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carriejeane
08-07-2007, 04:28 PM
Well today I was diagnosed with fibromyalgia, although I was told that I may indeed have lupus... just in the early stages and not enough to give a "diagnosis." We all know how that is :)

My ana was 1:320 and all but one of my other tests were normal, my red blood cells were a little low. We are doing some more testing for thyroid issues because of family history, but the doc doesn't really expect to find anything.

My question is how many of you got the fibro diagnosis first, and later were given a diagnosis of lupus?

Carrie

Saysusie
08-08-2007, 09:52 AM
I was just the opposite. I got the Lupus diagnosis first. After my Lupus was downgraded to "Mild", I then got the Fibromyalgia diagnosis. Personally, I think that I had both all of the time, it's just that when the Lupus symptoms were not critical, the Fibromyalgia symptoms became much more evident.
It is not at all uncommon for us to have both at the same time. The good thing about Fibromyalgia is that it IS NOT a disease of the joints, muscles etc. (like Lupus). But it is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. Fibromyalgia mainly affects muscles and their attachments to bones. Although it may feel like a joint disease, it is not a true form of arthritis and does not cause deformities or loss of function of the joints. Instead fibromyalgia is considered a form of soft tissue rheumatism.

Peace and Blessings
Saysusie

beautifulbeluga
08-08-2007, 02:01 PM
Hi Carrie:

I was dx with fibro about 17 years before they began to treat me for symptoms of an auto-immune disease, thought to be SLE but still not labeled as such, using UCTD terminology. Sometimes it is difficult to get a fibromyalgia diagnosis because after that they blame everything on it. This also included the rheumatologists. I had many joint problems for years that they continued to say was fibromyalgia only in the muscle. By the time they finally decided to look past that diagnosis, my knees were so deteriorated that I had to have two total knee replacements. Also my other joints are affected including my spine. Once they began to treat me with plaquenil, and MXT my symptoms began to get better something that never happened in the preceding 17 years no matter what I did to help myself. I am like you with only my ANA, SED, and CRP levels elevated, not enough to give a SLE diagnosis even though my symptoms meet the criteria.

carriejeane
08-08-2007, 05:47 PM
I was basically told to get back to my exercise program, which was walking three miles a day five times a week until I REALLY started feeling bad. I have since put on 20 pounds, and the doc says I'll feel better if I get the weight off. Who has the energy to exercise and who wants to feel so bad afterwards if you make yourself do it?? I am taking trazadone to help me sleep and mobic for the joint stuff... but why mobic if fibromyalgia isn't a true arthritis? The doc says if I rested better I'd feel better, which makes sense, but he also said that he'd prescribe some phentermine (which we all know is a weight loss drug) to give me energy if I just couldn't get back to the exercise routine. Has anyone else ever heard of doing that?? I am starting to think he was saying that weight loss would solve all my problems... but I only gained the weight because I was feeling too sick to do exercise in the first place. :x

Saysusie
08-08-2007, 05:57 PM
Fibromyalgia is not a true form of arthritis because it does not cause deformities or loss of function of the joints. However, the arthritic-like pain is very real and it is for this pain that you doctor prescribed the medication.
Exercising is extremely important, both for Fibromyalgia and Lupus. It actually helps to relieve fatigue and pain. If walking three miles/day for five days/week causes you pain afterwards, then try walking two miles/day for three days/week. On the days that you do not walk, just do chair exercises (meaning leg lifts, shoulder presses with canned foods as weights, leg and arm scissors etc.). When you are washing dishes, do calf raises (up and down on your toes). When you dry off after showering, do leg and thigh stretches. Make everyday routine functions a type of exercise. The important thing is that you DO SOMETHING everyday to help your body to overcome some of your symptoms of fatigue and pain. Exercising also helps to build your immune system and hopefully help your medications to get you back to a form of normalcy.
Please do try to get back to some form of regular exercise, it will actually do you much good!!

Peace and Blessings
Saysusie

carriejeane
08-08-2007, 06:03 PM
Thanks for the advice, Saysusie... you guys are the best :D

the_librarian
08-09-2007, 01:22 PM
I was diagnosed with FMS about ten years ago and then SLE in January. I think I had them simultaneously, but was simply undiagnosed for all those years. I work out twice a week with a personal trainer and that helps because she can usually gage if I'm overdoing it before I can. When I'm up to it, I also walk on my treadmill a couple of times a week, even if it is just slow and easy for a bit.

I resisted the "working out will help you" theory for a LOT of years, but I'm slowly becoming a believer. The primary force behind that is that the more I workout the better I sleep the better I feel...

