View Full Version : Lupus or Fibromyalgia?????
08-30-2009, 12:21 AM
Well, I finally went to a Rheumotologist after being treated for lupus for the past 2 1/2 years. After telling the Rheumotologist all my symptons, he says he's not convinced I have Lupus. He said I have all the symptoms of Fibromyalgia....ok, so back to square one...this is really frustrating. After two years of the doctors increasing my meds...with no improvement. Now this doctor is slowly taking me off the imuran. I have to admit it would be nice to get off all the meds...but he told me that there is basically there is nothing they can do for fibromyalgia either. So WHAT DO I HAVE>>>> I'm so frustrated. I go back in October.:hissyfit:
08-30-2009, 01:32 AM
I was told by my rheumy that Fibro does not respond to the Lupus meds so that may explain the no improvement part. She also mentioned that exercise was important with fibro.
That's my 2cents worth
08-30-2009, 06:26 AM
AWWWW, im so sorry Maryjane that this has happened to you:no: Drs ARENT GOD and they DONT KNOW EVERYTHING, so who knows if he even KNOWS what he is saying to YOU. A good example is my rheumy,he told me my last visit that HE DOESNT KNOW anything about Fibro! WOW, Carl and i looked at each other in shock! Rheumys are SUPPOSED to KNOW about IT! Its a problem THEY specialize in! Fibromyalgia is one of those "piggyback" illnesses that follow Lupus. What you need to find out with your own research(because the dr WONT put in the extra time to do it thats for sure) is EXACTLY what ALL of your symtoms are. BECAUSE, fibro DOESNT have ALL of the symptoms that lupus has. You should write down EVERY symptom YOU have experienced (no matter how small OR big) in the past 2 or so yrs. Then compare YOUR list to the list of symptoms for lupus and fibro. YOU are going to have to do MOST of the footwork unfortunately,MOST drs DONT want to (or CANT because of their patient OVERLOAD), my husband and i GOT US TO where we are by doing MOST of the work and educating ourselves through the past 3 plus yrs. When we left it all in the drs hands we got NOWHERE FAST and i was getting more and more symtoms by the day. And to top it all off, my old GP was writing in my charts "Hypo" and "has high anxiety", "needs to rest more". HUH???? Are you kidding me!:shocked: If she was actaully LISTENING to us, i WAS RESTING MORE than i EVER have in my life and THATS exactly what was concerning us (along with EVERY other symptom) because i have ALWAYS been a VERY ACTIVE person who WORKED HARD in ALL aspects of my life! And to all of a sudden have NO ENERGY and feeling BAD all over, well, it was a shock to myself as well as all of my loved ones who KNOW me.
Please be your own advocate in this hun,( MORE than EVER right now) to get what you NEED and DESERVE from a GOOD dr. GOOD LUCK! XXXXX
08-30-2009, 01:46 PM
That's harsh! There seem to be a lot of rheumys like that in the world, "Its not lupus, is fibromyalgia, so we're going to take back the diagnosis after you've been treated for lupus for a few years". If this is your first rheumy, maybe go to another for a second opinion?
Lucky7's right about symptom tracking. A few years ago when I was still floating around between doctors trying to figure out what I had, I kept this symptom journal (still have it). It's a good idea for when you're going to new doctors, 'cause in my experience they really just can't be bothered to investigate things for themselves.
I'm keeping my fingers crossed that you get this all sorted out. Having a diagnosis retracted is frustrating to the highest degree. But we're all here to support you. <3
08-30-2009, 03:11 PM
I can relate to your frustration, Mary Jane. My PCP did not agree with my Rheumy's diagnosis of SLE and Sjogren's Syndrome although my labs were positive and I had symptoms of both..
I would seek a second opinion. I see Nancy Carteron in SF. Yes, it's a 2.5 to 3 hour drive from Sactown, but well worth it as I only see her a handful of times per year. Although she will bill your insurance, she's not contracted with any insurance companies, so the out of pocket is a bit spendy. Again, she's very knowledgeable and thorough. I have an incredible amount of respect for her. Also, she encourages holistic treatment as well as conventional meds/treatment.
