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Fibro, then Lupus (SLE)

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Posted 9/26/2007 6:07 PM (GMT 0)
Hi Everyone,

I'm just wondering how many folks first were diagnosed with fibromyalgia, then some years later developed lupus (SLE). I read one article written by an M.D. who said that it's RARE to have fibro, then lupus. But this was just one article and perhaps his opinion. I have noticed on this board that quite a few people have both fibro and lupus.

I've been posting here lately because my doctor suspects I have SLE; I was dx'd w/ fibro in 2001 by a rheumy. I suppose I could have both conditions, but the past few days I'm wondering if the fibro diagnosis was possibly wrong -- just a possibility, not a probability.

I would welcome any comments or opinions, since the folks on this board are exceptionally knowledgeable.

Take good care everyone, and I hope that you're managing OK right now.
Posted 9/26/2007 6:18 PM (GMT 0)
Carrie, I had the same experience. I was seeing a rheumy and telling him I thought I had lupus but at the time I didn't have any positive labs. He examined me and diagnosed me after he identified all the tender points on my body. A year or two later my labs changed and I was diagnosed with lupus. What that means, I don't know. I do know that doctors are very reluctant to diagnose SLE. If your rheumy suspects that you have it, is he treating you for it? I hope you're doing ok.
Posted 9/26/2007 6:42 PM (GMT 0)
Hi Carrie,

 

I'm the opposite.  I was dianosed with lupus first, and then fibro about 8 months later.  Both mimick each other a lot so it's probably a bit of a crap shoot as to what gets diagnosed first.  My guess is that most of us have both at the same time. But one presents it's symptoms more than the other so that one gets the initial diagnosis.  Just a theory!

 

Ginny

Posted 9/26/2007 8:29 PM (GMT 0)
From what I know, both fibro and lupus can cause the same symptoms w/similar tender body points. It seems that fibro reacts poorly to prednisone, but lupus reacts well to prednisone. I haven't ever read anything else that sounds like it really differs substantially between the two... Just my thought,
Posted 9/26/2007 8:47 PM (GMT 0)
Lynnwood,

That's a very interesting point about prednisone. Perhaps it's because fibro doesn't cause internal inflammation or things like tissue damage that happens with lupus?
Posted 9/26/2007 10:53 PM (GMT 0)
Carrie,
I was diagnosed in the 90's with FMS. For years I thought I had Lupus but I only had 3 of the 11 symptoms for giving a diagnosis of Lupus and until 3 years ago I never had an elevated ANA. I've had rheumy's tell me it's all in your head, it's fibromyalgia (when I never had the tender points), oh and here's a good one ... one rheumy actually had the nerve to tell me that my ANA was elevated because I was elderly! I was 48 when I saw him.

Three weeks ago I was diagnosed with SLE. My ANA is the highest it's ever been at 2,309. They're quite concerned because it's so high and they feel that I might have organ involvement; so they've ordered another bunch of tests and I find out on the 5th.

My half sister also has lupus. She was diagnosed in the 70's with lupus and sometime in the 90's diagnosed with fibromyalgia. It's very common for someone to have both. The one big difference with fibromyalgia and lupus is that lupus responds to steroids and fibromyalgia does not.

The American Rheumatology Association started to recognize fibromyalgia as an autoimmune disease. I do believe that in years to come they are going to either figure out that fibro is early stages of lupus or it's another autoimmune disease in itself.

I hope this helps you!
Posted 9/27/2007 1:22 AM (GMT 0)
Hello Everyone :)

I0 years ago I was dx with SLE and about 4 to 6 months later was dx with Fibromyalgia (had never even heard of this "disease?") before then.

Gidget, I know about high elevated ANA. Mine always comes back showing "greater than 2,500".....apparently they stopped counting after they reached that number, so how hight it actually is I have no idea.

Gentle hugs to everyone
Posted 9/27/2007 1:43 AM (GMT 0)
Welcome to the forum Teryl-Oz . . . Sorry you are dealing with this dread disease. Thanks for your input too. I just wanted to welcome you to the forum. Carrie . . . I it like Lynwood said about prednisone helping lupus and not fibro . . . but others with fibro have also said that the pred actually makes their fibro worse. The other differentiating factor seems to be that people with fibro can't stand to be touched, even their skin hurts. I hope you get some more responses to your topic. Blessings!
Posted 9/27/2007 2:17 AM (GMT 0)
Hi Carrie, I was diagnosed with fibro first by a totally incompetent rheumatologist who didn't even do a pressure point test or anything, just wanted me out of the office, no bloodwork either, just walked up and said "you have fibro, here" and handed me a script for anti-depressants. My dx with ai disease came two years later when I finally got the courage to see another rheumatologist, and this one was good. Then last year I saw a rheumatologist when I was having lymph node problems per my stepmother's request and he was a total idiot and he said he didn't care what any of my labs said, I didn't have autoimmune disease, just fibro and needed to be on anti-depressants. He did no exam or bloodwork and refused to look at my labs.

