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Thread: the beginning of my bad days..

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  1. #1
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    Default the beginning of my bad days..

    I'm 25 years old, it's Friday night & I'm laying in bed.

    I increased my dosage of Amlodipine last week. My doctor warned me that the number one side effect is swollen ankles. I took the lowest dose of 5mg for the past month and had minimal bloating, but no swelling. This past week has been very stressful. I noticed everyday this week that by the end of the day my feet looked a little swollen, but nothing too serious or even noticeable by anyone but myself. Until today. My feet were fine until lunch. It was a beautiful day out today and for 15 minutes at the end of lunch my coworkers and I sat on a bench outside. As soon as I headed back into my office I felt a sharp pain where I recently had a Pernio lesion. I was wearing knee high stockings (since I have Raynaud's this has become a habit) so I went to the bathroom to take them off and figure out why my feet were hurting so badly. As soon as I walked out of the bathroom without my stockings on I realized that my feet were beet red and about twice their normal size. I work in a hospital. Within 30 minutes every single person who works on my unit asked me if I was okay because my feet look, "red and weird." Eventually the head doctor told me that I don't look well and that I should leave early for the day. So I called my boss (I'm a social worker) and headed home to change my shoes. Turns out my feet were so swollen that my shoes were actually cutting off my circulation.

    Tomorrow I have a wedding shower for my college roommate that's two hours away. I'm just driving up for the shower and then driving back. I'm going to see friends who I haven't seen in almost 3 years. I recently decided to forewarn a couple of my closest friends of my new diagnosis of Lupus in hopes that it would mean not having to talk about it at the shower.

    So instead of staying home and putting my feet up I made a poor decision and I went out to buy a maxi dress to wear to the shower and cover my double-sized legs. I'm paying for it now. My feet are starting to look a lot better, I put them up on pillows for a couple of hours. But I am not feeling better. I have a slight temperature (which has a huge effect on me) and to be honest, I just don't feel right.

    I know that I'm rambling and it's fine if you stopped reading a couple paragraphs ago, but I'm going to continue my rant! My boyfriend stopped home and asked me to join he and his friend for a drink. I explained to him that I wasn't laying with my feet up in the dark watching a movie for no reason and that I had a fever and wouldn't be joining him since I have to be up early for the shower tomorrow. His response was that there is a fever "thing" going around right now and I better not give it to him. I stated that fortunately he cannot get what I have and he laughed and said that I'm ridiculous.

    I get that this is new, not just for me but for him too. I've tried so hard to be patient and to give him the time he needs to accept that I am sick but he's not coming along as quickly as I need him to. He's my best friend and the love of my life, but if he can't get this.. then I don't know what will happen.

    I watched Simply Love tonight (as recommended by another post -- that I would link to if I had the energy to do so after this insane rant). The worst thought crossed my mind and I feel so horrible for thinking it.. I have never had a distinct butterfly rash and after watching the movie I thought to myself.. I want that. I want something that you can see. I want people to look at me and know that I am sick. I invest so much into myself to look good and I feel like it is working against me instead of for me.

    Thanks for listening/reading. I will dedicate this rant to all of you who are also laying in bed on this beautiful Friday night. Know that you're not alone and that although I don't know you.. I understand you.
    Best wishes,

    M

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

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    something that has helped me is
    http://forum.wehavelupus.com/showthr...hout-CFS-Fibro

    the link for its origional site is
    http://notdoneliving.net/openletter/cfsfibro

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    theLword (04-21-2012)

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    a couple of other things i have learnt.... the hard way.

    stress is a major trigger for me.
    even a little stress will make me feel unwell.
    major stress and my body goes haywire.

    sun is not good for us.
    when you are feeling good.... a little sun may be ok
    when you are not feeling 100%... no sun is good.
    when it is hot.... no sun is good
    even flouro lights can effect many of us.

    rest is the only cure when inflamed.
    inflamation will not go away if you continue to do activities.
    inflamation medication does help.... but rest is essential.

