WORRIED & NEED TO TELL SOMEONE

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jenn3
jenn3 Member Posts: 3,316
edited June 2014 in Stage III Breast Cancer
WORRIED & NEED TO TELL SOMEONE
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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    I have suffered with back pain for years (bulging disks, spurs/arthritis and anul fissures) so it's not uncommon for me to have back pain.  I recently had a Facet Joint Injection (have been getting them for about 7 years) and it helped a little in one area.  However, the pain has gotten really, really bad.  There is an area in the middle of my back that throbs, my ribs hurt so bad, but not nearly as bad as my right hip bone and my neck is killing me.  I cannot get pain relief with medication, heating pads, hot soaks nothing helps. It was so bad two nights ago I actually thought about the ER. I had a follow up with the surgeon that handled my achilles tear and he suggested and made an appt with a spine specialist, which is this week and I do have an appt with my primary this week too. 

    My DH, children, friends and family know that I have back pain, but I'm doing everything I can to hide it.  DH just thinks its the normal pain - he doesn't know how bad it is.  I know I should be able to talk to my DH, family or friends about my worries, but I can't.  I am more worried about their reactions to something I don't know yet.  I am just so tired of being the "sick one".  I don't want to be the patient.  But...........I am worried.  Why is the pain so bad?  What if?  I don't usually worry like this - I really don't and I never worry about the "what if's" in life and just wrote that in a letter to my DD who left home for her 1st year of college this weekend.  Worrying about the "what if's" is a waste of good energy, but here I am stuck in the "what if's" - this is new territory for me.

    I know that I should feel comfortable enough to talk to someone, but I don't.  I have always been the caregiver personality and am the caregiver for many people and the thought of worrying anyone after what they've gone through with me in the last year is just too much of a burden to give them right now.  I don't have answers - not yet.  This could simple be a more advanced stage of the type of arthritis (anklosing spondylosis) I have or I may have injured something more than I thought. So....I am writing this to my cyber friends so that I can get this off of my chest and know that all you can understand these crazy feelings.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited August 2010

    Jenn - Of course you are scared! You know your body and know something is not right.  I hope that it is simply your arthritis advancing and that your doctor can find the right med's to ease your pain.  Just wanted to send you some gentle ((((Hugs))))

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  • chrishat
    chrishat Member Posts: 89
    edited August 2010

    it must be so hard to deal with the pain you have from real back issues, that don't have to do with cancer, and to not let your head spin now that you've had a cancer diagnosis. i know my small misc aches and pains get me totally freaked out these days. i wonder if you could do a bone scan, or a ct, just to get a very accurate picture of what's going on in there? maybe knowing for certain what's happening would put your mind at ease. i always feel better when i know what i'm dealing with. ambiguity is challenging! especially when it hurts. i agree that what if is not the most productive place to be, but sometimes it's impossible to avoid! i hope you have relief and answers soon.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2010

    Hi Jenn3, you know what your back pain normally feels like so don't mess around with this.    As much as you say you don't normally project, that is exactly what you are doing and you know as well as I that projecting is a futile exercise.  Get it checked out and put your mind at ease.

    Love n hugs. chrissyb

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited August 2010

    Jenn - I didn't know you had AS. My husband does too, and so do all his brothers. I know he can be in agony sometimes with the pain (especially in the hip area, but it can be anywhere). So, you are right, it could easily just be a flare-up. His does go away with movement - when he wakes it can be bad, but when he gets moving around it usually eases up. If this isn't happening for you, it could well be something else (and not necessarily THAT thing)

     My Onc told me to be concerned about anything that "wakes me up at night".  I have heard others told to be worried if it was "consistent, persistent and worsening" If you think any of these apply, you should maybe give your Onc a call.

    I know how ones mind can so easily "go there", but sometimes I think not knowing is almost worse than knowing.  I do think you should probably get this checked out. 

    And remember, we are all here for you, whenever you need us.