I think that I do have fibro given my sleep problems and severe neck and arm pain and everything else. At least I have some kind of chronic pain condition that comes from untreated pain and lack of sleep. My pain does go away with prednisone, everything that is wrong with me except my pigment problems goes away with pred.

I think that for many sexist male doctors, fibro is a way to get a bothersome complaining woman on antidepressants instead of doing any work and really finding out what is wrong. Also, it is a way to treat people in pain they think are hypochondriacs without giving them pain medicine. This is bad for the patients who are misdiagnosed, which are usually middle aged women, and bad for people who really have fibro.

Fibro is supposed to be a last case diagnosis after tests for everything else are done because other diseases can cause pain in the pressure points like lynnwood said and the others have said. For too many doctors it is a first case diagnosis and I would definitely want bloodwork done before accepting it as a final dx, which I did for two years then got my act together to try again. If you have any doubt that there might be other causes for your pain (I have severe spinal and cervical osteoarthritis, scoliois, herniated disks all over, spinal compression all over) and have pain in arms and legs and pretty much all over and there is no way they can differentiate my back pain from fibro. I do believe that I do have fibro according to the old definition of condition arising from being in pain and not getting enough sleep, and I also have chronic fatigue, but how they can tell it from lupus fatigue I dont know, but only a few of my pressure points hurt like they should. I'm much sorer in other places.

I'm skeptical when a doc does no bloodwork walks up to you, does a pressure point test and sends you away with antidepressants, regardless of your other conditions, or with this as a sole diagnosis when you are sure there is something else wrong, or you have a lot of interrelated ai problems. My rheumie doesn't treat me for fibro or cfid, how could he ever tell with all the other stuff wrong? When I was treated for it, I got really sick because my real problems were not being treated and no one thought I was sick, just saw I was on antidepressants and thought I was nuts or a hypochondriac. I got very very sick a couple of times because the antidepressants masked the pain and symptoms. So I think its dangerous not to get checked out for the other stuff before settling back with that dx.

I hope this helps some, sorry it sounds so negative, but this stuff does happen to women sometimes and it would be bad to think you are having fibro and be sick with something that needed another type of treatment. Don't get me wrong, pain is miserable and fibro is awful, if it is what I have. I hope that you get good diagnosis and treatment and that they are very thorough in diagnosing you, that's all. Well, take care and I will be sending hopes that you get good care your way.
Posted 9/29/2007 9:00 PM (GMT 0)
Hi Marji,

You don't sound negative to me, just realistic, and I agree with what you have said. Before my fibro dx, I was having fatigue, digestive probs, insomnia, and back pain. The family doctor said that it's just arthritis, and after 3 wks on Celebrex, I'd be "as good as new." Didn't happen! So I changed doctors, and about a year later was dx'd w/ fibro by a rheumy. He asked me "Why are you sweating?" I told him I had been having low-grade fevers for quite some time, after suffering from FOUR severe flus in the previous year. My temp measured 100 F on that visit. That was seven years ago, and the fevers worsened in late 2005. I know what you mean about a doctor doing a quick pressure point test, and sending you away with anti-depressants. I think if they're not sure what's wrong, they just want you to shut up and go away. The infectious disease specialist I saw in Nov/06 said he thinks autoimmune vs infection or cancer and said "The fevers are just part of you." He also mentioned that I have depression. I said, "Yes, but depression doesn't cause fevers." That pretty much shut him up. I told my family doctor that seeing the ID specialist was a total waste of time, and that he thought/hoped I was stupid enough to buy his statement "The fevers are just part of you."

I'm sorry that you have had such a rough time of it, what with battling so many medical conditions. You see, you weren't negative at all; I think it's normal to become a bit bitter and frustrated at times when we're sick and waiting for a proper dx and treatment. I wish you a pain-free, peaceful day.
Posted 9/29/2007 9:34 PM (GMT 0)
Gidget,  That's too funny that you were told your ANA was elevated because you're elderly -- at 48 yrs old!  That's even funnier than the ID specialist telling me that the fevers are just part of me.  It sounds like it took quite a long time to get your dx of lupus.  It must be scary having possible organ involvement.  Also, I read that up to 1/3 of folks w/ lupus have a negative ANA (lupus resources on H/W).  I really hope that you start to feel better once you get treatment.

Ginny,  I had to laugh when you said "a bit of a crap shoot" because I use that term sometimes.  And Ginny, I hope you're doing much better these days.  You have been through so much.

PattyLatty,  I can understand why doctors are reluctant to diagnose lupus.  Fibromyalgia isn't a disease, and it's not progressive, whereas lupus is a disease that can cause tissue damage, organ damage, etc.  It's actually my family doctor who suspects I have lupus.  He has dx'd me correctly in the past:  He dx'd fibro, and it was confirmed by the rheumy (although he wrote to the rheumy that I had signs & symptoms that were atypical of fibro); He dx'd Essential Tremor (right hand tremor), and it was confirmed by a neurologist; and he dx'd Interstitial Cystitis and it was confirmed by a urologist (diagnostic surgery).  I've been seeing him for eight years, and I've been getting the feeling that he has known for awhile that something else is definitely wrong.  I'm still waiting for the blood work to come back.