My husband's cousin was diagnosed with SLE and fibro several years ago and was on some heavy duty meds. She is now in remission. I find it interesting that since the SLE remission, her fibro symptoms have all but disappeared?????
Anyway, since it was your first consult with a rheumy, I would get that second opinion, but that's me. Are your labs abnormal?
08-30-2009, 03:12 PM
hi mary jane.
so glad you are back, but i am sorry you are so frustrated. I am not surprised by your drs. response to fibro....my first rheumy told me that he did not "recognize" fibromyalgia....i walked out and never returned....i looked until i found a rheumy that did "recognize" fibro, and i have been with her every since.
also, there are some meds that people have tried and got relief from. I tried lyrica and cymbalta....neither of which worked for me.....
so, find another rheumy....fibro is a real thing and it is extremely painful. there are drs. out there who will help you.
08-30-2009, 04:38 PM
My last Rheumy said poss "skin Lupus and Fibro"...lol I have more physical symtoms than skin Lupus would present with.(my GP says Lupus) I have been to 3 Rheum's and gotten 3 different opinions. I have another appt in Oct with a new Rheum..my last shot in Jersey..if he too is a half wit, it's into NYC for a 'real' doctor. So frustrating:hissyfit:
08-30-2009, 11:14 PM
Thanks everyone for your thoughts and input. I've been reading about fibro and I definitely has most if not all the symptoms...even more than the lupus symptoms. I'm wondering if I have both. My blood tests have never been a real positive...so I think he is also looking at that. The one thing that does puzzle me, is that when I go into a flare, I run a low grade fever, and get a rash on my thigh that spreads across my buttocks and to my other thigh. I'm not sure that is a symptom of fibro. I dont get the butterfly rash though. However, lately, I feel as if I'm in a constant flare, my whole body aches from head to toe, and the smallest tasks exhaust me. I just want to know what I have and be able to treat it with the least amount of medication. I feel like I have a pharmacy in my cabinet right now. :wacko:
08-31-2009, 06:16 AM
hi mary jane.
yes, most definitely you can have both. I was diagnosed with fibro in 1996, even though my ana count always came back positive, i did not have enough criteria for a lupus diagnosis until 2008....
i understand about the body aching....sometimes i thing my fibro is causing more pain than the lupus....and sometimes the boundaries are so blurred, that i can't tell which one is acting up....i also think that the fibro pain sometimes sends me into a lupus flare.
08-31-2009, 07:06 AM
Oh im sorry to read this.Like you ive had the lupus label taken off me due to bloods coming back negative.My rheumi said it must be M.E Chronic fatigue syndrome.Then i swelled,it was my gp who diagnosed me with fibro a few weeks ago,not the rheumi.I have too many symptoms that for me do say ive got LUpus.I hope you get proper help soon.So very unfair on you.I'll be thinking of you.
08-31-2009, 08:35 AM
My pcp feels sure I have lupus, sjogren's, and FM...but no specialist has agreed with her yet. The 3 rheumy's I've seen have diagnosed me with UCTD, then changed to MCTD, and lastly hereditary angioedema is the cause for all of my woes. An immunologist I saw recently thinks I have something autoimmune evolving and is working on figuring out what it is. It's the first time I feel like we're getting somewhere. I'm giving up on my hunt for another rheumy.
Has anyone taken a biopsy of your rashes? My pcp wants me to visit her the next time I break out, as long as it's not on my face, so she can biopsy.
The rashes are what helped me find out something autoimmune was going on. I was covered from head to toe in a rash that wouldn't go away after two weeks. The worst rash I've ever had. It led the pcp to wonder if something systemic was going on, labs were done, and it all pointed to Lupus and sjogren's.
Sometimes I only break out on my fanny, sometimes on my legs only. It's like it has a life of its own and wherever I'm warmest the rash is of course worse. But sometimes it's just worse with no cause. Most of the time it involves the trunk of my body at the start and may or may not get worse.
