Is it Lupus or am I imagining things?

Hi, I feel a little like a hypochondriac here but I was hoping I might get a little advice? For years now I've had a variety of non descript symptoms and didn't put them all together until my Mothers cousin and her daughter were both diagnosed with lupus. Now I have to wonder could this also be what has been plaguing me since I was a child?

As long as I can remember I've suffered with painful joints, usually in my knees and hips but also in my arms sometimes. I was diagnosed with psoriasis on my scalp when I was 11 as I had a thick rash, I was given some betnovate scalp application and told I would probably have it for life. It went away a little while later and has never come back since! I've always suffered headaches and occasionally I get a vertigo type feeling where I get so dizzy I can barely stand. Also about 12 years ago I started suffering blackouts and although they could never find any evidence of it, I was diagnosed with epilepsy. I stopped taking medication for it a few years ago and have only suffered one further blackout which was a couple of weeks ago.

I've also been diagnosed with post viral thyroiditis, as I was losing weight and was suffering acute hair loss. I have also experienced my heart fluttering and skipping beats, night sweats and vitamin B12 deficiency and mouth ulcers drive me crazy! I have mentioned to my doctor recently about my hair loss starting again, headaches, mouth ulcers and tiredness and she said it is probably just stress related as I've had a tough year or so. I can't help but feel there is more to it. I just wondered if I really am just a hypochondriac or could there really be more to it? Thanks for your help!

16 Replies

  • Hi Hun, really sorry to hear about all the problems you've had. No pls don't think you are. I was told two years running my my orthopaedic consultant after being discharged by him twice that I needed to see a shrink and that my symptoms are all in my head, but they weren't. I also told my GPs most of my symptoms as well but all they said was here take these (meds) it's prob stress, bad diet, depression, water infections, etc and go away. They didn't look at the bigger picture. I also felt that my GPs were useless so sometimes didn't even go back because they seemed as tho they didn't want to know and my appointment was going on too long!!! Thanks to medical health insurance I've had to see a Reumy on private as NHS is absulotely ****. It's pays to go private but not everyone can do that and why should we when we have the NHS. It's all about their budgets as well as all these tests cost. **** really when you think about it. All I can say is get your GP to refer you to a Reumagotolist (bad spelling sorry) and to get assessed. If you can go private through insurance then it will prob be a 8-9 wait on NHS but that could change depending on where you live but it's worth a shot. Everyone who suffers from this is different slightly but all have same sypmtoms. Your not alone and if I can help in any way would be more than happy to. I'm new to this as well but I don't take **** and am up for a fight against the NHS that's why I'm now seeing a solicitor to see if my GPs are negligent. Take care Lucy xx

  • having gone to my gp over the last nigh- on 2 years and not getting told what things are or what to do about it.he mentioned bloating for the first time 2 weeks agobut has never told me anything about changing diet or what causes bloating.i saw a private dr in January and an USS discovered gallstones .who knows how long I have had them.possibly since last sept when they thought I had was arranged fro me to see a consultant and my op is in gp said to me that he hopes the op will solve my stomach probs and it s like he is taking responsibility fro discovering gallstones when he refused to do a scan last summer.

    the private drs fees were paid fro me as I wouldn't have been able to afford to go private

    I still say my swollen abdomen is a cyst.

  • You are ticking a lot of boxes. There is a standard list of symptoms on the Lupus Uk site. Print it off and take to Gp with a list of your own. Ask for a referral to Rheumatology. Hope you get the help you need. It may not be lupus but might be something similar that will respond to medication. Good luck x

  • I think i have lupus from the list of symptoms on the website.went to my dr with this and said it s still fibromyalgia.

  • Hi ,

    I agree with Sarah, ticking a few boxes there and no lupus sufferer suffers exactly the same so you can have any combination of the lupus symptoms . Lupus website is brill and they will send you a booklet which you could take to the doctor. I wrote down all my symptoms and gave a list to my doctor. I've got a few more symptoms since that but I write down everything. I take photos if anything new appears on my body. I write down my good days and bad days. Start making a list of symptoms or things that might b relevant. Build that picture for the doctor.

    Andrea x

  • Hi, I have had lupus for twenty years recently had a referral to a new consultant and only waited six weeks to be seen it seems that waiting times vary according to different health authorities and if you go to a specialist unit as far as I can make out. I noticed that you said you were diagnosed as epileptic, I am epileptic and have been for most of my life - on various medications and had surgery. A link has been found between certain anti epileptic drugs and S.L.E.

