Results 1 to 10 of 10

Thread: Tired of constant symptom assessment!

  1. #1
    Join Date
    May 2012
    Location
    Texas
    Posts
    85
    Thanks
    23
    Thanked 20 Times in 15 Posts

    Default Tired of constant symptom assessment!

    It seems all I do these days is think about how I'm feeling. The first thing I do in the morning is an overall assessment of aches, pains, and unusual feelings, and I'm constantly updating myself throughout the day. I'm hyper-focused on my health, and it's driving me CRAZY! I've often wondered why I feel better during the day, and I think this is why. Once I get to work, I get busy and forget to think about my health. As the day goes on and I get more fatigued, it reminds me, and the obsessing begins again.

    So, my question is this: How do I get to a point where I put my issues on the back burner and live again?

    I'm yet to be diagnosed -- just received my ANA results and my referral to the rheumatologist. When I get a diagnosis and get some help, will I learn to live again without the ongoing, all-consuming assessment????????????

    Uugh! I'm not good at being sick!
    Last edited by jolynnhughes; 06-03-2012 at 09:10 AM.

  2. #2
    Join Date
    May 2012
    Location
    Northern Rockies
    Posts
    284
    Thanks
    71
    Thanked 168 Times in 95 Posts

    Default

    Jo--

    This sort of constant focus on our symptoms and health can be a real problem-- thanks for bringing it up! I do exactly the same thing. I am a very "type A" person, and I am very used to being in control, and I have trouble trusting people (i.e., my doctors). So, I feel like I'm hyperaware of my symptoms, trying to figure out just what is up. Also, I -- like you -- do not have a firm diagnosis. I've been labelled "undifferentiated connective tissue disease" by my rheumatologist and put on Plaquenil, but he believes something for defined will emerge. So, I am constantly noticing symptoms and thinking, "Oh, this could be a sign of [XYZ Disease]!"

    (I will say, though, that this compulsion has been lessened since I went from completely undiagnosed to UCTD and started treatment with Plaquenil.

    This line of thought can be all-consuming and really be a drag on quality of life. One thing I did to try to deal with this -- even before I got a diagnosis of sorts -- was I started seeing a chronic illness counselor. This has been a game changer for me. First, she is a person I can talk to about the things I wouldn't talk to my doctors about, like my tendency to "obsess" about symptoms. I don't mention that to doctors for fear they will take my very real symptoms less seriously. After discussing this with her, she was able to help me develop ways to avoid this unhelpful way of thinking, which in turn helps me regain a more normal life. It's enough of a drag to be sick-- it makes it so much worse to think about it all the time!

    Distracting yourself (through work, hobbies, socializing, whatever), as you have noticed, is also useful, but I would highly, highly (I can't emphasize this enough) recommend finding a counselor who specializes in chronic illness counseling. Mine is a licensed clinical social worker (LCSW) who is based at the local hospital. You'll likely find the counselor has a lot of experience with people going through exactly what you're going through and that he or she has some useful help to give you!

  3. The Following 3 Users Say Thank You to Derrie For This Useful Post:

    jolynnhughes (06-03-2012), rob (06-04-2012), SleepyInSeattle (06-03-2012)

  4. #3
    Join Date
    Nov 2011
    Posts
    466
    Thanks
    314
    Thanked 317 Times in 192 Posts

    Default

    Derrie has some great wisdom there....

    I know what you mean about this stuff - to some extent, it's important for us to keep track of what's going on, and of course it's the normal reaction of somebody whose body is under threat simply trying to stay healthy and alive!

    Many people find it useful to keep a "symptoms journal" - it can allow you to record what's happening, and then hopefully let it go....your journal will carry it for you. Then you can go back and read it, and over time you will probably notice that many things you recorded simply disappeared - you will learn to sort things out and not stress so much because honestly, many things DO just come and go with no huge consequence.

    If you bring the journal to your doctor, it can be very helpful in diagnosing and tracking what's happening. We all get into the office and forget things.

    I have also found it useful to note all the ways I am HEALTHY. For instance, I don't have kidney involvement - YEAY! I have Sjogren's, but no dry eyes - YEAY! I am not terribly sensitive to the sun - YEAY! Yes, I have plenty of health problems to deal with - but I don't have ALL of them. And somehow, thinking of the problems I DON'T have makes me grateful and feel a bit healthier. It's a silly mental trick, but it works for me. And I try to notice the GOOD days, not just the bad ones.

    It's a long process, dealing with this stuff. And of course once you get used to it, SOMETHING CHANGES. :-p

    You do learn to live it the ups and downs, though....

