How to get your doctor to take you seriously? - LUPUS UK


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How to get your doctor to take you seriously?



I went to see my GP, the other day, as I have a butterfly rash on my face and have had it some time, it got much worse on holiday, as well as rash all over my arms legs and chest that bubbled, it has left marks on me, from last October. I was not burnt, I never do, I am so careful in the sun.

The face is mainly discoloured rather than a rash. I get joint pains, especially at night, but no swelling, my whole body hurts, almost like flu, and my body keeps burning up, and I get terrible night sweats. Not the menopause, I finished it years ago, very early, and am on HRT.

I keep feeling nauseous, and my concentration is terrible, my memory not much better. I have back problems, which are worsening, and restless legs, also I have very frequent ectopic heartbeats, which are getting worse, for which I am on 5mg of beta blockers a day.

I feel very weak, and exhausted, and also very shaky, I get white fingers and toes that eventually turn red and burn, also tinnitus which is getting worse. My muscles get tired and painful so quickly it almost takes my breath away..

Also I get ibs like symptoms, although the GI guy I saw insists it is not that. I just feel so ill, and the pain makes me feel desperate at night particularly.

I also suffer with dry eyes mouth and skin, my nails are flaking to the point I think they will just be down to the quick soon. I have never had this problem with my nails before!

My Doctor just said it is a reaction to the meds and changed them yet again and gave me stronger Beta blockers. From 1mg to 5 mg, I started them yesterday, but felt like this before.

I do not know what is going on, I thought I would put the question here, as I have noticed others on here with similar symptoms.

I may have missed some things out, I am having difficulty remembering what I want to write.

I hope someone has some ideas, it seems to me that one way or another everything gets put down to my back problems, and feel that something else may be going on.

Sorry I have gone on a bit, but I feel better for getting this out.

Thanks for listening, and I hope you are as well as can be,


22 Replies

Hi Caz - I'm sorry you are having such a rotten time. I am not sure what your question is - do you have a diagnosis of lupus? Do you think you have lupus? Did you doctor say you haven't?

One thing did jump at me from your post though. If you have lupus, you should not be taking HRT. Women with lupus have an excess of oestrogen - so supplementing it as well is not a good idea - as high oestrogen can be associated with flares.

Hope you get to the bottom of it soon. Good luck.

Hidden in reply to Hidden

Hi, Maggie S

I have not had a diagnoses of lupus, my diagnoses so far since having an accident 4 years ago are, Degenerative Disc Disease, with torn and bulging discs in in the Lumbar area, inflamed Facet Joints, and narrowing of the foramen and more recently possible inflammatory Bowel Disease, and last April Restless leg syndrome.

I saw a Rheumatologist in December because my GP wanted to be sure I did not have RA, he was totally dismissive, as my bloods at that time were clear, except for exceptionally low Folic acid levels.

He did say it was probably related to my back problems, but he prescribed Celebrex in case of another Flare. I will call my Doctor and ask to be referred back, although I am not sure if it will help, the Specialist did say to come back if I have another Flare.

I hope this makes sense, I had no idea if I have Lupus or not, I just wondered as I seem to have a lot of symptoms in common with others on this site, and also other sites and my GP does seem to think an autoimmune thing could be going on, although he still blames everything on my back problems

Thanks for the info about HRT, I had no idea!


letslaugh63 in reply to Hidden

I never knew that about oestrogen either Maggie and I have basically same symptoms as cazbaz but I have had a complete hysterectomy. my doctor thinks I have autoimmune disease rhuemy I saw hasn't got a clue but did say oesto arthritis and I need to see dermatologist for rashes other than they couldn't give a toss and never had time to get diary out to ask about other symptoms.x

Hi there. I would contact Lupus Uk Head Office and get them to send you some leaflets which have lupus indicators on. There are 12"internationally recognised indicators which include among many others a positive ANA bloodtest and a Positive Double Strand DNA test along with butterfly rash etc. Highlight the ones you have and take it to show your GP. Many GPs have knowledge gaps regarding lupus. They hardly touch it in their training. Hopefully that will generate a referral to rheumatology who can make a proper assrsment of you which it sounds as if you need. Any problems with hairloss, headaches or chest problems? Good luck. Many of us have a long journey to diagnosis. Your symptoms could be a number of other illnesses to which are less devestating, so fingers crossed x

Hidden in reply to SarahHeney

Hi Sarah,

I will do this thank you.