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  • Karen09
    Karen09 Member Posts: 320
    edited August 2010

    Hi Jen, it doesn't hurt to get it checked out for sure.  Hopefully your doc will be able to put your mind at ease or run some tests.  It's hard to be finished your treatment and then have to worry about aches and pains.  I'll be thinking about you!   

    Karen (your old chemo day buddy from the August Amazon thread!)

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    Thanks for all your support, I need it right now.  I just don't want to worry anyone until I know more.  I am seeing my primary tomorrow and the spine specialist Friday.  I haven't called the onc because he is in the same facility with the other two doctors and from my experiences over the last year - the communication between the doctors is great.  So...if there is something the onc needs to know I'm sure my primary and/or the spine dr will get with him.  The pain is just miserable and different than what I usually deal with, which is why my mind is going to the worried place, which is so unlike me, but I guess the "new" me worries now.  I will let y'all know more after I speak with the dr.  Maybe it's just the added stress of my DD going away to college.....or progression of the AS.....or what would be more like me - I injured something (again).

    Kare09 - how have you been?  and...how is your faithful companion?

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2010

    Hi Jenn,

    Oh my gosh, you have EVERY right to feel this way!  I have been exactly where you are not long ago with all these crappy new (never had them before BC) aches and pains.  It's only natural after what we've been through.  And I SO get what you mean about not wanting to tell anyone.  Half the time I think people think I'm a hypocondriac!  But the pain IS REAL!  I sure hope the docs can give you some quick answers, and hopefully some relief for your pain (narcotics are a GOOD thing at times) so you aren't too uncomfortable over the weekend.

    Take care,

    Sharon

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  • Bugs
    Bugs Member Posts: 1,719
    edited August 2010

    Jenn, there is no reason why you should be suffering in silence and having your mind "go there".  Tell your dr's that you want an MRI so "that" can be totally ruled out and you all can know it's your AS flairing up.  Even if it doesn't help the pain, knowing mets have been ruled out will ease your mind so much!

    Hugs!!

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  • kimber3006
    kimber3006 Member Posts: 586
    edited August 2010

    Yes, it's bad enough to be in such physical pain without the stress of where our minds can take us, too.  I hope you get assurance it's just the AS the flaring up, and I hope you get it soon.  ((HUGS))

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    I do have pain meds (prescription strength) and that is part of the reason I'm getting worried a little more - I'm not getting pain relief with prescription pain medication.  I've always been able to get pain relief with either OTC or prescription medication and I also take maintenance medications for the AS (methotrexate and indomethicin).   I will see my primary tomorrow and the spine dr the next day, hopefully they'll have an MRI ordered ASAP to give me answers and/or mental relief and a direction in which to go with the pain issues.

    I just don't want to worry my family, but keeping my worries bottle up is driving me crazy - which is why I needed to share with my BC Sisters that understand.  I never thought I'd be the person to keep something like this from my closest friends, family and DH.  But.....I guess this disease changes us in so many ways.  I'm keeping things to myself and worrying - not good.  Thanks for the (((HUGS))) I do need them. 

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  • gillyone
    gillyone Member Posts: 1,727
    edited August 2010

    Oh Jenn - I know this is so hard. No matter how positive we are ( and you are usually SO upbeat) our minds go places we don't want to. I'm thinking good thoughts for your appointments the next couple of days.

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  • JacquelineG
    JacquelineG Member Posts: 282
    edited August 2010

    Hope your appointment goes well today!! I just finally got an MRI after more than a year of pain in my hip. I kept trying to push it out of my mind, attributing the pain to a running injury, but in the back of my mindI was terrified. The MRI came back negative (thank God) and I have this peace of mind that i wish i had gotten a year ago. Here's hoping you get that peace of mind very soon Jenn!

    Jackie

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    I saw my primary dr today, she really doesn't think it's anything more than a flare up of my AS and that my medications are no longer working the way that they should.  She is changing some medication and adjusting others.  In addition, to ease my mind she will order a full body scan because I am having so much pain in various areas (back, neck, hips and ribs).  I will see the spine dr tomorrow and let him know what the primary said as well as talk to him about the problems and go from there.  She did tell me that the dr that treated my achilles tear took x-rays of my spine and neck (a few weeks ago), which I had forgotten about and it does look like the AS has progressed quite a bit. 

