Confused! :/

Hi, I am new to this forum and hoping for a bit of advice.

I am getting very concerned that the symptoms I have had for the last two years could be due to lupus, I started to get a rash on my wrist which exactly two days before it appears I feel exhausted and literally can't keep my eyes open,whilst the rash is there I feel breathless, tiered, disorientated, muscle pains my arm feels like a dead weight. the last two times I have had this rash I've got a strange rash on my nose and cheeks, once the rash has gone which can take a few weeks to a month I still feel ill, tiered and i'm always cold I find myself on a permanent diet to keep my weight stable as I put weight on far too easily and have mottled skin on my arms and legs constantly.

The doctor sent me for blood tests they took 6 lots but the doc receptionist told me they've come back normal, I've been trying to make an appointment to discuss these with my doctor but they never have any appointments available :( My aunt has also got lupus. I don't know where to go next.

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  • Hi linz84, the fact that lupus is in the family, should be considered by your GP. Did your aunt have a battle to get diagnosed ? Maybe you should talk with her and she can advise you where to go from here. You need to see a rheumatologist who specialises in lupus. Take photos of your rashes and keep a diary of your symptoms. Bloods do not always reflect the activity going on and a good rheumy will take this into consideration. Autoimmune conditions can run in families, so it could be you have something else. Keep looking at this site and you will read people's stories of their struggle to get a diagnosis. If you can afford a private one off, consultation with a lupus rheumy, then I would seriously consider this. Your GP will have to refer you though. If the rheumy also works at an NHS hospital, they may transfer you to their NHS clinic thereafter. It's what I did in the end. Good luck, and don't forget to talk to your aunt.

  • Hi Linz84,

    I am sorry to read that you're not getting the answers you need from your GP. Is there another GP you can speak to in your practice to get a second opinion? If you think it would help i can send you an information pack regarding lupus symptoms and diagnoses, maybe you could take it with you on your next visit to the GP?

    Just email me at hayley@lupusuk.org.uk with your address and i will send one out to you.

    Best Wishes,

    Hayley

    LUPUS UK

  • Hi, thank you for the replies :)

    I have managed to change to another doctors surgery so fingers crossed I'll get some answers now, my last doc was rubbish. I had a telephone appointment with him on Friday to discuss my results and the next steps I need to take etc.. and he didn't bother to ring me :( I'm worried now though that even though I wasn't getting anywhere with him that i'm going to have to start the whole process all over again!!

    I don't know what to do when I go to the new doctors do I bring up about my thoughts about lupus or do I just tell them my symptoms and hope they figure it out themselves?? I just don't want to sound like a hypochondriac and then they don't take anything i'm telling them seriously? also can I ask to be referred to a rheumy or will I have to go to a dermatologist first because it's rashes ? can't really afford to pay privately :(

    does what I described sound to you like it could be lupus or am I being bit dramatic?? :/

    Will speak to my aunt about it.

  • Maybe take some photographs of the rashes to show the consultant(s), as you may not have a rash by the time you get to see an 'ologist, (e.g. see my avatar).

  • Thank you for the reply, I've now been refered as urgent to the rheumatologist so fingers crossed I should have an appointment in a couple of weeks. I've taken pictures of all the rashes over the last two years so will take them with me to the appointment. The rash on your avatar looks very similar to what I get on my wrist.

  • In my case the rash only occurs on sun-exposed skin which is also rubbed by clothing,

    i.e. collar and cuffs , (not face). That rash distribution is called "Koebner phenomenon", which does occur in Lupus, but is not specific for Lupus ... en.wikipedia.org/wiki/Koebn...

  • Good news, take it new GP was ok then. It will or should be a long appt. they will take a lot of bloods and ask you lots of q's. Make sure you list your concerns as they throw you off course sometimes and you leave, forgetting to ask/tell something. Of course show piccys, good that you had the foresight to log them. Good luck, let us know how you get on.

  • [quote="linz84"]... mottled skin on my arms and legs constantly...[/quote]

    Mottled skin can be something called "livedo reticularis", which can occur in Lupus but is not specific for Lupus. Livedo reticularis can be a manifestation of APS, (aka "Hughes Syndrome"), which is common in people with Lupus, ( there is a blood-test for APS ).

    en.wikipedia.org/wiki/Lived...

    en.wikipedia.org/wiki/Antip...

  • Thank you for all the replies, I had my appointment yesterday and it was definitely a long appointment had a chest xray, 10 bloods taken and urine tests I also learnt my kidneys are very sore and the glands in my neck are huge :( he's also referring me to the dermatologist and when the rash comes back I'll be having a biopsy of it.

