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Thread: Lupus sucks. . . guess I have Fibromyalgia now!!

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    Default Lupus sucks. . . guess I have Fibromyalgia now!!

    Greetings all!!

    I'm a little irritated right now. I know we all are at some point, that's why I feel at home here. So, I posted in other threads about these different pains I've been experiencing in my muscles (back, arms, legs) including inflamation. Some of you have said it sounds like fibro. Well, you were right. I didn't want to admit it and still don't. I'm going to get a book Faith suggested so that I can get a clearer understanding of what fibro is all about. I'm happy I had the experience I had today though because if not, I would've stayed in denial. The experience I'm referring to is, I told my rheumy about the new aches and explained in detail. So, she had me sit on the doctor's table (I forget what that's called, having a bit of brain fog right now ). Anyway, she touches me on around 6 or seven different points, my knees, wrists, elbows, and back. To me, it seemed like she was squeezing. I winced in pain at each point and said "Yes!" when she asked "does that hurt." So, I'm thinking she was squeezing or applying extra pressure. I ask "so, what, is that not supposed to hurt?" She says no. I say "well, you squeezed pretty hard." She said "no, I didn't squeeze, I just touched you there." :shock: I was surprised. She went on to explain that my nerve endings were supposed to send a signal to my brain that what she did wasn't painful, but they didn't. So, I don't know. . . I'm trippin a bit right now. She prescribed Neurontin (don't know if I spelled that right). I really don't want to add another medication but I'm feeling quite funky right now so I guess I'll have to. Anyway, I just wanted to give an update after my visit. Thanks to everyone who had such helpful suggestions and input. You guys are awesome!

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    i recently was told i have fibro as well. and it aint fun either. i had the same experience as u did with the doc.

    what meds are u given for it?
    suffering from lupus, wish i were living with it, and surviving

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    I totally know how you feel! After fighting so hard for that initial diagnosis of lupus, then finding these other lurking things was rather disconcerting for me as well! I have since collected Fibro, sjogren's, and raynaud's. I do have to admit, once getting the labels and researching each of them, it made more sense to me. My doc is trying me on Nortriptyline for the Fibro. It is the very first meds anyone has tried for my fibro. I'm actually excited. Each of those pressure points you mentioned radiate pain for me all the time. Just wearing any pants with a waist band that touches my back makes me feel like I just got struck by lightening!

    So take the time to get acquainted with your new "label". Acceptance does get easier. You've already tackled the denial. I hope the meds do help you!
    ~SwirlyGirly~
    California
    })i({

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    Quote Originally Posted by Shyce
    i recently was told i have fibro as well. and it aint fun either. i had the same experience as u did with the doc.

    what meds are u given for it?
    Hi Shyce,

    I was prescribed Neurontin (don't know if I'm spelling that right). I'm going to get it now. Wish me luck!

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    Quote Originally Posted by SwirlyGirly
    I totally know how you feel! After fighting so hard for that initial diagnosis of lupus, then finding these other lurking things was rather disconcerting for me as well! I have since collected Fibro, sjogren's, and raynaud's. I do have to admit, once getting the labels and researching each of them, it made more sense to me. My doc is trying me on Nortriptyline for the Fibro. It is the very first meds anyone has tried for my fibro. I'm actually excited. Each of those pressure points you mentioned radiate pain for me all the time. Just wearing any pants with a waist band that touches my back makes me feel like I just got struck by lightening!

    So take the time to get acquainted with your new "label". Acceptance does get easier. You've already tackled the denial. I hope the meds do help you!
    Thanks! I know I have to just get acquainted with it. I have raynaud's also. That's irritating as well. I was always the one who could go out in 50 degree weather with no coat on and bake in the sun all day long. Now, I have to wear gloves in 60 degree weather and an extra pair of socks. Arrrgghh! And, I had a horrid experience in Miami. I didn't even pay attention to the sun sensitivity thing two years ago as I laid out in the sun from 12-4 (which is something I've always done). Omg!!! You guys, two days later (after doing that same thing for two days, dummy huh?!), I could barely walk from the airplane to my car. When I got home (still not knowing wtf was wrong, lol), I was in the bed for two days. One of my friends was like, "hello, you're sun sensitive!" I'm like "oh my God, what a moron I am!" I'm lol now but I truly wasn't then. I hope the meds work as well. I'm sure they will. Thanks so much for posting!!

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    Hi Want It Gone,

    I posted on another post. I am sorry to hear you have joined the fun fibro party. I was afraid that you had fibro from your description the last time we talked. Check out the book I had mentioned earlier; as it explains it in detail.

    I also have Raynaud's, Lupus, and recently Sjogrens. God doesn't give us more than we can handle. I keep telling myself that. I hope your new meds help. Keep us updated and take care.

    Faith :lol:

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    Quote Originally Posted by Faith
    Hi Want It Gone,

    I posted on another post. I am sorry to hear you have joined the fun fibro party. I was afraid that you had fibro from your description the last time we talked. Check out the book I had mentioned earlier; as it explains it in detail.

    I also have Raynaud's, Lupus, and recently Sjogrens. God doesn't give us more than we can handle. I keep telling myself that. I hope your new meds help. Keep us updated and take care.

    Faith :lol:
    thanks faith!!

    can you give me the name of that book again, i've searched the threads and can't find that post. again, thanks, talk to you soon and take care!

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    Hi Want It Gone,

    It is called "All About Fibromyalgia" by Daniel J. Wallace; the same author/md that wrote about "Lupus for Patients and Families." I found it on ebay, amazon, and through the local library.

    Keep us updated.

    Take care,

    Faith 8)

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    Quote Originally Posted by Faith
    Hi Want It Gone,

    It is called "All About Fibromyalgia" by Daniel J. Wallace; the same author/md that wrote about "Lupus for Patients and Families." I found it on ebay, amazon, and through the local library.

    Keep us updated.

    Take care,

    Faith 8)
    Thanks faith! I'm going to get it today. I meant to get it when I had easter break but didn't.

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    Hi WantitGone;
    Like you, I have Lupus, Fibromyalgia, Raynaud's, and a few others. My doctor also did the pressure point test on me - she called it her FM torture chamber (I think that there are 17), of the 17, I had 14. Also, like you, each time that she touched one, I wanted to jump off of the table because it hurt so bad.
    My FM has been flaring now for going on 5 months straight. I was finally referred to physical therapy to help with the pain. I am also taking Nortryptiline as well as baclofen (a muscle relaxer), and B-12 shots.
    It is common for persons with Lupus to also have Fibromyalgia as an overlap disease. Often times, it is difficult for us to discern which pains are from Lupus and which pains are from Fibromyalgia.
    You are not alone and there are many of us who are suffering from the same symptoms as you. I truly understand your frustration at not wanting to have another illness, which means more medication. I feel exactly the same way! So, we can support one another in this, oh so maddening mix of diseases!

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

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