Does anyone have lupus like symptoms which the Doctors maintain are Fibromyalgia? Is this normal?

Hi, I've just had the results back from a battery of tests carried out by the hospital after my fibro symptoms of 4 years suddenly developed over the last 12 months. Muscle pain moved to joints, particularly wrists (carpal tunnel), base of thumbs, hips, knees, ankles and feet and pain worse AFTER rest. Hair loss, skin rashes, sores and blistering, Raynauds in both hands, blue feet, pins and needles and numbness, raised lymph nodes, in addition I was found to have moderate degeneration of both hips and needed arthroscopies for labrum tears, and a routine eye test showed significant lattice degeneration of retina where there was none 12 months ago, and I don't have short-sightedness. I was also hospitalised with aseptic meningitis/encephalitis, and kidney failure. All recent tests came back as normal. Soooo....treatment remains the same. Duloxetine, anti-inflammatories, tramadol and cocodamol. I feel like I'm falling to pieces and I'm very low, and I've had to give up my career as a lawyer because I am too disabled now. I'm 37. I'm sure there are many of you in the same boat, I just wondered if these new symptoms are relatively common with Fibro as they aren't ones which appear in website lists, but I thought maybe actual real live sufferers may know more. Thanks for listening if you've got this far, I've bored myself! Snore xx

5 Replies

  • hi there

    I can relate to the majority of your GP referred me to a rheumatologist who I saw in nov 2012.he didnt listen to anything i told him and just kept on about teh need to lose weight.i told him i couldn't as I never ate much -normally breakfast and a small meal and I hadn't eaten cakes biscuits snacks or puddings for about 4 years,this fell on deaf ears and he also said my Ca125 was lower even tho that isn't his dept.i had at the time several symptoms of lupus my dr had been treating me for -scalp sores, facial rash, nasal sores and more recently sores on my hands btu because he said my bloods were normal when tested .all I got was "its fibromyalgia".even I know that you dont get skin rashes with fibro.told my dr of this and he said the can they treat you fro several things and not link them together.i also knew I ahd a thyroid problem from losing some eyebrow hair last year but that was dismissed and now I have lost my armpit hair and was told its alopecia yet not the cause as is the same with a urine sample -it contained protein btu not the so sick of beign fobbed of and not taken seriously. I also have symptoms of OC and my CA125 levels are elevated slightly btu dr wont accept teh symptoms of that.I now have a curve in my spine which my physio says is casued by y stomach muscles(not sure what he meant)btu my stomach is so swollen and hard ,it has to be a cyst or tumour as it is the only reason fro my weight increase in the last 2-3 years.i also am concerned my eyes are getting worse.consultnats are a waste of space too .I wa sreferred to ENT after a year of unsuccessful treatment on my nasal sores and when I got his letter all it said was "sinuses are normal"when I neve rhad a sinus problem.

  • You poor ladies, I really sympathise with the situation you find yourselves in.

    I have lupus and thought I was having a flare up when I was diagnosed with fibro. The two are quite common together as well as other auto-immune conditions like RA and hypothyroid. I waited, (or should it be wasted) ten years for a diagnosis that wasn't depression. Like yourselves, I knew it was more than that but couldn't get it across to my gp.

    In the end moving house and changing doctors was the best thing I could do. I finally had a referral to a rheumatologist and a lupus diagnosis, followed two years later with hypothyroidism

    It is unfortunate that lupus, RA and fibro overlap on so many points. You may well have fibro, but that does not mean you don't have lupus too or RA or even Thyroid problems also.

    If you go to these communities on HU you will see the posts of many in your position. It seems these doctors are blinkered and just want to dish out the anti-depressants as it is easier that way.

    If, after research you feel you have a comprehensive list of symptoms that point to another condition then you need to find out the best place to get a diagnosis. For lupus it is the Louise Coote Unit at St Thomas' hospital in London. I am sorry I don't know much about RA or Thyroid, but those communities should be able to help you.

    I am no doctor but your symptoms seem to me to point to something else going on, with or without fibro.

    I hope you both get answers very soon. It is miserable enough being poorly without the added stress of fighting the medical profession.

  • Hi there

    I had many symptoms of lupus and (in 2009) after a stay in hospital my GP sent me for a blood test for lupus which came back negative. Although many of those symptoms have now dissipated I have never been given an explanation of what the issues were at the time as this was pre-diagnosis of my Fibro. I do not know if this helps you but I sincerely hope that it is a start in your search for answers.

    Take care

    Ken x

  • Thanks for this Ken, I'm still in the dark but waiting to see a new consultant. These symptoms are all 4 years post Fibro diagnosis, and coming on thick and fast. I suppose it's possible that Fibro symptoms can change too, it just feels a really off when I've got used to how FMS affects me. Hey ho, the joys of the beast I guess!

    What genre are your books Ken? Reading is about the only hobby Fibro hasn't spoiled for me :)



  • Hi lipbalmaddict

    Many thanks for your reply. Yeah, my fibro pains have evolved since my original diagnosis in that they have spread to my legs, feet and neck. So maybe yours could be Fibro, not really a pleasant though as if it was something else they may possibly be able to treat it more easily.

    Most of my books are of a psychology / parapsychology and philosophy nature but I have also written books on modernity and even a couple of comedies. Thank you for asking as my work means a great deal to me.

    I sincerely hope that you can get these issues sorted as soon as possible.

    Ken x

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