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Thread: I'm so frustrated!!

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    Default I'm so frustrated!!

    I just need to vent...
    I look in the mirror and I don't even recognize my legs- they are swollen and they hurt soo bad.. my knees feel like someone's pulling on the tendon and I don't fit my jeans. I've been working out as usual every single day and I am just so angry because no matter how skinny I get my legs and arms swell. We have a no salt house because my family is very heart healthy and I don't use diuretics because they don't work!!! the only thing I found mild relief in was ibuprofen, but it doesn't last long. I just graduated from nursing school and I feel like I can't even do my job because I'm constantly in pain from my swelling legs and even TED stockings can only do so much. So now I have 15 grand to pay back in student loans and I feel so hopeless...
    Still waiting for this doctor to refer me to a Rheumy. I just could cry - how pathetic and now all I've done here is had myself a little self-pitty party
    Ughhhh

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    He Bench. You are welcome to vent at any time. That is what we are here for. The majority of us have come here to have pity parties at one time or another. I know sometimes it just seems like nothing is working out the way we planned it to work out. Our bodies turn against us and we can't do anything about it! I can't make it better for you but I can tell you that I understand and I am here for you whenever you need to vent.

    A special {{{hug}}} to you
    Mari

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

    ~Winston Churchill~







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    I am sorry to hear about your legs. Does you doctor know about this? Is there any other type of anti inflammatory you could take that would help?
    Vent away, it's what we are here for.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    I so hope you get that referal soon,maybe let the doctor know again how desperate things are getting for you.I know he should be able to help you with pain,more than ibrufofen,so call him,dont suffer and yes inflammatories too,even before seeing the rheumi.

    I know its such a worry when you have things to pay and hurt so much r are too fatigued to get out of bed.We all have been there.Today is a bad worry pain day.The good days do come,even if they are short lived.Just hang in there n keep venting,helps so much.Better out than in.
    Sending you getle hugs
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Thank you so much guys. I managed to get an appt @ 11 am tomorrow which is unheard of for my Doctor!!! I feel so selfish for putting this post up when there are so many of you wonderful people struggling daily so tonight I'm praying for all of you.
    Tomorrow I am pleading with my Doctor to send me to another city/province to see a Rheumy if need be and I'm asking for anti-inflammatories just like you guys suggested because then at least I can work... I'll check in with you after my appointment.
    I can't thank you all enough- this site is just such a blessing right now.
    xoxox hugs right back at all of you!

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    You are NOT selfish thats why we all joined here,we all suffer daily and you are too.Wohoo im so glad you got the appointment so fast.Make a list of what you need from him before you go so you dont forget.He will help you.Let us know how you get on.Goodluck.
    Love
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Ditto to what Amanda said (Angel oliver). Venting is not selfish. That is what we are here for and we all do it. Keep us posted!
    Mari

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

    ~Winston Churchill~







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    Thanks again guys!!
    Sooo my doctor re-ordered blood work and says something has to show up in order to send me to a rheumy and to manage my swelling I am now on Lasix (even though I told him I didn't like diuretics) and Voltaren... a year ago he ran an ANA, but it came back negative so this may sound strange but I am praying SOMETHING shows up so I don't feel like such a hypochondriach. I just keep reminding myself that my walk-in doctor who is hailed the best female doctor where I'm from said she's positive it's Lupus and my aunts who both have it say I am them 20 years ago.
    Patience is a virtue !
    PS..what are your thoughts on Voltaren- I'm not a huge NSAID fan

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    hi bench,

    wow, your story is so familiar. I went 10 years with positive ANA, but not enough physical involvement for a diagnosis, so i know how frustrated that you are. I can't help with NSAIDS, because i am allergic to them. Also, I try my best to avoid steroids, cause the swelling/bloating is so very painful. Therefore, i count on Plaquenil and Methrotexate to keep the attacks, thus the swelling under control.

    I am so sorry that you are not at a point where you can unequivicably make a treatment choice. I know you are desperately searching for the answers and solutions, but i can tell you that lupus is a progressive disease (i am sure you know because of your nursing training), and management of the disease requires that we know our bodies, and that we be prepared to react to the latest attack.

    Try the NSAIDS, hopefully they will help until you can get the lab results. Keep a daily journal of your symptoms,....also, read some of the posts here at whl, you may find many symptoms that you did not realize pertained to lupus. For example, when my dr. asked me about mouth sores, i responded with the negative, because i envisioned big red sores in my mouth....i did not realize that my swollen tongue and sensitive lips qualified as sores....this is one of the things that i learned from the incredible members of this forum....so, please explore around, and build your case....

    you know your body, and you know something is wrong....now you just have to find the dr. who is a perfect team member.


    See, venting is ok on this forum. ha ha ha
    Phyllis

    share a smile today

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    hey mountaindreamer
    thank-you for your encouraging words, I'm really sorry to hear you had a nasty battle waiting for a diagnosis as well. 10 years is incredible and makes me really appreciate your understanding even more.. How do you find the medications are working for your swelling?? What would you say was/is your worst symptom???

    Funny you should mention the mouth sores because that's how I pictured them too and of course if you ever google images of the lupus rash or mouth sores it comes up with the worst case ever documented haha so I don't do that anymore.. I do get mouth sores, but sometimes I think theyre just canker sores- though I get them without eating candy?? Hmm I'm not sure
    Good idea about the journal.. I cant remember dates, but the symptoms are all they really need right?? I guess I could mark down when it gets really bad and how long it lasts. I honestly don't know what I will do if the tests come back normal.. I will feel very defeated that's for sure!
    Hahaha yes venting is okay, I am learning this. Thanks again

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