Is it lupus: Hi I am just wondering if anybody... - LUPUS UK


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Is it lupus

heather26 profile image

Hi I am just wondering if anybody could give me some advice please. I have been ill since 2006, I was diagnosed with Fibromyalgia and I have ruptured discs and other problems. The thing is i really don't think all my problems are to do with Fibro, and I am getting worse. I have read about Lupus, so some months ago I spoke to my doctor about it. My symptoms are, really bad pain in my back legs arms neck, I lose a lot of hair, it comes out in hand full's, but grows back, I only have the butterfly rash across my face when I have a temperature, but I have a permanent rash on my chest, I have night sweats, I have terrible itching, I come out in a rash if I sit out in the sun, I am so tired most of my life is spent in bed, and it is not like a normal tiredness, my ESR blood test is always raised, I think that is it there maybe more but my memory isn't that good. A few months ago I spoke to my doctor about Lupus and she said, yes you may be right, so she sent me for some kind of anti nuclear test. Went back to see her and she said yes, it is positive you have lupus, so she sent me to see a Rheumatologist. He did another test and said it is not, he thought it could be PBC, then did tests said it wasn't that. So now I don't know where I stand, had blood tests last week, ESR still high but doctor said don't know what is causing it is something you may just have to live with she told me. But at the moment I am not living just existing, I can hardly walk, feels like i am walking through treacle, I am so tired, and I am all the other things I have said. Sorry for the long post, is there any advice anyone could give me.

17 Replies

My God Heather, how can they leave you like this? Please go back to see your GP and ask for a second Rheumatologist opinion. Are you on any medication? What about pain control?

Start a list of all your symptoms as each one occurs and take it with you to your GP.

There is what is called connective tissue disease, which is similar to Lupus and can develop into Lupus (I think, I'm not an expert, only started with this July this year). Mention this to your GP to see what s/he thinks.

Please keep us informed of how you are.

Warm gentle hugs to you

Babs x

heather26 profile image
heather26 in reply to babssara

Thank you so much for your reply, I am on Gabapentin, Duluxitine, coccodamol, a blood pressure tablet, lanzoprazle, (not sure about the spelling of these tablets) I think I am going back to see a different GP after Christmas. I had breast cancer in 2009 and I saw another GP a couple of weeks ago who wanted all these different blood tests done because of my history. She said she was off for 3 weeks but to go back after the results where back and they would explain the results for me. I went back yesterday but all she told be about was the ESR, I did mention to her about Lupus sometimes doesn't show and it has taken some people years to be diagnosed, she was suprised. So when this other doctor is back I am going to go back and ask her to explain my blood results to me.

Thanks for getting back to me

Heather xx

My god sounds like me, but I'm battling my ft ATM , so u keep fighting , can u not have a blood test on your worst of worst days, I know it's hard too get out coz I've been feeling I'm not living just existing too and it's horrible, I've got all your symptoms and I spend my life in bed today I planned to go to our local town too get a few bits but ended up in bed ,my arms and legs feel like they are magnetic, I also have severe fibromyalgia where my heart goes into spasm, but my lower back is so bad it feels like it's made of concrete,stiff in morning and all day, I'm in tears coz my GP is a bitch that's another story, I'm seeing my pain management team on the 5th of Jan, I could ask him for you and see what advice too pass on, but a dear friend of mine who had lupus said test show up better if your having a bad day and try not to take any painkillers coz she told me it marks the result , good luck poppet and stay in touch

Love Claire 42 basingstoke, ps I was 21 when I had cancer so everything taken away so been menopausal for 20 years and also when a friend of mine got pregnant it took her fibromyalgia almost away so maybe it can be certain times of the month giving u different readings, I wish I knew coz I really felt like taking my own life through not living just existing xxxxxxx

Hi thanks for getting back to me, it was like I had written that post. The idea yesterday was after I had been to the doctors my hubby was taking me into town just to get a few last minute things. When I got home from the doctor I was like you just couldn't move and so hubby went off once again with a note. Thank goodness for online shopping, I have managed to go to town once Christmas shopping. I have a mobility scooter because I can't walk without pain, I ended up getting stuck in the corner of a shop because there was so much stacked everywhere. It was a good job hubby was with me, I came out of the shop in tears and said just take me home. Any advice you can give me from anyone would be gratefully appreciated. I am past menopause, so don't think its that. I also had cancer in 2009. I had mastectomy and chemo but I never felt has ill has I feel now.