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    My feet swell all the time too :/ it can really makes things hard to do when it hurts to get up and walk. Keep your feet up as much as you can and if they continue swelling I would look into getting TED hoes, they really helped with the swelling in my feet last year. I'm sure your boyfriend will come around. Give him time to figure out what all you being sick means.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    theLword (04-21-2012)

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    I have never had a distinct butterfly rash and after watching the movie I thought to myself.. I want that. I want something that you can see. I want people to look at me and know that I am sick.
    I can completely relate to this. I think my partner thinks I'm insane because if I have the slightest flush in my cheeks I'll bug her..."Look at this...what do you think? Do you think it could be? I mean...it looks like the pictures. Maybe it is..."
    I want evidence. My bloodwork has never been clear-cut either which is even more frustrating. I feel like a fraud when I bump into people who have heard I've been unwell...but there I am, ta dah! All showered and shiny and on my feet in the supermarket.

    It's understandable to want a physical sign. To say "Look...I am ill." Invisible illness is frustrating for us and for our partners. My partner says "You need to keep talking to me because I have no idea whats going on...unless you're in a major flare you don't look ill." So keep talking. Ask your partner if he's noticed any differences in you...about how often you go out, how tired you seem, how much you sleep, how much you talk. He'll learn to recognise the subtle signs that you're really feeling utterly crap. Show him things online...drill the point home. He has to understand to be a support for you.

    The link Steve has put up is really very useful xx
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    theLword (04-23-2012)

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    Thank you all so much. Joining this forum has really kept me going in the past month. I greatly appreciate all of the encouragement and support.

    Seeing my college friends went well. I recently bought a new car with a sun roof so I was proud of myself that I wore a hat during my long drive up to New York this weekend. The only rough part was that I was shaking pretty bad for most of the day, I'm not sure what from? Maybe a side effect from medication?? And also when I was driving, and I've noticed this before, after a while my right leg starts to cramp up. By the time I got home I was in a lot of pain.

    But today is another day
    Best wishes,

    M

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

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    My legs cramp when I'm driving and sometimes it leaves me with jelly legs when I get out! Driving looks easy...but it isn't always. I have problems with my arms and shoulders when driving too. Good on you for wearing your hat

    Are things ok with your partner? Did you show him the link?
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    theLword (04-26-2012)

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    Things with my partner have been a little better. I'm hoping that he's slowly but shortly coming around. However one of his, friends who I have only met once, was over the other night. His friend has been having issues with his eyes and since I'm on plaquenil I was more interested that I usually would be. Out of no where my boyfriend explained my interest by bluntly say.. oh yeah, she has lupus. So matter of fact. His friend of course reacted as I would expect someone to when someone tells them they have a chronic illness. I'm hoping by partner took something away from it, but I guess only time will tell.
    Best wishes,

    M

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

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    Your partner sounds like my brother...blunt as! Because he's not experiencing it he won't be quite as eloquent when it comes to describing it as we would...but I think that he told his friend shows he's open to talking about it, he's not pretending it doesn't exist which is a good thing.

    My partner reckoned I used this forum too much. This was after she'd told me she doesn't understand and no matter how much I explain how I feel to her she just doesn't get it. So I pointed it out - people here understand how I feel.

    Don't you just wish they could live with it, just for one day?
    Last edited by Shine; 04-26-2012 at 09:50 PM. Reason: I can't type.
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    Default re: joint pain on the right side of my body

    Quote Originally Posted by theLword View Post
    And also when I was driving, and I've noticed this before, after a while my right leg starts to cramp up. By the time I got home I was in a lot of pain.
    OMG I am SO glad you brought this up, this is one of those symptoms I've had forever and thought I was just crazy!

    I get joint pain and muscle cramps often but they are almost always more severe or isolated to my right side. In fact, sometimes when I drive my right foot and/or knee starts to have stabbing pains and I either have to put the car on cruise control, or drive with my Left foot to survive on long car rides! If I don't, the pain can be excruciating! Today the joint pain in my wrist and hand was so bad, I ended up controlling the mouse on my laptop with my left hand, and typed most of my emails with just one hand today. It's truly crazy how the pain just settles on one side of the body like that. I've searched medical sites and none seem to mention this phenomenon but if you look at this and other Lupus/SLE message boards I've seen comments like these relatively often.

    I wonder if/when they'll figure out why??

    ~Deannegirl

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