I've been breaking out on my face and it looks like the malar rash every single time. But the rheumy I showed it to gave it no regard at all and kept focusing on the lab work insisting that she thinks it's hereditary angioedema. Which it can do this also, but the immuno I'm seeing now says she doesn't think so and she knows more about that than the rheumy so...
I have to say I'm very impressed with the immunologist I recently saw. My pcp suggested I stay with the immuno and let her find my dx. I'm feeling that's the way to go for me. I've seen 3 rheumatologists and after one visit with the immuno I feel like I'm closer to a dx than I have been with the 3 rheumys.
08-31-2009, 08:28 PM
Well I had a really bad flare today. The rash came on my thigh and buttocks, and I had 102.3 temp. Not to mention, I have pain throughout my body. I went to my pcp today, and cried like a baby. He called the rheumy I went to. Apparently the rheumy thought the rash I was talking about was like sorisis or something like that. My pcp really wants him to see my rash when it is really inflamed. Today after the two docs talked, they decided to take another biopsy of the rash. **I asked my doctor about my last blood test, and what my ANA results were....they were extremely high/abnormal. So I really think I have both Lupus and Fibro. They gave me an injection for the rash, and if it doesnt go away in a couple days, the rheumy wants to see me. When I went to see him last month, I asked him if he wanted to see me If they rash came. He said to only come in early to see him if I get the butterfly rash, or sores in my mouth...well those have never been my symptoms... and not everyone with lupus has the butterfly rash and sores in the mouth.
So my frustration is still there...but I feel a little better knowing that my ANA levels were abnormal...weird that should make me feel better. But I just want to get an accurate diagnisis.
08-31-2009, 08:36 PM
hi mary jane,
i am so sorry that you are flaring so badly. but, thank goodness you had a drs. appt. today and how wonderful that he cares enough to call your rheumy to discuss your situation....sounds like maybe you have a good team helping you.
hope you are able to have a decent night's sleep.
08-31-2009, 08:51 PM
sleep...whats that...After I take my meds, I should sleep ok. I'm having the night sweats right now...I think it's from the fever my body is fighting. :sleepy:
08-31-2009, 10:54 PM
Oh Mary Jane, I really feel for you. The pain, the fever and frustration of not knowing what's going on. I am happy to hear that your doctor was able to see the rash at its worst and that your PCP and rheumy actually discussed your status. I understand your feeling validated about your labs. This isn't all in your head.....really! Keep us posted on how you're doing
09-01-2009, 04:08 PM
AWWWW~ Maryjane, I AM THINKING ABOUT YOU and WE are ALL here FOR YOU as well:cute:
09-01-2009, 10:56 PM
Mary Jane, I am so sorry you are frustrated, tired and to top it off you're in a flare! You are right, you need lots of sleep right now to get you through this. I have been diagnosed with lupus and fm and this is very common. I take certain medications for each and there really is a difference between the two. I just now starting to understand the difference between the two in regards to pain and what needs to be done. One thing you should try is about a half hour before bed, run an Epson salt bath, read a good book and relax. There are therapeutic properties within the salt and it really helps me with the tenderness and muscle pain. All of that also helps to bring my system down so I can fall a sleep easier. You just hang in there! What meds do the doctor have you on fm??????? I am on Lyrica and it really helps me out at night. Tonight I am sending you healing thoughts and gentle hugs to comfort you. Keep us posted on how you are feeling and what comes out of all of this frustration :hugs:
09-01-2009, 11:21 PM
Danica...I'm not on anything for the fm...I take plaquinil and imuran(sp), plus cymbalto and trazadone to help me sleep. One thing I have noticed since I started having flares 3 years ago...in the beginning the flares would come and then go...now the pain stays...I'm think this is the fm. I personally think I have both lupus and fm...but we'll see what the docs say in october. It's just very frustrating when you think you know for sure what is wrong with you...and you've been taking all these meds for the past two years, only to find out I may not need the meds.:hissyfit:
09-02-2009, 12:24 AM
I believe Cymbalta was approved for FM
09-05-2009, 04:19 PM
...Thanks to all of you for your concern...I'm having an unusually GOOD day today... it's kind of scary.:yes:
09-05-2009, 10:56 PM
You are right, the fm pain does stay and most days I am tender in all those special spots they test you at. My Lupus pain will come and go with flares but fm sticks around to keep me company. Cymbalta has been approved for fm. How long have you been taking it??????? I tried it and it was not for me and that is when I started Lyrica and I have seen better results with this one. They take some time to kick in and start working, that is why I asked how long you have been on it. You may want to try some muscle relaxers for the really tough night. I take Tramadol and a muscle relaxer on the really painful nights and this helps me to get a great nights sleep. Sleep is the key for fm and Lupus so make sure you are getting some. I will keep you in my thoughts and hopefully you will see some relief soon! I am sending you lots of hugs :-)
09-06-2009, 09:22 AM
Fever and rash can be lupus. I also have many symptoms of FMS, but had a slight positive ANA, high sed rate, high c-reactive protein... it is hard to tell.
