Doctors and their lack of information !!!! - LUPUS UK

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Doctors and their lack of information !!!!

what is it with GPs and Consultants, just had my three month check up and thankfully my lupus is still mild as of today.

But i told him that i was having really bad IBS again and can t seem to get it under control,of course he immediatly dismissed it as not his problem and to go back to my GP.

i then told him my hips seem really sore and could it be my IBS causing it and he didn t even look at me and grumbled no er no i don t think so.

i left feeling so frustrated i just wanted him to turn around in his chair and for five minutes just listen and let me rant and moan and then give me a little advice.

i then went home phoned my friend who is a nurse at A E and she told me that if i have hip inflamation then the pain and stiffness can be felt in the groin area and the upper thigh area and the lower back and even in the bottom.which is all the places im feeling it.

my point is thats all it took was a little bit of information to stop all the worries that something else is going wrong with my body.i was having thoughts that i had gyne problems or gland problems because of the groin time i go i will make him listen he was even constantly yawning and said sorry im tired i have a young son who has kept me a wake last night.i almost said well you should try and work with lupus fatigue. GRRRRR moaning now over thanks for listening.

debs xxxx

22 Replies

Some doctors are idiots aren't they? It's like they don't even hear what you're saying to them, they just categorise you and can't empathise with you on how hard it is to feel sore and tired all day every day.

If it makes you feel better, I am also in a mild state of lupus, my rheumy doesn't want to start any medication yet, but I know I am deteriorating all the time so that might change. My hips were the first thing to start hurting back in 2008 and it has kept increasing. I have chronic pain in my lower back, as well in the back upper legs, a little in my groin/bum and my back under my shoulder blades is now a big issue, and I think it's referred pain from my lower back. All I get for it is cocodamol which only takes the edge off.

I've seen an osteopath recently, although I knew she couldn't solve my pain totally, I thought it would be worthwhile to eliminate any back pain that could be fixed and she has been a big help, my hips have improved about 30% I'd say. She said my back had been getting rigid from me holding myself stiff all the time to compensate for my hip pain. I've develop all sorts of odd ways of walking, sitting and standing to cope with the pain. I have started having monthly massages to compensate as well.

As for IBS, I have recently gone vegan and it has cleared up my digestive issues, so it might be worth your while to cut out some of the things from your diet that cause inflammation, like milk, wheat, sugar, tomatoes etc. Just go without one thing for a week and see if it helps. Hope you get some decent help soon!



sorry to hear things are getting worse for you,i understand the pain of hips but i can still do things like walk my dog i just have to except that i can t walk her too far as i will suffer.

all i wanted from my doc was advice weather i should walk a little further everyday to build up my muscles or should i take it easy,because sometimes when i walk i feel fine its not till a couple of days later that i just so confused. it makes me so sad sometimes and i feel like crying, when the sun comes out i just want to feel good and heathly.

and another thing that annoys me is just because the docs say its mild lupus it doesn t not mean we dont feel bad pain on a daily basis ,so when docs tell me that its mild i feel like shouting at them but i still HURTS. they make me feel so angry and i come away thinking whats to point.

deep down i know all this frustration does not make my IBS get any better.

i think its time for a holiday LOL



Hi tengansara, i have all the same systom as ur self, my back pain is really bad, i think i mite give cuttin out the milk and sugar. For a while 2see if works thanks x


I totally sympathise with you. What is it with some GP's and Consultants! I have had similar with now my ex-Consultant as he told me he didn't want to know my symptoms (just to take methotexrate if I wanted to feel better.) I then I mentioned I was spitting up blood and with a shrug of shoulders he said long as you don't get anaemic!! I then tried to ask a further question and was more or less told to be quiet as he could only think in a linear fashion! Cut a long story short I had enough so went back to my GP and have now got a new referral to another Consultant. If you are not listened to ask for a referral to another Consultant. All we want is a few minutes to be listened to with a little empathy.

Agree, your Consultant should try a night with lupus pains. His young child will grow up and he will sleep. We all have to live with lupus and whatever it throws at us continually.

Have you tried food testing for your IBS? A while ago I got food tested at a health shop in a non invasive way. (Cannot remember what it was called.) She got me to hold a rod and then made a circuit. Different chemicals/foods were added in a file form and she got readings letting me know what I reacted to. One of my main triggers found giving me IBS was garlic & spices. I avoid these now and am ok. Other positives that came up were MSG & marmite. Obviously everyone reactions are different.

Take Care x


what annoys me is the lack of empathy you get from gp's and consultants regarding symptoms. i suffer a lot with joint pain but the gp insists its to do with me being overweight 6 yeras ago and not lupus. anather doctor said its just the small joints that get inflammation (fingers and toes) and i know for a fact thats not true. but they are the doctors so they must be right grrrrrrrr!!!!!


hello tintin49

yes i too had the same conversation a year ago about my knees hurting and the doc said its nothing to do with lupus but being over weight, i was so upset i went straight over to his scales and got on and said really im 5ft 7 and the scale came up at 10st 4ib and i know thats a perfectly exceptable weight for my height and he said nothing.

never been back to him since. GRRRRRR!!!!!


