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My doctor won't take me seriously

Discussion in 'General ME/CFS Discussion' started by nostalgic, Aug 23, 2017.

  1. nostalgic

    nostalgic

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    About 5 weeks ago I got serotonin syndrome. I took 5mg of Escitalopram for a couple of days, and on the 4th day I added 12.5ml of flaxseed oil to the diet and got a mild case of serotonin syndrome and I still haven't recovered from it fully - some muscle spasms and numb feelings. I'm also incredibly sensitive to tryptophan rich foods which brings me back to the syndrome.

    Talked to my doctor about lengthening my sick leave due to being very fatigued, and his response was that my fatigue is caused by anxiety and I should start slowly getting back to work in a month. He also wants me to start taking SSRI again since he's so sure it will cure me but I'm afraid I might die if I do, I can't even eat food with much tryptophan in it without damaging the recovery, what would happen if I took an SSRI?

    If I don't do what he says I won't receive any money for being on sick leave, and I don't know what I'm gonna do. Should I take a very small amount and end up with a worsening of my symptoms just to show them I'm really sick? If so, I'll stay close to the ER to reduce the risks. Any advice is much appreciated.
     
    Countrygirl likes this.
  2. JES

    JES Senior Member

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    The advice I'm gonna give you, while it may sound wrong and I'm no doctor, is don't take the medicine if it will produce issues like serotonin syndrome. All you have to do is get the medication from the pharmacy, that is the only thing they can check. AFAIK this is quite common practice among people who cannot tolerate antidepressants, but need to take them in order to get their sick leave or whatever.

    But if you decide to continue, lots of people on this forum seem to have better success with low-dose SSRI, as in 1/4th or 1/2 of the common starting dosage. I had the same experience when I trialed Prozac for anti-enterovirus purposes. I felt the balance between effects/side effects was best in the 5-10 mg dosage range. The common starting dosage is 20 mg.
     
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  3. nostalgic

    nostalgic

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    Thank you for replying. I would only do it to prove that there's something more wrong with me than just simply having anxiety.

    I would take even less than 1/4 if I were to do it, seeing as I still haven't recovered from the previous one by any stretch of the imagination. I have way less anxiety than I used to do, barely any actually, but the fatigue is way worse. Doctors seem to think that once you get psychological issues, every future issue resembling a psychological one has to be psychological.
     
    Invisible Woman likes this.
  4. TigerLilea

    TigerLilea Senior Member

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    @nostalgic Who diagnosed the serotonin syndrome? You or your doctor?
     
    Kati likes this.
  5. nostalgic

    nostalgic

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    An ER doctor.
     
    sue la-la likes this.
  6. 5150

    5150 Senior Member

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    No brainer: Your doctor doesn't understand your illness.
    I would try to find another one who does.
     
  7. nostalgic

    nostalgic

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    I think I will but I'm gonna have a meeting with the authority that pays sick people in less than a month and I need him for that at least - since he wrote the doctor's certificate - I'm pretty much forced to.
     
    sue la-la and Invisible Woman like this.
  8. mango

    mango Senior Member

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    You could tell him that you "will think about it", but that you need more time in order to read up on the research on ME/CFS and SSRIs and the risks involved etc first, because you want to make an informed decision. That will buy you some more time, hopefully.

    And if you're lucky, maybe he has forgotten about it by the time you see him again? Or, if not, you could perhaps hand him a list of studies, quotes from evidence reports etc, that back up your decision?
     
    sue la-la, Valentijn and nostalgic like this.
  9. nostalgic

    nostalgic

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    Haven't received the diagnosis cfs from a doctor, I just expect I have it since all of the symptoms and the course of the disease fits my symptoms like a glove. If I'd say the word cfs to my doctor I think he'd just dismiss it and think of me as a hypocrite. It usually takes years to get that diagnosis in Sweden, and I've had it for less than one.

    At the meeting they'll discuss my road to recovery and that includes forcing SSRI on me, but I'll try to get a new doctor after the meeting. I'll think about what studies and reports could be useful in my case. Thanks for the suggestions.
     
  10. mango

    mango Senior Member

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    Oh, I'm sorry, I can't remember reading your earlier posts so I didn't know you haven't been diagnosed. My apologies!

