Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Newbie searching for a home

Discussion in 'General ME/CFS Discussion' started by hipha, Dec 28, 2015.

  1. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Hello

    Looking for some kind of acknowledgement of my symptoms. To cut a very long story short, I have been ill since August 2013 with persistent nausea although I can trace back several months even years to brief flares of symptoms. Fatigue growing and then flu like symptoms with aches all over body led to me stopping work. All standard medical tests are normal with extensive bloods completed. A friend eventually suggested that I might have an anxiety disorder so I embarked on a journey where various AD meds were prescribed none of which eased my nausea and in fact made my symptoms worse and introduced depressive feelings and anxiety for the first time especially when withdrawing from a med. I am unable to tolerate SSRI drugs like sertraline and fluoxetine with flu like symptoms and fever appearing quickly at low doses. Have tried to use diazepam but although it sometimes takes the edge off my symptoms, it does not ease my nausea or improve my mood. I am unable to tolerate any stimulants including caffeine or alcohol where before my crash I was a heavy coffee drinker. Never been able to tolerate alcohol with similar nausea and fatigue symptoms appearing throughout my life. Would spend days in bed after a drinking session.

    Fatigue is not severe level. My wife had ME for many years and so I can compare my symptoms. I do not fit 'snugly' into the ME diagnosis as my fatigue is not severe.

    I am asking my doctor to refer me to a local ME clinic but am looking for some advice or acknowledgement that my symptoms are not simply due to anxious thoughts and could be ME or dysautonomia related.

    Any advice or guidance round be appreciated
     
  2. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    In lots of ways it does sound like an ME type illness. Fatigue is sometimes overplayed, whereas the defining characteristic is really that all symptoms are worse on exertion - is this the case? It can be relatively easy to get by with fatigue at certain points of the illness and it may well be that it's other symptoms that end up being truly disabling. Different people find that the illness develops in different ways. It may be as well to see if you fit into the CDC or CCC (Canadian) definitions of the illness, if you haven't already.

    The reactions to drugs sound very ME like. Don't let doctors push you onto psychiatric drugs it you really don't have the complaints that they are prescribed for. My suspicion is that this is done rather more for their benefit than yours: if you aren't anxious, then anxiety is unlikely to be causing your symptoms.

    ME clinics may simply end up being another round of blame the patient, depending where you are. You may get some useful management advice, you may find yourself pushed into psychological therapies that can be potentially damaging. I have not found NHS advice on ME to be trustworthy and have improved far more by keeping those people as far away from me as humanly possible. Some clinics are liable to diagnose you with ME and then blame that on anxious thoughts anyway.

    It might be as well to get a diagnosis of ME/CFS from these people (if it is indeed that), but in terms of working out how to manage your illness you would perhaps be better to consult books on the subject by the likes of Charles Shepherd and work out finer points by consulting other patients. Aside from CBT/GET, the NHS hasn't got anything to offer us apart from symptomatic relief and you might have to fight for that .

    Others may be along presently to give more detailed advice on particular symptoms, but if they recommend any active treatments then you're likely to have to pay for them.

    Good luck!
     
    Last edited: Dec 28, 2015
    Sidereal, akrasia and MeSci like this.
  3. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    Do you get tired quickly?
     
  4. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Thank you for your views. I did not mention that my symptoms initially flared up after a tiring event like driving a long distance or flying across time zones. Stressful situations also seem to make my symptoms worse but again the symptoms always appear the next day.

    I am wary of visiting my local ME specialist as having a diagnosis does not really help me as there is limited treatment available at least not in the UK. Would however give me some comfort that my illness is not a mental health issue as this tends to place the focus completely on me 'pulling myself together' and thinking positively which is not helpful at all. The psychiatric drugs have really set me back further. It is a scandal that powerful toxic drugs can be prescribed to try and alleviate symptoms without an underlying diagnosis. Currently trying to withdraw off Lyrica and my body is screaming like a dependent drug addict.
     
    maryb, Sidereal, MeSci and 1 other person like this.
  5. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Yes this has been a noticeable symptom for a few years although I would describe it more like post activity malaise rather than heavy physical fatigue. Never had the energy to begin the activity but pushed myself.
     
  6. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Can I also add that I have had depression and anxiety wash over me in the last year mainly when starting or stopping yet another AD drug. I now recognise both and know that I never had either of these conditions / symptoms before taking AD drugs.
     
    maryb, Sidereal and MeSci like this.
  7. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    They do that with ME too.

    Read the PACE scandal post on this forum.
     
    worldbackwards likes this.
  8. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    That's pretty standard. Becoming angry, upset or confused can be extremely tiring, as well as both physical and cognitive activity.
    Other members have struggled badly with Lyrica, which was pushed on them against their wishes.
    Diagnosis can be useful in terms of accessing benefits if you are struggling financially, so there is that. But I agree with Ian: the psychiatrists talk a bizarre game with this illness, where they start off going on about "outmoded mind/body dualism" then expect you to think and behave your way to fitness anyway.

    They appear to be dualists themselves, couching it in a monist language so as to avoid having to say "all in the mind", which is basically what they believe. An ME diagnosis won't help you get away from these unhelpful notions at all. My own opinion is that this is no more psychiatric than any other severely disabling physical illness.
     
    Last edited: Dec 28, 2015
    MeSci likes this.
  9. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    I had nausea for decades. I tried EVERYTHING to relieve it.
    Mine was from sporadic drug use.
    Did you take any drugs (anti nausea, sleep meds, antibiotics etc) before you started to get ill. Had you previously (up to a year) come off any drugs? Alcohol?
    Prescription meds made my nausea MUCH worse. Being off all drugs for 6 months pretty much made my two decade long nausea vanish.
    Obvious really but I was naive.
    Nausea is so debilitating.
    It's the one symptom that I have got rid of and Im very pleased to see the back of it.
     
