Suspect I have Lupus due to health issues. No idea what to do. Can anyone advise me?

[Nat1291]

Hi Everyone

My name is Natasha, I'm 25 and new to the page.

I have been suffering from a number of health issues since I retutned to the UK in 2014 after 12 years in Spain.

On Friday I was hospitalised following severe chest pain. ECG, bloods and xray showed no heart issues but inflammation to the chest bone and muscle and probably viral pleurisy.

It was suggested to me by an acquaintance that I could be suffering from Lupus. I had no idea what it was, but following investigation I believe that it may be the case and have no idea how to proceed.

I work as a live in carer and spend weeks away from home at a time (currently away on a 13 week booking) and my gp practice in Southampton is awful. I have never seen my own gp and the locums take no interest on the numerous visits I've had for individual complaints.

My health has been declining gradually and I suspected I suffer from psoriatic arthritis but now believe Lupus is my problem.

Here are my symptoms if you can take the time to read through this post, I would be so grateful:

- Constantly aching bones, muscles and neck: I suffer from pain in my lower back, left leg, left buttock, across my shoulders, left knee and my feet. Every day some degree of pain is present though I suffer flare ups in my feet which is debilitating and leaves me hardly able to walk from the burning pain.

- Constant Mouth Ulcers/Receeding Gums: Since January I have had ulcers on my tongue and my mouth every two weeks. Receeding gums for four years.

- Dry eyes and parched mouth: I have been suffering from constantly dry eyes that feel like sandpaper and my mouth is so dry. I drink litres of water every day due to the parched feeling.

- Pleurisy and Shortness of breath: I have had three bouts of Viral Pleurisy in less than a year. GP told me I had repetitive strain injury and refused to listen to my chest. Discovered after trips to A&E. I suffer shortness of breath even just walking up the stairs.

- Constant Fatigue: Debilitating tiredness and sheer exhaustion in my body no matter how much sleep or rest I get. Mentioned to my GP and told to quit my job!

- Butterfly like rash on face and rash on chest: I have had a red rash on my cheeks for a long time but put it down to the change in the weather after moving back to the uk. I also get flare ups of a non itchy rash on my chest.

- Gastrointestinal Issues: Treated for a bleeding Duodenal Ulcer in '08 at the age of 17 following three years of misdiagnosis due to my young age, Hiatus Hernia diagnosed in Oct'15 after an emergency Endoscopy following Oesphagitus and Grade B acid burns to the Oesophagus (vomiting blood, acid reflux and black stools) the gp who referred me told me she suspectes IBS due to stomach cramps, constipation and diarrhea on a long term basis. No further investigation offered. Put on Lansoprazol 30mg.

- Chest pain: Bouts of severe chest pain in March' 16, June'16, August'16. Hospitalisation in August. Clear ECG, bloods and Xray. Inflammation to chest muscle and bone was reason given. Prescribed Cocodamol as can't take antiflammatories due to hernia and ulcer.

- Psoriasis: Cronic psoriasis affecting scalp. Also have patches on elbows, knee, sole of feet, arms and hand. Severe pitting of fingernails, toenails and loss of two toenails. Prescribed Betnovate cream and scalp solution.

-Thining hair: Losing alarming amount of hair after brushing. Also have hair loss after washing and on pillow. Hair is thin and brittle.

-UTI: Three urinary tract infections in less than a year.

-Weight Gain: Have gained 3 stone in 23 months. Lead a much more sedentary life style but adjusting diet hasn't helped.

- Constant headaches/ Migraines/Jaw ache: I have a headache at some point every day. Suffered first Migraine in July'14 and have had four since then. One migraine lasted for a week in June'16. I wake up every day with jaw ache.

-Balance issues and dizziness upon standing: Random episodes of loss of balance resulting in falling or lurching. Blackening of vision when standing. Especially when standing from sitting.

- Sun rash/Night sweats: Itchy red rash after 5 min exposure to sun. Waking up bathed in sweat and clammy at night.

- Endometriosis/Miscarriage/ Fertility issues: Always had painful and longer than average periods but started very prolonged bleeding of five plus weeks in Nov'15. GP told me I had endometriosis and prescribed Noresthisterone. No further help or advice offered. Second trip to gp and was told they don't deal with gynaecological issues. I had a miscarriage in '08 at 10-11 weeks. Haven't used contraception with my partner for the last 1.5 years and haven't fallen pregnant. In June this year I had highest grade pre cancerous cells removed from my cervix via Lletz.

Do you think I have Lupus or am I reading too much into these symptoms?

They have all coincided and I feel like I've gone from being health and happy to being trapped in the body of an old lady. I can't remember what it's like to have energy and not have pain in my body.

What should I do now?

I'm not due home until 19th October but I feel like I can't wait for answers until then but I don't trust my surgery at home to get me a referal or even take me seriously.

I feel so alone so any advice would be so helpful.

Thank you for taking the time to read my post.

Nat xxx

[Footygirl]

Oh Natasha you poor thing. You have every right to proper investigation and treatment.

I don't know where to start with your symptoms other than to refer you to the Lupus UK website and the free guides they give. I think there may be one for every set of symptoms. The one that cries out to me most is the possibility of Hughes syndrome or sticky blood, identified by Prof Hughes and linked with problems becoming pregnant. But I am no expert and think that should be your first port of call.

Secondly, you have found the best place to ask for help. On here we have people with years of experience of autoimmune diseases whose experience can inform your next step.

Having only recently gone from despair with symptoms through reading advice and encouragement here, I have, last week had two breaksthrough. I encourage you to post here as often as you like. It helps enormously to speak with those who have in turn been patronised, disbelieved or downright ignored when presenting to docs.

I wonder if you can register as a visiting patient where you are? Are the docs who oversee your patients condition good, sympathetic? I would try that avenue for now and defo find a new practice on your return home, but it is too long to wait, in my opinion, to be rebuffed again. The fact you mention lots of locums makes me suspect that permanent docs dont hang around that practice, so Id do the same and move on, your health deserves it.

You are doing a stressful, selfless job which must be hard work. I dont know how you are carrying on to work. You are an inspiration Natasha.

Welcome to our forum. You are most welcome. Please download those guides on the main site, or order hard copies. There is a welcome pack which covers a lot of ground. If you contact Paul, he will gladly send it to you. Have a look to see if he is on the page or if he has responded to any posts, though, I have no doubt he is reading this and will let you know how to contact him!

We on here understand your pain, confusion and low spirits. Most of us have been there. But courage mon brav, you will make progress and find answers with our encouragement, support and love. I mean that. People on this forum are extraordinary in their willingness to share and help.

You are not alone Natadha. We hear you. We support you, we understand.

Every good wish as you begin to find answers. Send for those leaflets

Chin up

⚽️

Ps look down to Barnclowns post: research having one autoimmune disease could mean you get more than one, words to that effect, memory!! Interesting and great responses. Gives a great idea of the quality of sharing and knowledge x

[Jude65]

Natasha, you need to get help and find a doctor to take you seriously. Don't put us with all these symptoms any more. People don't understand SLE and many GPs don't know an awful lot about it but a specialist Lupus clinic in a hospital rheumatology department will do all the relevant tests to see if that is what you have. Do go to a local surgery near to where you are working and say you need help - be assertive about this and don't make light of the way you are feeling and do persevere. Have you got any support where you are working/living?

Good luck

You are not alone

Judith

[Paul_Howard Partner LUPUS UK]

Hi Nat1291 ,

I'm sorry to hear that you are feeling so unwell at the moment and that your current doctors are not taking your concerns seriously. You've had some great advice from other members of this community already. It would be best to seek a referral to a rheumatologist (preferably one with a specialist interest in lupus) in order to be investigated properly and get a diagnosis and treatment plan for your symptoms. Prof Chris Edwards is a lupus specialist at Southampton General Hospital, so you could try asking for a referral to him?

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Nat1291]

Hi guys

Thank you so much for taking the time to reply and for your kind words.

I feel less isolated now and it's nice to know that there are people I can ask for advice and who will take the time to talk to me

Footygirl- I hadn't heard much about Hughes before reading your reply but it does sound like something I could be suffering from. That's quite a scary thought. The whole thing is to be honest- to know that there might actually be something seriously wrong with you and finding it so hard to get any advice or help! As you suggested I looked at the information on the Lupus Web page and downloaded the articles and information pack. I'm glad to hear that you're making progress with your own health issues and hope you continue to do so.

P.s The gps at my surgery staged an end masse walk out at the beginning of the year. It's been utter chaos since. Even before that you could wait up to 8 weeks for an appointment. My partner was at the surgery today and I asked him to make me an appointment for 22 September as I have 3 days free for update training for work. They told him the no longer make advanced bookings and I should phone on the Monday of the week I want an appointment and hope I get one! X

Judith- Until being hospitalised on Friday with the chest pain I had given up thinking about going to my gp. But I have decided that enough is enough and they need to do something for me!

I'm registering as a temporary patient at my clients surgery this week and getting an appointment asap. I will ask for a referral.

I don't have any support where I am. It's just myself and my client who has learning disabilities and complex needs. It is beginning to become quite a strain as I can't get sick and work seven days a week with broken sleep every night for almost three months! X

Justin- Thank you for the information. I downloaded and read the information pack which was very helpful.

I have heard about Dr. Christopher Edwards through my research and know that he runs the Lupus Clinic at SGH.

If I have no luck getting a referral to him would it be worth seeing him privately? I know he has clinics at the Spire Hospital. Is it possible to see a consultant privately and then asking to see them on the NHS? I don't want to make a faux pas at this early stage.

Thanks again to you all for the replies and for taking the time out of you day to read my post. It's truly appreciated.

Natasha x