    I'm in Sweden too, so yes I am all too familiar with the problems... In my case it took 7 years before I got diagnosed (for a long time I was wrongly diagnosed with recidiv depression, burnout/utmattningsdepression etc, even though I've never been depressed).

    When the doctor tried to force me to take SSRIs (she threatened to end my sick leave if I didn't cooperate, which meant I would have lost my sickness benefit/sjukpenning), I did what I suggested to you in my earlier comment. I told her that I needed to look into it and read some of the research before I was ready to make a decision. I was lucky, she then forgot all about it and never brought it up again.

    I'm so sorry that you're having to go through this :( I really hope the situation improves for you very soon.
     
  11. TrixieStix

    TrixieStix Senior Member

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    With ME/CFS other conditions that can cause same/similar symptoms should first be ruled out. It is a diagnosis of exclusion.
     
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  12. Richard7

    Richard7 Senior Member

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    @nostalgic

    Hi, I'm sorry to hear about your all too familiar circumstances.

    I was just wondering about the anxiety, the flaxseed oil and the serotonin syndrome.

    1) I do not know if it will work for you but I found Hip's mix of tumeric, flaxseed oil and NAG helped me with anxiety.
    http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

    I also have PoTS and have found that that taking salt and potassium and resting appropriately etc seems to help. Or rather that pushing myself when I have bad PoTS or pushing myself into bad PoTS leads to anxiety.

    2) I was wondering if you thought that the flaxseed oil was part of your problem, and if so if you knew the mechanism. (I take 30mls or more per day.)
     
    nostalgic likes this.
  13. alex3619

    alex3619 Senior Member

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    Can you contact a lawyer, and afford to? There is a potentially actionable case here. You don't need to actually sue, just a letter from a lawyer, giving details of the ER doc diagnosis, should be enough.
     
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  14. Skippa

    Skippa Senior Member

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    Hi, taking the pill and getting ill WILL NOT convince your doctor you really are ill.

    This happened to me, I got serotonin syndrome (diganosed myself for reasons you'll see) but whatever I told the doctor I was experiencing they insisted "it is impossible to feel any effects from SSRIs for 4 - 6 weeks" and therefore "it is just anxiety".

    It was the darndest, weiredest most hellish experience you can encounter, way beyond anxiety (I'm no stranger to anxiety) and the akathesia makes you think dark thoughts just to make it go away.

    Not worth it.
     
  15. sue la-la

    sue la-la

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    is it possible for the ER doctor to send a letter to your normal doctor,
    confirming the diagnosis of serotonin syndrome ?

    that might stop the pressure to take SSRI.
    then you can get sick leave money.
    then you find a doctor who is less ignorant ...
     
    nostalgic likes this.
  16. nostalgic

    nostalgic

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    No need to apologize, how could you possibly know? :)
    Did you get diagnosed at a physician or a specialist? What city?

    A few hours ago I took a pill of 25mg Hydroxyzine and got some reactions I never got when I used to take 100mg before - I'm currently suffering from some severe pharmaceutical sensitivity. Hope I can get my doctor to believe me.

    Yeah, unfortunately there's no biomarkers for ME/CFS yet.

    I can't even tolerate tryptophan in millet atm so I'm not going anywhere near flaxseed oil for a very long time. I don't think flaxseed oil per se was the problem in my case, I'm probably just oversensitive to drugs these days (hopefully temporary).

    It's very uncommon to do so in Sweden and I don't know if it would be of any help, but I'll keep it in mind in case the doctor won't cooperate, thanks.

    I'm well aware of the risks and it'd only be my last resort, I hope to get the doctor who's been following up my serotonin syndrome to understand my current sensitivity to meds. How long did it take for your symptoms to clear from the syndrome?

    Thanks for the tip, but yeah, my doctor told me that he would contact the ER and read the journal but he said he can't see why there would be any risk to try a pill again. I'll try to get him understand the severity of my case or ask for a new doctor.

    I appreciate all the replies.
     
    sue la-la likes this.
  17. Skippa

    Skippa Senior Member

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  18. TrixieStix

    TrixieStix Senior Member

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    Years ago I experienced Serotonin Syndrome from taking Tramadol. After about 5 days of taking it I felt manic, super hyper, could not stop talking and knew something was off. I called my doctor and they told me to stop taking the drug immediately. It's listed on my medical information as one of my "medication allergies" and no doctor has ever suggested I try taking it again.
     
    nostalgic likes this.

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