In 2006, I tested positive for the anti-smooth muscle antibody and smooth muscle titer, which I read has something to do with differentiating between autoimmune hepatitis and SLE.  I'm quite confused about it all right now.

I'd like to thank each and everyone of you who has taken the time to share with me, and I sincerely hope you're all doing OK right now.  This forum has been extremely helpful to me!

Posted 10/6/2007 1:40 AM (GMT 0)
Hi,

I do not have medicade and I recently went to the hospital for some pains I was having. The doctor said that it is possible for Lupus from some of the tests done but he could not tell me nothing exactly.. My fever was up some too! Anyway he referred me to a Rheumatologist and I was unable to go because of no insurance. I have been dealing with this pain forever and just want to get better. My symptoms are swollen ankles and painful feet. When i stand my feet begin to hurt so bad that I cry after standing a while, even standing in line at Walmart I am in pain. After this was all I had then out of know where I started having back pain and could not get out of bed my back hurt so bad. When I finally got out of bed, I could barely move, it felt like my back was broken/ froze temporarily and I was tipy toeing trying to move it was sooo bad and then finally it went back to normal.. A few months with very little back pain after taht and then it comes back strong again. My feet burn throb and hurt so bad also and it is continual though but I continue to get new symptomes with this.. First it is my feet, ankles and then my back what next... I used to be healthy and now I am feeling so bad. I also got anemia and then I also get flushed a lot like my blood pressure goes up.. I hate feeling this way and I am very fatigue also.. Can this be a sign of Lupus?? The doctor in the hospital thinks so but he did nothing but he prescribed anti-inflamitory medications and that is it and told me I need a Rheumatologist. After this I have a few other symptoms too like a wierd pinching pain that comed and goes like a tightening in my wrists or arms and it is like a shocking nerve type pain tinging in my bones which is so wierd but that comes and goes out of absolutely no where.
Posted 10/6/2007 1:45 AM (GMT 0)
Actually to describe the pain it is like a twisting in my bones of my arm, etc.. and finally after like 15 secs it lets up. That is the most recent symptom that I have experienced..

BUT it is so wierd how all of these new symptoms keep coming up out of no where..

The feet pain has been for 2 years, the back pain has been for like a year but happens only sometimes it will tighten and just freeze and then it hurts so bad. I have other symptoms too like feeling just really bad, tired etc.. I just want to feel better.. Lupus runs in the family so does Fibromayalgia.. What are you guys symptoms??
Posted 10/6/2007 1:58 AM (GMT 0)
Hi Fancy . . . welcome to the forum. Sorry you are having so much trouble. Lupus can be difficult to dx and it may take many months or even years to finally figure it out. But the docs prescribing an anti-inflam med is the firs thing that should happen for the inflammation causing lots of your problems. There are some links at the end of my signature that may be helpful. This disease presents differently in each of us and, unless there are some really straightforward labs, it just takes a while for the rheumy to put everything together. You really do want to see a rheumy if you suspect lupus. Lots of us have dx, symptoms and meds in our signatures if that is helpful. . . but again lupus comes in all shapes and sizes and acts very differently in each patient. You've found a great place to ask questions and get information. I'm glad you found us. Blessings!
Posted 10/6/2007 6:18 PM (GMT 0)
Hi Fancy and welcome. Unfortunately, this disease is very frustrating just because of the very things you describe. It's like it just "wakes up" one day and suddenly bad things start happening. My symptoms were not regular at first. I would go for a couple of months at a time with no problems. Even now, new stuff comes to life whenever it feels like it. That's why it can take so long to get a correct diagnosis. No one can tell you just from the symptoms you listed that you have lupus, but it does appear you need to see a rheumy though. I hope you can get the help you need. Take care,
Posted 10/10/2007 7:35 PM (GMT 0)
I was tested for fibro in the beginning of seeing a rheumy for the first time and it was ruled out because I didn't have the right number of pressure points. I do get weird symptoms that are similar to fibro though like skin sensitive to the touch (feels bruised) and muscle pain that happens a lot. I see that a lot of people have secondary Fibro to their Lupus so I would say its possible that your fibro peaked its ugly head first. Lupus tests can take a long time to show up abnormalities and for some, they come long after the symptoms start showing.
Posted 10/10/2007 7:56 PM (GMT 0)

 I was dx'd with Lupus in 1990, Fibro and RA in 1994. I had symptoms of lupus for 13 years before the dx. 

 If I take high doses of prednisone the fibro flares bad. The lower doses aren't too bad.  If you have both lupus and fibro you will have to find your balance with the pred. If I take over 30mgs of pred, I will start having deep muscle burning pain. If I don't take pred or stay on a very low dose I have joint pain,swelling and severe fatigue all the time.

  Good luck with this and please keep us updated. You will be in my thoughts and prayers.

                                                            Babs

Posted 10/11/2007 4:45 PM (GMT 0)
Hello,

 

I was diagnosed with fibro one year before I was diagnosed with Lupus. I have had all the same symptoms for 20 years but was never diagnosed. Prednisone does seem to help the fibro and the Lupus.

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