Is it all in my head?

Just curious if anyone else here suffers from anxiety that "how sick they are" is all in their head.  I have days where I feel ok and can do some ADLs and others where I am extremely hypotension, short of breath, etc just doing ADLs.  The waxing and waning makes me have anxiety where when I am having a good day or two I start to think it's all been in my head and I am not that sick.  Albeit if it was all in my head I would be very very sick in some psychological ways lol.  Just curious if anyone else rides this rollercoaster and how they cope?


7 Comments

Not Sick but it is related to thinking

by Swangirl - 2021-05-10 23:49:50

Anxiety most of the time is caused by what we are thinking.  Some small percentage may be physiological but entertaining negative thoughts, "what if" thinking, and predictions of doom will trigger your body into the flight or fight mode and stir up stress hormones.  Often we notice the symptoms and don't track it back to what we were thinking or what triggered the thoughts.  That's a skill and one we can practice.  Recreate what thoughts may have caused your anxiety and see what may have triggered it.  It's very common to have anxiety especially when medical issues are involved.  Cognitive Behavioral Therapy can be learned on your own with books or programs online.  It will help you be a good detective and start to catch the negative thinking and teach you how to challenge it and reprogram it into something more affirming.  

Thanks

by asully - 2021-05-11 00:36:03

Yes I know all these techniques, I am a counselor myself.

i practice CBT, REBT, mindfulness, etc.

I do suffer from GAD and panic attacks but these have been mostly under control.  And I think my psychologist would agree that my patterns of thought are not out of the range of "normal" for someone in my situation.  I do not truly believe I am suffering from any major cognitive distortions.

I do however have these moments, although I recognize it is irrational to think it is all in my head.  Anyways it happens, I will doubt that I am as sick as think, or that I am just overreacting to my symptoms etc.  I am just curious if this is common, and some new techniques because my psychologist and I are running out of ideas.  It seems that in my case the normal techniques aren't working for my periods of anxiety and my psychologist thinks I just need to ride it out, that it's part of the process.

Perhaps it is just part of the grief and acceptance cycle, in particular the denial phase.

For others dealing with severe medical illnesses, any tricks for snapping out of this thought process?  Dunking my head in ice water? Give my fiancé a dog training collar and have him shock me each time I start doing it lol?  I am open to all new and creative ideas...

Is it all in the mind? Most definitely not dear Asully

by Gemita - 2021-05-11 07:44:35

Well yes Asully, “is it all in your head” just about sums it up.  That is the easy solution, the easy answer.  It doesn’t need a proper scientific diagnosis, does it.  Am I angry, yes I am . . . that is what my first cardiologist unkindly told me when he couldn’t capture any events on my 24 hr/7 day event monitor.  My arrhythmias and syncope were intermittent and I suffered for years before any help was given to me. I had to collapse on London public transport multiple times in less than 30 mins before anyone would believe me.  No dear Asully, it is definitely not all in your head, it is real, trust me.

How to manage the anxiety which comes from health problems when we feel so unwell is difficult, but I see you have many tools at your disposal, including Mindfulness, CBT and other therapies.  They are excellent.  However poorly I feel, the following helps me out of anxiety and depressed thoughts.

I keep a to do list (boring I know, but I forget what is outstanding otherwise) and try to start a new job when I am feeling unwell.  I don’t have to complete the activity, but just start it.  It could be a light gardening job, for example, or trying out a new recipe - anything that takes my mind away from myself.  I don’t have to finish the job on the same day.  I learn to pace myself which is essential with a heart condition and these small steps help to keep my spirits up.  Even if I don’t succeed in the activity, attempting it will make me feel better.

I might try to do a puzzle to help relax me and stop my mind from wandering - doesn’t take too much effort and I have many puzzles unopened.  I know some people like Colouring books, or painting.  I used to do embroidery but my fingers are stiff from osteoarthritis.  I also like to practise the piano, arthritis permitting.  When I am preoccupied with myself, I cannot focus on certain activities like reading (requires too much concentration).  But it is all about pacing ourselves and achieving a little each day.  That will keep your spirits up and help you to achieve something new, give you a sense of purpose, a sense of progress.  And being ill prevents progress and without progress we lose the desire to live, so a vicious circle.

If we focus the mind on an activity, it is difficult for the mind to wander off in the direction of negative thoughts and if it does, we keep bringing it back to the activity we are currently engaged in but we have to be truly engaged in something for this to work.  

Which comes first the anxiety or the physical illness?  In my case it was the physical illness and my doctors not believing me which led to my anxiety.  When we are told time and time again that all is well when our heart is struggling to keep up, it is easy to see how a patient may start to blame themselves for the way they feel.  We shouldn’t have to wait for approval from our doctors, for acceptance, a diagnosis from our doctors for us to accept that a problem exists.  We should stop beating ourselves up, pushing ourselves, being unkind to ourselves when we most need to give ourselves permission to heal.  Enough said.

Anxiety

by Julros - 2021-05-11 10:17:54

Aww, Asully, I am sorry that you are suffering in this way. The breathlessness and fatigue that you probably feel are miserable on the thier own, but I think because the anxiety can't be seen or measured by others, causes it to be  discounted as not important. But of course, it is. 

