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

  1. #11
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    Awww hugs you guys, my heart is breaking for you. There's aline from a song that keeps repeating in my head...

    Kickem when their up...kickem when their down.
    :shock:

    Enough already....it has to stop somewhere...no more for any of you, that's it. You're full.

    hugssss
    Susan

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    WantitGone, I'm sorry you had to join this particular party...yeah, me too.

    My rheumatologist said (when she first told me I probably had fibromyalgia - having done the ol' squeeze test) that I shouldn't get too hung up on the diagnosis - it was a "wastebasket term." Huh???? I assumed she meant that doctors will often dump any unexplained pain into that diagnosis. Generally, I've been very happy with my rheumatologist - she takes lupus seriously, and has never "pooh-poohed" my lupus symptoms. But her attitude about FMS seems a little cold.

    In my local support group, two-thirds of the members have both lupus and FMS. It really IS difficult to tell whether the pains are FMS or lupus.

    I hope the neurontin works for you!

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  3. #13
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    Quote Originally Posted by Saysusie
    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
    Thanks saysusie! It's sooo amazing to me how many commonalities we all have. It's truly amazing and heartbreaking in a way. Why us?!? That's life huh? I'm also so shocked how many people had the exact same response with the "FM torture chamber." I didn't necessarily want to jump off the table but I sure did look @ her like "stop! that hurts." Lol. When she told me she'd only touched me there I thought she was lying for about 5 minutes. She's a really good rheumatologist. As I've said in other threads, I thought she was a bit overagressive. Now, I'm just forcing myself to appreciate her aggressiveness and concern for us lupus and fm sufferers. She told me the same thing, it's difficult to tell which pain is attributed to lupus and which one is because of fm. She told me to keep a diary and try to figure out what triggers the fm and lupus. So, I'll be doing that over the next few weeks. I picked up my Neurontin. I don't know how quickly it's supposed to work (if anyone knows, let me know. . . thanks in advance) but right now, I feel pretty good. My back hurts a bit but it's not enough to even complain.

    Anyway, I hope you're feeling a bit better!!

  4. #14
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    Quote Originally Posted by sits_inthe_corner
    Awww hugs you guys, my heart is breaking for you. There's aline from a song that keeps repeating in my head...

    Kickem when their up...kickem when their down.
    :shock:

    Enough already....it has to stop somewhere...no more for any of you, that's it. You're full.

    hugssss
    Susan
    Lol. I love that song sits. . . thanks, I'll keep it in my head. I'm singing it now.

  5. #15
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    Quote Originally Posted by mnjodette
    WantitGone, I'm sorry you had to join this particular party...yeah, me too.

    My rheumatologist said (when she first told me I probably had fibromyalgia - having done the ol' squeeze test) that I shouldn't get too hung up on the diagnosis - it was a "wastebasket term." Huh???? I assumed she meant that doctors will often dump any unexplained pain into that diagnosis. Generally, I've been very happy with my rheumatologist - she takes lupus seriously, and has never "pooh-poohed" my lupus symptoms. But her attitude about FMS seems a little cold.

    In my local support group, two-thirds of the members have both lupus and FMS. It really IS difficult to tell whether the pains are FMS or lupus.

    I hope the neurontin works for you!

    Jody
    "Wastebasket term?!?" What the crap. That wasn't very sensitive. My rheumy is pretty good. She went into great detail about fm. I had a bit of an issue with the diagnosis yesterday simply because one of my colleagues (a fellow psychologist who has chron's disease) told me a while ago that fm is more of a "mental" diagnosis. She told me this because I was talking about another one of our colleagues and saying how badly I felt for her that she suffered from fm. I made a statement about the other colleague having a similiar disease as us (autoimmune). I originally though fm was one of the autoimmune disorders. So, she goes on to tell me that it isn't. I googled and found that she was correct. She really made a point of differentiating between lupus and fm saying lupus can be diagnosed using tests and fm couldn't. . . so, she believes it's more mental. So, I guess that's stuck in my head since then. When several people on this site suggested that I may have fm, I could only think of her statements.

    But, thanks to you guys, my rheumy, and my own research, I now have a better understanding of fm. My rheumy explained that it's a reactive disorder. My fm is my body's way of reacting to lupus. She also explained that because of that, my body is extra sensitive because of nerve endings. Healthy people's nerve endings know a touch isn't painful whereas our nerve endings are so sensitive to pain that it hurts. I hope I explained (what my rheumy explained) that well. So, I'm cool with it. I know what I feel is pain. I'm also ok with the diagnosis because I now truly understand how much stress (whether it's physical or emotional) plays such an important role in how our body feels. I am stressed out. Can't go into detail but trust me, I think I've admitted over the past day that although I've told myself I'm not stressing, my body is letting me know. . . girl, you are truly stressing. Like I said, even if I'm not stressing 100% mentally, it's still physically stressful to deal with all that we have to deal with having lupus.

    I'm so sorry that was so long. I feel so much better saying all of that. I can't tell you guys how good it feels to say these things and know you guys can truly relate. I love support groups!!!! Lol! Thanks you guys! Seriously, for all of the helpful advice, support, and just concern.

  6. #16
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    WantitGone, I had never heard of FM described as a reactive disorder. Interesting. I don't think my rheumy doubts that FM is a 'real' disorder, but she really seems to want to keep the focus on the lupus. I have a lot of trouble sleeping - those painful areas are often really tender at night. My rheumy said that research is showing that FM not only makes sleeping difficult, but that a history of sleep problems can often contribute to the development of FM.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  7. #17
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    Quote Originally Posted by mnjodette
    WantitGone, I had never heard of FM described as a reactive disorder. Interesting. I don't think my rheumy doubts that FM is a 'real' disorder, but she really seems to want to keep the focus on the lupus. I have a lot of trouble sleeping - those painful areas are often really tender at night. My rheumy said that research is showing that FM not only makes sleeping difficult, but that a history of sleep problems can often contribute to the development of FM.
    I've read the same, that people w/fm have a history of sleeping poblems. Thankfully, my sleep hasn't been disturbed. I'd be really irritated then. I love my sleep!

  8. #18
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    I think that is interesting that sleeping problems may have an impact. I actually had a doctor mention FM to me several years before my Rheumy. I was at a sleep clinic. I have several sleep disorders, sleep walking, severe night terrors, sleep paralysis, and intense insomnia. Now dealing with pain and trying to sleep... sheesh! At least the other crap only bothers me from time to time. Although I have to say, my doc put me on Nortriptyline, I am sleeping a bit better. YAY
    ~SwirlyGirly~
    California
    })i({

  9. #19
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    Hey Swirly Girl,

    I just noticed you are from the Central Valley, CA. We are actually pretty close probably. What city are you from?

    I hope you are feeling better.

    Take care,

    Faith 8)

  10. #20
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    Quote Originally Posted by SwirlyGirly
    I think that is interesting that sleeping problems may have an impact. I actually had a doctor mention FM to me several years before my Rheumy. I was at a sleep clinic. I have several sleep disorders, sleep walking, severe night terrors, sleep paralysis, and intense insomnia. Now dealing with pain and trying to sleep... sheesh! At least the other crap only bothers me from time to time. Although I have to say, my doc put me on Nortriptyline, I am sleeping a bit better. YAY
    Omg!! Wow swirly, that's a lot to deal with. I know we all have our ailments but I've said it before, if my sleep is disturbed I think I'm seriously going crazy! Sleep deprivation is something I seriously don't think I can deal with. I'm sooo happy the new med is helping you sleep better. Yay!!!

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