Good luck with everything!

carriejeane
08-09-2007, 04:32 PM
I do actually get a lot of exercise still... I work at a dry cleaners and I'm on my feet continuously walking 6-8 hours a day, carrying heavy clothes back and forth and then bagging them up. I guess I don't really consider it exercise since it's not technically an "exercise program," but it is a very physical job. I've walked over five miles a day many times, not to mention all the lifting. I like to wear a pedometer just to see how much I walk :)

That's one of the reasons I haven't quit my job, because I know at least there I'm getting some exercise... as opposed to a desk job or something like it. I am convinced that getting back to my walking routine will definately help me though.

Carrie

Razzleberry
08-09-2007, 06:17 PM
Intellectually I understand the need to exercise but physically I just can't seem to do anything. It absolutely exhausts me and then I'm down and out for a couple of days. It seems that anything more than a quiet life in my house produces debilitating fatique and a bright red lupus rash and overall body aches but mostly I just don't know how to get past the extreme fatique. Am I being a wimp?

carriejeane
08-09-2007, 06:47 PM
I don't think so... by the time I get home from work I'm exhausted!! When I even try to do anything else I'm exhausted and ready for bed at 8pm... then I sleep every weekend away!!

SO FRUSTRATING!!!!

TMWeaver
10-11-2007, 05:44 PM
Well today I was diagnosed with fibromyalgia, although I was told that I may indeed have lupus... just in the early stages and not enough to give a "diagnosis." We all know how that is :)

My ana was 1:320 and all but one of my other tests were normal, my red blood cells were a little low. We are doing some more testing for thyroid issues because of family history, but the doc doesn't really expect to find anything.

My question is how many of you got the fibro diagnosis first, and later were given a diagnosis of lupus?

Carrie
I was diagnosed with Lupus and Raynaud's first, then Fibro. Which I was told my a good friend at our local hospital, not to tell them you have Fibro in an emergency or they think you are a drug addict/nut case and send you home. Unfortunately, I had that happen to me twice before I stopped telling them all my autoimune diseases.

hatlady
10-12-2007, 06:20 AM
I suspect I've got fibro along with the SLE - but no dx at this point. Actually when I was dx'd with SLE I thought it was FMS. My SLE has always been on the mild side, so symptomatically it seems about the same.


Intellectually I understand the need to exercise but physically I just can't seem to do anything. It absolutely exhausts me and then I'm down and out for a couple of days. It seems that anything more than a quiet life in my house produces debilitating fatique and a bright red lupus rash and overall body aches but mostly I just don't know how to get past the extreme fatique. Am I being a wimp?

Oh MrsM! I understand, there are days I can hardly make it through... and other days I could walk from my house to yours (well, feel that way, anyway!)

I've found I have to take it much slower than I did before SLE. Some days the treadmill is set at 2 miles an hour and I go for 20 minutes. Then gentle gentle stretching for a bit. Those are the hard days. The good days? Treadmill at 3.5 or 3.7 mph, maybe some light weights. The REALLY good days? Eliptical for 35 minutes, then light weights.

Just do a little. If you walk out side (and it is SO beautiful in Illinois today!) just go 1/4 a block if that's all that feels good. and maybe Saturday you'll be able to do 1/4 block again. Next week? Maybe 1/2 block. Don't build up too fast, but do remember to stretch gently. If you have a friend who knows yoga, ask them to work with you on that part - many yoga stretches are perfect for us.

Oh yes, and even in our slanting long light of fall, wear a hat and sunscreen!

Hugs to all,

Sarah258
10-20-2007, 11:10 PM
I also was diagnosed with both at the same time. along with all kinds of other fun stuff. doctors are over rated. i've done so many tests lately, and how can everything be ok, when all i do is hurt?

mnjodette
10-21-2007, 05:37 PM
Just one fun diagnosis after another, isn't it?

I got the Fibro diagnosis a couple months ago. Like lupus, I assume I've had it quite a while. Just didn't have a name for it. Lately my hips hurt so bad in the morning, I walk like I just got off a very wide horse. Like John Wayne, except a little more feminine. (Did you ever see "The Bird Cage?" The scene where Nathan Lane does his John Wayne imitation? Yeah....like that! :lol: :lol: :lol: )

Jody

Sarah258
10-21-2007, 11:40 PM
ooooooooooooooo my hips have been awful from the get go also... it pretty much sucks

the_librarian
10-23-2007, 10:23 AM
I've always had that as long as I've had the FMS. My hips were always the worst, then my lower back and then my shoulders. The pain is awful, isn't it?

AB

Sarah258
10-23-2007, 01:22 PM
not having any control over it is awful... not having anything to control pain with.. also awful... :roll:

the_librarian
10-23-2007, 04:48 PM
Not having a blood test that says your sick, awful; not having anyone understand that even though you don't look sick you are, awful; Being self critical because no one believes you, awful...

Sarah258
10-24-2007, 10:48 AM
feeling like a useless burden is awful also.. i know where your comin from my dear both my hubby and daughter have been great in supporting me.. but i can't do anything but feel useless and like a HUGE burden on everyone... sucks.