I am male, aged 53. I've had varying symptoms over the past 2 years, starting with flu like, Renauds, fatigue, heart flutters, joint pain

Also side & back pain, kidney pain, headaches, sweats, eventually diagnosed AF from the heart flutter. But still getting back and chest pain (not severe), flushes, Renaud's, and dry mouth, dry eyes, tired. Oh and small lumps under skin, with sometimes discomfort underarms. Saw the MPTD question and wondered? Had tests for Lyme's disease, Sarcoidosis, Pheochromcytosis, all negative, Rheumatoid factor is 40 IU/ml,but not rheumatism. I've getting very little help from my G.P., they've given up because the AF has been diagnosed, but I think there's an underlying condition. What do I do, who do I turn to?

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9 Replies

  • Hi pliddell,

    Have you been referred to a rheumatologist before? I think that's who you'd really need to see to get the underlying illness diagnosed. Do you think your GP would be willing to accommodate this?

  • hi Paul, thanks for reply. Yes I have been referred to rheumatologist, but because only marginal factor, mainly in wrists, occasional ankle, and no joint swelling etc., was discharged - did get physio referral and hand supports. GP/s have lost interest because of being referred to Cardiologist, but they are only interested in treating heart symptoms. Not sure how conclusive Pheo test was - 24hr urine, but didn't keep refrigerated, and wasn't done when symptoms occurring. When bloods and urine tests take 1-2 weeks to get done, and by then feeling OK, it's hard to get diagnosed. Can't ask GP for referral, cause don't know who I should be referred to. Frustrated!!!

  • Did the rheumatologist only look at your joints and rheumatoid factor, or did you discuss all the other symptoms with them? If you feel your GP won't refer you to anybody then you may need to change GP. It is unlikely you'll get diagnosed by them. A rheumatologist would normally diagnose lupus.

  • Hi Pliddel, I think you are entitled to ask your GP to refer you to a different rheumatologist if you have ongoing synptoms with no explanation. You can have more than one condition of course and the AF would not

    explain the sore wrists. A rheumatoid factor of 40 is a clear positive so I would keep pushing the GP for a referral and don't give up until you feel you have some explanation - even if it is osteoarthritis. More can be learned by blood inflammatory markers and a full autoantibody test as well as ultrasound to pick up inflammation. Trust your instincts if they are telling you there's more to this. Pester your GP - its the only way for many of us. Twitchy

  • Thanks Twitchytoes and Paul. Have tried changing GP, but no other surgery will accept me, so I'm stuck (my wife has also had enough of them). Will have to go back to GP, possibly put in a complaint. Last time I went, GP questioned why I arranged the appointment (it was to discuss the results of latest tests), she virtually ridiculed my symtoms and said many people have irregular heart beat. Felt hypercondriacal. Don't want to go down the complaint route, but totally fed up. In the Rheumatologists defence, I was referred for my wrists, no other symptoms were mentioned by GP or by me.

  • Hi Piddell

    I really sympathise with you. I've had various symptoms for several years that point to lupus but I only recently put them together. I seem to recover fairly quickly from bouts of fatigue, but have discomfort in my lymph nodes all the time (which seem to lessen but don't disappear completely with high doses of vit D3 - as I have v. low level of vit D.

    At the moment I am in some sort of flare up state (extreme stress at work and home life) with one big hot flush that's been going on for 3 days now - burning sensation on my face as if I got sunburnt, joints on my fingers (only right hand) red and stinging - but no swelling (though they are getting more nobbly all the time. Other joints also painful intermittently). As you mentioned the heart flutter I sometimes get a sensation in my chest like a palpitation and have a small lump that appeared about a 2 years ago on my foot - not painful, doesn't grow but its there.

    I am lucky to have good GPs in my surgery but so far any suggestions about rheumatoid arthritis which was what I thought this might be - were dismissed as the blood test came back 'normal' (that was 3 or 4 years ago) - painful joints - well at your age (59) it's an onset of osteo arthritis.

    My last visit to the GP about this was last summer - with persistent skin rash around my nose and mouth and the lymph nodes discomfort. I asked if these two were possibly linked but was told 'absolutely not' - cream for the rash has not helped at all, and was told that v low vit D may be causing 'all sorts of aches and pains' - the blood test was 'OK' otherwise. It's only through the vit D deficiency that I linked the symptoms with lupus by googling various sites and checking symptoms.

    I've just not had time to go back to my GP but hopefully if I say that this might be lupus they will send me for more tests. Paul from Lupus UK has been very helpful and the info he sent was really useful. Really hope you get referred for further tests by your GPs.

    I read the posts on this site regularly now and know that so many people are affected so much more severely than me - I am just concerned that I am stuck with these symptoms and I Know they are real but like many people with undiagnosed conditions I feel foolish to keep going back to the GP.( Usually when I make the appointment the symptoms lessen!)

    The concern is also about what damage might be happening internally and am I doing everything I can to help myself. ( Unfortunately I just cannot avoid the stresses in my life at the moment) but reading stories such as yours makes me more confident that I should go back to the GP soon. Good luck with your diagnosis!

    One thing I have started recently is drinking large quantities of filtered

    water - there is a very interesting article in Nexus (March/April edition) and long term conditions.

    All the best

  • I hate it when I'm made to feel a hypo. That usually galvanises me to do something like nothing else does! Twitchy.

  • Hi pliddell

    My lupus started with symptoms like fatigue and sore wrists,I was in Edinburgh at the time and for 2 years the GP really ignored other symptoms infections,mouth ulcers ,etc and then a young GP on placement at the practice ,picked up that my white blood cell count had been low for over 2 years .I was sent to a haemotologist and was diagnosed with lupus etc.So I would persist I know its difficult!Best of luck with it

  • Thanks everyone for the support, still not quite sure what or who to ask for if I drum up the courage to go back to the doctors - yes I do feel like a hypochondriac. It has helped to share our "ills"

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