I know this could open the flood-gates to comedy answers, but there is a serious request behind this question.
Several years ago her health deteriorated and she had to leave work (ESA and Atos Origin is another painful subject!) as she was in constant pain, motivation and concentration diminishing, insomnia, etc. This obviously was led to depression, weight-gain, more depression and the continuing spiralling effects of that.
Trying to get a proper diagnosis is so difficult, and currently the GP has accepted ME/CFS after a battery of blood and other tests. However, after reading the interesting articles on the site here, my wife was wondering whether or not she is actually suffering from a form of LUPUS.
The internet is awash with sites indicating ME, Fibromyalgia, LUPUS comparisons, but is it really as simple as getting a blood test to check for specific ANA anti-bodies to determine if LUPUS is present or not? If so, we can check with the GP if that was tested.
Your help would be gratefully appreciated, as if my wife can at least determine what is wrong that is a start for treatment, as opposed to the mountainous cocktail of drugs she is currently taking for each of the symptoms and drugs to counter the side-effects of the other drugs.
I was diagnosed with ME first, a few years ago, and at this point the ANA didn't show positive, but the ESR was a little bit high. A few years later I was getting more in the way of joint pain and I went back to the GP who referred me to a Rhumatologist. He did more blood tests and then the ANA was positive and the ESR higher still and I got a diagnosis of 'probable lupus' for a couple of years while they monitored my bloods. Last November the diagnosis of Lupus was confirmed with 3 positive ANA results over 2 years. I was also consistently presenting symptoms that they look for when diagnosing, such as a face rash (twice in 2 years), sun sensitivity, joint and muscle pain, fatigue, and a hereditary factor (my mother has rheumatoid arthritis). I think it's really worth going back to your doctor to check whether the ANA was tested, and to ask to be tested again. I hope you get some answers. All the best xx
Many thanks Dryad, really appreciate the feedback.
hello munchie
like dyrad i too took a very long time before docs took me seriously and the process was so frustrating and frightening as i just knew something was very wrong.
i was told i proberly have fibromyalgia and there was nothing they could do for it and at that stage i only had routine bloods done but not bloods done for crp or esr.
then after a whole year of back and forth back and forth my docs finaly took more bloods which thankfully showed raised esr and a postive ana and then a further test of dna which confirmed lupus.
so its important to keep going to docs even though sometimes you feel like such a nusiance.
Thanks Pinky, we'll be following up with the doc now. Even if the tests are negative it is something else we can cross off the list.
Like most on here it has taken a few years for anything to show up in my bloods, fortunately I have a great rheumy who has always taken my aches and pains seriously. It is a bit like being in limbo land and thinking are you just going mad and imagining the aches and pains as I've never followed a 'typical' pattern for anything as my aaches and pains get worst throughout the day, I had no swelling and nothing showing in my bloods. Now I'm diagnosed with cerebral lupus, fibromyalgia, sjogrens, raynauds and psoriac arthritis (luckily I don't have the skin psoriasis only in my nails) my days are very unpredicatble. Most days I need sticks to help my balance, am stupidly tired after doing minor things like water the plants but its actually helps that although I have alot wrong with me at least I know what is wrong with me! Its the not knowing that drags you down! Tell your wife to make the most of her goodish days and try get out most days no matter how crap she feels, its so easy to become isolated when your living with chronic pain. Good luck to you both x x
hiya it took doctors about 8 year before they came up with lupus i was lucky on the day i had a flare up i at to have a blood test and flare up in me is a burning face ache all over very tried and chronic pain i would cry in pain now i still get flare ups tried all the time pain most of the time now trouble with my legs cannot walk very far lots of pain in legs and some of my toes fill like lead and lots of pain doctors dont know what it is yet hope they find out soon there is many more people on site where we are all the same best wishes to you hope they get you sorted very soon so you can get the right meds good luck to you both xxxxx
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