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Thread: It's been a long time

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  1. #1
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    Default It's been a long time

    Wow, I just realized I haven't logged on to this site in over 2 years. I guess that's what happens when you start to feel better and the activities of life increase.

    I've recently been struggling trying to get by everyday. Back in September last year I started with increased fatigue and some minor joint aches due to pushing myself a little too hard. In December I started to get this back pain in my shoulder blade area which I had a few years back during a huge flare. Since December it has increased and my whole upper back is so painful especially in the morning and at night. A few years ago they thought it was myofacial pain but I am starting to think I have fibromyalgia. Even the muscles in my upper arms are so painful it hurts sometimes to even lift them. This pain has continued for the last 4 1/2 months. My rheum last month did not feel that it was the lupus but muscle related. He started me on a low dose of lyrica because I have been dealing with throbbing pain. I will admit that it did help some because I was able to finally lay down flat with minimal pain.

    After being laid off from my previous job I had to start over again in January. I started a new area of nursing and I am assisitng with surgeries. It started out great but they have been increasing the number of surgeries and it's taking a toll on my. I'm on my feet almost a full 8 hours. Also my feet have started to hurt on the bottoms. Not sure if this is related to the lyrica or not. I have developed ankle swelling from the lyrica too. I just don't know if I can continue in this job. I'm trying to find a new one but it's hard thanks to the economy.

    Life is just miserable right now. My poor husband has to always hear me whine and I can hardly do any housework. It's ridiculous!!!! I feel so useless. I just cry some evenings because of the pain. And I can't get the adequate sleep because between 330 and 530 in the morning I wake up with the stiffest back and can not get comfortable. I just wish this would all go away!

    Sorry for whining to you all but I didn't know where else to go that others would understand me.
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Default hi

    Oh so much to deal with and you are NOT whining at all.Wow,so much pain and discomfort.I wish Doctors would listen and help people in suffering so much more than they do.I hope you can call him,let him know all this what told us.You need more help and now.I understand how you must feel at home,but you are sick and its not your fault.I understood all what you wrote as i too feel similar pain.I hope very soon you get help from your Doctor who should be helping you more.I am thinking of you.So glad you came back.I have seen posts in the past from you.Many members you know will come and support you my friend.You are not alone and you know we all understand you.Just take one day at a time and take it slow.We are here for you.

    love n support
    Angel.xxxxxxxx
    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

  3. #3
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    Default Thank you

    Thanks Angel I appreciate your response. It means a great deal to me.
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Default hi

    You are welcome just wish i could help you more.Think about calling the doc and telling him all this.Could make a massive difference to your life.Keep posting.xxxxxxxxxxxxxxxx
    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

  5. #5
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    Default

    So sorry you're suffering, ButterflyRN....sending a gentle HUG your way....

    I'm pretty sure in the rules of the forum it states that each member is entitled to as many vents and whines as they want. They haven't set a limit luckily....otherwise most of us would be way past it.

    This must be especially hard for you, cuz you had those few years without any problems, when you were feeling good. So to be hit again with more symptoms and pain is just so frustrating.

    The economy and employement situation right now has affected so many people, and I'm certain has caused plenty of people to be making some choices about whether to stay, or not stay, in a job that's not ideal for them. I wish it wasn't so. This has caused so many people such terrible stress, it's hard to watch the effects it's having everywhere. I'm really sorry the job that you thought would be what you want and would make you happy, has turned out to be difficult with your health situation at the moment. I'm not sure I have any suggestions or advice worth sharing...but I did have a thought about your very sore bottoms of your feet. Could you try some of those gel insoles for your work shoes to see if that might give a little relief for your eight hour standing situation? Maybe you're already doing this...but I'd thought I'd throw it out there.

    Unfortunately, I haven't been on Lyrica so not sure about any side effects. I know there are several members who have, so I'm hoping they'll join this thread soon.

    I just wanted to let you know I understand your sadness and frustration and I'm sorry you have to go through this. Just know that you can always come here and find someone to help you through the tough times...someone that understands and cares.

    Fondly,

    Lori

  6. #6
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    ButterflyRN;
    First...WELCOME BACK!!! I, of course, remember you and I am so glad to see you back with us. I am sorry that you are suffering so much right now and I understand how conflicting your job situation is given the crisis in our economy and the loss of so many jobs by so many people. This, in and of itself, can cause a harmful amount of stress and I wish that there was something that I could do to help alleviate your stress

    I'm sure that you remember that there is no such thing as whining here. We all understand what you are dealing with and we know how this disease can wreak havoc on our lives. So, please do not apologize, it is not necessary.
    I, too, have Lupus and Fibromyalgia and I have to tell you that I suffer so much more from my Fibro than my Lupus. My muscles ache (oh my GOD how they ache) relentlessly, they burn (as if someone were using a blow-torch up and down my arms and legs). The stiffness..my doctor attributes this to my Lupus, the burning and aching are attributed to my Fibro. Whatever the underlying cause...the pain, stiffness, aches and burning are almost disabling!
    I've heard good things about Lyrica and Fibromyalgia. Unfortunately, I belong to an HMO that does not prescribe Lyrica - so I am still taking anti-depressants for the pain. I understand that Lyrica takes a while to truly feel its effects, but once that happens, it has been reported to work well. I do hope that it works for you!
    I truly understand your sadness and there is nothing wrong with you for feeling this way. However, you are not useless! You are very brave and very productive - still working at a stressful and demanding job while dealing with all of these adverse symptoms. It is quite natural for you to be completely depleted by the time that you get home from work. Look at the uphill battle that you've won just by going to work and making it through the day (fighting fatigue, pain, aches, depression, etc.). No, you are so very, very far from useless! You are, in fact, an inspiration and I admire your strength!
    If you find that you are not able to continue in that job, please DO NOT consider yourself as having failed. That is so far from the truth! In an 8 hour day, you have done much more that I can do in a week! However, you may have to make some accommodations in order to manage your health with these illnesses! That is not a failure, it is a very brave thing to do. Please know that we are here for you and to help you in any way that we can! Give yourself credit for all that you do. We recognize your strength, it is time for you to recognize it also!
    Again.....welcome back!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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