Fibro, then Lupus (SLE)

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.

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_~Carrie

_{Fibromalgia (2001); Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed autoimmune disease}

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

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I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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?

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_~Carrie

_{Fibromalgia (2001); Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed autoimmune disease}

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

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.

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Love, Marji

_{--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)}

_{Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy}

_{Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments}

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!

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_~Carrie

_{Fibromalgia (2001); Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed autoimmune disease}

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??

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,

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Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

 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

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