Thank you for replying to my post.

Heather xx

I agree that you should get another opinion. Not impressed by GP telling you it's lupus and then telling you to learn to live with whatever you have.

I would advise you to go back and firmly tell her how your life is now and ask if she could call this living let alone continue in this way? Demand to see another rheumatologist as this is your right on the NHS. Lupus doesn't always show up in the bloods but having a positive ANA with your symptoms and a raised ESR doesn't go with Fibro. Read up using Lupus UK and go back to the GP armed with information you have learned here. Good luck!

heather26 profile image
heather26 in reply to

Thank you for getting back to me. That does sound like good idea about asking to see another rheumatologist, the one I saw would not let me say anything on my first appointment. He said my doctor had wrote everything down but he didn't think it was lupus. I tried to explain to him how I felt but he said I will ask you later, but he never did. My follow up appointment one of the other consultants hadn't turned up so he was seeing their patients. My appointment was over an hour late, but I didn't mind because these things happen. He saw me for about 5 minutes, said it isn't lupus, do you want to see me again, I said yes, didn't know what else to say and left, I didn't go to the other appointment. I will do has you say and read up on lupus so I have a better understanding.

Thanks for getting back to me

Heather xxx

Unfortunately as everyone with a diagnosis of lupus will tell you, it takes years for them to come to this conclusion. My daughter has been told she has fibromyalgia and is in constant pain and to make it more difficult, she has terrible abdominal pain that they have now said she has to stop taking anti inflammatorys as they think this isn't helping! After 2 years she has noticed her notes now have recorded, maternal mother has lupus. Her ESR is always raised but not enough apparently to call it lupus. To date she has had 3 endoscopes in the last year and every time come up with a different diagnosis. 2 weeks ago she was admitted via a&e, when the consultant came to see her he said "oh it's you". He plans to do another endoscopy! So I shall be going with her next appointment. (This is the gastrogology department) the rheumatologist is the only one who continues to monitor her and tries to help access what it going on, not sure if it helps he is the same person that I see.

You could ask for a second opinion, sometimes this is better but sometimes not. Just keep presenting yourself to the gp every time you feel unwell if that means weekly then go every week and if you could take a family member or friend that would be supportive that helps. As we all know when your feeling rubbish you can't fight your corner and don't always tell things as they really are.

You may not have lupus but you definitely have something going on, nobody feels Ill without a reason. I hope they find out soon what is causing you to feel so ill and you begin the treatment that will help you.


heather26 profile image
heather26 in reply to Chris21

Thank you so much for your reply, I am not a very assertive person, so I just tend to except what they say, but then I get home and think about it I realise what they have said. It didn't register with me till I got home she was saying I just had to live like this, then I get angry but it's to late. It must be awful for your daughter keep having endoscopy and not getting a diagnosis. It does feel like sometimes they don't believe me. I can't take anti inflammatory drugs. I really hope your daughter gets some answers, probably if you go with her they may listen to you. I think they sometimes think you copying a parent. My mum had Motor Neurone Disease, and I think they think I think I have I have that. I don't because that was awful to watch my mum go through and she was nothing like me. Until she was diagnosed she was fit healthy, going on holiday, shopping, dancing, all the things I have not done for a few years now.

I really hope your daughter gets some answers soon

Thank you for your reply

Heather xx

cuttysark profile image
cuttysark in reply to heather26

Hi Heather,

Type in seronegative lupus on the search box and you will find quite a few posts from folk who have this.

It may not be lupus but something is going on. Same thing happened to me and I have seronegative Sjogrens and PBC, it took me years to get a diagnosis.

I only had a raised ESR but horrendous symptoms like you and no life at all.

Sadly you need to be assertive, so plan what to say first and write down the main points, also take husb with you if that helps.

If you are not assertive and have negative bloods they just ignore you and leave you to suffer.

It is a sad fact but you have to keep keep asking them, and if they are useless , find a different Rheumatologist.

In the end that is what I did. At the time I had a good supportive GP which helped a lot. Sounds as if your GP is OK.

Keep fighting for answers. You will get your life back.

