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How to ease the fear that accompanies M.E

Discussion in 'Lifestyle Management' started by Ivana, Jun 6, 2012.

  1. Ivana

    Ivana Senior Member

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    Hi all

    I don't know if anyone else experiences this but as a result of M.E, I have developed a deep fear of just about everything. Fear of what symptom will hit next, will I be able to get out of bed later, will I ever recover etc. It is paralysing! I am seeing a psychologist but I'm mostly fearful about what symptom will hit next, and this is something that not even the psych can help with as the symptoms are very unpredictable and I never know when they'll hit. I am petrified all the time. Any thoughts?

    Best wishes
    Ivana
  2. jeffrez

    jeffrez Senior Member

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    The best way not to worry is just to not worry. Sorry to sound flippant, I know how difficult it can be, but trying to distract yourself when those kinds of worries arise and refocusing on the present moment and what you're doing in the present is probably the most effective way of dealing with those kinds of disasterizing worries.

    It helps if when you catch yourself worrying about something you can remind yourself not only that the worrying won't prevent it from happening, but in fact even could make it more likely to happen, as every time you worry you 'program' your consciousness & unconscious with those thoughts/images/feelings, etc. Then, as you're reminding yourself of the futility of worrying, direct your attention to something else, preferably something concrete you're doing in the present, whether looking outside at the sunset, washing a dish in the sink, or even just sitting and feeling yourself in your chair, lying down, etc.

    If the worrying is simply too excessive, is too difficult to distract from, takes up too much of your time, attention, energy, trying some SSRI or other antidepressant or possibly benzo could help, or gentler herbal versions like St. John's Wort, passionflower, anti-stress/anti-worry herbal formulas, etc. Best way is to get to the root of the problem and address that, which perhaps the psychologist can help with. But in the meantime, medications and supplements can help ease things until you get to the point where you don't need them anymore and can wean off them.
  3. Wayne

    Wayne Senior Member

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    Hi Ivana,

    Singing HU helps me dissipate fears associated with the unknowns of ME/CFS perhaps better than anything else I've tried. The link will take you to a well done 3 1/2 minute video which explains more about it.

    Best, Wayne
  4. Ivana

    Ivana Senior Member

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    Thank you both so much! I'll try everything and anything.. I fear my fear!!
  5. L'engle

    L'engle moderate ME

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    If you can divert your mind to something that is funny or soothing it may help. goofy youtube videos, cuteoverload, anything to break the thought pattern and let out the emotion some other way.:hug:
  6. alex3619

    alex3619 Senior Member

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    Fear can arise from focussing on things that make you fearful, although some if it is stimulus-response and so automatic. This is unfortunately one reason why psychobabblers claim CFS (and by their inference ME) is psychological. Try not to think of an elephant! Its hard to not think about something. Its easier to think about something else. Learn to focus on other things, things that help you, things that interest you, or just things that distract you. Find interests that you can handle - whatever they might be. This can also help with pain and boredom, not just fear.

    So in essence I agree with Mr Kite.

    Bye, Alex
  7. jeffrez

    jeffrez Senior Member

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    That HU technique looks very promising, thx for sharing that, Wayne. There are all kinds of mantras if that one doesn't resonate with you, so finding one you like definitely can be a good approach! Hu looks pretty good, though. :)
  8. xchocoholic

    xchocoholic Senior Member

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    Focusing on trying to heal my me/cfs has helped me tremendously. I just took meds and got sicker for
    15 1/2 years not realizing that there were progressive alternative treatments I could be trying. duh ..

    also, I see a functional medicine doctor
    who helps me by always looking for root causes for my symptoms. Be it diet, nutritional
    deficiencies, parasites, etc. I'm a celiac with damage to several organs so my case is complicated.

    Coming here, and a few other places on the web, and reading what others are trying helps me stay calm too.

    Tc .. X
  9. adreno

    adreno 3% neanderthal

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    Ivana, I noticed you have a thread on tachycardia also. I believe tachycardia and fear is connected. I find that when my potassium levels are low, my heart rate goes up, and I get anxious to the point of panic. My mind starts to invent reasons for my fear. When I get enough potassium my heart rate returns to normal and my fear goes away.
    taniaaust1 likes this.
  10. Ivana

    Ivana Senior Member

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    Hi adreno, I also have low potassium levels, but taking potassium makes me sicker.. so my doc is in the process of trying to find a new form of potassium to give me. My fear is mainly during the morning/day, when my symptoms are the worst.. they ease up in the evening so I'm less fearful then.. I always look forward to going to sleep coz every night i dream that i'm healthy and it makes me happy.
  11. Ema

    Ema Senior Member

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    Have you ever had a saliva cortisol test?

    Fear goes right along with low cortisol. In fact, when I start feeling overwhelming fear, it's one of my main warning flags that I need to take an additional stress dose of cortisol. It was pretty much constant and overwhelming until I got on a full replacement dose of HC and now it is basically gone. I still feel sad/angry/depressed from time to time over having a chronic illness but the irrational fear part is gone.

