New lupus diagnosis : I have just been diagnosed... - LUPUS UK

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New lupus diagnosis

WilfMary1290 profile image

I have just been diagnosed with lupus. Has anyone any tips? I'm still trying to get my head around it.

18 Replies

Lots of accurate information on Lupus UK main website.

lupusuk.org.uk

I must echo the recommendations to look on lupus uk.

IVehad my diagnosis for 14 months.

I don’t know if I’ve really got my head round it yet.

Mine is complicated,as. I have a lung disease and rheumatoid athritis.

Look after yourself and stay safe

Hi and welcome to the group - it takes a little while to get your head round it but you will - from personal point of view when you are feeling exhausted 😩 you must rest - I found this very hard at the beginning but now know if I don’t rest I feel really dreadful xx

Hi! I think the most important thing is to have a specialist you trust. I also think treating our whole body is so important so I have found therapy very beneficial to my health. Yoga or meditating helps too. I think staying as active as possible helps mitigate my symptoms too as does a consistent sleep schedule. I hope now with a diagnosis that treatment options will help you begin to feel better.

Hi, View this as a step in making you better ; and its a big step - some people struggle for years and decades to get to where you are. So congratulate yourself.

My tips :

1. Patience : its not an immediate fix

2. Be informed - in our experience most doctors are not

3. Dont fight the disease - work with it

4. Tell friends and family but most people wont have a clue about lupus and think its a psychatric problem

Good luck

Hey WilfMary you have come to the right place! This group is so welcoming and informative and a real source of support when we need it. I’m newly diagnosed too, November last year. It can be a rollercoaster but I’ve really learnt to appreciate when I’m feeling well :) and yes try and do some reading but don’t overwhelm yourself, there’s so much information out there and some scary stuff too, but lupus (SLE) is soo individual it affects everyone differently with a huge array of different symptoms. There are also support groups up and down the country to join so I would join one (mine have a Facebook group) to get to know other ’lupies’ and meetings too which are probably online now due to corona virus, for the time being, these are a great way of meeting others and normalising you’re experiences and getting tips. But ask away on here if there’s things you’d like to know.

Good luck and take care

Hi

Many thanks for your advice. I was shocked with the diagnosis but I've known for years it could be a possibility. A day at a time. X

Hi,

I was diagnosed at the end of March so am also still getting my head around it.

What have I learnt so far?

-That you can read as much as you like but a lot of it is contradictory so you end up more confused.

-That your lupus most likely won't be exactly the same as anyone else's. There are so many variations.

-That everything is referred to by its initials and they won't all be applicable to your situation. Someone gave me this the other day which might help healthunlocked.com/nras/pos...

-If you ask a question in here you will get answers.

-Reading too much about it to start with is extremely depressing. I still haven't read everything. I need to come to terms with it in my own way so am dipping in when I feel strong enough. There are far too few positive stories so it is very easy to focus on the doom and gloom.

-Nearly everyone I know seems to know someone with lupus and they ALL say that their friends lead perfectly normal lives with a few hiccups along the way. If you only read the problems on here you would think that it's a completely crippling and debilitating problem for everyone and wonder what the point in carrying on is - my experience, others may see it differently. Lots of people clearly suffer terribly but those that don't aren't shouting about how well they are so you don't see that there is a positive side.

-Be patient with your medication.

-ASK QUESTIONS. Of everyone.

Happy to share newbie experiences if you want. Maybe we could learn together?

Good luck and all the best x

Many thanks for your advice. Luckily I saw a great rheumatologist. On the downside because of covid I had to attend alone. 5 years ago when I hit the menopause I was diagnosed with epilepsy. Since then my memory and attention isn't the best. I still work but adjusted to work shorter shifts. I keep very active, and have regular naps during the day. My friends and family were understanding but still had the way of making me feel pathetic, so in some ways I'm relieved with the diagnosis. Sorry for going on. Keep well. X

KayHimm profile image
KayHimm in reply to WilfMary1290

If it was a rheumatologist who diagnosed you on the basis of positive ANA and symptoms, I really think you are in good hands. A good rheumatologist should be able to know lupus well before fancy tests.

Hey, it has been many years and I still go on and on .. just a way of saying we continue to process.

One thing for sure: you are not pathetic. It is human to want to understand things. Look at the Covid patients who are in the dark about their inexplicable post-inflammatory symptoms. Sounds like us, right?