I fully empathise! I no longer go to a GP who put my symptoms down to old age (I'm ONLY 62!) and to being overweight (I'm a size 18...not exactly obese...). Once, he spent the whole 10 minutes examining my walking stick (which had a flashing light and compass...), hardly looking at, or listening to me at all! When you think how much they are paid....this is scandalous.


I had IBS long before i had lupus. Trouble is when you have a chronic disease, they are not really interested in your diarrhoea or what causes it. I worked it out that it was the bread i was eating that was the problem. I had switched to wholemeal bread thinking it was healthier. When i switched back to white bread it seemed to ease up. I eventually gave up eating anything containing wheat. By privately sending my blood away to be tested i found out i had a reaction to other foods.


yes thats interesting i didnt know you could send blood away to get tested for food intolerance.

i too have suffered with irritable bowel for years as young as early 20s im now 42 i have tried to keep a food diary i know i cant touch fried food or certain fruits and veg as my intestines just gurgle and rumble all night, but at times no matter how careful i watch my diet it just flares up for weeks.


pinky56 I also kept a food diary as suggested by a doctor. But i found it too difficult to know which foods to eliminate. The test i did i got online and i think you get it at certain chemists. It was expensive and i don't think it's recognised by the NHS but i do think it was worth it. I suspected i had a problem with dairy in that i would get bad heartburn particually after i had eaten cream, and sure enough i had the strongest reaction to dairy.


Most Pharmacies offer this service, but it can be costly.....

I have to be careful with any fresh food/veg with "tough" skins, like cucumber, peppers, broad beans, etc. Fresh cream also gives me the "rumbles" and stomach cramps.


i agree about consultants i dont think thay no wat we go threw and how much pain we get inn wen i go and tell him how much pain am inn he just says ur lupus not active nothing much we can do go home and rest how good is that ,i told him iv started getting bad head acks and forgetting a lot he just laught at me and said its nothing 2 do with the lupus .its about time these specialist started listing 2 us cos its us who av got the illness not them and am sure we can tell them more then what thay no ,,,


I sympathise with all of you, however I have an understanding Consultant and GP. My doctor thankfully understands the illness and the consultant will listen to anything I say. He stated the other day that most patients with SLE know more about the illness than the doctors.

He considers that Lupus can interfere with other conditions or cause side effects.

I really hope that all of you find someone like I have.


I have had SLE or about 12 yrs and Fibromyalgia for about 10yrs. I also have IBS and Depression (Lucky me). I have a really good GP who listens to how I feel and I have a Consultant Rheumatologists and Chronic Pain Specialist. All have been really good when I present them with a problem (ie pain getting worse) and they always respond to help me tackle the problem. I find that the Osteopath I have is fantastic as she massages away the tightness in my muscles - its great but at £40 for half and hour is expensive.I believe that all auto-immune conditions are interlinked. I have found being a member of a support group is the best tonic there is as you can share with others who know exactly how you feel - as to the "uninitiated" you look fine therefore you are fine.


pinky GGGGGGRRRRRRR!!!!!! lol

my daughter suffered for years with irritable bowels and was sent to hospital and was seen by the " poo" doctor. the oddest thing was she was told to avoid cabbage,dried fruit,brown bread and citrus. since she had avoided the above she has never been ill with her stomach/bowels again. it did take years to get refred but they knew immediately what to do..

now one day i may meet someone who understands my lupus symptoms and does not fob me off ....


thankyou i will try and try again to get reffered to the poo doc as it does seem to be constant these days.


Yes, I do sympathise with each one having a difficult time with their doctors. My consultant and GP are brilliant, they are willing to listen each time I see them.

I always go into the consulting room smiling and I always remember to ask them how they are and about their day before I mention my symptoms and that way they can't help but be attentive to me (they have off days too) and this will remind them to focus on me as a patient.

Most of the time when I see the doctor I will say I don't understand why I am getting so much pain in my back, it only happens when I am in bed but goes away once I am out of bed and mobile. I then wait for the Dr to process what I have just said and a reply before I go on to the next symptom.

Hope this is helpful. Xxx


yes thankyou maureenpearl i do always go into docs room with a smile and am very pleasant but sometimes i think if im too smiley they think im not in much pain and not having bad anxiety about my body, its true docs have off days too, it just that our appointments are so long apart 3 months that you don t want to waste the opportunity to get everything off your chest.



It drives me mad how they don't listen, not just about lupus but everything that happens aches pains, my consultant said 'welcome to middle age.......very helpful!!!


Dont even get me started on THAT!!! I get so mad!! I do better treating myself, and after reading so many medical books its scary to count!! I knew what you wore talking about! I have a GYN and a pschiatrist and a breast doctor. I stopped going to my Lupus doctor. sorry for my spelling Lupus has taken that part over. but really get a new doctor or do what I did, I should not really give that for medical advise but it is something I had to do because It was almost to the point that I wanted to smack him in the face and say YOU DONT GET IT!! good luck to ya, Love, Krisday


Just one technical point, willow80, you might like to point out to your doc that only medicines or treatment can be a cause of side effects.

Take care x x


Hi Laughitup, I think he was referring to Lupus having an effect on other conditions we have, for instance I have arthritis and the Lupus causes inflammation. It is probably me not explaining properly!!! LOL


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