for the rest of my life.

    Good luck to all of you. Please write to me if you have any questions and I will be so happy to answer them :}

    Love Mimi
    [This Message was Edited on 07/29/2006]
    [This Message was Edited on 07/29/2006]
    [This Message was Edited on 07/29/2006]
    [This Message was Edited on 07/30/2006]
  2. leubie

    leubie New Member

    Mimi, That is a unbelievable( BUT I DO BELIEVE )--------I understand what you have been going through as your life probablies echos mine and alot of others here to some degree if not all-----------Thank - you for sharing all of that w/ us-------------Im sure it took alot of you emotionally and psyically----------to write all of that-----------THANK-YOU for taking the time to share this------------TRUST ME------------I am saving this and taking notes-----I go to my monthly Doctors ( Neuro) appointment next week and I shall bring up this info----------------TAKE CARE OF YOU SELF------------GLAD YOU ARE BAGK-------PLEASE KEEP IN TOUCH----------------LOVE TO ALL ------------LAURA
  3. kriskwon

    kriskwon New Member

    Hello. I'm pretty new here, so I don't remember you - but what an interesting story. I believe every word of it. I go to a Nueroligist whose the #1 doc in his field at the Houston Medical Center.

    The day I saw him, I was at my worse. I felt sooo bad. Every bone in my body ached, i weighed 135 lbs (never weighed more than 115 in my whole life), and very, very sad.

    When he heard my whole story. this is what he told me: 1. You have Nueropothy in your right leg

    2. You've permanetely damaged your left thigh joint (Years of abuse from Tae Kwondo)

    3. I'm totally perplexed about your shingles. You must have a virus running amuck in your spinal fluid. At that point I've probably had then 20 or so times.

    4. I'm gonna write down "FMS" as your diagnoses so you can get some pain medication, but I don't believe you have it.

    5. I'm not sure what this "FMS" is. None of do, but we ARE looking. I do believe though, if you give in to FMS, 5 years donw the road - you will be worse. You'll take too many pain pills, everyone else that has it will think that they're an expert and in the meantime, some will push natural paths (won't help, won't hurt - expensive).

    Your post made me realize, he was right. That's exactly where I'm heading. First thing I'm gonna do is make and appt to see him again. The next thing I'm gonna do is get up and make myself get on my treadmill. While I'm waiting, I'm gonna think on searching.

    Thanks Mimi.
  4. mimilove

    mimilove New Member

    Thanks for your replies. Honora your story sent chills down my spine. I had never before in my life been anywhere near that world "depression", to go in with a migraine and be diagnose with depression is all to sureal to me.

    Kriswon if I can do it so can weight dropped to 87lbs, I was drinking a couple sips of ensure a day and a couple of forkfuls of food. My throat was sealed, food would not go down. From Jan to late March I begged them for a colonoscopy because I spent 95% of my time on the toilet, they refused me 3 times. Instead he wrote in his medical notes I had constipation. I now suffer from a chronic bowel disease. My weight is now 98lbs but I still look weak. Never give up, never accept. I sat through those people writing the worst things about me; but I knew my day would come that they would be forced to admit the Truth. Never be intimidated by someone's title.

    I went from wearing 5" heels and walking like I was on a catwalk to barely being able to walk and none of those damn Drs admitting there was something wrong with me. I cannot tell you the anger, rage, bitterness that is inside of me. I have confronted all of them from top down.

    Love Mimi

    Leubie sorry I had not seen your reply.....many thanks. Yep that is my story. I wanted to punch that Dr when he told us that (the admitting Dr), I thought the audacity!!!! But, he was and is the only decent one. I will be calling him to let him know just how things are working out.
    [This Message was Edited on 07/29/2006]
  5. Lolalee

    Lolalee New Member

    Hi Mimi, first of all, I don't believe I got through your post...LOL. It is usually so difficult for me to read long posts, but your post really held my interest. I'm so sorry that you had to go through so much humiliation among other things.

    I have said more than once that Doctors diagnose FMS when they don't know what is wrong with patient. I do believe that there are many people who have been told they have FMS by their Doctors when it may be something other disease or syndrome. Some doctors do not run tests to eliminate other diseases. Some doctors do not do tender point exam. Many doctors don't believe in FMS, yet they diagnose it.

    What in the world is a patient to do?? Some people get well because they didn't have FMS in the first place and then along comes the perception that FMS has a cure. What a mess!!!