    Another thing that makes it sound like low cortisol is the cyclic rhythm to your symptoms. Many people with low cortisol have levels that start to perk up as the day goes on and feel better in the second part of the day on through bedtime. That is a very common pattern.
    taniaaust1 likes this.
  12. SOC

    SOC Moderator and Senior Member

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    If you've tried all the things already mentioned above and you still have paralyzing fear, you might want to consider an anti-anxiety medication. We certainly have enough things going wacko neurologically that it wouldn't be surprising to have something off with your neurochemisty. I know a girl who got her life back by using anti-anxiety meds. While I'm disgusted the way some doctors pass them out like candy at every sign of a life stress, for the right people with the right conditions, they are excellent meds.
  13. Ivana

    Ivana Senior Member

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    Hi guys,

    thanks for your replies. Ema, i had my cortisol levels checked and theyre in the high normal ranges, suprisingly.
    Soc, i'm on anti anxiety meds at the moment, with no help at all.
    I find that my symptoms control my mood a lot. If i'm somewhat ok for 2 days, i'll be over the moon. The second they flar up, which has happened a lot recently, i get very fearful and anxious. Sometimes, even if symptoms are ok, ill still cry during the day as i think of what healthy people are doing at that time. I know its not helpful at all, but i cant help it, the tears just come. I cant seem to accept the illness.
  14. taniaaust1

    taniaaust1 Senior Member

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    Im a ike that too at times but fortunately only iIf I know Im about to crash. I get scared as Im only too aware of just how bad I can possibly crash.. and that is so darn scary. The worst ones experiences have been with the illness, the more one be (reasonably) fearing a crash.

    I hope you get more control over the illness soon, as that can help prevent a lot of this fear when one feels more in control of it (eg good pacing and good symptom management) and ones life.
  15. alex3619

    alex3619 Senior Member

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    Hi Ivana, you might be mischaracterizing some of the symptoms. I can only speak for myself, but it would be easy for me to think of my own issues the way you do if I wasn't careful - and I have been thinking about these things for decades. I am typically not depressed. Bored yes, depressed no. I am also typically not anxious - I am midly anxious about doing things that I find very unpleasant such as things that increase pain or exhaustion, but that isn't the real problem. Its entirely natural to not want to do things that I find painfull, exhausting or confusing - it would be a problem if it didn't cause some anxiety.

    Now to my main point: I am very unhappy if I let myself dwell on things. We lose so much: our dreams, ambitions, goals, hobbies, friends, family, finances, etc. This is not depression. We don't lose the desire to do things. On the contrary, I am unhappy because I still want to do all those things I can't do. I don't accept it either. I still fight it. I intend to keep fighting it till I win or die trying. Being unhappy with our circumstances is only to expected. Its not a disorder, its the normal human condition. Our lives suck. Why should we be content with that? Indeed, it is partly because my life sucks, and partly because I see similar pain in others, that drives me to advocacy. I don't intend to just passively accept it. This is not something I can "get over". All I have been able to do, in many years thinking about these things, is put it in perspective, understand it and recognize my limitations. There is no getting over this short of a cure or effective treatment - but I can learn to deal with it.

    I hope this helps you, though I cannot be certain my experience even applies to you.

    Seriously debilitating fear though is something else, in which case we are back to the advice you have already received. Not accepting your situation however is, in my view, entirely normal.

    Best wishes, Alex
    taniaaust1 and Wayne like this.
  16. Ema

    Ema Senior Member

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    Looks like high cortisol can also have an effect on fear...learn something new every day!

    http://www.ncbi.nlm.nih.gov/pubmed/16840843

    I'd be curious to see your results if you have any desire to post them.

    Try not to beat yourself up over this one. Fear/depression/anxiety often have a biochemical basis and there is very little you can do in terms of therapy to overcome this. Just do the best you can and utilize whatever therapies and treatments offer some relief until you can get to the basis.
  17. Ivana

    Ivana Senior Member

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    My results were 600 from a range of approx 20 - 620. So a fair bit on the higher side. I also had a naturopath do a saliva test for me which showed elevated cortisol levels all day. Hmmm, I wonder what can cause them to be a bit lower
  18. jeffrez

    jeffrez Senior Member

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    You might consider trying rooibos tea. It has good anxiolytic properties, and also has a very strong inhibitory effect on adrenal steroid output. So it would probably lower your cortisol and also relieve a lot of anxiety as a bonus.

    Are we allowed to post abstracts?

    adreno likes this.
  19. Ema

    Ema Senior Member

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    Well, phosphatidylserine for one can powerfully lower cortisol levels and that is an optional part of the methylation protocol already!

    If it's been more than about 6 months since your saliva testing, I would consider doing it again just to be sure. The last thing you want is to find out that your high cortisol has progressed to low cortisol or a swinging high/low rhythm (as is typical) and you are lowering it further with supplements.

    Too high cortisol will also interfere with proper thyroid functioning.

    I can make a list of supplements as long as my arm that may help to reduce cortisol. High cortisol is difficult because there are so many options and what will work best seems to be highly individual depending on what else is going on and how the major symptoms are presenting. If you're interested, I'll dig out the list.
  20. Ivana

    Ivana Senior Member

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    Thanks, Ema. It's been over 6 months since my last test so I'll have it re-tested. My thyroid results are also starting to show bad results :( Any information you have would be very much appreciated!

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