lupus?

I was diagnosed with fibromyalgia in 2005 and tho things were pretty stable until sept 2011,i got pain and pressure in my ribs as well as protruding ribs on my left side.this was the start of my problems with GP-not acknowledging what symptoms are-not giving me any clues as to what things are/could be.between sept 2011 and February 2013 things got a lot worse.i developed hard pea sized lumps in my abdomen,acute sinusitis where i had swelling in my nose and around my eyes,bruising around my eyes and pain in the bones at the side of my nose and left side forehead.from april 2012 my GP prescribed nasal sprays fro a couple of months which were not helping longterm,i then got some antibiotics from nurse practitioner and they gave some short term relief.i finally got the GP to agree to refer me to ENT and my appointment has just arrived for april 24th.

I have also had a swollen abdomen for a couple of years and all scans were normal.As pain and discomfort got worse I kept going back to my DR fro answers but never really got any apart from being given meds.My stomach then became very hard and pain and lumps spreading.i also had bouts of lower back pain which became permanent in january this year

I had read stories of people with cysts and OC.not showing in scans so my fears developed it could be one of these. tho my doctor said it was not.i did have a polyp removed in august last year but don't think that was the cause of symptoms.

in sept my DR referred me back to rheumatologist .I told him of symptoms and that I had recently lost weight in my arms legs back and hips yet my stomach was getting bigger all the time.He commented on the fact that I had gained weight in last 7 years since I had last seen him.my response was it is all abdominal and I have lost weight elsewhere since sept. I also have had a cough since sept and no one is taking me seriously on that.it started I would cough whenever I lie down at night on my left side and i thought it could be connected to protruding ribs on that side.Now 6 months on I still have the cough and it is more often,i also choke on food now and again.over the last week My neck and throat feels tightened especially at the front and sides.

I have been on the fibro forum for a while and I have been asked if I have been tested for lupus.So I searched Lupus and it said tightening of throat was a symptom.

even though my DR is not giving me any answers or clues and despite not acknowledging things he has recorded them in my medical notes.

I am .just lately my dogs have been acting strangely and I am sure this is because they know there is something serious going on.I don't feel stressed out over this so its not that they are picking upon tho I do cry sometimes when things are bad.

what does anyone think?should I go back to my DR or wait til I see ENT and could I have lupus.(I also have bright red skin patches on my face arms and legs.)

7 Replies

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  • That sounds less like lupus and more like vasculitis, what with the sinuses and abdomen problems. Difficulty swallowing could also be vasculitis. Try Vasculitis Uk website or the healthunlocked vasculitis community to get a better feel. In any event, I would still go to the GP and ask to be referred to a rheumatologist with experience in vasculitis, this way you are covered. With any luck you find out that you do not have either, hopefully. Good luck.

  • I have never heard of vasculitis.but will research it.i haqve gone to my DR and asked him on several occasions when I have had no answers "could I have ???"I don't think dr's like patients asking if they have something

  • No, they don't, but tough, it isn't their health at stake, only their ego, so don't jeopardise one for the other. He needs to look at everything in the whole, rather than piecemeal, which he seems to be doing. It takes a while to get to the bottom of what's happening but you'll get there in the end if you push. Take care.

  • it does seem like i've been fobbed off for the last 18 months. the size and feeling of my stomach should tell them something is amiss.

  • Dear anbuma

    Your symptoms overlap a few different auto-immune conditions. How about asking for a referral to a different rheumy for a second opinion, as it doesn't sound like your present one is listening to your concerns. Or you could ask for referral to a lupus specialists, if you feel you need to rule this out specifically.

    Unfortunately all auto-immune conditions are difficult to diagnose by the very nature of their over-lapping & constantly evolving symptoms.

    Another thought is are you on any meds that could be contributing to any of your symptoms?

    I hope you get some help very soon. X

  • thanks for your reply,roobarb.i am on several meds and don't know if any of them are making things worse. I have stopped taking some of the meds I was on cos I felt they weren't doing anything. at present I am taking fluoxetine, omeprazole, nifedipine, paracetemol and imipramine plus I have just started taking apple cider vinegar and another product but cannot recall the name of them right now.

  • It's complicated when you are on multiple medications. If you don't have confidence in your health care providers, perhaps think about seeing someone different.

    It's awful that you have to go through this when you are feeling poorly, but unfortunately you are not alone in this.

    Take good care of yourself. X

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