    I will keep you posted and very much appreciate the support -

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited August 2010

    Well, that is good news. Well, not good news, because you are in pain and have had progression with the AS, but good news that she doesn't think it is cancer. All relative I guess. Hope the new drugs help with the pain a little.

    I hope she has given you some peace of mind.

    Let us know when the scan is scheduled for.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    I saw the spine dr today, which really didn't say much - he was okay.  In the end he agreed with what the primary is doing and asked that I let him know when the scan is done so that his office can be sure to look at it (they're all linked by a network).   So.... got now it seems to be the concensus that my AS is acting up and/or the medications I'm taking may no longer be working and the numerous bone spurs(arthritis) in my back is causing problems. 

    As for the pain, today wasn't a bad day.  I'm a little sore now, but not too bad.  Not sure if it's the new medicine or the "flare" up subsiding, but I'm not complaining.

    Thank all of you for your support and I will report back after my scan - which both dr's think will come out fine.

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited August 2010

    Jenn,

    It's so hard not to worry when this kind of stuff happens.  I'm the caregiver in my family too, so I really understand your concern about what this could be.  With all your previous back issues, hopefully that's what it is and they'll find a solution for you that will take care of the pain.

    In the meantime, tell whoever will listen to you about whatever help you need around the house or otherwise.  That always helps.

    Hugs

    Bobbie

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    Bobbie - thank you for the support - I don't know why my mind "went there", but it did and I just didn't want to say anything to my family or friends, which probably made it worse in my mind.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2010

    Sherri - I do appreciate it - thank you. I am feeling somewhat better now that both the dr's feel it's a flare up of the AS, but after what we've been through sometimes an extra test or two helps to ease our minds.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    Jenn - I just realized that I missed putting a post on this topic.  I'd been following it and was concerned for you but I guess my chemo brain can't handle much.  It's easy to get me confused.  Late is better than never so I just want to chime in and say that I'm very glad you found the source of the problem.  I just hate to hear that you are trying to carry this burden yourself and not include your family.  I'm guessing hear but I bet they love you very, very much and maybe now is the time to let them know what is going on.  They'll want to know.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited September 2010

    Anacortes - thank you.....yes I do have a wonderful family and great friends and if they knew I was hiding my worries, they would be very upset.  In all honesty I never thought I'd be one to keep something from my family, especially my DH, but I just hate to see anyone worry.  Thank goodness for my BCO cyber friends.

    My ribs and back still hurt, but I am working on some new medications, which may need to be changed again, but I'll worry about that later.  I have a full body scan Friday - more for peace of mind than anything else.

    (((hugs))) to all of you and thank you again for all of your support.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited September 2010

    jenn - hope it goes well on Friday, keep us updated!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited September 2010

    I got my results from the nuclear bone scan and it's clear.  The dr's feel I was/am having an AS flare up. 

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  • Pure
    Pure Member Posts: 1,796
    edited September 2010

    Yeah awesome news!

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  • diana50
    diana50 Member Posts: 2,134
    edited September 2010

    good news. pain is just so hard to deal with after a cancer dx.  when you don't feel good; it is so easy to think it is cancer. i am sorry you are so uncomfortable; but good news is you know what is causing the pain. i hope you will feel better soon*

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  • jenn3
    jenn3 Member Posts: 3,316
    edited September 2010

    thank you - yes, the pain is very frustrating, but I can worry less, which helps the pain because I'm not constantly thinking about the pain I can let my mind think of other things.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited September 2010

    Great news Jenn! So, so happy for you!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited September 2010

    thank you Kerry and Sherry - the clear scan does give me a much better mental state.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    Such good news about the scan results!  I don't know anything about AS but I hope there is something that will help now that you know it's the problem.

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