Hi all, new here & advice needed please - LUPUS UK

LUPUS UK
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Hi all, new here & advice needed please

lisa___s
lisa___s

So I’ve been really quite unwell for some time now and after being referred I finally saw a rheumatologist consultant last month.

He said I needed to be tested for Lupus which I’d never even heard of before but he said most of my symptoms pointed him towards this.

This week I have felt so unwell. After two weeks of fighting a chest and sinus infection I thought I deserved a break but no my body has given up on me.

I’ve exhaustion beyond believe, joint and body aches. Night sweats!!

I’m having to plan my day so that I get things done in the morning and then rest the rest of the day until school pick up and then hope my 6 year old doesn’t mind me collapsing on the sofa ☹️

So yesterday my bloods came back. It was worded.... Your autoimmune test has come back strongly positive with an ANA of 1:640 with a homogeneous pattern. Together with your symptoms and low lymphocyte count this is suggestive of autoimmune disease.

So I now have to wait till May 2nd to see anyone.

I’m confused by these results, do I have lupus or something else.

And with feeling so unwell this week I’m just so low and can’t stop crying 😢

Any help or advice really gratefully accepted x

25 Replies
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Welcome, lisa_s,

It often takes a long time before we get a definitive diagnosis, as many of the systemic auto-immune diseases are very similar. They are all caused by our immune system becoming over-active and attacking our own tissues instead of attacking infections and foreign bodies. Lupus is perhaps the best known, but many of the people on this forum have other types of AI disorder, such as UCTD, MCTD and Sjogren's Syndrome.

In all of them, you will usually get a positive ANA test, as you have. To decide exactly which AI disease you have depends on your symptoms and other blood results (for example, a blood test called dsDNA is a reliable test for lupus).

One important point to make is that, even if your precise diagnosis is uncertain, you can still start treatment and benefit from it (typically, hydroxychloroquine and steroids to start with).

If you look on the "home" page of this site, you will see a link to a whole load of information leaflets which you might find helpful.

Keep in touch and let us know how things develop x

P.S. Don't wait till May to see a medic - go to your GP and ask her/him to help you out in the meantime x

Thank you that’s really helped, so hopefully in May they will do different blood test then to find out what autoimmune disease it is then (fingers crossed)

I will book a doctors appointment asap and keep you updated.

So far my GP just keeps giving me repeat prescriptions for painkillers that I’m on for my back already telling me that they don’t want to give me anything new as they don’t want to tread on consultants toes 😕

Cann
Cann in reply to lisa___s

He's probably worried that prescribing something could make matters worse for you; they don't know how people will react as we are all different and we take the risk ourselves of whatever someone prescribes for us. I have found that out to my detriment myself.

All the strange symptoms are because the immune system is out of sync - a very difficult situation to rectify, but keep positive - the best way, and go with your body whenever you can because it is showing you that you need to listen to it!

Hi Lisa. I share your confusion. I was diagnosed with Lupus SLE and Discoiled Lupus. Along with RA. At the time of my diagnose I felt well with the exception on fingers swelling, but I worked as and production line assembler at General Motors Truck & Bus then as a Supervisor.

So that came along with the job. I had had a right side cerebral brain aneurysm in June of 2001 and then all of a sudden in Jan of 2002 I got High Blood Pressure and with that I had to see my Dr every 3 months and a cat scan every 6. Then in 2007 I noticed on the bottom of my left foot there was a tiny bump. It never bothered me, the only time I knew it was there was when I washed and lotioned my feet and I happened to tell my Dr about it. He looked and it and said Im testing you for RA and Lupus. He has been my Dr for about 30 yrs and he said because I use to have back problems he wanted me tested. I wasnt a sit down type of girl. All kinds of sports, helping my grandparents remodel their rental property, learning how to work on cars, garden, etc. Sure enough 1 day before my 44th birthday I got the call. I was positive for Lupus. I had only heard of it once before. A girl I bar tended with had it, but I didnt ask may questions.

Then I thought he was wrong because as I read up on it I wasnt have the horrible symptoms I was reading about. And then in 2010 it reared its ugly head and in 2014 just went buck wild and I have been in what they call a flair and a big one every since. I dont want to babble but if you want to talk to someone that experience it Im here. It helps when someone understands from experience it. I found out a girl at my church had it and as we talked it was a relief to know I wasnt going crazy, begin lazy or exaggerating , Currently Im dealing with 7 fractures in my back, one at my tail bone and thats after they put medical cement in 4 areas. Walking, moving, everything is PAINFUL right now. May I suggest you google Lupus Foundation, it can explain it to you but on facebook theres a page called Lighthouse for Lupus that is EXCELLENT because it people or Lupies as we like to call ourselves that goes thru or have gone thur what you may be experiencing or may experience. Been there done that. If you would like to talk further just let me know. I'll send you some spoons if needed ( google the Spoon Theory and you'll understand. I'll be praying for you and sending you gentle hugs.

Hello.