  • Thanks so much for update. Hopefully they will get to the bottom of it all now. Wish you well soon. X

  • It was from a biopsy the dermatology dept took from the rash on my Knee !! That eventually gave me a long waited diagnose of Lupus ,,,so when you go ,,show them the very last place your rash has appeared . Hope all goes well ,, hugs x

  • thank you so much for the support, it's so much better speaking to people who understand!

    I feel like i'm going totally mad at the moment everyone around me keeps saying ''you'll be ok it'll be nothing'' and if i hear that one more time i'm going to scream!!!!! I don't know whether their all worried about me and they think if they say things like that it'll make me feel better because they don't want to stress me out by showing their worried or they genuinely don't think anything is wrong! :( people don't seem to realise how poorly i actually feel, everything is an effort and really struggling to force myself to go to work at the moment :(

    I also keep having weird feelings at the moment like everything goes in slow motion around me, feel like i'm getting worse and I'm sick of looking like a panda my black circles round my eyes are getting bigger by the day.

    my next appointment at the rheumatologist is the 22nd of April!!!! :(

    sorry for venting to you but needed to have a moan.

  • Hi linz84, I am guessing no meds were prescribed at your rheumy appt? If they were then they can take 3-6 months to kick in. Once you are on the meds, you should see some of your symptoms lessen to a more manageable level. You won't be cured as you know, and it may take a bit of experimenting with meds, but I hope they sort you out soon. Can you force the rash to appear, ie...exposure to the sun. All this investigation needs to be done now, rather than the Drs, 'wait and see approach'. Loved ones are probably trying to convince themselves, as well as seeing this as being supportive to you. My mum desperately hoped my problems were all in the mind!!! When I was diagnosed and had calmed down enough to hear her explain, she said that the thought that I would just need some Valium to make me better, was in her opinion better than lupus. I kind of understood and forgave her. It must be so hard trying to work too, especially with the disorientation. Again, report this to your new GP, who hopefully will contact the rheumy for any results so far and a possible, earlier appt.

  • Hi 6161! No meds were prescribed, the rheumy just said it could be a wide range of things at the moment so can't give me anything until they know more. It might not even be lupus whats going on with me but all my symptoms seem to be consistent to lupus :(

    I have been on the sunbed this weekend (probably a stupid thing to do) to try and get the rash to appear the spots on my face appeared but the other rash doesn't seem to be coming out it's typical when you need it too!!

    On Saturday and Sunday I actually felt really good and had energy for the first time in ages and was so happy with myself because I managed to stay awake till 10pm haha! but today I feel rubbish again :( Is that normal??

    I have only mentioned my fears that it could be lupus on this forum because i'm worried if I say anything about it everyone will just think i'm being an hypercondric.

    I can kind of understand why their all acting how they are buts its so frustrating!

    I am going to ring the rheumy tomorrow as he only does the clinic on Tuesdays and try and find out about my blood test results etc.., what will happen if they come back clear??

    it is definitely hard trying to work too especially because i work with children so its physically and mentally draining under normal circumstances but i can't really go on the sick because for my reason for sickness would just have to say ''have not got a clue'' which I don't think would go down too well with my employer!

  • Hi linz84, take photos of any rashes to show. Also I am hoping that this rheumy does know a lot about lupus. Usually, they give you meds to see if they help, this also goes towards the diagnosis, if they do. Some rhuemys do take physical symptoms into consideration, even if bloods are normal. If your inflammatory markers are raised, this does tell them that you could be unwell. Unfortunately, these would also be raised for influenza. This is why you have to get as much evidence as you can. If you get anything to see, ie.... Swelling, show your GP so as he will put it on your notes. As for your work, can you not say, you are under investigation for a possible auto-immune condition. That is not a false statement. If you don't get anywhere with this rheumy, ask Paul,(admin on this site,) for a list of lupus speciallist rhuemys near you. A lot of sufferers have had to do this. I did laugh at you on the sun bed. Don't do yourself any further damage.!!!!! Ideally, I hope you get over all this and don't have lupus or anything else, but until your body behaves likewise, you have to put yourself through this. By the way, yes, you can be good one day and not the next. You can be well in the morning, and by midday, feel awful. That's the unpredictability of this disease. Let me know how you get on. X

  • Hi have you had a thyroid test done.i had mottled skin putting weight on generally feeling ill .got a under active thyroid few year later lupus

  • Hi 6161! Thank you so much for all the help and advise it really means a lot and I really appreciate it :) x x

    I don't really want to go on the sick at the moment I need to try and carry on for as long as I can because i'm worried if I use my sick entitlement now and I carry on getting worse and really need to be off they might be able to sack me and really can't afford to loose my job :(

    I rang the rheumy yesterday for my results and the receptionist said she's going to make sure he sees them today and he will probably ring me. If I get no luck I will ask Paul for the list as really need to get to the bottom of this.

    hahaha :) I know i'm mad going on the sunbed but we don't get much sun in England and everyone kept asking and the rheumy asked me too if the rash came out in the sun so thought I would test it and it does!

    last night my cheeks went really bright red it just came out within seconds and felt like my face was burning, we tried to take a photo of it but the camera didn't pick up on the full extent on it.