I had some hair loss when the last flare occurred although thankfully it has improved until now, I get a lot of headaches, and a bad chest for about 7/8 months now. I had antibiotics, but they have made no difference.

I had blood tests 6 months ago, after my flare had calmed down but I am not sure what they tested, except for folate, iron and RA.

My Doctor put me on high dose folic acid as I was abnormally low in this.

I hope I do not have Lupus, I have several members of the family with it, mainly cousins, and know how awful it is.

Really I just want to be sure I am getting the right treatment, as I do fell really ill now.


Ask your GP to refer you to a rheumatologist, tell him that you want to check everything, just in case. Emphasise your joint pain - for some reason GPs associate joint pain more readily with a rheumatologist than autoimmune diseases (that scares them in any event because they know very little about it). Also your white fingers etc, that suggests Raynauds, even more of a reason to see a rheumie. Keep it matter of fact and try not to give the GP the whole list you've given here, otherwise he will think you're exaggerate (sadly that is the default reaction when GPs are faced with too many symptoms). Focus on max 3 and keep it focused on joints. Then, when you get to the rheumatologist, separate your symptoms into the categories set out for identification of lupus (you'll find those on or lupus uk website) - that way you are bringing order into your argument and makes it easy for the specialist to address each one.

Let us know how you get on. Good luck.

Hidden in reply to Purpletop

Thank you Purpletop,

I will follow your advice, I really am concerned now as I am having a pretty bad flare, and the pain at night is terrible. If I do have it, I just want to ensure I am getting the right treatment, and not have everything blamed on my back.

It Could easily be a number of other things, but I just can't seem to get through to my GP how bad it really is.


Hi cazbaz

So sorry to read how much you are suffering. The others have given you great advice, but I would just like to add this. When you phone head office, also ask if there is a support group near you, & get in touch with them. You don't need to be diagnosed to join the group.

They will give you great advice & support, mine have been amazing. But most importantly they will tell you who are the best rheumies in your area. Your last one didn't sound at all helpful, so it would be good to know who the experienced lupus patients recommend. Then you can ask your GP for a specific referral.

Or for 'the best of the best' go for one of the lupus specialists listed on the St Thomas's lupus trust site. This may involve some traveling, but I'm sure would be well worth it.

Very best wishes, & please keep us posted how you get on. X

Hidden in reply to roobarb

Hi roobarb,

This is great info, I thank you for this so much, I will now be looking up everything I have learnt from this, I am so glad I asked the question, I was in despair and reached out.

You have all been truly amazing, and such a comfort, thank you!


roobarb in reply to Hidden

You are very welcome Caz. I only discovered this site at the end of last year, but it has made such a difference to my life. I hope you get some help from the medical professions asap. X

Hi all i noticed noone ever recommends a dermatologist yet i was diagnoised by my dermy NOT rheumy, my rheumy took bloods pulled me about ummm and ahhhrd told me i was over weight at the time i was size 12 !!!!!), id never even heard of lupus until i was diagnoised, my dermy took biopsys from my scalp as i lost the top half of my hair,my legs and thighs were covered in hives , everywhere else on my body was covered in wot i can only explain as plaque like discs(i now know that this is subacutanious lupus) she took a total of 6 biopsys and 6 weeks later i was diagnoised after suffering (like many of us here) for 12 years, since then i have seen 2 more rhuemys and im told i have fibro as well as , sicca syndrom/raynaulds/emphazema/copd/shacking leg syndrome/burning tongue/chronic fatigue/chronic insomnia, i truely believe that YOU have to insist on bloods/biopsys 2nd opinion i know its hard as most of the time you have no energy/forget everything/constant pain but my persistance i believe got my diagnoises, which im told by the way has progressed to SLE deep joy, so i urge u DONT GIVE UP x

