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    Old 08-18-2007, 04:16 PM   #1
    Angie10
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    Anyone with Fibro and Lupus?

    Hi everyone,

    I was diagnosed with Fibromyalgia by a Rheumatologist over three years ago and then with Celiac Disease two years ago. As with the way life is, my fibro has been better at times and really bad at others. Last December I had to quit my job to to conflicts with my manager and decided to wait and decide what I wanted to do with my life.

    Surprise, the insomnia became real bad and the extreme fatigue and pain set in. By February I started getting bad abdominal pain and over two months of agony it was finally determined that my gallbladder was no longer funtioning. Right before the determination my gastroenterologist ran some more bloodwork and it came back that I had a high ANA, high sed rate(as always), positive Anti-Ro/SSA and anti-La/SSB, postive Rheumatoid Factor, high gammaglobulin, etc.. My PCP(also a rheumatologist) ran more tests and looked at other symptoms (hair thinning, mouth ulcers, rash on face, extreme fatigue and joint pain) and diagnosed me with Lupus in May shortly after my gallbladder surgery.

    Last week I decided to switch to a Rheumie at a teaching hospital and she said that all the joint pain I was experiencing was from the Fibro and that she didn't think I had Lupus. She said because my joints weren't swollen and the rash on my face was Rosacea, etc. that if I did have it, the lupus was mild. She also though I had Sjogrens disease and is running more tests.

    I've decided to seek out another Rheumie because the one that I just saw had an aweful bedside manner and made me feel like I was wasting her time. Has anyone run in to these problems before where Lupus may have been also considered? Thank you for your input!

     
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    Old 08-18-2007, 05:30 PM   #2
    goldenwings
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    Smile Re: Anyone with Fibro and Lupus?

    Hi there angie10,

    I know this is the fibro forum, but as you have asked for information about a couple of things, I think I will be ok to speak of the questions you ask about lupus too.

    I was diagnosed with 'secondary' fibro about 2 1/2 years ago. I noticed an entirely different painful sensation in my head, neck and shoulders mainly and realised this was very different from the problems I have with my SLE which I have had for 30+ years. Thing is the pain I get from my SLE differs tremendously from the problems I have with fibro. The tenderness of fibro is no less uncomfortable, it is just that the term 'secondary' is given to any problems that occur and are diagnosed after your initial 'main' condition. I know of countless people with primary fibro.

    Your fibro is so very painful obviously, but some of the things you mention don't come as a result of having fibro. By this I mean the blood tests results you speak of. Fibro cannot be diagnosed with a blood test, so any problems with the results of blood tests as you speak of have to be looked into as something else. May I say, obviously not as a doctor but as a person with SLE, that I think your symptoms and blood tests results don't seem to be 'mild', whether it is lupus, arthritis or any other automimmune illness. I agree that maybe you should change your rheumatologist and fingers crossed you will get someone who is knowledgeable about lupus, and give you the anawers you so need.

    I say this because even though, as you said, at the time of your examination your joints weren't swollen, it doesn't mean that there isn't a problem with them. Most patients with lupus of any type, and you know there are a few, have varying symptoms from day to day. Blood test results also change from month to month, even from week to week. So any doctor worth their salt needs to take all things into consideration.

    Also has it been proven that your facial rash is rosacea ? If not, push for further testing. Again with Sjogrens, this can occur whether or not you have lupus, but seems odd that they are now testing you for it considering that your blood tests are indicative of something apart from fibro going on.

    You know there is a lupus forum here don't you ? Any questions about it can be answered there. I am a member of that forum too and I will help you as much as I can.

    Take care.

    goldenwings
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    Last edited by goldenwings; 08-18-2007 at 05:37 PM. Reason: misspelling

     
    Old 08-19-2007, 02:21 PM   #3
    Angie10
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    Re: Anyone with Fibro and Lupus?

    Hi Goldenwings,


    I actually have posted on the Lupus boards before but was not able to find anyone with Fibromyalgia, as well. Now that I'm not sure I have Lupus, I think not knowing is what is the hardest. I also have a hard time starting with any new physician. I don't know how many doctors I've had that say Fibromyalgia doesn't exist or all my problems were probably attributed it.

    Then to be told I have Lupus by one doctor and not by another.... I think because so many of the symptoms of Fibro can mimick Lupus and vise versa, it is hard to say. When my skin burns to the touch, I know it is the Fibro. When my ankles, knees, and fingers ache and hurt, I thought it was the Lupus because that has been something new over the past six months. Who knows?

    Thank you for sharing and best wishes to you!!

     
    Old 08-19-2007, 06:07 PM   #4
    jenilee70
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    Re: Anyone with Fibro and Lupus?

    Quote:
    Originally Posted by Angie10 View Post
    Now that I'm not sure I have Lupus, I think not knowing is what is the hardest. I also have a hard time starting with any new physician. I don't know how many doctors I've had that say Fibromyalgia doesn't exist or all my problems were probably attributed it.

    Then to be told I have Lupus by one doctor and not by another.... I think because so many of the symptoms of Fibro can mimick Lupus and vise versa, it is hard to say.
    Hi Angie,

    I understand at least something you're going through, since I'm kind of in the same boat. Now, I'm not officially diagnosed with anything, and I agree that not knowing is pretty hard.