    Thank you i'm hoping it's not too it scares me thinking it could be :( its so annoying because I really look after myself and I'm a bit of a health freak been going gym for 10 years we eat clean nothing processed don't eat sugary things don't smoke don't drink alcohol and i've ended up like this when others really abuse their bodies and are perfectly healthy!!!! x x

    Hi miacat! at first I was convinced it was my thyroid but I had a thyroid test last month and it came back as the doctor said "exceptionally normal"

  • I have received a letter today from the rheumy all my tests have come back normal so just need to go back for another appointment in April. I feel like a complete hypochondriac now can't believe I can feel as bad as I do and the tests be normal?

    I've also started a diary of all my daily weird symptoms now. Xx

  • Hi linz84, April is not too long to wait. If you are not happy at next appt, then get that list from Paul. At this stage, they are at least keeping your next appt. Don't despair as this is the norm for a lot of patients to have negative bloods. You have to follow it through with this rheumy, and see what he says. The meds prescribed are mostly for life, so he/she, has to be sure. The diary and photos are a must, so keep on with that. I wasn't there at your appt, so at this stage I am giving them some credit, but if you are fobbed off at next appt and still feel ill, then look elsewhere. I know how humiliating it is to be given negative bloods. You feel a fool and a liar, which then turns you angry with everyone. I still sometimes get bloods like this. They don't always reflect the truth. Obviously I don't have to prove myself anymore, but it took about 7years to get there !!!

    This site is full of people like yourself who are ill but undiagnosed. Nobody wants lupus, but it gets to the point where you just want to be believed. So when it is finally diagnosed, we are, 'over the moon'. It's all wrong. Keep your chin up, see what rheumy says, and let us know. I don't know if you have lupus, I'm not a Dr. But I do believe you are suffering, so don't worry about other people, if they love you, they will stand by you. Good luck. X

  • Thank you for the reply .

    I've had to ring up the rheumy today to ask for an earlier appointment the receptionist is going to get one of the nurses to ring me today, I can't carry on like this any longer really struggling with work now feel like I'm going to collapse all the time and just want to cry constantly.

    I feel awful moaning to you about all this because you've obviously been going through this and struggling for a long time.

    I know exactly what you mean I definitely don't want it to be Lupus but just want to feel like my 'normal' self and get some sort of

    Life

    back instead of this horrible existence I seem to have at the moment.

    When the rashes started at first all these symptoms would mostly go when the rash went but this time it seems like it's never going to end tomorrow it will be 4months. Xx

  • Hi linz84, so sorry to hear you are still symptomatic. Has nurse called you yet, and you said previously that you would talk to your aunt. Was she helpful at all ? It is such a tough thing to try and cope with. In my opinion, it would be worth seeing if any basic meds could be prescribed, to see if they help at all. We share so many of the same drugs, for lots of autoimmune conditions. Just hang on in there girl, it's all you can do.

  • Hi, the nurse rung me back but she can't give me an earlier appointment until my pulmonary function test is back and I've been to see the dermatologist she said he wouldn't be able to do anything for me until he's got all the information he needs to make the diagnosis?? I was literally begging her on the phone to try me on some medication but she said they can't :( I ended up crying to her and don't think she could really understand what I was saying in the end because I was so upset she did say though that I need to go to my gp this week and ask him to put me on the sick she said I need a complete rest to help my body try to bounce back?

    I haven't spoken to my aunt because I've not seen her for so long it feels bit strange talking to her about this, also I don't really want my family knowing that I'm worried it could be this because I know what all their reactions will be like. Xx

  • I don't know what to say anymore !!!! You certainly get 10 out of 10 for effort. It is true, you probably need time off work but I know you are reluctant to do this. Your PFT, is that the lung test ? I had this last September. Why have you had that done. I don't remember you mentioning your breathing. Sorry if I have mis read it. I know you have had enough ' knock backs,' but maybe GP is the next step. Let me know how you get on. Take care.

