During my last appointment, my rheumy said he thinks I also have fibro, even though I don't have the trigger points, because of the brain fog and fatigue. I thought those things were also caused by lupus and Sjogren's, both of which I have. He said 60-70% of lupus patients also have fibro. I'd be interested in knowing how many of you have also been dxd with fibro and if you have the trigger points.
Do You Have Fibromyalgia Too?
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fibro
Hi,
I have been diagnosed with uctd and I also have fibro. I do have the tender points. Sometimes it's hard to know for sure if my pain is from the ctd or the fibro or both.
Tammie
Hi,
I have been diagnosed with uctd and I also have fibro. I do have the tender points. Sometimes it's hard to know for sure if my pain is from the ctd or the fibro or both.
Tammie
Hi, yes, I have fibro as well as Sjogren's and a list of other things. Maybe lupus, maybe not. It's been six years now and the medical profession has given and taken a lupus DX over and over. Whatever. The fact that I have fibro is causing problems for me right now. Not physically but with the new rheumatologist in town. Grrrrrrr.
Fibro is no joke. It can cause terrible, debilitating symptoms and it's hard to treat. A lot of doctors don't take fibro seriously, but it is real, causes real pain and other symptoms and can disrupt life in a big way. Often mild exercise will help fibro symptoms. Of course, if you're too sick with other illnesses to exercise that can be a problem.....
Good luck,
Sunny
Fibro is no joke. It can cause terrible, debilitating symptoms and it's hard to treat. A lot of doctors don't take fibro seriously, but it is real, causes real pain and other symptoms and can disrupt life in a big way. Often mild exercise will help fibro symptoms. Of course, if you're too sick with other illnesses to exercise that can be a problem.....
Good luck,
Sunny
Hi,
I don't have Fibro according to my Professor of Immunology but I did see a Rheumy once who diagnosed me with it without a tender point examination and because my bloods weren't showing much at the time. I think if bloods are looking ok then they will often slap it on us without us meeting the criteria for it. Mind you some of those criteria are similar to lupus symptoms too and even those here who have both SLE & Fibro will tell you it's hard to distinguish what is causing what pain/ache.
I was going to challenge what your doctor said about 60% of SLE patients having Fibro however it seems there have been lots of studies done and the percentage range varies widely! So technically speaking UP TO 60% can have it according to one study. 30% is probably a more mid way realistic point.
Here's some more info from what I call the 'lupie bible'
http://books.google.com.au/books?id...i5HzCg&sa=X&oi=book_result&ct=result&resnum=1
I guess if you aren't having disturbed sleep then that's something to take into consideration seeing as it's one of the main manifestations of Fibro. That was my argument at the time, if my pain was controlled I slept well, in fact I was so tired I could sleep on a barbed wire fence if I had to :lol: and I had no tender points upon examination.
The main thing is what is he proposing as treatment and is it working? That might be another way to tell. I tried the Fibro drugs and they did nothing for my pain. Once I got the pain from lupus under control I slept like a baby.
In between specialist visits if my bloods are ok and I present with muscle and joint pain my GP likes to pull out the Fibro card, mainly because he doesn't know what else to say or offer up............I could slap him!
Hope this helps,
love
Lily
I don't have Fibro according to my Professor of Immunology but I did see a Rheumy once who diagnosed me with it without a tender point examination and because my bloods weren't showing much at the time. I think if bloods are looking ok then they will often slap it on us without us meeting the criteria for it. Mind you some of those criteria are similar to lupus symptoms too and even those here who have both SLE & Fibro will tell you it's hard to distinguish what is causing what pain/ache.
I was going to challenge what your doctor said about 60% of SLE patients having Fibro however it seems there have been lots of studies done and the percentage range varies widely! So technically speaking UP TO 60% can have it according to one study. 30% is probably a more mid way realistic point.
Here's some more info from what I call the 'lupie bible'
http://books.google.com.au/books?id...i5HzCg&sa=X&oi=book_result&ct=result&resnum=1
I guess if you aren't having disturbed sleep then that's something to take into consideration seeing as it's one of the main manifestations of Fibro. That was my argument at the time, if my pain was controlled I slept well, in fact I was so tired I could sleep on a barbed wire fence if I had to :lol: and I had no tender points upon examination.
The main thing is what is he proposing as treatment and is it working? That might be another way to tell. I tried the Fibro drugs and they did nothing for my pain. Once I got the pain from lupus under control I slept like a baby.