I wonder if any of your cardiac medications could be contributing to what you are feeling? And, I should think your body is probably pumping out cortisol as a means of compentsating for low cardiac output. Being a stress hormone, it is going to make you feel stressed! I am not suggesting any change to your medical regimen, but perhaps this is a partial explanation for what you are feeling? 

I myself have been quite angry to the point of making myself and others around me miserable. I sought help through counselling, but didn't feel like it helped much. I have been doing a great deal of mindfullness and found progressive relaxation helpful when I just can't shake pervasive thoughts. Also, doing this grounding exercises seems to help, at least temporarily. I will try to identify 5 colors I can see, 4 sounds I can hear, 3 sensations I can feel, 2 things I can smell, and 1 thing I can taste. 

I wish you all the best. 

Coping

by Theknotguy - 2021-05-11 10:31:13

Actually your reactions are quite normal, especially for what you've been through at a younger age.  I'm  thinking part of your reaction is to the information overload you've had with past problems leading to what you have now.  I once worked with a nurse who was very anxious about her children because, as a nurse, she had seen a lot of bad things happen to kids over the years.  Her imagination went into overdrive as she imagined all those things happening to her children.  One part of her brain was going, "Oh my God!  Oh my God!  Oh my God!" While another part was telling her most of those things don't happen in real life.  Kind of a mild form of PTSD.  

Based upon your bio, you've had a lot done over a short period of time.  Then, you end up with a pacemaker and along with that comes all sorts of additional information.  And a lot of that information can be incorrect.  When I left the hospital with my pacemaker they had given me an "information" sheet.  Over the years with my pacemaker I've found out that four of the ten items on the sheet were completely wrong, the other six items were partially wrong.  Add in all the information you get from the media, other medical people, family, friends, and the general public and you can be overwhelmed with just the information alone.  Then you have to decide what is good information and what is, as the Brits call it, "Rubbish!"

In addition to the information you also have to deal with (possibly) new medications and how that alters your body and mind.  Then you have to deal with all the thumps and bumps of the heart issues.  And finally you have to deal with how your body reacts to the pacemaker itself.  No wonder people sometimes just want to run off and hide.  So I feel your reactions are quite normal.  So, yes, I've ridden the same rollercoaster as you.  

What can you do?  Most of us deal with the situation in our own ways.  I'm sure several on this forum will chime in with suggestions.   My brain would be going a hundred miles a minute going into all the possible what-if scenarios.  Finally I'd just have to turn it all off and just concentrate on dealing with one day at a time.  For me that was a turning point.   Don't worry about the what-ifs, just get through today.  Diet, exercise, keeping hydrated, and similar stuff helped too.  Did I still go off occasionally with the mind bending tirades?  Yep, sure did.  But eventually I started finding out what needed attention and what I could ignore.  Being on the forum helped too as I found other people with the same problems so I knew it just wasn't me.  Quite often they had solutions that I could try too.  But I think the biggest part was knowing there were other people out there going through the same things as me.  

Spoiler alert: (Although I think you may already know this...) 1) Doctors see hundreds of patients.  What may be a crisis to you is just another one out of the hundreds they've seen so if you get an empathetic one, it's rare.   2) You've been told all your life nurses are caring people.  They are, but most don't go any further than learning what is needed to get you out of the hospital or out of the office.  I was hoping to have discussions with nurses about pacemakers and almost all knew less than I did.  Mostly it was doing what was needed then on to what they needed to do when they got home that night.  

I'll also tell you Medtronic can be of little help too.  I've asked questions of them and I mostly got, "You'll need to discuss that with your doctor."  Fat lot of good that does as most doctors in the US today can only spend 15 minutes with you then it's on to the next patient and their records.  

Another thing is keeping a sense of humor.  That can develop over time too.  My Medtronic pacemaker has two programs running on it.  I'll sometimes have arguments with my pacemaker (none of which I've ever won.) as I'll feel one program quit running and the other kick in.  "Can you just make up your mind!!??"  Ah well.  

Hope this helps.  I also hope you can adjust well to your new life with your pacemaker.  
 

Thanks everyone!

by asully - 2021-05-11 12:52:16

Gemita, I have had similar experiences in the past but promptly fired those cardiologists, and my "obseessivness" has paid off almost every time.  I have never been wrong about what I am feeling, or when it means stuff is not working as it should.  But I always get this anxiety, especially before I get the confirmation through tests.  The thoughts are "What if this test result comes back and says I am healthier than I have ever been?"  Then I start to panic that it is in my head lmao, silly I know, which is why my psychologist and I had a good laugh about it.

Asully

by Gemita - 2021-05-11 13:46:24

We are alike.  It is worrying that we would wish harm upon ourselves and wish a positive test result as justification for feeling so ill.  I have been there too.  But I can be forgiven for not believing in those test results since the first time I was tested for cancer, it came back negative, only to appear some 3-4 years later as a rapidly growing metastic cancer.  But it all ended well and I think you are strong enough to fight this too.

I like the idea of neuro-modulation therapy and I feel you have got an excellent team of doctors working with you

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