Diagnosis

Hi there can anyone advise about having someone take you seriously to have lupus looked at? I've been told I have fibromyalgia, arthritis and patella femoral joint dysfunction. For years I have had issues with recurrent mouth ulcers (some so big they've ulcerated my throats and spread down my windpipe and I've ended up in hospital) and cold sores.. I have also, during flare ups had to go for cream for the rash on my cheeks which I am told is rosacea, except o only get the rash on my cheeks and nose and chest! I feel constantly run down and have constant flare ups of thrush (oral and vaginal) so it's almost every month I have these things. I'm 43. The last couple of weeks I've started to get to the stage I can barely move I am so tired and have swollen joints in my hands and knees. Someone pointed out lips to me recently and I really feel this could be a possible issue. However my dr said I've had auto immune tests and they came back fine!(the first one came back inconclusive so had to go back again and said fine) but they weren't specifically looking at lupus. Everyone else with fibro doesn't seem to get the joint swelling and rheumatic type pains and they have good weeks; I seem to feel like my body is contatnatly under attack and degenerating rather than having any good days. I feel like giving up because I get fobbed off with everything is fibro but surely the constant ulcers, thrush and sores shows something is going on with my immune system? Should I give up and accept the answer this is fibromyalgia or push for why this has been ongoing for years? In the sun my skin gets hive like rashes and most my childhood pics were of severely ulcerated mouths and sores all over me with red rash on my cheeks when I went into the sun. It's gotten better as I get older but I can leave the house without high sunscreen and hats

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  • Hi Minnie,

    Have a look at Behcets syndrome as some of your symtoms are classic for it especially the ulcers to the degree you have them. It commonly doesn't cause a rise in inflamatory markers ( ESR and CRP ) and there is no specific auto antibody associated with it.

    Diagnosis can take years as the symptoms can present in a piece meal way. It's also very rare and poorly understood.

    Here is a link to the Vasculitis UK page on Behcets ( it's one of the Vasculitis variants )

    vasculitis.org.uk/about-vas...

    If you stay in England there are 3 Behcets Centres of Excellence ( C of E's ) in Liverpool, Birmingham and London. They are nationally funded so you can request a referral from your GP and it won't cost them anything.

    Feel free to PM me if you want to chat about this. I have Behcets and it took me 4 years to get diagnosed. I had a ? Lupus diagnosis for a while which is why I lurk here occasionally!

    With your symptoms it should definitely be a rule out and the C of E's are best placed to do that.

  • The link to the C of E's

    behcets.nhs.uk

  • Thanks so much. Although some of the symptoms of that seem to fit i looks at pictures and my rashes don't look that severe! It's just an acne looking raised sore rash that appears and then disappears ! Sometimes it can be there in the morning then go as the day goes on -and other times it canlst for several days then disappears! I do have a slight red rash all over my chest constantly but nowhere else! Either way I'm going to push my GP. She's prescribed anti depressants (ssri) and asked that I see if that helps my symptoms first: I've refused all other meds (gabapentin, naproxen, amitriptiline and tramadol) but I feel unless I do try something I'm going to be fobbed off so iveagreed I'll trial the ssri to see if symptoms improve and mood improves

  • Behcets is a syndrome which is one of the reasons why a diagnosis can take so long ( average of 12 yrs ). The skin problems associated with it varies from person to person, as does the severity. If your ulcers are so severe you need hospitalisation then it should definitely be a rule out.

    I am not sure what you have to lose by asking for a referral especially as it's " free ". Why would a SSRI help an auto immune problem? I think your GP has taken this as far as they can, they are a generalist and don't have the knowledge to investigate and interpret symptoms correctly. You came on here and asked for advice and help for a reason.

  • That's very true. Ssri meds are believed to help fibromyalgia symptoms so because they tell me all my symptoms are fibro related I'm assuming they want to see if the ssri improve the symptoms; in which case it's deffo fibromyalgia. That's the reasoning unbelievably. I've been prescribed naproxen and amitriptiline and gabapentin and tramadol for the arthritis but I refused as side effects can be horrible. I'm starting hydrotherapy at hospital this week to try and help my mobility. I've had very low mood for several months ( I'm also a single mum and full time carer to an autistic son with severe challenging behaviour so much of my symptoms are also blamed on my lifestyle

  • Well said!

    For what it's worth, many of my immune dysfunction & connective tissue disorder symptoms were blamed on what we now know was a diagnostic scapegoat during the 40 years of the NHS investigating, diagnosing & treating what we now know are secondaries.