In between specialist visits if my bloods are ok and I present with muscle and joint pain my GP likes to pull out the Fibro card, mainly because he doesn't know what else to say or offer up............I could slap him!
Hope this helps,
love
Lily
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I have fibro, sle, sjogren's, celiac disease, gerd, and a couple more side issues.
A lot of the sle patients I have known have fibro as well as sle and a few other things that often go with sle.
Sally
A lot of the sle patients I have known have fibro as well as sle and a few other things that often go with sle.
Sally
I agree with Lily 100% and my experience is similiar to hers.
I have been diagnosed with fibromyalgia since 1991 even though I have never had the required number of tender points. I was diagnosed with an autoimmune disease only recently (exactly which autoimmune disease is still unknown -- I meet 8 of the 11 criteria for a diagnosis of lupus but my blood work doesn't completely support a diagnosis of lupus and some of my symptoms fit other autoimmune diseases) I think the diagnosis of fibromyalgia prevented me from being properly diagnosed and treated for almost 20 years. They did test for antinuclear antibodies around 1991 but the test was negative and they never tested again until last year after things got really bad for me (way too late, in my opinion, because I have permanent damage in parts of my body)
I have been diagnosed with fibromyalgia since 1991 even though I have never had the required number of tender points. I was diagnosed with an autoimmune disease only recently (exactly which autoimmune disease is still unknown -- I meet 8 of the 11 criteria for a diagnosis of lupus but my blood work doesn't completely support a diagnosis of lupus and some of my symptoms fit other autoimmune diseases) I think the diagnosis of fibromyalgia prevented me from being properly diagnosed and treated for almost 20 years. They did test for antinuclear antibodies around 1991 but the test was negative and they never tested again until last year after things got really bad for me (way too late, in my opinion, because I have permanent damage in parts of my body)
OK, so it does seem like fibro is common with SLE. I'm intrigued by this because I like to fantasize that I really don't need the lupus drugs and that if I started taking the Lyrica or Cymbalta for my symptoms, I'd be in good shape, because it's fibro causing the problems, not lupus/SS. But I know that I got better on the lupus drugs and when I was off the MTX before the Imuran kicked in, I was in bad shape. The doctor offered the fibro drugs for my remaining pain, but I refused it. I don't want any more pills if I can avoid it and he/I don't even know if the left-over pain is really from the fibro. The left-over pain is minor and I can live with it, usually without any pain meds, so why add to my drug list?
What some of you have said really rings true. Since lupus is so hard to dx, I wouldn't be surprised if my lupus dx is taken away at some point. The Sjogren's is something the doctor is certain about, even though I have rarely had dry eye and/or mouth. I wish this all was more clear-cut. The uncertainty of all this is maddening. It would be easier to deal with it all if I could be certain of what's going on. Adding fibro to the mix just frustrates me more. Oh yeah, I do have disturbed sleep, so maybe that's another reason he suspects fibro. He did, however, increase my Imuran because my symptoms are progressing.
BTW, does your doctor do any ANA or other diagnostic testing after you are on the meds? My doctor doesn't, he just tests for liver function, SED, urine, and any other inflammatory markers. I'd be curious to know what the ANA tests say now. He did check the ANCA and it became normal after the meds.
Thanks for your input, everyone, and Lily, thanks for the link. That looks like a very informative book. Is that the best lupus book you have found?
What some of you have said really rings true. Since lupus is so hard to dx, I wouldn't be surprised if my lupus dx is taken away at some point. The Sjogren's is something the doctor is certain about, even though I have rarely had dry eye and/or mouth. I wish this all was more clear-cut. The uncertainty of all this is maddening. It would be easier to deal with it all if I could be certain of what's going on. Adding fibro to the mix just frustrates me more. Oh yeah, I do have disturbed sleep, so maybe that's another reason he suspects fibro. He did, however, increase my Imuran because my symptoms are progressing.
BTW, does your doctor do any ANA or other diagnostic testing after you are on the meds? My doctor doesn't, he just tests for liver function, SED, urine, and any other inflammatory markers. I'd be curious to know what the ANA tests say now. He did check the ANCA and it became normal after the meds.
Thanks for your input, everyone, and Lily, thanks for the link. That looks like a very informative book. Is that the best lupus book you have found?
I don't have fibro... I tend to believe the 30% figure personally... 
There are a lot of errors in diagnosis & in medical charts -- and many are given the diagnosis incorrectly without truly meeting the criteria. Any research done with chart review is highly suspect research and not too trustworthy in my book.
Another factor into why so many answered they have it in your thread... is in large part due to the title of your thread! Many without it will probably not read it and/or not respond.