Hang in there.
10-25-2009, 01:54 AM
Hi everyone...just a note to check in...I havent had a flare since Sept. 1st. I'm not sure if it is the shot my pc gave me, or if I'm just lucky. Saw the rhuemy again last week. He still thinks I have fibro not lupus. He's slowly taking me off my meds...and took more blood work. Just my luck, I havent had a flare for him to see the rash...when you want someone to see it...it never comes...hmm, maybe that's an idea on how to stay flare free. Anyway, I'm still waiting for a diagnosis...he wants me to come back in January. He says that when everyone starts having pain due to the weather.
10-25-2009, 08:44 AM
hi mary jane, that is awesome that you have not flared since September. What did your pcp give you a shot of? I hope you continue to enjoy many more months of "no pain"......hooray for you.
10-25-2009, 08:57 AM
Sorry for your frustration.. I am sure you are exhausted:wideeyed:.. Yeah it would be nice if docs could figure out fibro vs lupus. I was told by one rheumy that I had abnormal labs, but did not have lupus. Then another doc told me that I do have lupus? My hubby jokes and tells me "how do you know you have lupus," The one doc was definative that I did not, although I had a positive skin lupus biopsy. It's much too strange., I guess lupus is just not a clear cut thing. Just watch yourself and note all your symptoms and stay in tuned with your body. Get some rest hun xx
11-28-2009, 12:01 AM
Well, I had another flare a week ago...but of course it was on a weekend, and I wasnt able to see the rheumy because it was on the weekend. I need for the rheumy to see my rash/inflamed area for himself. right now I'm only on the placquinil and cymbalta....I've been off the aziathroprine (sp?) for about a month. I just want to know what I have. I've never heard of fibromyalgia causeing a rash and fever....anyone out there ever heard of it? I have an appointment in January with the rheumy.:wacko:
11-28-2009, 08:52 AM
I had symptoms of Lupus for 5 years and was diagnosed Fibro out of lack of knowing what else to tell me..I now have positive blood work and definitely have Lupus..as I am sure I did all along. As my GP says..."treat the patients symtoms..not their test results".
11-29-2009, 11:04 AM
As my GP says..."treat the patients symtoms..not their test results".
Here here! Every rheumy I've visited so far relies only on the lab work. I've sat in rheumy's offices with the bright red rash on my cheeks and it was dismissed. Lots of other kinds of rashes too. Knuckle joints red and swollen. I don't know how many different articles I've read which state that a doctor shouldn't rely on those tests alone and consider the patient's symptoms also.
I've heard of fibro patients running strange fevers, but I've yet to hear about the rashes from anyone. My pcp suspects I have fibro and I do too. But she also suspects lupus also. I break out in strange rashes and have low grade fevers. ((((hugs)))) Mary Jane. I hope you get your answers in January if not sooner.