Lupus : Hi . So since the beginning of 2019 w... - LUPUS UK

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Lupus

Natz36 profile image

Hi . So since the beginning of 2019 w started to notice a few things regarding my health like fatigue and dizziness severe pain in my left toes and raynauds which I have had for a few years . I also noticed a ringing in my ears tinnitus and balance problems. Anyway in December just before Christmas I had a rash across my cheeks and nose which felt like sunburn and I felt so strange I took myself AnE after a bad night as my left foot had swollen also .

Left hospital with suspected lupus!

Bloods from doctor have come back negative but she has referred me to the rheumatologist as she said they can do more tests and find out what’s going on

I just feel scared as I knew things were not right. I’ve always been active but since last year I stopped running as the dizziness and tiredness was crazy .

My periods are all over the place from being light to extremely heavy and painful.

My doctor just wants the best for me now and she really is helpful . I haven’t had another flare up as bad yet although I’m due on and I get really bad like today I’ve felt like I was blacking out twice which has affected my balance even more .

Any help advice and support would be so welcome as I did join a group on Facebook and a few people were not kind after I showed pictures of my rash I just felt like crying.

I had Cushing’s syndrome in 2004 and have been back to endocrine and they have already said it’s nothing to do with my adrenal glands .

Thanks once again Natalie

17 Replies

Lots of good information on the main lupus UK website.

lupusuk.org.uk/

Hi Natalie, just wanted to nip on here and reassure you that you won't experience any bad responses in this site. How awful for you when you were feeling so poorly to go through that.

Lupus is so different in each person, which is why we're all on different medication and experiencing different symptoms. My lupus started raising it's ugly head when I started fainting and going dizzy along with other symptoms so I get where you are coming from.

Sounds like you've got a great Dr behind you which is fantastic, and I hope you get some answers from your rheumy soon.

Keep a note of all your symptoms for when you get your rheumy appointment and keep us posted xx

Natz36 profile image
Natz36 in reply to Apricot100

Hello thanks so much. Yes I have been noting everything that I don’t see as normal that keeps happening to me. Woke up with a painful right side gum pain which comes and goes my dentist has already told me there’s no infection and took a X-ray . I have noticed I get worse before my periods 😢 . I have also took pictures of the rash that keeps appearing also x

Welcome! You’ll find a great deal of support and friendship here. I find it the best place to be.

Hi Natalie

Sorry to hear have been through so much recently.

I dont have lupus (as far as I know!) but am being treated for two other autoimmune conditions, with a third suspected. I like to pop onto this site because it is always friendly and I cant remember once seeing anyone say anything unkind to anyone else. So I think u will find this a good place for advice and support.

My problems included tinnitus and swollen hands and I know tinnitus can seem insufferable at first but u get used to it remarkably quickly and your brain in effect ignores it and u forget its there. White noise in back ground and when sleeping can help. I use to put the radio between stations and that did the trick. But can get some great stuff like Sounds of the Amazon (birds and river sounds etc not sound of folk packing books).

Hope u find out whats going on soon. U do have to push them sometimes for referrals but sounds like you have a good GP.

bst wishes

R

Natz36 profile image
Natz36 in reply to robertbob

Hi thanks for the message. It’s just all a bit messed up really. I’ve had an MRI and nothing was found because my balance is t great , the tinnitus I am use to it but it’s worse after exercise and makes me feel worse but I want to continue exercising as it’s helping me mentally even though it’s probably not helping .

Also I have had Cushing’s syndrome and it took them ages to diagnose me by the time they did I had a tumour on my adrenal gland !

Hi, sweetheart. My mum has lupus, and altough my ANA Test came back positive, the rest were negative so they ruled out lupus for me. However, i have many of your simptoms( fatigue, pain, lack of balance, diziness, feeling of fainting sometimes etc) and I have been diagnosed with chronic fatigue syndrome and fibromyalgia. Try to stay calm until you get a proper disgnostic. Love, Roxi

Natz36 profile image
Natz36 in reply to Roxanaw

Thanks. I feel stressed about it all. Most mornings my left eyelid is a little swollen 😢. No pain just don’t understand what this is .

I’ve been on here searching for information and help and I think you may find it informative and helpful and supportive and friendly. Welcome 🙌🏻sorry it’s problems that bring you here but I’m sure it will help while waiting for answers medically 🙏

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Hi Natz36,

Welcome to the LUPUS UK HealthUnlocked community, we offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

I’m glad to hear you have a proactive doctor who has referred you to a rheumatologist for further testing. If you would like to learn about the specific criteria and tests needed in order to make a diagnosis of lupus visit lupusuk.org.uk/getting-diag...

To read our booklet on lupus and the skin, visit lupusuk.org.uk/wp-content/u...

It is common for lupus activity to be related to the menstrual cycle. Therefore symptoms can flare up during and around the time of the period.

According to The Lupus Encyclopedia, it is not uncommon for women who have SLE to have irregular menstrual cycles. When SLE is less active, menstrual cycles generally tend to be more normal.

Please keep us updated, wishing you all the best!

Thanks . I have looked at the lupus site once the hospital had said it was suspected lupus. At the moment raynauds is bad my feet are cold hands turn purple I know that it won’t kill me but I just feel scared . Feels like my left calf is swollen a bit but I’ve just got in bed so I don’t think about it anymore x

1sam profile image
1sam in reply to Natz36

Hi dear. Sorry to hear you are feeling unwell. Fear and denial are common I guess.... hearing 3 different rheumatologists talk about lupus was awful for me. Being diagnosed was as hard as a loss, but not knowing is worst than knowing, don’t you think?

The way I think is this: I was feeling misserable, in much pain and with various (unexplained) symptoms .... as soon as I got a definitive diagnosis Drs started my drug therapy and started feeling better (insert half smile here).

Cry and rest all you need, be around loving people, but please drag yourself out of bed if you have to and get diagnosed. You deserve to feel better!

I’m sure you will.

Hugs

Natz36 profile image
Natz36 in reply to 1sam

Thanks so much for your reply I spoke to my doc this morning she wants me to have bloods done to see if I’m lacking b12 as I haven’t had them done for over a year as she wants to rule things out x

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator in reply to Natz36

We published a blog article on coping with Raynauds which you may like to read at lupusuk.org.uk/coping-with-...

Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can request details of your local Contact at lupusuk.org.uk/contacts/

Take care.

baba profile image
baba in reply to Natz36

“Feels like my left calf is swollen”

This could be serious please get it checked out by a doctor urgently.

I don’t want to scare you but it could be deep vein thrombosis.

Natz36 profile image
Natz36 in reply to baba

It’s not lol

Natz36 profile image
Natz36 in reply to baba

Sorry but your comments come across like you don’t know what you are on about . I certainly don’t have it it’s inflammation due to whatever is going on with my body I’m totally fine today foot is less swollen and calf is .

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