Hi kittykat still waiting for app to see dermatologist dep as rhuemy suggested that's where I have to go.Have had a biopsy done before when I lived in Spain sadly left before we got results,but hopefully I will get some answers this time :-) x

Hidden in reply to kittykat68

Hi Kittykat,

Thank you for your answer,

I know in my heart that I must persevere, this is unlike any back problem and I have had those since a young child. I am going to go to a different doctor tomorrow, if I can to get a fresh pair of eyes on this, and will follow the advice on here, for which I am so very grateful.

I am glad you have had your diagnoses, at least you can deal with it with some knowledge


I am truly sorry though, for your suffering.

Hugs, Cazx

roobarb in reply to kittykat68

My lupus was diagnosed by a dermatologist as well. X

Hi cazbaz sorry not got any answers for you just letting you know your not alone x


Thank you Letslaugh, I am glad you commented, although it is sad so many are suffering.

Take care of yourself,


hi lets laugh how long have u waited for your dermy hun u didnt say hang in there though its worth it x roobarb your the only person ive ever known apart from me to say ur dermy diagnoised you hope your hanging in there x and cazbaz i feel for you hun i come on this page and it is sooo helpful most of the time x


I am overwhelmed by the response kittykat, it is such a comfort!

Thank you for your kind thoughts, I will let you all know how I get on, it will probably take a while by the sound of things!


Hi Cazbaz , I am having trouble in getting a diagnosis even from my rheumy. He referred me to the dermy who was very dismissive and did not ask any questions. He wanted to treat me for rosacea and I explained that I had taken all sorts of medication and used every cream and assortment of medications over the last year and none had worked. He then reluctantly decided to do a punch biopsy which he insisted was going to scar my face. Iwasnt sure whether he was trying to put me off having a biopsy. I explained I could not go on as I was so I did not care about scarring - my face already looked terrible with the butterfly rash. I am having the biopsy on th 29th April and it cant come soon enough., I need an answer as the pain in muscles/joints, fatigue etc are becoming intolerable. I was put on Butrans pain patches yesterday to help with the pain and also take Plaquenil. I find it very sad that we have to fight so hard to get a diagnosis when we feel so ill.

So sorry for ranting on but it is actually very reassuring to hear others similar struggles. Lets hope we all can get the right treatment that we need to help us get on with our lives.

Thanks for listening and take care and keep healthy.

Jan X


Hi Jan, I hope you get a diagnoses soon, it is so worrying not knowing.

My face is not too bad, it gets worse with flares or the sun, and calms down in between, although never goes completely, and I can just about cover it with make up. It must be awful to have to really bad, mine is more like a discolouration, although in the sun it does swell and my skin on my arms and legs bubble.

As you say it is a relief to know I am not the only one, and some of these specialists really are not interested if you are not a clear cut case.

Truly I believe that if my ears dropped of it would be put down to my back!

Good luck, Cazx

The way I got diagnosed about 6 years ago, I did lots of research as we all do..... Convinced myself it was lupus found out who was the best person to see and where. Then boldly went down my doctors bearing in mind id been down there so often with lots going wrong I think he'd had enough... but told him I think I have lupus and want him to write a letter to St Thomas Hospital in London and refer me, and wasn't gonna take no for an answer... And thankfully he did. As went up there and was diagnosed... Sadly best day of my life as I wasn't going mad.... But you gotta fight for it as most of us Lupies have but don't give up. This is only the begining. We are all here for each other.. My advise is read up on lupus and try and remember as much as you can (I had no hope before cause I I read things and forget straightaway, and would read the same thing over and over the again lol, have terrible brain fog lol) Always make a list when you see a doctor and take pad and pen for answers. Keep smiling and laughing xx


This is good advice, I will do this next time I go. I have been laid up with a torn disc for a week, today is my first day out and about, so I will see how it goes. I will probably have to go and see my GP, and I will make a double appointment!

In the meantime, I will make a list and do some research.

Thanks so much,


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