    Mimi, you are right to advise others to take control of their lives and their health. I've been taking meds for years to mask the symptoms and am feeling increasingly worse.

    Good post. Best of luck to you.

    [This Message was Edited on 07/29/2006]
  6. kjfms

    kjfms Member

    So glad that your neighbor was there for you and that physician was duty. I am so happy you are feeling better and have found out the problem.

    I am sorry you had to go through such a rough time.

    I had been wondering where you were-so glad you are OK now.

    May your days continue to get better,

    Karen :)
  7. hugs4evry1

    hugs4evry1 New Member

    I'm so glad you're starting to feel better...and you've found out what was causing your pain.

    I wonderif someone else on the board would benefit from your story.

    Dani, did you read this???


    Nancy B.
  8. sues1

    sues1 New Member

    You are one tough gal. I am so pleased that you are on the road to get better.

    I believe every word you wrote and you explained very well.

    I just had to reach out to you with gentle hugs...prayers and many blessings...........Susan
  9. julieisfree05

    julieisfree05 New Member


    I'm so glad that you were finally diagnosed correctly, but I have to disagree with your neurologist..

    Serotonin Syndrome is a REAL diagnosis, but so is FM.

    When I developed FM after a toxic exposure, I was taking NO medications that increase serotonin. Over the 14 years that I was ill, I did take TCA's and several SSRIs (for very short periods), but they didn't help my FM - or make it worse.

    FM is often used as a "wastebasket diagnosis" by doctors who don't know what you have, but it is a very well researched and defined illness.

    My FM doctor (one of the top researchers in the world) has been researching it for about 25 years, and there is no doubt that it is a distinct illness with tons of peer reviewed research. The findings by different researchers are so consistent in so many areas that there is no doubt FM is a distinct illness.

    I'm not trying to start an argument, I just want to be sure that PWFM - who have been correctly diagnosed! - KNOW that it IS a "real" illness.

    Again, I'm thrilled that you were able to find out that you had something else and have been able to improve your symptoms.

    My FM is virtually gone thanks to Xyrem - which treats the underlying CNS dysfunction and the sleep disorder that virtually all FM patients have - and it doesn't affect serotonin.

    Continued good health!

    - julie (is free!)

    She could have laid in bed for hours
    givin' misery the power
    but she didn't have time.. - Terri Clark
  10. mimilove

    mimilove New Member

    Thanks for all your replies; I appreciate you guys support in my road to recovery.

    Julie just wanna say I do believe you because I had all the symptoms of FMS; I mean my list of symptoms was endless. Everything I see on this board that people bring up that are bothering them I had and then some. What I do believe though is something definitely triggers those symptoms and for different people it's different things.

    For me it was medications obviously; without a doubt the symptoms are real!

    What triggered big questions for me is my skin started discoloring and peeling? I was losing hearing in my left ear and sight in my left eye as a result; I just knew on top of all that all those things couldn't be happening at the same time to just one just did not make sense. And absolutely no relief from no amount of morphine.

    Glad to hear you are getting better too. Hope all goes well.
  11. Daisys

    Daisys Member

    I have never sued anyone in my life, but you definitely have a case. Those doctors should be called to account for their malpractice of medicine and I recommend you get a lawyer.
    I just backed a rant off this post. (You probably know the feeling anyway!) I hope you find a doctor who knows what he's doing and cares about you.
    I was treated like a malingerer too, when I seriously needed help. But they didn't almost kill me while having access to the correct diagnosis.
    There are good doctors out there. I found a good one who specializes in FM, which I have. I'm getting better at a steady rate (I'm on xyrem)
    I sure hope you heal, and you and your husband have peace and relief.
  12. mimilove

    mimilove New Member

    Bumping to bring awareness.

    Thanks for reading
  13. 1sweetie

    1sweetie New Member

    I found your post and am so glad. I don't know what to say except I am glad that you are here to tell us what happened to you.

    SSRI's are being pushed by every type of doctor and there are some of us that just can not take them.

    I hope you continue to heal and keep your post bumped for a few days so that everyone will get a chance to read.

    I'm sure more people are reading than posting. I have days and weeks where reading is all I can do. Please don't think because everyone is not replying they are not reading. They just may not be able to today.