But it is common to have both, and perhaps you want to inquire into additional treatment just for your fibro symptoms if you haven't tried all the options yet?
There are a lot of errors in diagnosis & in medical charts -- and many are given the diagnosis incorrectly without truly meeting the criteria. Any research done with chart review is highly suspect research and not too trustworthy in my book.Another factor into why so many answered they have it in your thread... is in large part due to the title of your thread!
Many without it will probably not read it and/or not respond. But it is common to have both, and perhaps you want to inquire into additional treatment just for your fibro symptoms if you haven't tried all the options yet?
Thanks Maia. I don't know if my remaining symptoms are fibro, but the pain is minimal and I can nap during the day if I don't get enough sleep at night so I don't want to start sleeping pills. The idea of taking more meds on the hunch that it's fibro just seems insane to me. If I wasn't getting relief from the lupus drugs I might consider it but not now.
I was just curious as to how many people with lupus also have fibro and it's interesting to read the responses.
I was just curious as to how many people with lupus also have fibro and it's interesting to read the responses.
Hi Jesse,
That book is very technical and I don't have a copy but if there is a particular thing you want to know about then it will usually come up in a google search. Trouble with online viewing is they usually just show you a page or so of relevant into and often we would like to read the preceding page too I'd personally love a copy of it but it's quite expensive and the shipping on it would be very high too I think because of it's weight! There is another book that is very good and not quite as involved or technical but still excellent and that is The Lupus Book by Daniel Wallace, it's in it's third edition now and available through Amazon via our bookstore here. For anyone wanting any books the site gets a small kickback that helps with our running costs if things are ordered via our bookshop - that sounds like an ad but it's all helpful to the site :lol:
My Lupie doc doesn't run ANA these days, he said it's good for diagnostic purposes but since I am on immune suppressants and Plaq he the ANA is bound to be negative or pretty low as long as they are working. He usually goes by my symptoms. Smart man.
My GP on the other hand can't quite grasp that concept and he keeps running ESR & CRP on me and they come back in range. I'm one of those Lupies that have never returned a raised level for either of those bloods but my GP can't get his head around that anyway it's his problem not mine. Just a bit frustrating and if he wasn't running FBC and liver functions on me because of the Imuran I would probably refuse to have the ESR and CRP taken :lol: just on principle! I know that occassionally my Lupie doc checks for ENA etc. because he is curious if I will ever show a positive on any of them. I'm an ANA pos and low C3 C4 type lupie In fact the C3 & C4 seem to say more about my state of health than anything else ever has. I will also start getting large amounts of blood and some protein when I'm flaring. If things get really bad then an MRI is very telling because of my Vasculitis, but that's been pretty stable for a couple of years. Apart from that it's all symptoms, they seem to speak louder than any bloods for the most part.
Hope this helps,
love
Lily
That book is very technical and I don't have a copy but if there is a particular thing you want to know about then it will usually come up in a google search. Trouble with online viewing is they usually just show you a page or so of relevant into and often we would like to read the preceding page too
I'd personally love a copy of it but it's quite expensive and the shipping on it would be very high too I think because of it's weight! There is another book that is very good and not quite as involved or technical but still excellent and that is The Lupus Book by Daniel Wallace, it's in it's third edition now and available through Amazon via our bookstore here. For anyone wanting any books the site gets a small kickback that helps with our running costs if things are ordered via our bookshop - that sounds like an ad but it's all helpful to the site :lol:My Lupie doc doesn't run ANA these days, he said it's good for diagnostic purposes but since I am on immune suppressants and Plaq he the ANA is bound to be negative or pretty low as long as they are working. He usually goes by my symptoms. Smart man.
My GP on the other hand can't quite grasp that concept
and he keeps running ESR & CRP on me and they come back in range. I'm one of those Lupies that have never returned a raised level for either of those bloods but my GP can't get his head around that anyway it's his problem not mine. Just a bit frustrating and if he wasn't running FBC and liver functions on me because of the Imuran I would probably refuse to have the ESR and CRP taken :lol: just on principle! I know that occassionally my Lupie doc checks for ENA etc. because he is curious if I will ever show a positive on any of them. I'm an ANA pos and low C3 C4 type lupie In fact the C3 & C4 seem to say more about my state of health than anything else ever has. I will also start getting large amounts of blood and some protein when I'm flaring. If things get really bad then an MRI is very telling because of my Vasculitis, but that's been pretty stable for a couple of years. Apart from that it's all symptoms, they seem to speak louder than any bloods for the most part. Hope this helps,
love
Lily
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Hi Jesse
I have fibro as well as SLE. I was diagnosed with fibro first because of my presenting symptoms but shortly afterwards I was diagnosed with SLE. As a result the fibro diagnosis sort of faded into the background and I guess I thought it was just a misdiagnosis at the time.
