Lupus .. please tell me your symptoms and how you were diagnosed

[dovegrey18]

I have been feeling rubbish for years. I've always had to pace myself and frequently feel very run down as if I'm running on empty. Sore throat, always feeling like I'm fighting an infection , low grade temp, what I considered wide spread inflammation in the body in the form of pain etc. This has always been attributed to some surgery (which included the removal of the spleen) I had several years ago and tbh I believed that too.

These last 3 months have been worse though - I haven't had any let up with aching muscles and overwhelming exhaustion. Usually I can get myself back on track / damage limitation by sleeping 10 hours overnight, napping in the day, cutting back on socialising and basically just doing the basic eating sleeping resting etc. This time it hasn't helped at all.

I've been reading about fibromyalgia and chronic fatigue syndrome and recently wondering if I have something underlying. The symptoms however don't seem to fit. Went to the GP yesterday and it was a locum Doctor. She didn't know about my previous surgery so looked at it all objectively. I said to her that I know the surgery was major and I had a really tough 3-4 years after but things did start to settle. However 7 years on I thought I would be a lot better by now. She agreed. She said they'll run bloods and check for auto immune diseases. She asked about family history - mum suffers from
Coeliac and Rheumatoid arthritis. She mentioned lupus specifically a few times.

Since coming home I've read up on it - I only knew that it was your immune system attacking itself and I've only
heard of it in severe forms. However going through the list of symptoms I was surprised how close it hit home.

Apart from the overwhelming debilitating exhaustion and muscle pain , I've had the following :

• 2 unexplained episodes of rash covering my whole body and affecting the joints. First time was worse and lasted 3 weeks. They just kept telling me to take antihistamines which did help albeit slowly
• vaginal dystrophy (dryness)
• reoccurring UTI's with multi resistant bugs. After bladder washing treatment, systems still persisted and this was diagnosed as interstitial cystitis (bladder tissue inflammation)
• 2 miscarriages
• unexplained episode of very sore knees for over 4 weeks
• inflamed red skin on face
• ongoing hair loss
• always have very cold feet
• sun sensitivity

I'm going back for bloods next week.
Does this sound like lupus to you? Albeit mild.

Please tell me how you were diagnosed and how long the process took

Oh I said earlier that GP said nothing came up in the initial bloods except elevated platelets (which I know have been high for years since my surgery). However, CRP was also a little high (the Rheumy told me)

Glad you made progress with the rheumatologist, they run much more detailed blood tests than the Gp can so hopefully they can find more answers for you.

Thanks @PalePinkSwan

Here is the list of the bloods ran by GP which I think is the first series if you like

Exhaustion, pain and blood resultswww.mumsnet.com/Talk/_chat/3284669-exhaustion-pain-and-blood-results

@dovegrey18 how are you now? X

Thanks for asking, I am ok. Since creating this thread, I got a fibromyalgia diagnosis in 2018, then after the first covid vaccine in February 2021, my health deteriorated massively. All the symptoms , especially the chronic fatigue and paint really ramped up.

This led to a chronic fatigue syndrome diagnosis in January 2022, but interestingly my dc were referred to genetics in august and we've all been diagnosed with hypermobility ehlers danlos syndrome.

Fibromyalgia and chronic fatigue syndrome are essentially a part of it but the root cause is hEDS. This has blown my mind. I knew I had hypermobility but never knew faulty connective tissue could cause a wide variety of symptoms.

How are you? Why do you ask? Hope you are in good health.

@beststepforward oo wow so since then you had a few diagnoses! I hope your getting on ok with everything.
since having covid back in 2020 all these weird symptoms started in my body including my vision body pains fatigue and dizzyness. Then i got pregnant and everything got worse. I had the baby and i felt swollen all the time , i get very achey hands and they feel like a claw in the morning. I get awful pains in my legs, my girl is 17months now. I am going to speak to the GP on the 7th and ask to be refered . I do take amitriptyline also for nerve pain in my face since having covid. I think covid must of made things worse like maybe i have something underlying? Xx

@beststepforward also what medication has helped your symptoms. I am so worried my drs will just say just see how i got. But i have dealt with this for too long. Xx

I would write a list of all your symptoms and take it with you.

Medication wise I've recently started a private prescription for LDN and that is what has made the biggest difference. I was taking nortryptaline for years but the LDN is better. They don't prescribe it on the NHS for my conditions but able to get it privately.

Also as well as symptoms write the frequency and duration of them

@beststepforward thats a good idea with my list. Then i wont forget a thing.
Ooo i see , so i would need to go private .
i just feel like the symptoms never stop xx

@beststepforward yes i will also do that, thankyou. I hope they listen to me, i really do xxx

Am sure they will. There's lots of Medications to try depending on what your diagnosis is. The more knowledge you have the better they will listen to you ..

@Starrr123 sorry this is an old post but how are you now? I'm going through this at the moment with the sore aching hands in the morning and fatigue, I have a 15 month old and am still breastfeeding so wasn't sure if its hormonal or strain, but I also had a miscarriage prior to her birth (was on meds similar to what is prescribed for lupus for my successful pregnancy ) so am questioning autoimmune issues all the time, even though nothing was found in my bloods after the miscarriage.

I also recently had a Lyme disease diagnosis which was treated but I think it's flared up whatever is going on.

I have lupus. For years I thought I was going mad but finally the diagnosis came when I had vertigo that coincided with the butterfly rash. The doctor looking at me for vertigo spotted the rash and started a host of tests for me . 9 years of thinking I was nuts , but it was lupus all along