    MeSci and Mel9 like this.
  10. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    Also DO NOT let doctors tell you it is psychological and pump you full of drugs that will inevitably make your nausea worse.
    Its a bloody scandal that doctors hand out these drugs like sweets.
    AGGGGHHHHH makes me so angry.
    Idiots.
     
    MeSci likes this.
  11. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Thank you for your replies. So you mean non prescription drugs? Absolutely not. Only drug that I was taking before this episode started was a statin. I had short bouts of mild nausea during 2013 each time after traveling long distance and time to get a holiday destination. After the nausea remained I visited my GP who prescribed omeprazole. Had all the expected tests associated with the gut and all clear. My GP did not suggest at any point that my illness may be linked to anxiety although did ask if I was stressed. I continued to work for 1 year but then symptoms became too severe and the horror show started
     
  12. helen1

    helen1 Senior Member

    Messages:
    972
    Likes:
    1,363
    Canada
    Have you been tested for celiac disease and non-celiac gluten sensitivity?
    Also nausea is a fairly common side effects of statins. are you still on statins?
    @hipha
     
  13. PatJ

    PatJ far and free I gaze

    Messages:
    1,891
    Likes:
    5,171
    Canada
    The ReliefBand may help with your nausea. I've never used one but the reviews are usually very positive. It works by electrically stimulating a pressure point on one wrist. Seabands do something similar but apparently the ReliefBand is more effective, and even has FDA approval for treatment of nausea and morning sickness.

    MotionEeze is another option. It's a herbal liquid. A drop is placed behind each ear to relieve nausea.
     
    hellytheelephant likes this.
  14. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Yes for celiac during endoscopy but not for non celiac gluten sensitivity. I stopped taking statins for a year but did not make any difference
     
  15. Aviva3

    Aviva3 Guest

    Messages:
    15
    Likes:
    9
    Well I have depression, anxiety, and dysautonomia. First of all, I consider all of these to be neurological disorders. Drives me nuts (so to speak) that there is such a separation between them in medical practice and in people's minds. The stigma is great for the first two, but I think consensus is rising a bit around the notion that dealing with them does not involve just "pulling oneself together." But I sympathize. Doctors took me far more seriously when I had positive biopsies for small fiber neuropathy. By the way, I also react strangely to most meds.

    Have you had an endoscopy? Nausea can be a sign of gastroparesis, which is common with dysautonomia. Do you have any other dysautonomic symptoms? I have a bunch, including great fatigue, which is why I joined this forum. There is a really good forum for dysautonomia...DINET.. (Dysautonomia International...). Lots of great information....also doctor referrals.

    Lastly, you might have an anxiety disorder....I was really hoping that was my story. I was pretty devastated when I found out my biopsies were positive. Last week I learned I have nerve damage in my eyes.....very scary.

    So, try and let go of self-blame and stigma if it is anxiety. There are some great psychiatrist s out there (my favorite member of my team...he is also a neurologist....we have but one brain!) I really do hope that is your diagnosis, for it is your best hope for a complete cure.
     
  16. Firefly_

    Firefly_ Senior Member

    Messages:
    235
    Likes:
    539
    Oklahoma, USA
    My mom has cfs also, but her fatigue is not nearly on par with mine (her pain is more severe though) so everyone is different. Also, for me anxiety and nausea came with the disease, had no problems with it pre illness. Wanting a diagnosis is completely understandable as limbo sucks.
     
  17. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Yes I have had an endoscopy which showed no abnormalities. I assume gastroparesis is assessed along with gastritis. I had fasted beforehand so not sure how this would show signs of gastroparesis. I have used domperidone and metachloprimide with little or no benefit so this would rule out gastroparesis although not sure whether this has ever been considered properly by the medics. As I have said I never experienced anxiety or depression before commencing AD meds but now have spells of both which is either due to withdrawal from AD and / or mental reaction to my 2 year illness. I do feel completely hopeless and feel that I have been cast adrift by my GP and the local mental health unit.

    My biggest challenge is managing the expectations of myself and those closest to me. Before becoming ill, I will admit that I held a stigma toward mental health. Now I know that nobody can be 'blamed' for having an illness whatever the symptoms or source. I just need a diagnosis to help me to come to terms with this as a long term condition and also my family need to accept that things will need to drastically change.

    My GP has suggested that I need to accept and let things settle down. She does not believe that I have CFS and had never heard of Dysautonomia! How can I convince her to refer me?

    Thank you for your replies.
     
  18. Aviva3

    Aviva3 Guest

    Messages:
    15
    Likes:
    9
    Thinking it over, I am not sure about the dysautonomia hypothesis (except for your drug sensitivities). However, if you would like more information, including that prepared for physicians, you can go to the DINET website I noted earlier.

    I also realized you have not said whether you had your inner ears investigated. I think this may be worth doing....

    S
     
  19. hipha

    hipha

    Messages:
    11
    Likes:
    7
    Aviva - thank you for your response. Dysautonomia as you know is an umbrella term for many conditions of the autotomic nervous system including CFS. Why do you say that you are not sure that I fall under the Dysautonomia diagnosis? I feel that I do as do many others with mental health symptoms.... not that I desire to be diagnosed with any of the Dysautonomia conditions.
     
  20. PandaDarling

    PandaDarling

    Messages:
    93
    Likes:
    119
    UK
    Having both mental health illnesses and CFS/ME, you pretty much get treated the same with both :[
     

See more popular forum discussions.

Share This Page