    Finally, 5+ years ago, a brilliant lupus expert rheumatologist recovered my infant onset lupus diagnosis & now at 63 my symptomatology is reasonably damped down & am feeling less pain + more resilience + stamina than I have since my early 20s....feels like a miracle to me...but I'm not the only one here on this wonderful forum with a complicated backstory

    20mg Amitriptyline taken each night helps me as part of my daily oral combined therapy prescription treatment plan (along with hydroxychloroquine + mycophenolate + low dose prednisolone)

  • Am glad Keyes has replied. She always gives great advice

    I certainly think you need to gather your strength and insist on referral to a rheumatology clinic with expertise in immune dysfunction & connective tissue disorders....for instance, my version of lupus is the vascular type and i attend a specialist rheumatology Lupus & Vasculitis clinic at a university hospital. I'd been seen at various other clinics for decades before thus clinic finally recognised my version of lupus + various overlapping conditions. Now I'm regularly monitored, my issues are reasonably under control and I'm seeing real benefits

    This link has a checklist you can download which helps a lot with prepping for doctor appts...this is useful to anyone with any sort of immune dysfunction:

    usinlupus.com/tools/appoint...

    The same website also has a great symptom checklist you can download:

    usinlupus.com/lupuschecklist

    Lupus UK will help you find the most expert NHS clinics nearest you....you can private message a request to Fabienne at head office from this forum (go to the very top of this page & click on the arrow by your forum name for the drop down messaging option)

    Fabienne_Jacquet

    Please let us know how you get on

    Hang in there...courage

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hi Barnclown,

    Definitely important not to rule anything out. The good thing about the C of E's are they are nationally funded so it's essentially a free referral and easier to get than others. πŸ˜€

  • πŸ˜†πŸ‘πŸ‘πŸ‘πŸ‘πŸ€

  • Just reading this post and I'm curious. Is that true for the Royal National Hospital for Rheumatoid Disease in Bath - which is the lupus centre of excellence? Only my GP refused it and I thought on cost grounds. Thanks.

  • Hi Wendy,

    Sorry for the confusion, I was referring to the Behcets Centres of Excellence. There are only 3 of them and they are nationally funded. The same set up doesn't exist for Lupus I am afraid. Behcets is very rare ( 1 in 100,000 ).

  • OK. Thanks for clarifying that for me.

  • Thank you so so much. That checklist is really helpful as I tick the majority of the boxes! I'veagreed to a trial of ssri meds as refused all meds prescribed till now soshes said if this doesn't improve my low mood and fibro symptoms she will then do further tests . I have a great gp and so trust her judgement as she was the one who sent me for MRI and found the osteoarthritis and diagnosed the fibro when I was told it wasn't anything.

  • I vvvvv much like the way you're thinking...in my experience, it's collaboration like this between good True Detective medics & conscientious, open minded, well informed patients that tends to "work" more or less much of the time...along with a sprinkle of fairy dust πŸ˜†πŸ€

  • Update: I emailed my rheumo with the photos of my swollen joints and hands and rash on my face, after chatting to you here; expecting a fob off. Instead, the consultant herself called me the next day , she's already arranged my GP to take urgent bloods and is getting me in to see her within a week! I'm gobsmacked: she said something isn't right if that's happening and even tho bloods last time showed negative this warrants further investigation! I'm gobsmacked! Really thought I'd get the usual answer of "that's your fibromyalgia!" Thank you for giving me the courage to just contact them and ask for investigation at least !

  • YAY: you've made me day with this news πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

    Please please keep us posted

    πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Will do. She mentioned that I'd had bloods done for both RA and Lupus but said that's not the be all and end all and we need to investigate this more. She'd already rung the GP first thing to ask they book me in for bloods! Been keeping a diary with photos of my hands asthats where the swelling and pain is mostly. 2 days ago I looked like I'd been in a fist fight from trying to put petrol in the car!

  • πŸ˜† I can relate to this: it was my hands & feet that finally got my lupus expert rheumatologist to look hard enough at me & start treatment. once she had learned my full medical history & done her thorough clinical physical exam at our first appt, she knew I met enough of what doctors call "clinical" diagnostic criteria for SLE,, so that she didn't hesitate to start prescription treatment even without bloods results.

    Treatment helped me enough immediately for her to feel encouraged in her SLE diagnosis. And when bloods results did come in, my low lymphocytes + low complements were enough to meet the immunologic bloods criteria.

    So, although I'm sero neg re antibodies, I am firmly diagnosed with SLE based on standard British Society of Rheumatology clinical & immunological criteria

    Hope this is encouraging

    Giving you a big hug

    πŸ€—πŸ€

  • Hello,

    Thank you for sharing this with us. You should definitely ask your GP to refer you to a specialist for further investigation. We can provide you with the details of lupus specialists in your area. You can send me a private message or contact me at Fabienne@lupusuk.org.uk

    For more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • Thank you so much Fabienne. I emailed the photos to my rheumatologist secretary along with explanation of what's going on, expecting a fob off. Instead she's asked Gp totake urgent bloods, andis getting me in to see her ASAP. She even took the time to call me herself which is unusual for a consultant rheumatologist! Gobsmacked! So just waiting for a date to go in next week and start tests! Can't believe I was taken seriously ! Thanks so much for your support here as it gave me the balls to contact my rheumo!

  • Have sent you pm . Thank you so so much

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