    One thing I would like to bring to your attention is if you start getting dry patches of skin before you get a definite diagnosis although you were told you had psoriasis in the past if you have lupus now keep out of the sun and away from low energy bulbs and flourescent lighting. Although psoriasis is made better by U.V. rays the opposite is true of lupus and the skin will get much worse as you can become photosensitive, I never go out in daylight hours without wearing gloves, scarf, long trousers and sleeves along with protecting all exposed skin with a factor fifty sun cream. The sun can make your other symptoms worse not just your skin so try to avoid it....... if it comes out.

    I know how frustrating it is when you get one thing after another with no explanation, once I was called an attention seeking hypochondriac! Since then I have had a positive diagnosis of lupus and at the moment am doing quite well.

    Good luck and I hope you get some answers soon

    Madmagz x

  • Thanks for the advice ladies, at least I know I'm not going mad. After several visits to the doctors and not getting anywhere I started to question if everyone feels like this and I'm just complaining so its nice to know someone takes me seriously.

    Thanks Lucy that's very kind of you. I don't know if I can go private or not but will look into it if I have no joy with my GP.

  • I had been going to my Gp for years with what l now know to be Lupus. I had been seen by a Rheumatologist for 6 years and just treated with antiinflammatory for suspected Rheumatoid Arthritis. - On one particular routine visit they found blood and protein in my urine sample and suggested testing me for Lupus - no explanation, l had never even heard of it and didn't feel any worse than normal, just usual joint pain and occasional rash in different places which was put down to stress and l had Raynaud's.Two weeks later l had a call from the hospital to go that day for emergency blood tests and a scan to the Renal outpatients. A week later kidney biopsy followed by intense intravenous chemotherapy. I don't want to alarm anybody out there , but this just highlights how important it is to get early diagnosis and correct treatment before the condition damages major organs. I have since educated myself all about Lupus and don't take any nonsense from any Gps OR Consultants and still seem to know more about my illness than some of them. Don't be fobbed off by anybody. Good luck :)

  • You're not a hyprochondriac. Your symptoms sound very 'autoimmune'. If you feel you're not getting anywhere with your GP, ask to be referred to a Rheumatologist and then ask to be tested for autoimmune disorders.

    Good luck Skie


  • Thanks everyone for the advice. I find it awkward to suggest it to my GP as I feel like I'm telling her how to do her job and she's always been good in the past. I'm just not sure how to approach her with it. Maybe taking a leaflet or something along might help though, thanks! I woke up feeling ok today and thought great the tiredness and headaches have gone but now I'm back to headaches, achey arms, dizzyness and heart flutters :-( I've got an appointment with my GP later this month and will try to approach it with her then. Thanks for listening x

  • You could try making it her idea...say "I think it might be an idea to investigate lupus like you mentioned before"...she sees so many people she won't remember if she did or didn't...sort of massage her ego

    I do it a lot with people, it works a treat!! :)

  • Thanks I do that sometimes too with my hubby and kids ;-) hehe. I think my doctor would remember though sadly as she knows my whole family and often asks how they are doing when I see her. It's an otherwise great idea though!

  • hee hee hee...women and their wily ways!! ;)

  • Hi I read with interest your sad story and yet it so sums up a lot of my own and probably o lot of others too .May I suggest you find out the rheumatologist that specialises in Lupus as many years ago I was referred to a 'rheumatologist' who although probably very good in his field had no knowledge of lupus So as I did not have swollen ,bent joints I was a fake . I was lucky enough to be told to ask my doctor to refer me to a particular Rheumatologist whose name was Max Fields in Glasgow Royal Infirmary After my first visit and tests he gave me my diagnosis of lupus I'm going back 20 yrs I'm 62 now but he told me with my history I'd had it all my life My advice do research find out who it is that specialises in lupus and auto immune diseases then ask for them Good luck and keep us posted

  • Glad to hear you finally got the answers you needed after so long and I think that's what it's about mostly for me is to have answers for feeling the way I do instead of feeling like a moaning Minnie. I will look into that thank you x

  • You certainly do sound very symptomatic - whether of Lupus or RA or Psoriatic Arthritis or other types of autoimmune arthritis.

    There are many difference connective tissue diseases and if you have had episodes of psoriasis your arthritis could even be PsA - as this doesn't always come with psoriasis and, like all autoimmune diseases, can affect the peripheral nervous system and the rest of the body too.

    You are definitely not being a hypochondriac. If I were you I would be completely straight with your GP about your reasoning - including mention of your cousin's Lupus. Good luck. Twitchy

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