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WeHaveLupus.com
Lupus Erythematosus Support Forum
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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 Posted: Wed May 14, 2008 1:54 pm Post subject: Lupus sucks. . . guess I have Fibromyalgia now!! |
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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."  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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Shyce
Little Guppy
Joined: 28 Mar 2008
Posts: 35
Location: Kingston, Jamaica, West Indies
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| Posted: Wed May 14, 2008 4:35 pm Post subject: |
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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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SwirlyGirly
Little Guppy
Joined: 08 May 2008
Posts: 35
Location: Central Valley California
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| Posted: Wed May 14, 2008 4:37 pm Post subject: |
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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
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Wed May 14, 2008 5:16 pm Post subject: |
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| Shyce wrote: | 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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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Wed May 14, 2008 5:20 pm Post subject: |
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| SwirlyGirly wrote: | 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 *What the Heck* 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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Faith
Cobra
Joined: 25 Sep 2007
Posts: 461
Location: California
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| Posted: Wed May 14, 2008 10:01 pm Post subject: |
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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  |
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Thu May 15, 2008 3:03 am Post subject: |
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| Faith wrote: | 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 |
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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Faith
Cobra
Joined: 25 Sep 2007
Posts: 461
Location: California
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| Posted: Thu May 15, 2008 6:57 am Post subject: |
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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  |
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Thu May 15, 2008 7:35 am Post subject: |
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| Faith wrote: | 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 |
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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Saysusie
Moderator
Joined: 11 Nov 2001
Posts: 4152
Location: Victorville, California
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| Posted: Thu May 15, 2008 9:22 am Post subject: |
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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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sits_inthe_corner
Lion King
Joined: 10 Feb 2008
Posts: 1238
Location: Nova Scotia, Canada
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| Posted: Thu May 15, 2008 1:12 pm Post subject: |
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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.
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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mnjodette
Lion King
Joined: 16 Sep 2006
Posts: 1316
Location: Minnesota
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| Posted: Thu May 15, 2008 1:32 pm Post subject: |
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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
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"Always laugh when you can. It is cheap medicine." Lord Byron |
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Thu May 15, 2008 3:23 pm Post subject: |
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| Saysusie wrote: | 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!! |
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Thu May 15, 2008 3:24 pm Post subject: |
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| sits_inthe_corner wrote: | 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.
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. |
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WantItGone
Big Hamster
Joined: 25 Mar 2007
Posts: 98
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| Posted: Thu May 15, 2008 3:34 pm Post subject: |
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| mnjodette wrote: | 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. |
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