All the best, C xx

heather26 profile image
heather26 in reply to cuttysark

Hi Wow just looked at seronegativ Lupus and is very interesting. I forgot to mention I have Sjogrens. Thank you so much for your reply, it isn't good to know people are or have gone through symptoms like mine, but it does help other people do understand how you feel. I am going to do some reading up on seronegative lupus and make some notes, thank you.

Heather xx

heather26 profile image
heather26 in reply to heather26

Sorry I don't have Sjogrens, I have Raynauds, see I do get confused and this is what happens when I go see my doctor xxx

You certainly do have many of the symptoms of Lupus............extreme fatigue and joint pain point in that direction. Unfortunately many Drs., when they can't find out what is wrong..........then it must be fibromyalgia......WRONG. A doctor should listen to the patient and all his/her symptoms and complaints. Ask your doctor if you can be tested for Sjogrens disease (another autoimmune disorder, which requires a specific blood test). an ANA (anti-nuclear antibody) blood test will, in 2% of people with Lupus show a negative. Did you have a blood test specific for Lupus........DS-DNA (double stranded DNA). Depending on the lab (here in the States - USA) any number over 4 means you do indeed have Lupus.

I did not ask before, but do you by any chance have Raynauds Disease (your hands and/or feet often feel cold even when it is warm inside or outside)?

I am a retired M.D. in the U.S.A ...........I retired early because I developed a severe case of overwhelming took a couple years to diagnose I had Lupus so i truly understand your frustration.

Dr. S. (Steve is fine)

P.S. If you have any questions or I can be of any help, please don't hesitate to contact me. I wish you nothing but the best going forward.

P.S.S. Being a retired Neuro-Ophthalmologist I always look outside the box when it comes to a patient with a multitude of complaints. I doubt it you have either of these, but maybe you should also be checked for Sarcoidosis and Hepatitis C.

Again, good luck and let me know how things go.

heather26 profile image
heather26 in reply to vaderviper

Hi Steve, thank you for your reply, I do have Raynauds. I don't know what blood tests I have done, but I am going to make a note of what you said and ask. I will mention the other things you have said. It is so frustrating to feel like this and not know why. I am so sorry you had to retire early, so did I and I hated it. I loved going to work and thought I would work well into retirement but I was wrong. Thanks for you advice Steve and I will try and get some answers.

Heather xx

its lupus and best that you just think that way and do lots of research now. learn about flare ups, and your triggers, which I already think you have done with experience. just because a doctor says you are not sick, doesn't mean you can t be laying on deaths doorstep. that is one really big thing I learned in life.

lupus is 50% self help anyway, and looking after yourself now, with extra care, should be one of your priorities. also don't be afraid to see other rheumatologists. just don't announce to any of them that you are cruising around getting opinions. they tend to support one another. you can manage your lupus with stress management and stress-free/healthy lifestyle. exercise and diet. hone out your sensitivities and allergies, and try to stay basically healthy. during flareups, rest, and relax, and meditate and do visualizing methods to get better and stronger. and sometimes just "knowing" helps. so just believe in your self, don't wait for a doctor to confirm your feelings. that could take forever. but your life is 'right now'. the doctors will come around some time and start handing you powerful drugs that may or may not help. but lots you can do in the meantime.

Thank you so much for your reply, I have done some research but I stopped when they said it wasn't. My doctor said it was, I was sure it was, but then the rheumatologist said not. Your post is very helpful and made me realise I have got to try and believe in myself. When I spoke to my doctor on Wednesday I just told her I just need to have a diagnosis whatever it is. I will ask if I can see another another rheumatologist, hopefully one who will let me speak and not give me a diagnosis before he has seen me. It is really hard to believe in yourself when the doctors never seem to, but I will try.

Thank you so much for your post.

Heather xxx

I can understand your feelings. I actually cried tears of 'joy' (if you can believe that) when I was diagnosed. It was a bad 5 years of being treated like a 'crazy'. did nothing for my self esteem, let alone my physical health. so yes, I remember needing that diagnosis too

Hi heather26,

I'm sorry to hear that you are struggling with these symptoms and experiencing difficulty getting a satisfactory diagnosis. It may be worth asking your GP to refer you to another rheumatologist for a second opinion, perhaps one who specialises in lupus. If you'd like to let me know what area you live in then I could tell you who may be nearest to you?

If you would like more information about lupus and how it is diagnosed you can request or download our free information pack at

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