However over the years it has become obvious (even to a sceptic like me!) that I have both. My Rheumy at one stage mentioned that she thought fibro was causing a lot of my pain problems and I was surprised because I thought that she had also 'scrapped' the fibro diagnosis. She did do a trigger point test and I nearly hit the roof! I have to say that I have fairly classic trigger point pain and tenderness. Even the spots under the butt cheeks.
At that point she asked me to try Amitriptyline but it didnt agree with me at all and had me awake most of the night instead of helping me sleep. Typical A year or so later, she asked me to try Lyrica and I did for a while. However I found that it bloated out my stomach horribly. I am a large size anyway and it took a while to figure out that the meds were causing this! I just thought I should keep away from the fridge
I decided to stop the Lyrica and the bloating resolved. Sometimes I am tempted to try it again because the overall pain at times is very hard to function with but so far I am managing by taking painkillers as needed. I also take a product called KALMS Sleep to help with the sleeping problems. It works relatively well most nights but I intersperse it with another product now and again if I find that its not working.
Like many people I am on a lot of medication and if I can reduce any of it without compromising my daily functioning or overall health and wellbeing, then I will. Mind you, painkillers come with their own set of side effects and impact so its a matter of making an informed choice.
I hope you find what works for you.
Luv n stuff
Joan:rose:
I have fibro as well as SLE. I was diagnosed with fibro first because of my presenting symptoms but shortly afterwards I was diagnosed with SLE. As a result the fibro diagnosis sort of faded into the background and I guess I thought it was just a misdiagnosis at the time.
However over the years it has become obvious (even to a sceptic like me!) that I have both. My Rheumy at one stage mentioned that she thought fibro was causing a lot of my pain problems and I was surprised because I thought that she had also 'scrapped' the fibro diagnosis. She did do a trigger point test and I nearly hit the roof! I have to say that I have fairly classic trigger point pain and tenderness. Even the spots under the butt cheeks.
At that point she asked me to try Amitriptyline but it didnt agree with me at all and had me awake most of the night instead of helping me sleep. Typical
A year or so later, she asked me to try Lyrica and I did for a while. However I found that it bloated out my stomach horribly. I am a large size anyway and it took a while to figure out that the meds were causing this! I just thought I should keep away from the fridge I decided to stop the Lyrica and the bloating resolved. Sometimes I am tempted to try it again because the overall pain at times is very hard to function with but so far I am managing by taking painkillers as needed. I also take a product called KALMS Sleep to help with the sleeping problems. It works relatively well most nights but I intersperse it with another product now and again if I find that its not working.
Like many people I am on a lot of medication and if I can reduce any of it without compromising my daily functioning or overall health and wellbeing, then I will. Mind you, painkillers come with their own set of side effects and impact so its a matter of making an informed choice.
I hope you find what works for you.
Luv n stuff
Joan:rose:
Hello Jesse, Yes I have both but have to agree with the others who say that 30% is a more realistic figure. I KNOW for sure that Lupus is more of a problem to me than Fibro. but for some others it is the other way around.
Personally I have never heard of a fibro diagnosis without tender points in all four quadrants of the body. You are quite correct that Lupus and Sjogrens could well explain your symptoms.
x Lola
Personally I have never heard of a fibro diagnosis without tender points in all four quadrants of the body. You are quite correct that Lupus and Sjogrens could well explain your symptoms.
x Lola
Well, thank you all. Your responses have been so helpful. Lilly, my story is so much like yours (CRP and ESR always in range, but RA and ANA very high and ANCA used to be too). The doc even mentioned the normal CRP and ESR when going back to the fibro topic, which I also thought he had forgotten about from an earlier mention two years ago. I don't know what the lack of inflammation has to do with fibro but I'll ask next time.
Your rheumy also has the same thoughts as mine on repeating the ANA test. It makes sense to me, the more I think about it.
I've read an earlier version of The Lupus Book but will look into the newest version. I did get a lot of info from the first one.
Joan, your experience is one I expect I would also have and have avoided the fibro drugs offered for that reason. I'll do it for as long as I can and avoid the painkillers too. You're right, they ALL have side effects.
