Does this sound like Lupus?: Sorry to post random... - LUPUS UK

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Does this sound like Lupus?

TennisCat90 profile image

Sorry to post random questions, but I would be interested to hear opinions from those who know more about it than me!

I had some blood tests done back in early 2020 as I had lost a lot of weight and my FBC kept coming back with low white cells and low haemoglobin. They tested ANA which came back positive, and then the ENA, some of which were also positive. At the time I was feeling extremely tired and I kept getting swollen and aching knees and wrists without any clear reason.

On the basis of the bloods, I was referred to a Rheumatology lupus clinic and should have had the appointment in May, but it was cancelled because of Covid-19.

I'm now back at work (teacher) and after only a week, I was completely wiped out. Yesterday evening I just fell into bed and slept and had to call off work today because I was hurting all over and feeling dizzy, etc.... I know it sounds overdramatic, but I felt like I'd run a marathon and not slept for a week!

I called the GP and luckily got a telephone appointment. They were looking into it and it seems like my referral has "vanished" after the cancellation, so they re-referred me.

Does this sound like I should be needing the Rheumatology appointment? I don't want to make a fuss about nothing but honestly.... I can't carry on like this! I don't know how I'm going to get through it at work and I don't have a basis to take time off because there is "nothing wrong with me" on paper at the moment. I've lost so much weight that my BMI is 14 or something ridiculous and even though I've taken the iron tablets exactly as directed, I can't get my blood counts up at all.

Who knows how long it will be until the appointment and I'm worried that even then, I might be chasing a dead end. It could just be stress - I don't know!

Thank you for reading.

17 Replies

Hello there.chronic fatigue is a big part of AI illnesses.i wouldnt say you are over reacting or chasing a dead end.i would push for a rheumatology appointment gps dont know how to deal with complex issues that AI presents.you need rheumatology to do more indepth bloods DS-DNA, ANA,compliments,immunoglobulins urine and possibly thyroid or b12 then take it from there.do you react to the sun ? Have mouth or nose ulcers? Dry eyes and mouth ? Brain fog or concentration issues ? Try not to stress in the meantime be kind to yourself if you need to sleep ... sleep x sending you a welcome hug x

Thank you, that's really helpful!

They did the ANA already, and it was positive with a 1:320 titre (no idea what that means).

And the ENA was like so:

ENA Profile

JO-1 Ab (ENA Profile) NEGATIVE

Scl 70 (ENA Ab Profile) NEGATIVE

SS-B (La) (ENA Ab Profile) NEGATIVE

Ro 52 kd (ENA Ab Profile) Positive (+++)

SS-A (Ro 60 kd) (ENA Ab Profile) Positive (++)

SM (ENA Ab Profile) Positive (+++)

Again, no idea what any of that means!

B12 was a bit low, thyroid was normal. I get a bit of a rash in the sun sometimes, but I am very pale skinned, so don't particularly read anything into that.

I would be happy to sleep for about a week at the moment! But unfortunately with work, I just can't! I need to be firing on all cylinders and I am not... and that's what is stressing me out!

KayHimm profile image
KayHimm in reply to TennisCat90

Hi TennisCat -

I hope you told the GP how fatigued you are and much weight you have lost. They don’t run an ANA unless they suspect autoimmune disease. Your ANA was positive as was anti SM, highly specific for lupus, and anti Ro, which is commonly positive in lupus.

We can’t diagnose here. But clearly your GP is concerned. They have checked you for kidney, heart and lung and issues. Good you saw GP so you could be evaluated. With the pandemic, it could be a while before you see a rheumatologist. Would you consider seeing a rheumatologist privately so that you could get on medication if necessary?

You maybe should talk to your supervisor and explain to them you are being worked up for autoimmune disease. You may need to take a leave.

Best of luck.

K

TennisCat90 profile image
TennisCat90 in reply to KayHimm

Hi,

Thank you, this is really helpful! The weight loss was why I'd originally gone to the GP (I lost about 10kg in 2 months, at least I haven't lost much more but I am struggling to regain it at all) and I have explained about feeling tired, but it's hard to explain because it isn't really like normal tiredness and I feel that I'm being overdramatic! I guess at least I have the blood test results, so maybe if I need to go for a private appointment that will make things a little easier? They also tested something called Complement, which was low, and Ig something, which was high. But I'm a bit clueless to what any of that means! Thank you for explaining about the antibodies. I was trying to figure out just what they may mean and if it can be a false positive, but my GP said it is less likely to be a false positive because some of the ENAs were positive as well as the ANA test.