    I wish you continual healing.
  14. lenasvn

    lenasvn New Member

    You said:

    The reason I wanted to post to you is to all of you who are in doubt of your diagnosis of Fibromyalgia I believe you are correct in doubting........Don't get me wrong please.....the symptoms are real.....the diagnosis is not. The name from what I understand talking to all those Drs (after all they ruled mine out)is when they simply DO NOT know what is wrong with you they say you have "Fibromyalgia", I was told by a top Neurologist that it should never be accepted, Drs should be "challenged" to find out what is wrong with the patient and the correct diagnosis or NONE at all should be given. A diagnosis of "Fibromyalgia" is too vague, let's Drs "off the hook" too easy to work to really find out what is wrong with you. Besides there are so many things they need to rule out before they can even come close to saying that name. But mind you the symptoms many, many times come from the meds..................

    I responed to another post about SSRI's and what they can do. Serotonin toxicity is one bad reaction, I am glad you pulled thru alive, not all do.

    Are you saying that there never was FM for you, or for all who have FM? Sorry about the question, I am just not sure!

    FM and CFS have showed increased supstance P in the spinal fluid. I never had serotonin toxicity, I am pretty sure FM is what I have. I don't take any meds right now except for BP meds. No pain killers, no nothing. I am still FM'y like I've been for the past 20 years. There are some other signs, like high cholestorol and Rf factor that many docs are not informed about whn it comes to diagnosing FM.

    Bless yuour heart for a long post! It is an amazing story to read. I hope you are getting much better, fast!


  15. Bambi

    Bambi New Member

    that different things set off what may be lying dormant in our systems due to..who knows what. I tend to believe that guy that discovered the Mycoplasmas, that it was something done to them to cause them to be effective in warfare. I also believe that these super "bugs" were then sprayed, first in either Florida or in Lake Tahoe and in parts of Canada to "test" them. But whatever happened, whether it is the virus they just discovered that first began in pigs..SOME thing causes the FM to
    enter our systems and lie dormant until some major stress, physical or
    emotional overwhelms our systems.

    For some it's a car accident, others it can be a death of a loved one, physical and/or emotional abuse, a bad case of the flu..things like that that set the various viruses into action. They say now just about if not EVERY one tested would be found to have the Mycoplasms either dormant or active. Then there's the Tick Fever, all the stealth viruses etc.

    Parts of the FM disease is so similar
    in most of us, some in a few of us. I see no reason why a shock to the system related to a medicine wouldn't be just as much of a stressor as far as kicking off the disease.

    Like so many things we may never know the actual bottom line cause or if it was a man made or act of nature thing. Then too maybe those of you with great grandchildren..if "the Good Lord's willing and the creek don't rise" as old Tennessee Ernie Ford used to say...may learn the truth in their lifetimes.
  16. spacee

    spacee Member

    I normally can't read long posts but I read this one. You are so lucky to be alive. YOu have certainly been through it.

    I am going to keep this info. Thanks you so much for all the effort to write it.

    Much love,

  17. barbinindiana

    barbinindiana New Member

    The 4th leading cause of death in the US is prescription drugs taken as prescribed.

    Look it up. It on the net.

    So sorry that you had to go through all of that Mini. You really are lucky to be alive.

    We all need to do our homework when it comes to the meds we are prescribed. We can't count on the doctors for this even though we are paying them good money to take care of us.

    I hope you continue to get better and better.

    Bless You,
  18. carebelle

    carebelle New Member


    I bring you this article because I have had two inadvertent instances of Serotonin Syndrome. The first time was when I had been on Phen/fen, Lithium, and Elavil when a new psychiatrist added Prozac to the mix. Within a very short time, I was rendered completely housebound, having to crawl up my stairs, afraid to drive because of feeling drunk and dizzy, clumsiness, and with the mental status changes severe enough to for me to completely unable to identify what was wrong with me.