  • Awww I'm sorry :) I know I'm going on alot and to be honest it's really out of character for me I'm not usually like this :/ just getting a little neurotic I think with all this.

    I am reluctant because I work with children I've literally got 7daysleft in work before its the easter holidays then I'm off for two weeks anyway so really trying hard to last until then today has been a pretty bad day though keep going really light headed and feel like I'm going to fall just had to sit down half way up the stairs because because felt like I was going to fall down them.

    Yeah it's because I'm really breathless

    also had a chest x ray but that came back clear, hope everything came back ok when you had your test xx

  • Don't apologise. I feel I should. After all you have taken every bit of advice to still be left in limbo. Anaemia, can make you dizzy and breathless. This can be caused by lupus, as mine is. My PFT wasn't good, funny as I thought I did well. Have had c.t scans and my lungs have been affected by lupus and meds. Please don't panic that this is your prob. Your PFT was normal. If you do visit GP, get them to test your Ferritin. This is the actual level of iron that is in your blood. GP will probably say, your blood count is normal, but you can still have a low Ferritin. I know this for a fact as I have had 2 sets of iron transfusions in the last 5 years. On each occasion, I had to ask for the blood test. Stress will exaggerate any condition, and though it is hard, you have to try and avoid it. Working with kids is not the ideal stress free environment. I always say, if I had got my dog first, I wouldn't have had the kids !!!!! Lol... Well I will leave you in peace now. I am always here if you want to have a rant. Roll on the Easter hols. Please keep me posted.

  • Awww thank you :) it's been a big help being able to talk to you in my moments of madness think my fiance is getting fed up with me going on haha!

    I've not had my PFT yet but will let you know how it goes. I'm sorry to hear your lungs have been affected :(

    I've just had another look at my letter with my results from rheumy and my ferritin has come back at 41 what ever that means?? he's wrote it's 'normal'

    It is very hard to avoid stress I have definitely noticed when I have a bad day at work or in general my skin goes bright red and blotchy my cheeks go bright red!! it's horrible!!!

    I can't believe i'm moaning to you about all this though, I've only been going through all this a very short space of time compared to you, you definitely get a lot of respect from me.

    Haha awww bet you love them really :) I've not got any kids so thankfully I get to just leave them at work don't need to come home to any kids too haha although the rheumy was very interested in the fact I've never had any kids and never had any pregnancies for some weird reason haha!!

    can't wait for the Easter holidays they can't come soon enough, will keep you posted xx

  • Hi linz84, am I right in guessing that you are, or will be 30 this year ? If so then I would query your bloods. I'm not a doctor as you know, but I was 42 when I had 1st, iron transfusion. My ferritin was 6. The haematologist told me that a woman of my age should have a reading in the high hundreds. My last transfusion has now brought my levels to 256. The range is 18-370. So yes you are in normal range, but very low for you. Iron tablets should be all you need, but I definitely would discuss it. That was only 10 years ago, so I don't think this info is too out of date. Yes I do love my kids really, and on that subject you should be tested for APS/Hughes syndrome, as this can affect your ability to have kids. Oh well, it's April on Tuesday, nearer to your appt. good luck with PFT, and try and enjoy the Easter hols. X

  • Hi, I was 30 (feel about 90 though) a couple of weeks ago, I will definitely mention it when I go to my appointment, don't really want to go to the doctors I'm trying to avoid going because I think he'll take one look at me and he'll put me on the sick I look bloody awful!!

    Yes only three weeks on Tuesday till my appointment can't wait!!!

    Thank you! I will be having two weeks in bed :) look after yourself will let you know what happens xx

  • Hi just a quick update I went to my appointment yesterday and he has said that I've got a lot of symptoms of lupus but my blood isn't showing it so he can't say whether it is or isn't but agrees that I'm obviously unwell so he has started me on hydroxychloroquine and will have another appointment in two to three months to see if there working. He's also referred me to physio to get my body going again because complained to him about not being able to go to the gym.

    So glad he's taking me seriously don't care about a definate diagnosis as long as I start feeling kinda normal again thats all that matters. Xx

  • So pleased to hear someone having a positive experience with symptoms being listened to. Hydroxy worked wonders with my energy but like you my fitness has really suffered and I've put on 2 1/2 stone !!! Good luck x

  • Thank you, think I've been really lucky to be listened to, I hear so many bad experiences on here.

    I hope it works wonders with my energy levels too, can't believe I'm actually happy to be given tablets its crazy!!

    It's awful isn't it? i absolutely love the gym and not being able to go is driving me mad I've put on 10 pounds in three months its not good. Xx

  • Go to a rheumatologist, they know all the proper tests, good luck.

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