Sorry to hear you are struggling with your health and feeling down.

You’ve had some good replies and especially from whisperit. Go back to your GP, explain how you are feeling and ask what they can do to help in the meantime. I don’t think GPs can start you on any lupus meds, such as Hydroxy or an immune suppressant - that has to be a Consultant. But they might agree to give you a short course of steroids to help you out in the meantime. If your symptoms improve on steroids, this is a good indicator that your health issues are auto-immune / inflammatory.

Take a look at the Lupus UK website. There are great information leaflets there on diagnosis and symptoms and treatments.

Also use the search facility here to look for info on your symptoms etc. We are not medically trained here, just lupus sufferers sharing our experience and knowledge - but it’s a great site and very supportive.

I would also recommend you try to find a support group locally. Lupus UK might be able to tell you of one in your area. This might help you feel not so alone in all of this.

We’ve all been through this and know the diagnosis and waiting for treatment is like a horrendous roller coaster ride. Stay in touch.

Wendy

Thank you all so much for such positive and thoughtful replies. It’s made me feel a lot less alone already, what lovely people you are.

I’m definitely taking your advice and I’m going to pop to see the GP and look at the links and leaflets you’ve suggested.

RhondaB thank you for sharing your story, your very brave. It certainly sounds like you’ve had a tough time.

Like you said you were quite active, I am too. That’s what I’m currently struggling with, trying to get myself to rest. I have quite an active job, luckily only part time but at the moment I’m feeling even that’s too much. I can’t imagine cutting my hours down or stopping altogether. Plus I could never afford life if I didn’t have my job.

I’m sure this flare will settle and my energy will return soon.

Positive thinking 😊 x

Wendy39
Wendy39 in reply to lisa___s

I’m glad we’ve helped. I think there is a mental process you go through when diagnosed and it takes a long time. I felt like I grieved for my former self, if that makes sense. A feeling that life won’t ever be the same again. There is so little understanding of our condition and often no help offered to deal with and overcome these emotions. But like I said, you’ve come to the right place. I joined here when I was diagnosed in 2013 and everyone had picked me up when I’ve been down. My children were 9, 8 and 5 when I was diagnosed and I was working part time and struggling to cope. I would do the school run and go home and sleep for 2-3 hours so I had enough energy to cook a meal and do the bedtime routine. I used to leave my 5 year old in front of the TV downstairs and tell her to stay put, so I knew she was safe enough for me to sleep, with her brothers playing in their room. It’s tough. But needs must. They are older now and I don’t feel bad for sleeping when I need to anymore. If I am not well then I can’t look after them like I want to. So me taking care of myself benefits the whole family. Take things slowly and don’t beat yourself up about all these. You’re doing your best. Stay strong. Wendy x

lisa___s
lisa___s in reply to Wendy39

I’m so glad I’m not the only one, I normally have to pop a movie on for my daughter and sleep or rest on the sofa next to her. I felt guilty the first few times but have learnt like you said that if I don’t do this then I won’t be able to cook or do bath time etc..

My other half has been great this week too, he’s text me when he knows I’ve just got home from work to check I’m having a rest (bless him).

As this week has been such a bad week I’ve even made sure I’ve done really easy meals or just handed the reins over to him when he walks through the door as half way through cooking I’ll forget what I’m doing, how to cook a basic thing I’ve done a million time or it just starts to go all wrong cause I’m concentrating more on the pain I’m in stood there than the cooking xx

Sara_A
Sara_A in reply to lisa___s

I too have 2 young children aged 2y and 5 y and only work 2 days a week which I’ve just had to cut down by a couple of hours as just cannot manage.

I get totally exhausted and my life is literally get up wait for Dad to get home at 6.30pm go to bed and same again next day!! I have good days and bad like we all do.

I’m 38 (oh 39 actually last wk!!) and I feel about 80 most of the time. I became unwell with joint pain aged 21y and it’s gone from initial rheum arthritis diagnosis to lupus and antiphospholipid syndrome. I take 25 tablets a day inc slow release morphine which I started about 2 years ago when my hands and wrists were so painful I couldn’t even pick my baby up.

It is hard but u can get thru it and being on here will really help as everybody knows exactly how u feel.

I have had to make a lot of adaptations to everyday things but u just do what u can and rest when u can. Personally I have no time on my own without at least one of my children who often doesn’t really sleep in the day which is a killer! I literally frag myself thru some days.

I initially did quite well on just hydroxychloroquine for a while so there’s a chance u may just have that and do well and not necessarily end up on a mega cocktail!

It’s great ur partner is understanding, mine is too he’s a pharmacist (we are both medical). I do know of people who have partners that do not help or understand and I cannot imagine how I’d cope with that.

Sorry for the v long reply!!

If u need to ask anything pls do x

lisa___s
lisa___s in reply to Sara_A

Gosh you do have your hands full with two little ones to look after as well.