KayHimm profile image
KayHimm in reply to TennisCat90

Well, you certainly have a lot of positive tests. Your GP explained it clearly. You have too many specific auto-antibodies that are positive for the ANA to be a false positive.

I live in the US so I may not be the best person to advice you about going private. The one thing I can see is that your GP did extensive testing, so that could make a first appointment more productive. Some people here are experiencing long delays for specialty appointments. If that is the case with you, you may want to see a rheumatologist privately, particularly because you are so debilitated.

You are certainly not « over-dramatic. » I would think from a doctors perspective you are really playing down your symptoms.

Hi.bloods can swing between positive and negative so could be done several times.the 1:320 titre is how far the sample can be diluted and still give a positive result..think mine was 1:640.

Ro 52 etc are immunoglobulins tests.Ro52 and SS I believe are for sjorgens

How low was b12....200 is treatment point should be above 800.you can take b12 tablets as they are water soluble so you just pee out what you dont need .low b12 causes fatigue,headaches,pain etc .

I agree with Kay...maybe you need to request sick leave or part time.its a long journey as medication takes months to work.youve got to tell people exactly how you feel..its no good playing anything down or being embarrassed a long list of symptoms believe me weve all got one of those!

Google the spoon theory....its a brilliant analogy of lupus / chronic illness. Xx

Hi TennisCat- I don't know what age of children you are teaching but please don't get caught up in the trap of thinking you are indispensible. With my old hat on (DH-primary) I would be chatting with you about how safe you felt you were being in charge of so many children in what is an extraordinarily full on job and made more stressful under the present cicumstances. I used to work with a HT who really did put teachers and children first. Inspirational.

We are all very guilty of going in when really we should not. I have spent many a time in the stock cupboard having a quick howl so I could face the remaining hours, whilst battling illness. Please don't do that!!

Your GP could /should? sign you off for a bit. It sounds as though they are really persuing your case and it does sound quite urgent. Have an honest chat with someone in your leadership team you trust and explain all that is happening.

Let us know how it goes if you feel able.

TennisCat90 profile image
TennisCat90 in reply to RosieA

Thank you... it's good to hear a DH's perspective! I am a Y6 teacher and it has been a challenging first week back. I think the main thing I am noticing is that we are getting no down-time AT ALL. Because of the "bubbles", we have to be with the kids at lunch, at break, the school day has been extended till 16.00 to accommodate staggered pick-ups... At least before we could just let them out to play or to lunch and for that time, they weren't our responsibility!

I had to call off sick today again because I just felt so run-down... so tired, so drained, my joints are swollen and hurting so much that it's hard to even stand and walk around for long periods. But I know that my colleagues will be saying, "Well, we're all tired!"

And a big part of me is thinking the same.. maybe I just need to pull myself together and get on with it? Perhaps I'm being a bit feeble!

RosieA profile image
RosieA in reply to TennisCat90

It can be hard for consciencious folk to admit when they are really not up to the job, I do know. Are you normally a bit feeble? The answer I should imagine is no, otherwise to be honest you wouldn't be using this forum, have contacted your GP and be desperate for solutions and answers. Forget those who say 'we're all a bit tired', indeed they might be but we both know that this is beyond the normal tiredness that a good night's sleep fixes. You can't work your way through this fatique I'm afraid. Having said that I have two types of fatique, one I can help by going for a gentle walk and I feel so much better. The other just hits me, I feel sick and know that getting comfortable on the sofa is the only exercise for me.

Have you contacted your GP about some sick leave? It might be worth it - think a few weeks down into the term, how do you think you'll fare. Also, have the discussion with the GP about the risk of Covid19 if you are struggling with an, as yet, untreated and flaring autoimmune disease. There's a lot to factor in for yourself. Ultimately, you come first because the school will be able to find another teacher to cover - long or short sick leave. Let's face it they are well used to these scenarios. Don't let yourself indulge in thinking your letting the team down etc. You can't deliver the best for the children when you are struggling so. x

TennisCat90 profile image
TennisCat90 in reply to RosieA

That's interesting what you say about the two types of fatigue. Sometimes when I'm feeling tired, going for a small walk or for a swim makes me feel so much better. But at other times, like now, even getting up to make a drink is making my head spin.