    Two doctors, my primary care doctor and another family physician, have said that I have fibromyalgia and my physical therapist also. However, a rheumatologist I saw last year said that it wasn't fibro.

    He ran all kinds of tests and I had positive ANA, high sed rate, positive anti SSA and SSB. However, the Rheumatoid factor was negative, as well as the Anti ds-DNA. So, he has gone from possible lupus to possible RA (which he later ruled out) to possible osteoarthritis and the end result was that I have no diagnosis whatsoever.

    I think it's a good idea for you to see another rheumy. I'm going to see another rheumatologist to get a second opinion. I know these diseases are hard to diagnose sometimes and I wish you the best of luck.

     
    Old 08-20-2007, 11:48 AM   #5
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    Re: Anyone with Fibro and Lupus?

    I have a similar situation.
    Was suffering with pain for years and my primary sent me to a rheumi. Then for 2 years I had blood work done every six months. My test results came back different everytime. My physical symptoms do not match lupus but my blood work does.
    I was freaking out. I soon became tired of the wait and see game with the blood tests. I started doing more research. I found these boards and there has been alot of helpful information.
    Everyone on the lupus site was talking about "The Lupus Book" by Daniel Wallace. I highly recommend it. Even if you don't have lupus it will help you sort through things and help when talking to the doctors. It talks about everything related to lupus.
    I also changed doctors and went to Loyola in Chicago to see if I could get any answers.
    Currently, they still have not classified what I "have". They are treating me as if it is fibro with the possibility to develop into scleroderma. The wait and see game still continues.
    It is very frustrating to have syptoms that cross over many diseases and all you can do wait until something specific happens in order to get the diagnosis.

     
    Old 08-20-2007, 05:05 PM   #6
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    Re: Anyone with Fibro and Lupus?

    Hi gunner00,

    Thank you for sharing. I actually do have Dr. Wallace's book and it has been very helpful. I just began to doubt everything I read when the new Rheumie came back with more questions than answers.

    I'm sorry to hear you are waiting to see if you will develop scleroderma. I actually visited a website that mentioned undifferentiated connective tissue disease. Summed up - a person may have positive tests but don't match all the criteria, and if nothing proceeds after five years, it may never develop into something more such as Lupus, Scleroderma, or RA.

    I think that is what we all hope for. Dealing with the Fibro has been hard enough, but it seems that once you have one autoimmune disease, it is not uncommon to develop others.

    I wish you the best and hope that nothing develops further for you. Take care!

     
    Old 08-20-2007, 06:32 PM   #7
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    Re: Anyone with Fibro and Lupus?

    Hi - I have a primary Dx of Fibromyalgia from my Rhuemie and in her words "have FM and are symptomatic of Lupus." (She was very nice when she told me that she had never seen anyone with All of the FM tender points and symptoms. (If you're gonna have something - then have it all, I say!) I have been this way for more than 10 years. My Fibro symptoms are with me every day, with some days that are very bad; but sometimes things just flare up and get much worse and I go in for my Rhuemie to check me out. As the others have said - my test results just depend on when the labs are done. There are times that all of my results fall with in "normal" ranges and/or are negative; and then others where there is no doubt I'm having more that the Fibro. Now my labs are pretty good, but I am on Plaquenil for the joints in my hands and feet. At this point - after 10 years, my Rheumie told me not to worry about the actual Dx on the chart - but to just work with her to treat my symptoms (mostly what you've listed) and increase the quality of my life. So I've stopped worrying whether or not it's really Lupus and if it's on my chart that way -- As long as she is working with me to address and treat the symptoms, I'm okay with how she treats me! So find that doctor that you can talk to and that listens to you, in addition to the labwork!! That's the person who will be able to help you in the long run! Best of luck!

     
    Old 08-21-2007, 05:40 PM   #8
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    Re: Anyone with Fibro and Lupus?

    Before my rheumatologist dx'd me with lupus 4 months ago i thought I had fibro. For the last 2 years i have been feeling very fatigued and achy but my tests kept coming back negitive. Finally this last test showed a high ANA plus a positive for the parvo virus at one time,and I was very deficiant in vit D. Before she made a diagnosis she had me take what she called the "prednisone challenge" She said that if it was something autoimmune that the prednisone would take most of my pain away. If it was strictly fibro it probably wouldn't do much for me. Well after only 3 days on the prednisone my pain was totally gone. Since my RA factor was negitive and I had some of the symptoms of lupus ( achyness ,fatigue ,a nose sore that never heals ,rash from sun exposure ,although not on my face) She said. "I'm going to write down "connective tissue disorder" on the chart ,but treat it as lupus. I started on plaquinil right away and I have to tell you it was a miracle for me. I feel so much better. Maybe you could ask the rheumatologist to try you on prednisone to see how you feel on it. Also the plaquinil.It has very few side effects if any. also test for Vit D deficiancy. I'm taking an RX of50,000iu's twice a week. I don't know if any of this will help. I'm still pretty new to all of this and still learning myself. I can only relate my own experience and I know everyone manifests this stuff differently.
    Good luck finding a rheumy that you trust.
    Kathryn

     
    Old 08-21-2007, 08:38 PM   #9
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    Re: Anyone with Fibro and Lupus?

