This topic contains 4 replies, has 3 voices, and was last updated by  Charlene Marshall 2 months, 2 weeks ago.

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  • #12474
     Charlene Marshall 
    Keymaster

    For those of you comfortable sharing: have you been prescribed an anti-anxiety medication since your pulmonary fibrosis (PF) diagnosis?

    I ask this because dealing with anxiety is very common for the majority of our population in general. That being said, living with a life-threatening illness that impacts your ability to breathe is also very anxiety-provoking. Therefore, I would imagine the amount of anxiety patients experience that is directly associated with their PF/IPF diagnosis would be staggering if quantified in the literature.

    I don’t think that I’ve really had to deal with anxiety personally, or that is what I used to think until I read a recent article on TheMighty. The link to the article is below, and it actually talks about anxiety presenting itself through anger, as opposed to the anticipated symptoms of worry, fear, being nervous, etc. I have noticed that I am increasingly angry since my diagnosis, sometimes at things that aren’t warranted. This is a bit tough to admit, as I’ve never been angry person but sometimes I experience rage and frustration that can be so intense that I’m unsure how to deal with it. As a result of reading this article, I am wondering if this anger is actually anxiety-related?

    Have any of you also experienced this?

    If you’re interested, here is the link to TheMighty article called When Anxiety Presents as Anger, Not Fear

    I’d really appreciate hearing your thoughts, or experiences in dealing with anxiety since your diagnosis of PF. It will help me with my decision about whether or not to bring this forward in my upcoming doctors appointment, and discuss the possibility of starting an anti-anxiety medication. I’d prefer not to, but I know many of us deal with this and that it is likely more common than I realize….

  • #13017
     Kathy 
    Participant

    Anger – OH YES – – I can be concentrating on some task and can suddenly feel this aggravation building which is like tender on a fire which suddenly just explodes and I don’t know what I am sooooo angry at – but I am.  My doctor asked me if I was coping with anxiety – anger – depression and that it was very important for me to recognize what I was feeling and to find a Tranquil Place through meditation – quiet/calm – spirituality – whatever allows me to decompress.  One day my husband & I were working on something outside and he was just NOT DOING IT RIGHT – MY WAY – THE RIGHT WAY (lol) and I said to him – I am so angry I can feel myself vibrating so I’m going into the house and find my tranquility – – He said – – HURRY – HURRY – GO FIND IT !!  It made me laugh – I went inside – thought things through – prayed – calmed down.  But when I think about it I sometimes feel deep inside that I just want someone to UNDERSTAND what I am going through – – not try to fix it – – but let me know they are beside me – – hug me – – and like Hannity of Fox News ends his show with – – LET NOT YOUR HEART BE TROUBLED !!!

  • #13026
     Charlene Marshall 
    Keymaster

    Hi Kathy,

    Thank you so much for sharing your experiences with me regarding anger and anxiety. This was a hard topic for me to write about, as I try to appear happy, content and in control of everything so it is hard for me to admit how different from this I feel on a regular basis. I am also not generally an angry person, and I have been so much more since my IPF diagnosis.

    Like you, I often feel tensions and anger building up inside me when I am doing something (ie. driving, or waiting for something) and the outburst sometimes feels out of my control. When this happens, or even in anticipation of it happening, I will remove myself from the situation and just want to be alone. Sometimes I’ll just leave work to go home and no one knows why but it is because I feel so sad and angry at everyone!

    I should find a more tranquil place to calm myself back down when this happens, although right now, that is my craft room for me. Sometimes I physically shut the door as if to close everything out of that space so I can be safe and content in there with no one around.

    I’m so glad your husband sounds understanding and encouraging of your needs around this, what a blessing! Does thinking things through and praying typically help you?

    I agree with you, and how amazing it would be to have someone truly understand and not just try to fix it for us. It isn’t like this can be fixed, and no one seems to understand what a struggle it is just to breathe. One day at a time I keep reminding myself…. know that your among friends here, although I wish we weren’t all so far away.

    Sending hugs and prayers,
    Charlene

  • #20144
     Barbara Schwenzer 
    Participant

    As part of my initial intro to Pulmonary Rehab last month, I had to fill out a questionnaire about stress, anxiety & depression.  I answered NO to wanting to hurt myself, but all other questions came up showing “you bet.. I am absolutely depressed” ..go figure!!! LOL  At age 64, last September, 2018 I was driving & active (as active as I was going to be given my disability since 1991 with Fibromyalgia, Chronic Fatigue Syndrome, DDD, etc., etc.).  I’d already received my dx of COPD (emphysema) several years ago, but in 9/19 was told I also have IPF with 2-5 years.  What???!!!  That’s not long enough to see my 7 year old grandson, who is MY LIFE, grow up, graduate, college, etc!  Still, feeling relatively normal, I was very active, including being his room parent (in charge of classroom parties); as well as a 30 year volunteer with the Boy Scouts of America, camping at least monthly with my boys, and 1 week each summer.

    Fast forward from 9/18 to 12/21/18, where I had to be hospitalized for a week due to my extreme SOB.  This grew into 3 hospitalizations from December, 2018 to May 15, 2019.  I’d gone from no oxygen to 3 lpm active/0 resting (on a portable unit) to my current 6-8 lpm active/2 lpm resting; and told I can no longer use conserving O2  I was extremely weak & fatigued; had to give up all my volunteer work, and had become homebound, then bedfast in May.  My pulmonologists & I discussed a lung transplant and that one requirement would be rehab.  I’d quit smoking March 1, 2019 and additionally was on steroids from December through June, so I quickly gained 40 lbs!  That’s enough to make anyone depressed, right?

    Anyway.. they abruptly halted my rehab, until I saw their psychologist, who also diagnosed me as depressed; saying I need to find a counselor & ask my PCP to put me on medicine.  I’m happy to say that I was welcomed back to rehab, which was initially making me weaker; but I’ve grown stronger in a short time.  Just learning how to properly do pursed lip breathing made a huge difference!  My husband was wheeling me in to rehab in a wheelchair, but on the 3rd day, my rehab therapist had me walk out by myself.. 150 feet!  Thought I was gonna die, but I did it.  I slept like crazy that afternoon. 🙂

    Bottom line.. I can’t help but think that anyone would be anxious or depressed when faced with the inability to breathe!  My pulmonologists & I had already discussed it, and he put me on Paxel in December.  Unfortunately, I had to quit as it was too harsh on my tummy.  I’m also dealing with a fair amount of cramping & diarrhea from my Esbriet (but I continue to take in hopes it will help).  My research into lung transplant has also caused me anxiety as I hear the prognosis is no more than 5 years following transplant.. making me question if it’s worth the hassle of not going out for 18 months; requiring a mask to go to mailbox, lifelong anti-rejection meds, etc.  Hope I’m wrong, but I’m obviously still stressed, anxious and depressed.

    Thank you for *listening!*

  • #20151
     Charlene Marshall 
    Keymaster

    Hi Barbara,

    Thank you so much for sharing your experience with this topic, and telling us a little bit about your story. What a tough time you’ve had, and I agree with you about the inevitability of depression with this darned disease! It seems as though you’re doing everything you can to manage it though, which is easier said than done so kudos to you. I find keeping up with rehab very tiring, but beneficial and I know lots of people who have survived their transplants far beyond five years, if this is helpful to you at all? 🙂

    Hang in there and feel free to write any time!

    Kind regards,
    Charlene.

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