Xk

meecee1 profile image
meecee1 in reply to KayHimm

It is haemotolgy who picked up on my blood results. I have a low platelet count which is being monitored. If the count goes down to 100 then haemotology will intervene, it is sitting at 123 just now. I had the condition over twenty years ago, and the haemotologist I was treated by said if it happened again then they would probably remove my spleen. I was treated by prednisolone last time, seemingly the steroid is more successful in children with a low platelet count. My GP was contacted by hematology and asked to test me for lupus as there were factors in my blood test pointing to it. My GP has now referred me to rheumatology, with the back-up due to covid I will probably wait for a long time. I have fibromyalgia so maybe some of the meds I receive for that will help with lupus until I see rheumatology. Is it the blood tests lupus is diagnosed by or is there other factors?

KayHimm profile image
KayHimm in reply to meecee1

I think low platelets are a fairly common initial presentation in lupus. I am on vacation now with a sixteen year old who is being followed for low platelets. She has had extensive testing in New York and, I presume, was tested for lupus. You must have other symptoms if you were diagnosed with fibromyalgia and are being referred to a rheumatologist.

It is confusing. But there is no one test for lupus. It is diagnosed based on clinical and laboratory evidence. The two of you will have to be evaluated and watched for symptoms and undergo testing when necessary. Try to record all symptoms for your appointment. Take picture of any rashes and note and fevers.

Best of luck.

K

meecee1 profile image
meecee1 in reply to KayHimm

Thanks for that. It seems that Lupus like fibromyalgia is difficult to diagnose, it is a process of ruling out other conditions. When I had the low platelet count before there was nothing else highlighted. The platelet count went down to 4 yet I had no symptoms other than pinprick red rash and bruising. This time I know what to look out for. Rheumatology were the ones who diagnosed Fibromyalgia so I am sure they will come to a conclusive decision once I see them. It is all a waiting game now due to covid-19.

KayHimm profile image
KayHimm in reply to meecee1

Well, I actually don’t think a rheumatologist would describe lupus as a diagnosis of exclusion. Fibromyalgia at this point has no lab markers, is assessed on physical exam, but does not cause organ damage. Lupus and fibromyalgia are not related, though people with lupus can have fibromyalgia.

Just wanted to clarify what I see as a distinction. Low platelets are evidence of a potentially serious disease process.

Yes, the rheumatologist should be very helpful for you.

Xk

meecee1 profile image
meecee1 in reply to KayHimm

Hi, yes I know they are two distinct conditions, however as you say people with lupus can have fibromyalgia, which, if lupus is diagnosed will be applicable to me. There are several symptoms that overlap in both. It may be I have had lupus and not fibromyalgia all along. It will be good to discuss this with the rheumatoligist. I would appear to have been lucky that my health was not compromised in any way when I had a low platelet count many years ago. I had recent blood tests for something else, it was the haemotology department who noticed there were markers in my blood alluding to lupus and requested further tests. It must be rare at my GP as the nurse didn't know which sample bottles to use as she has never had to take this test! The GP kept her right. I was in hospital at the start of covid-19, not covid related and was tested for the virus. Although I was clear, the test showed the marker which detects immunity was low, nothing further was done about it. I suppose that could have been the start of my body showing lupus symptoms. All I can do is wait for the rheumatology department appointment and keep out of the sun. Thanks for your reply x

KayHimm profile image
KayHimm in reply to meecee1

Hematologists know lupus too. They all seem to have been on top of things with you. Yes, protect yourself from the sun. X

Agree with what everyone else has said so far so will try to add something different!

I think practising mindfulness & gratitude has helped me immensely. It stopped me from getting sucked down a rabbit hole where I thought about how unlucky I was to have Lupus.

And want to echo the 'don't fight it's sentiment. You can and will find a new normal for yourself, whether it means taking more time to rest, having a different diet, etc. 🙂

Take your time learning, find a specialist you can trust, and trust that everything will work itself out! Xx

Hi there, have you heard of ‘spoon theory’? I know it sounds weird but it is a very good way of explaining what it’s like living with chronic illness/disabilities & is useful in getting friends/family etc to understand some of the issues. It’s worth looking at:

butyoudontlooksick.com/arti...

Best wishes

Sxx

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