    Hi Angie,

    I too do not have an official diagnosis yet either. I visted the lupus board as well. I am in a simular situation. I have all those "trigger" points too. I have been told by many Drs I have Fibro, I have Jr. Arthritis etc. I have been told
    a few years ago that Fibro was a "garbage can dx" meaning when they do not know what to tell you thats what they call it, . Now I find out its recognized
    condition by Rheumy's everywhere.. If you find any info on a link between Fibro and Lupus I would be curious to know what is found out. If I come across anything I'll definatley let all of you know, because I am so tired of messing around with this I just want to educate myself, collect as many medical records as I can to arm myself with when I go to the next physician consultation.

    I am just like you so frustrated being dx with one condition and have another dr dismiss it as "nothing" or somthing minor. It is so frustrating. It needs to be addressed by the medical profession that there are so many people out there like us that are left spinning in the wind with no difinitive answers and no proper medical care because we can 't get any of these Drs. to agree.
    Good luck to you and I feel your pain. I have 4 kids myself. I have lived taking pain medication to function. This is horrible. But I am glad I found this forum because I know I am not alone, and neither are you Angie

     
    Old 08-21-2007, 10:14 PM   #10
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    Re: Anyone with Fibro and Lupus?

    hello i was diagnoised with lupus about 12 yrs ago and fibro about 10 yrs ago.i have heard that it is very rare to have both of these.it is very painful to have both of them...marie

     
    Old 08-22-2007, 08:06 AM   #11
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    Smile Re: Anyone with Fibro and Lupus?

    Hi there,

    I hope that the information below goes some way to making things clearer on the questions raised about links between lupus and fibro. I am a patient with SLE and have done endless research on the condition as I wish to help others if I can. I am not a medical doctor and give the information below in layman's terms in the hope that others will find it easier to grasp. I have looked into this and although the words below are my own the information I have given is from reading up on it and learning more from a totally credible source, a leading expert in the USA on lupus and fibro.

    There is no what you might call 'link' between lupus and fibro in the accepted sense of the word. Thing is many lupus patients have a diagnosis of fibro as a secondary condition, but also many people who have fibro as a primary condition, don't have lupus or any other illnesses. With fibro, as you know, there are specific 'trigger points' that are identified and enable a diagnosis to be made. With lupus there are so many diferent symptoms with no pattern to them. Also there is more than one type of lupus.

    There are other diferences. Lupus can be crippling - dependent on the type the patient has. Fibro has a non-progressive nature but even though the pain and stiffness can increase there is no deterioration in joints. If a fibro patient has arthritis or any other rheumatic condition, then this of course will add to the pain and yes there may be joint problems. Fibro doesn't attack internal organs and so on, lupus does. Fibro is not diagnosed as a result of blood tests, lupus diagnosis comes with - amongst other things - blood test results.

    Medications differ too. Fibro can be/is treated with NSAID's, muscle relaxants, anti-depressants which help to encourage restful sleep, which in turn will help the body cope better during the day. Other things can help too, massage and other complementary therapies for instance. As indeed they can with some lupus patients

    Lupus is treated with diferent types of medicatiuons to those used for fibro - the most commonly used ones being antimalarials, immune suppressants and steroids - referred to as disease modifying drugs.

    I hope this can go some way to making things a little clearer for you. Yes, you can have lupus and fibro at the same time, but they are entirely different medical conditions.

    If I can help further let me know. Take care.

    goldenwings
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    Last edited by goldenwings; 08-23-2007 at 01:09 PM. Reason: repeated paragraph

     
    Old 08-23-2007, 12:33 PM   #12
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    Re: Anyone with Fibro and Lupus?

    Thank you, everyone!

    Your imput has been very helpful. Thank you for sharing your stories and your knowledge. I did some more reading from one of Dr. Wallace's books about Lupus and he said that one of the ways to determine that a patient has Lupus and not just Fibromyalgia is to perform a bone density scan.

    When I meet with my new rheumatologist (hopefully 3x's is a charm) in October, I will ask about this. The whole connective tissue disease dx. makes sense, though when someone with Fibro comes back with positive tests when normally they would not. I just want to know how I should deal with this. Should I stay on the Plaquenil? If I tried steroids I'm told that would aggravate the fibro, so it is hard not knowing if I'm going in the right direction. However, after being on the plaquenil for almost four months now, I've noticed that I'm having more days where my joints are killing me like before. Hard to say...

    Fibro has always been such a mystery to me. Sometimes I think that it is all my fault that I feel lousy because of my body's reaction to pain and stress. I think I've always downplayed it as something that is not serious because it is not degenerative and is not life threatening. However, I know that I don't have a magic switch that can make my body perceive pain differently. I also know that it is a real issue and just because some doctors don't believe it exists or they want to blame everything on it, doesn't mean I should downplay my health and not take care of myself better.

    Thank you, again, for sharing, and I wish you all the best with each day!

     
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