  5. The Following 3 Users Say Thank You to SleepyInSeattle For This Useful Post:

    Derrie (06-03-2012), jolynnhughes (06-03-2012), rob (06-04-2012)

  6. #4
    Join Date
    Aug 2011
    Location
    Rockingham, Perth Western Australia
    Posts
    273
    Thanks
    139
    Thanked 48 Times in 41 Posts

    Default

    I have found that I have to listen to my body and ask it what I am capable of that day! After assessing what my capabilities are for the day then I can work out what is a priority and what can be put off to another day. I then look at what I can do that will give me pleasure and what I really have to do! Then I work out understanding what capacity I have for the day and what I must/want to do and how to work this out with the amount of energy I would have for the day and how I can fit In some rests. When I have accepted that is is how I must manage my energy and tasks the. And on,y then I don't stress about the things I don't get done, I hope this helps,
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  7. The Following User Says Thank You to Desleywr For This Useful Post:

    rob (06-04-2012)

  8. #5
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    It's been nearly nine years since I got the SLE diagnosis. I am no longer hyper-aware of my symptoms, but I don't know exactly how I got to be this way. I guess I just got so used to my typical symptoms that I learned to ignore them to a certain extent.

    When I was healthy I was big into hiking/climbing, and it's kind of like when I would start out on a long hike with a heavy pack. The first couple of miles were always difficult, and I was overly aware of how hard this hike is, how my body already hurts, but after a couple of miles, that feeling would go away and I'd get into the sheer enjoyment of what I was doing. My little group of fellow outdoors enthusiasts had a saying- "It it was easy, everyone would be doing it".

    With Lupus, I guess I just learned to put my most familiar symptoms in the back of my mind, because I got tired of giving them attention. However, if something new crops up, I do pay attention to it, and I get it checked out if it persists. In the end, I guess it's just time and familiarity that has allowed me to lose most of my hyper-awareness.

    Rob

  9. The Following 2 Users Say Thank You to rob For This Useful Post:

    steve.b (06-04-2012), tgal (06-04-2012)

  10. #6
    Join Date
    Apr 2012
    Location
    Pennsylvania
    Posts
    84
    Thanks
    49
    Thanked 16 Times in 13 Posts

    Default

    Hi Joylnn,

    I completely understand what your talking about. And thank you Derrie for all your advice! I am newly diagnosed and although I have had all of these symptoms and felt this way for a while now, I am so aware of my symptoms and constantly evaluating myself.

    This past Saturday I was feeling horrible. I had the kind of fatigue that makes you feel like you are trying to move while in a wind tunnel. Every motion requires a great deal of strength. I was frustrated because it was a beautiful day out and there were errands that I needed to run. After sitting on the couch for a good amount of the day, my boyfriend finally convinced me to go on a walk. Although I was exhausted and didn't think that I could physically walk, I went and I actually felt a lot better. It helped that I was distracted. I wasn't sitting on the couch and dwelling on not feeling well. So, I get why you feel fine at work and then crash later in the day. I like the idea of a journal. It might also be a good idea to write not only what's wrong, but to note some positive affirmations too. As well all know, thinking positively creates a positive outcome (it's just so much easier to be negative! haa)
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  11. #7
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    I am with Rob on this. I think there hits a time when you just get used to the "new normal" and only notice the things that are outside of that range. I don't compare how I feel to how I felt before I was ill because I personally don't have days where I feel like that anymore. Don't get me wrong, not all days are bad but if I tried to look at every symptom every day ( even the ones that are basically normal now) I would stay depressed!

    I wake up in the morning and I know pretty quick if there are things that are going to be an issue (if I slept at all that is). I really don't have to assess anything. They yell and make themselves known to me. I believe
    some of this comes with time and learning your body in a new way

    Hope that made at least a little sense
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  12. #8
    Join Date
    May 2012
    Location
    Texas
    Posts
    85
    Thanks
    23
    Thanked 20 Times in 15 Posts

    Default

    Thank you, all! You have given me some good ideas. I'm going to try the journal, and my plan is to begin and end with something positive!

  13. #9
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,897
    Blog Entries
    1
    Thanks
    1,387
    Thanked 1,610 Times in 1,102 Posts

    Default

    jo,
    it sounds like a good idea.
    i wish you luck with it.

    i also have had these problems for over 30 years.
    i accept many problems as normal now.

    if we focus on bad.........
    if we focus on good........
    life is better focussing on good.

  14. The Following User Says Thank You to steve.b For This Useful Post:

    tgal (06-04-2012)

  15. #10
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    I start each day with a list of things that I need or want to accomplish.
    Some days are good and I get through several things on my list.
    Other days, I feel lucky if I've accomplished one or two things.

    I've also gotten used to taking frequent rest breaks between tasks.
    A Rachael Ray thirty minute meal usually takes me 90 minutes to prepare.
    I just have to plan accordingly, give myself plenty of time, and take those breaks.
    I can still turn out a pretty good meal just at the time that Jeff gets home.

    I know that it is frustrating to have to slow down so much. I used to be a busy
    mother of five and a high school teacher, and I was always going full speed.
    As others have said, we just get used to the new normal.
    Hugs,
    Marla

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •