The Lupus Forum banner
1 - 18 of 18 Posts

·
Registered
Joined
·
11 Posts
Discussion Starter · #1 ·
I am so tired, like most of you on here, I want so many answers that have yet to be given...

I was diagnosed 8 years back with Fibro but Dr's have thought I have had Lupus several times now...

Can you please tell me what happened with you, if you have both, which came 1st and how did you feel? I just dont think I have only Fibro, too many weird things going on in my life.....
 

·
Registered
Joined
·
15,684 Posts
Hi Mandiee,

I don't have Fibro thankfully :)

love
Lily
 

·
Dee
Joined
·
302 Posts
I was dx first with Lupus in Feb 2002, & Fibro only last september, I thought it was a bad flare, til my consultant said otherwise. I had heard of fibro, unlike being told I had Lupus, I had never heard of it.
Now I know both very well.

I'm still trying to get my Fibro under control, some days it's hard to tell which is Lupus & which is Fibro. I'm so tired & achey all the time, I never seem to get any respite from it, I've just finished 10 weeks of pool therapy for the Fibro, can't say it helped any, it was nice though lol, now the physio has me on regular exercise, which I am finding hard at the moment.

I hope you get your dx quickly, so you can get some treatment. :)
 

·
Registered
Joined
·
2,404 Posts
I was diagnosed with Fibro first by a local Rheumy who then thought he could just dismiss me. My GP knew something inflammatory was going on and in desperation tried me on steroids. (They do not work for Fibro). Within 2 days I looked 20 years younger and felt fantastic so it was obvious there was more than Fibro.
They don't often test people this way any more as they say it is cruel to give you normality and then snatch it back as no one should stay on high dose steroids if it can be avoided.

I saw Dr. D'Cruz in London privately to start,then got an NHS referral. I as diagnosed in no time. I was pretty sick by then.
Hope this helps a little. For me Lupus is worse than Fibro, but others are different in hich they find worse.
x Lola
 

·
Registered
Joined
·
710 Posts
Hi,

I was DX with fibro 18 years ago. The DX took 18 months and alot of specialist. I was checked for lupus with all the fun blood work several times. They only thing they found was a low positive ANA.

Four years ago started having problems again. This time I was tested and most things were off the charts for lupus.

I personnally feel that most of my pains are from the fibro.

Elaine
 

·
Registered
Joined
·
1,563 Posts
I myself was diagnosed with fibro first like 15 years ago and then like five years ago diagnised with lupus and then sjogrens.I have had raynaunds all my life.Well anyway the fibro was pain in both my knnes but what part of the knee i dont remember.I most likely had lupus then but not enough to prove it at that time.It is something that does take awhile to get the right diagnosis.When i finally had enough things going onto get the diagnosis but never did i think it was lupus or anything like it.Well anyway i sure hope for the best for you and to feeling better soon.

Tammy
 

·
Registered
Joined
·
1,640 Posts
Hi,


For me the Fibro came first. I was diagnosed with Lupus, about 10 years later.


Sandy
 

·
Registered
Joined
·
1,388 Posts
Fibro came first for me too.:) I think my daily aches and pains are fibro related!! They both are difficult for sure.;)


Becca
 

·
Registered
Joined
·
117 Posts
Hi

Lupus came with me first then the fibro. Both to me are just as bad having! Wished they had a cure for both so we could all get well. I sure would have myself one heck of a dance if they cured me! Fireworks and all!:hehe:
 

·
Registered
Joined
·
6,152 Posts
I was sort of diagnosed with both around the same time. When I went for my first Rheumy appointment in April 2005 she diagnosed fibro but when my blood results came back after that appointment she called me back in and prescribed Plaquenil in August 2005. It was about three months after that when she formally diagnosed me with Lupus but my bloods and symptoms at the first blood tests indicated Lupus: ANA+, anti-dsDNA +, low complement levels, etc.

Later on she confirmed having both fibro and Lupus.

Joan:rose:
 

·
Registered
Joined
·
4,968 Posts
I was dx with Chronic Fatigue Syndrome, then Fibro, then MS, and recently un diagnosed with MS as now they think it is Lupus or a MCTD.

I have been suffering with extreme fatigue for years now. I also have severe obstructive sleep apnea and have had 3 surgeries on my sinus cavity which I am sure adds to the apnea.

I hope you get feeling better soon. I take Provigil for fatigue. My Neuro prescribe it for me and it does help. Some days I take 100mg all the way up to 300mg. It really depends on what I have to get done in a day.
 

·
Registered
Joined
·
120 Posts
Which came first: chicken or fibro?

Okay so I slaughtered the joke. ;)

I first was dx with discoid lupus, then 3 years later lupus definitively, migraines had been occuring throughout. Then came vasculitis, then social anxiety and extreme depression, then fibromyalgia.

That started basically with pain to the touch of my hands and upper arms. It's progressed from there to just about all 18 pressure points and a lot of other places. Joy.

You also asked, how did we feel? I think lupus and fibro. have a lot of similar yucky feelings. What are YOU feeling?
 

·
Registered
Joined
·
8 Posts
I was diagnosed with benign intercranial hypertension in 2000 ish, sorry memory bad lol. Then in 2006 i was diagnosed with lupus and in the last few months i have been diagnosed with fibromyalgia, i have discoid lupus apparantly which is supposed to just affect my skin, im confused and dont know which causes me the most problems, all i know is as i write this im covered in the lupus rash, im exhausted, i have occaisonally lost control of my bowels in the last couple of week, i hurt all over and have pins n needles, pains on the inside of my body, the list is endless, basically i feel like crap and im so frustrated with it, im usually quite independant , but these days i rely on my partner just to get me out of the chair and the rest he has to do for me as im unable. Please if anyone has the same conditions get in touch i feel like im alone on this one.
 

·
Registered
Joined
·
647 Posts
I was diagnosed SLE in 2004, and Fibro just this summer. There is such a cross over of symptoms, I think many of us suffer with fibro and think it is the lupus causing us problems.
 

·
Registered
Joined
·
339 Posts
Ive been diagnosed with SLE and Fibro. A couple of years ago now was diagnosed with both together. I know a lot now about SLE but not so much about the Fibro. Im not sure which of my symptoms are which but someone said steroids dont touch Fibro. Ive just been put on steroids and still have upper body aches and pains so that is maybe the Fibro.

Not a lot of joy in either is there?

All the best to you.

Luv Sal x
 

·
Pollianna
Joined
·
485 Posts
I was told that I had fibro in 2001 along with cfs. I never believed that that was an actual diagnosis. I knew it was latin for aching muscle. I don't at all mean to be controversia I sincerely believe fibro is a symptom of Lupus. My symptoms haven't changed at all and I now have lupus? I bet all those years ago what they diagnosed as Fibro was an acute and prolonged attack of Lupus and would have respnded to treatment. I will never know tho
 

·
Registered
Joined
·
2,470 Posts
Although I don't have a fibro diagnosis, my rheumatologist said that my lupus pain and sleep issues really needed to be addressed in order to minimize the chances of developing fibromyalgia.

I guess it sometimes boils down to which tests you are given and how aggressive your doctor is with diagnosis.
 
1 - 18 of 18 Posts
Top