I am hoping to get into school tomorrow and I will try to speak with our Deputy about what's happening... I am SLT (English lead) so I should technically speak to the Head, as my line-manager, but I feel like the Deputy is going to be more empathetic!

I don't like the feeling of being "debilitated". I don't suppose anyone does! But I can't get rid of the feeling that I just need to try harder and do better.

RosieA profile image
RosieA in reply to TennisCat90

Yes, I know what you mean about getting a drink feeling like climbing a mountain. I once howled when I realised I had spent 10 mins summoning the energy to get my feet out of bed. Do speak to the Deputy - if need be by phone.

Do think about the GP. Is there one you could talk to about how you are struggling and get some really sound objective advice from? Just the dramatic weight loss will have taken it's toll on you. It is really crucial that you don't push and push yourself. There is a time for try harder and better (we all did that in our NQT year) but I don't think it's now. If you have an untreated autoimmune disease it would be like trying to carry a Shire horse.

Be kind to yourself and protect your health now. x

TennisCat90 profile image
TennisCat90 in reply to RosieA

There is a GP who I generally see (or speak to, at the moment!) and she has been helpful - it was her who ordered up all the extra blood tests. She also gave me a nutrition plan for regaining weight and prescribed these super-high-calorie milkshake drinks that you can have with meals. I did manage to put a little bit of weight back on, but then I started losing it again. Anyway, she did say the same as you - that even just because of the weight loss, I'll be feeling run-down. But I just don't know what to actually do about it!

RosieA profile image
RosieA in reply to TennisCat90

One thing is for sure. Running around school with no breaks, high stress levels, increased accountability etc won't be helping. Have you discussed your new results with her? Last nag - do give her a call. Bet your DH says the same thing as she/he really does have a duty of care to you. x

Hi so sorry you having go threw this esp now, goodness thank god you told gp and they re referred.

I ca honestly tell if sounds like lupus but the tiredness I'd say isn't that sounds like chronic fatigue. Are you anaemic I'd get gp to check for that as gp can treat that in. Meantime.

Definitely some not right. Hope you get seen soon.

Thank you, both. I'm afraid of chronic fatigue - it's one of those things which has always sounded so scary to me, because of there being no identifiable cause and treatment! I'm feeling a little bit better this evening - less exhausted, just achey joints!

I do have a follow-up blood test next week because the last time my haemoglobin and white cell count were still very low. I think I'll have a telephone call after that with the GP. I've been very good taking my iron supplements with a glass of orange juice, as recommended!

I'll go into work tomorrow unless I feel REALLY bad - it's just one day before the weekend, after all! But I will try to have a proper conversation with my DH as I'm just worried that things will get messy if I have to keep taking time off :(

Chronic fatigue is manageable if you are prepared to help yourself.plenty of sleep including naps during the day.they help give you a boost through till bedtime...yes I nap sometimes I have sleep days when that's all I want to do. Pace yourself ,learn your boundaries,save those spoons and learn to say No .

As others have said you must put yourself first..no one else will...theres no shame in doing so.there are also no medals for pulling yourself together when you clearly cant.pish yourself to far and you will get so low you will end up very Ill.i lost my job in 2015 and as much as I miss it the stark reality is I couldnt do now. Be kind to yourself x

Thank you again for the kind replies. I said I would write a little update, and here it is! I managed to speak to both my GP and my line manager at school and I am taking off tomorrow morning so that I can go to a GP appointment in-person (!). I don't imagine it is going to do much good, but at least I can discuss with the GP to see if she thinks I should get signed off for a bit, or maybe on lesser duties or whatever. My deputy head was nice but at the same time limited in what she could do (for example, it's kind to say "don't do any work over the weekend" but if I don't do the planning nobody else will have done it!!). The good news is that at least our Covid practices are being reviewed this week. I am hoping for an end to serving lunch in the classroom and bubble playtime with the teacher supervising. I have no TA this year and it basically means I am with the kids ALL DAY!

I am mainly terrified that we will have another lockdown and the NHS will cancel once again all non-Covid stuff and I will miss out on my appointment for the second time ...

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