At least your still working, even if you have had to cut down, gets you out the house for a bit. Is your work quite understanding? How did you first tell them about your health? Xx

I worked in children’s A&E at the time in my early 20’s and I think the fact I would get to work and collapse with exhaustion just waiting for handover ha!! Kind of didn’t need much more explanation!! Then I’d be wheeled round to adult A&E very embarrassing!!

Work have always been quite understanding in both of my employers, previous and current. I work with a small team and I think the fact I drag myself in when I can barely move and am very rarely off sick makes them appreciate that I am not well and do they do whatever they can. They work around me really and I’m lucky that in the area they don’t have a lot of choice as there aren’t enough nurses that can do my job so they have to keep me on, whatever hours etc that means that works for me!!! Phew! Also I would just throw the disability discrimination act at them if they wanted to try anything ( that’s more aimed at the higher up people who don’t know me or what I do!)

What do u think ur employer will be like are they ok?? Don’t be scared tho they have to make reasonable adjustments. Are u in the uk?? What area? X

Ps when it comes to an evening meal my poor partner has to come in most nights to help put the kids to bed then I go to bed and then he has to sort his own tea out! Luckily he likes pasta so I make sure there is plenty of that in so it’s quick and easy for him! I still feel like a useless failure tho!

Hi Lisa

I think I'm at a similar stage to you. After my body dramatically overreacted to a sore throat throughout January, weird temperatures and joint pain ranging from mild aches to agony, my GP tested for Lupus and the results indicate that I have it. I'm worried that I am being referred to a rheumatologist but the waiting list is 18 weeks - so sometime in July. What am I supposed to do in the meantime? I've asked my GP if there's any way of accelerating the appointment and I'm waiting to hear back from him.

Do go back to your GP. Book a double appointment if you can. Write down everything that is bothering you - the pains, the exhaustion, the depression and the fact that you have a six year old to look after. Ask for some support whilst you wait for your next appointment. You are genuinely poorly and your GP will want to help you.

Heather

Ps I look after my grandchildren one day a week. They are three and one. I mainly lie on the sofa at the moment whilst they rampage around my daughter's lounge having great fun!

lisa___s
lisa___s in reply to HeKe

Hi Heather,

I’m just worried that if I right everything down for the doctor it will be a list a mile long.... 😬

So you’ve been diagnosed the opposite way round to me. My doctor sent me to the rheumatologist first with suspicions after a few weird blood tests and symptoms. It’s now I’ve been seen by the Rheumatologist and had the ANA come back positive I know now that I’ve got an autoimmune disease of some sort. I’m assuming it’s lupus and so was my consultant but I’m seeing a new consultant in May for diagnosis.

A kind lady on here said there’s a specific test for Lupus and what kind of lupus. Is that what you had at your doctors? X

HeKe
HeKe in reply to lisa___s

I’ll ask my dr what tests he ran. He was also factoring in joint problems and my beautiful buttterfly rash .

lisa___s
lisa___s in reply to HeKe

Is your rash there all the time or does it flare up and go away again?

It is present all the time at the moment. Sometimes in is faint and sometimes it is really obvious . I’m so tired and fed up, but I’m trying to keep positive.

lisa___s
lisa___s in reply to HeKe

The positive is your wrapped up warm on a freezing cold snowy night with your fire lit, just relax in front of the tv and remind yourself of the good things. Sometimes is ok to be tired when you’ve got nowhere to be, I know it’s exhausting though.

Be happy with the fact that you’ve chatted to me today and made me feel like I’m not alone anymore.

This week I have spent mostly crying and feeling alone. Not anymore I feel I’ve snapped out of my blues so thank you. I hope your blues goes to xx

HeKe
HeKe in reply to lisa___s

Ah Lisa, thank you. I've only recently discovered this forum and it is my sanctuary. It seems to be the only place where people understand how holistically sh*t we feel (sorry!). Electronic hugs to you xxxxx

lisa___s
lisa___s in reply to HeKe

Huge hugs to you too, enjoy your evening xxx

Doris47
Doris47 in reply to HeKe

So sorry to hear your news. I had a diagnosis last week and got panicked and stress which of course caused a flair up and lack of sleep. It is easier said than done but yes, peace and quiet and sleep is good but easier said than done! Hope we can make friends and manage this horrible and annoying condit ion the best that we all can. My name is Helen from Pembrokeshire west Wales.

lisa___s
lisa___s in reply to Doris47

Hi Helen, I’m Lisa from Delabole Cornwall and making new friends who all understand and support each other is a great thing. I’m so glad I found this group xx

You must be exhausted.

As hard and as worrying and things are, stress makes them worse. Try just for a day to accept that something is going on with your body but it is being looked into. Worry is our enemy.

I can't help with the medical advice but I can try and help with relaxation techniques. Just a simple visualization helps. Lie with eyes closed and go to your most favourite memory or place. Lie still and get lost in the memories and relax in your thoughts.

I hope this helps. Biggest of HUGS for you xxx

Thank you that’s good advice, I will definitely give your relaxation tips a try xx

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