Lola, I'd be interested in knowing how you can tell the lupus is causing more trouble than the fibro. Is it because the lupus drugs helped you? Many people can't tell what's causing which problem and I've only got part of it figured out. I thought I had it all figured out (it's all from either lupus or SS) but that new fibro card the doc threw out has me a bit confused.
Thank you all for taking the time to help me sort this out.
Your rheumy also has the same thoughts as mine on repeating the ANA test. It makes sense to me, the more I think about it.
I've read an earlier version of The Lupus Book but will look into the newest version. I did get a lot of info from the first one.
Joan, your experience is one I expect I would also have and have avoided the fibro drugs offered for that reason. I'll do it for as long as I can and avoid the painkillers too. You're right, they ALL have side effects.
Lola, I'd be interested in knowing how you can tell the lupus is causing more trouble than the fibro. Is it because the lupus drugs helped you? Many people can't tell what's causing which problem and I've only got part of it figured out. I thought I had it all figured out (it's all from either lupus or SS) but that new fibro card the doc threw out has me a bit confused.
Thank you all for taking the time to help me sort this out.
Jesse, Steroids help Lupus but not Fibro. As part of the original search for a diagnosis I was put on a pretty high dose steroid trial for six weeks. This did absolute wonders for me with all the lupus symptoms. The pains I was left with were the fibro ones and they were very little by comparison. I was like a new woman but of course we can't stay on high steroids for ever.
I still think I was lucky to have the chance to get my life back for a few weeks though.
x lola
I still think I was lucky to have the chance to get my life back for a few weeks though.
x lola
Just my uninformed opinion but I wonder about all the overlapping autoimmune diseases with names redolent of researchers and symptoms. It struck me a while ago that as it is difficult to find a "pure blooded" alsoholic nowadays, that is, one who is not also cross addicted to other drugs, so it is difficult to imagine a person who has only "pure blooded" SLE symptoms. Perhaps I have only found peace by saying "I have SLE" but what I really mean is "I have an autoimmune disease that fits the criteria for SLE but borrows liberally from other autoimmune diseases to the extent that I could probably claim membership in half a dozen other autoimmune clubs." Much easier to say "SLE" rather than be completely honest and commit the social sin of over-explaining. As the Bard should have said: "An autoimmune diease by any other name hurts as much."
Hi Jesse888
Yes I was diagnosed with fibro the same time as the lupus - the rheumy prodded me here and there to which I flinched and yelped and after doing this at a number of different points said I was text book fibro - (also had/have the fatigue, and bad sleep - nightmares kind of on a non stop reel - so anyway he perscribed a v low dose of amytriptine (sorry about spelling) and it is a miracle!! It has virtually stopped the nightmares - I only tend to get them now and again when I feel very poorly. So if you do have fibro and are not sleeping properly or getting a lot of anxiety I would suggest amytriptiline!
Yes I was diagnosed with fibro the same time as the lupus - the rheumy prodded me here and there to which I flinched and yelped and after doing this at a number of different points said I was text book fibro - (also had/have the fatigue, and bad sleep - nightmares kind of on a non stop reel - so anyway he perscribed a v low dose of amytriptine (sorry about spelling) and it is a miracle!! It has virtually stopped the nightmares - I only tend to get them now and again when I feel very poorly. So if you do have fibro and are not sleeping properly or getting a lot of anxiety I would suggest amytriptiline!
Lola, I can see how your pattern made it clear for you what's causing which pain. I guess my rheumy is assuming the same, since I have minor left over muscle spasm and pain issues. However, those muscles spasms stopped completely for a long time when the lupus drugs kicked in. Oh well, I'm just grateful my pain minor.
Douglas, your post made me smile and I think you're exactly right, especially that part about "Much easier to say SLE...."
jb1, you're one of the lucky ones to have a clear dx of fibro, though it may not seem that way. It's much easier to treat and deal with a conditon when you're sure what it is. For now, I think I'll stay in my little world of denial as it pertains to fibro and avoid any additional drugs. No anxiety problems (thank goodness) and the TV helps me get back to sleep, so I think I'll keep that routine up for as long as I can.
Douglas, your post made me smile and I think you're exactly right, especially that part about "Much easier to say SLE...."
jb1, you're one of the lucky ones to have a clear dx of fibro, though it may not seem that way. It's much easier to treat and deal with a conditon when you're sure what it is. For now, I think I'll stay in my little world of denial as it pertains to fibro and avoid any additional drugs. No anxiety problems (thank goodness) and the TV helps me get back to sleep, so I think I'll keep that routine up for as long as I can.
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