    The second time was when I was off all psychotropic (i.e., mood-alternating) drugs and tried 5HTP. Since I had little response at the smaller doses, I increased my doses to the upper end of those recommended. Soon I was having chest pains and increased clumsiness. I was able to identify the problem and weaned off the 5HTP. ©Marilyn Kerr RN 1998-2001

    "The serotonin syndrome is a hypersotonergic state which is a very dangerous and a potentially fatal side effect of serotonergic enhancing drugs which can have multiple psychiatric and non-psychiatric symptoms. It is a condition which has been on the rise since the 1960's when we began using more and more drugs which directly affect serotonin. This is a toxic condition which requires heightened clinical awareness in order to prevent, recognize, and treat the condition promptly. Promptness is vital because, as we just mentioned, the serotonin syndrome can be fatal and death from this side effect can come very rapidly. This syndrome is a toxic hyperserotonergic state whose rate of incidence is unknown, but is on the rise. The suspected cause of that increase is the introduction of the new selective serotonergic enhancing agents in clinical practice - the SSRIs. This disorder, brought on by excessive levels of serotonin, is difficult to distinguish from the neuroleptic malignant syndrome because the symptoms are so similar. The neuroleptic malignant syndrome is a serious condition brought on by the use of the neuroleptic drugs.

    "The symptoms of the serotonin syndrome are: euphoria, drowsiness, sustained rapid eye movement, overreaction of the reflexes, rapid muscle contraction and relaxation in the ankle causing abnormal movements of the foot, clumsiness, restlessness, feeling drunk and dizzy, muscle contraction and relaxation in the jaw, sweating, intoxication, muscle twitching, rigidity, high body temperature, mental status changes were frequent (including confusion and hypomania - a "happy drunk" state), shivering, diarrhea, loss of consciousness and death. (The Serotonin Syndrome, AM J PSYCHIATRY, June 1991)

    "The serotonin syndrome is generally caused by a combination of two or more drugs, one of which is often a selective serotonergic medication. The drugs which we know most frequently contribute to this condition are the combining of MAOIs with Prozac (this should also include the other SSRIs) or other drugs that have a powerful effect upon serotonin, i.e., clomipramine (Anafranil), Trazadone (Deseryl), etc. The combination of lithium with these selective serotonergic agents has been implicated in enhancing the serotonin syndrome. The tricyclic antidepressants, lithium, MAOIs, SSRIs, ECT (electric shock treatment), tryptophan, and the serotonin agonists (fenfluramine) all enhance serotonin neurotransmission and can contribute to this syndrome. Anything which will raise the level of serotonin can bring on this hyperserotonergic condition. The optimal treatment for the serotonin syndrome is discontinuation of the offending medication or medications, offer supportive measures, and wait for the symptoms to resolve. If the offending medication is discontinued, the condition will often resolve on its own within a 24 hour period. If the medication is not discontinued the condition can progress rapidly to a more serious state and become fatal. It should be apparent that the greater the enhancement of serotonin levels, the greater the chances of producing the serotonin syndrome. Therefore it is recommended that Zoloft, Prozac, Paxil, Luvox, Serzone, etc. not be used concurrently with each other or any other serotonergic drugs and that these serious adverse reactions should be expected with these combinations (Callahan, 1993). (PROZAC: PANACEA OR PANDORA?, p. 88)"

  19. Cromwell

    Cromwell New Member

    I am so sorry about this terrible ordeal. I can believe it as I lost a good friend last year in a hospital where she had been having the same treatment, kept going to ER, no one would beleive her, even her family told her kids, "Your mom is like a child and you must remember that". She was a smart, intelligent woman. Strangely she was told it was because she was fat!!!

    She was begging for help. She died in her sleep last November and she was very young early 40's. We just finally discovered the docs had put her on a med, just one dose, that killed her by causing this sort of toxicity.

    I miss her and wish she could have gotten some respect. So good for you for finally finding out before you became another statistic.

    I am really allergic to most meds, they make me feel terrible and I was almost killed by one a few years back, it killed a lot of people and yet is still being used, not all the time but certainly it is available. I cannot beleive drs still script it!

    Please keep on getting better. You may need some really fantastic extra nutrition now I would think. Your body has been under awful stress.

    God bless and good luck,

    Love Anne Cromwell
  20. wildflowers2

    wildflowers2 New Member

    Thank you for ALL this good information.

    I had always had really bad side effects to these happy pills.

    I had agreeded to take only 12mg of Zoloft. And still
    felt like crap. Well, wiht my hubby being in/out of the hospital I forgot to take the Zoloft. It has been over a month
    and I no longer have severe diarreha, can travel w/o the fear
    of and 'accident while driving/meaning needing a bath room asap.

    Need to know..they dont need to know I am not taking the crap or they will tell me I am not following thier protocol.

    FOr the long term disability of SSDI.

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