Good morning everyone,This is probably just going to be an essay on how I am feeling and any advice would be grateful.
After approximately 3 years of symptoms, pain, rashes, headaches, doctors being oblivious and not listening - I googled my symptoms (which I refrained from doing so for so long) and requested my doctor that I am tested for lupus a few months ago. The results came back and they would only tell me the results through a routine appointment a month later, it was positive and they put in a urgent referral to rheumatology. They took more tests last week presumably for the functioning of my organs, vit levels, etc as it was around 5 vials. They've come back yesterday via text and to book an appointment, my doctors surgery do not phone you for the results no matter how urgent and the next appointment was 4th January and all the receptionist told me 'there is quite a few things that flagged up'.
I am really frustrated and I just want to understand a bit more with what's going on with my body - I am 25 (previously very active) with a 7 and 8 year old, I can't run around with my babies like I used to, or even take my dog for a walk without my joints in agony and coming home depressed and demoralised. I have an extremely stressful support role which requires me to be out and about all day every day which after every visit I cry in the car as I am hurting so much and my head is pounding, I feel like I just can't do it anymore (not suicidal, I wouldn't do that to my boys) but just to be a hermit, stay home and wollow in my own self pity as I am no use to anyone. I feel like a write off as I had my first smear last year which came back as I have high risk HPV which I put down to all of my symptoms for some reason which was not the case and now I know it's lupus, I feel relieved as I finally know it's something after such a long journey but I don't know, I feel helpless.
I feel like this has turned into a vent post more than anything else - on that note, does anyone know how long a urgent referral takes for rheumatology? I have just been told to take ibuprofen by the doctor, thanks doc, I've been doing that for 2 years straight regardless - does anyone know if I can I actually request anything else while I am waiting to be seen?
Realistically, I just have so many questions but after so long with them not being answered, I am just exhausted and my brain can't even function or flag them up.
It's nice to know there are people in a similar position and a community that I can turn to, my job is very social but I am not so it takes a lot for me to post something on social media let alone a public forum like this 💖
All the best Lauren x
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lollipop98
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Good morning lollipop98 and welcome to the forum. The journey to getting a diagnosis can be long and frustrating. People here have experienced that and understand how you are feeling. Many of us have experienced unhelpful Gps and consultants along the way too, and its so darn annoying and belittling!!!! but sometimes we get lucky and find some helpful ones too.
The good news is that you have been referred to a rheumatologist. It will depend on your hospital's waiting list as to how long that wait would be. In the meantime go back to your GP, explain how your quality of life is and ask if they can give you anything to help. Depending on your blood tests, they might for exampleexampl be able to prescribe steroids. But I am no medical expert.
The fatigue you are experiencing is familiar to many of us here and like you say, it is hard to deal with. The sad reality is medication can't really take that away , learning to manage it is the way forward - this is called pacing . There is some useful information on the Lupus UK website on managing fatigue and pacing. There is also something called spoon theory which might help you get your head round it. I will try and find a link for you. xx
Oh my love 💓. Like someone as already said, most of us can totally relate. It is a nightmare journey, my GP like yours was and still is useless. I'm a teacher and some days I would sit on my car and think, if I just put my foot on the on the motorway, it would all be over... My rheumatologist saved my life. I had to go private, but within minutes of being sat with him, he assured me that what I was feeling was real and I was not going mad. Its still a journey, but once you get proper meds you should feel so much better. I don't know if you are in a position to see someone privately, but if you can do it. Since my first visit I am now on his NHS list, so it paid off in lots of ways. X
Hi Lauren, sometimes just writing your thoughts down, can help especially to a forum like this where everyone will know exactly what you’re going through (health wise). Waiting a month to see your GP seems like a long time, do they do ‘on the day’ appointments? Does the surgery have an online system where you can see yourself what the test results are?
Having an appointment with rheumatologist depends on the area you live in and whether the hospital see it as routine or urgent. (Despite GP saying urgent) you could ring appointments at the hospital and ask how long the wait is, they should be able to tell you, how long and what it’s listed as. If it’s a long time you can go back to GP and ask them to expedite the appointment which might bring it forward sooner.
In the meantime while waiting you need to see what else the GP can give to help you manage. You say you take ibruprofen, do you also take paracetamol?
Most importantly, be kind to yourself. Having 2 growing children, a dog and work , plus this time of year is exhausting! You possibly will have to learn adjust your life style, just doing that is challenging in itself. If your body is crying for a rest try and work out, what can be left for another day.
Lupus uk has been very helpful in providing me with a group that has a whatsapp, meets face to face and once a month on zoom. There are one or two still undiagnosed, others with many other add on syndromes to our lupus like sjogrens or fibromyalgia. It's worth joining a group for support and advice from ones who've been suffering for years and understand the struggles with the medical profession. Also when you're low there maybe someone you can message or meet up with that can help.
As an extra point and it may not apply to you but be aware that there are quite a few of us who have lupus and other conditions that are negative on all or most blood test. It doesn't mean you don't have it necessarily. Make sure you see a rheumatologist who is specialist in autoimmune conditions. They recognise symptoms and don't just take bloods. Kerp a symptom diary and take pics of rashes etc. This will all help when you see a rheumatologist. Just be aware that a lot of rheumys don't specialise in autoimmune and can be a waste of time seeing as many of us have found out. Lots of us have had to go private the first time to an expert. Research the consultant you're going to see and if they don't fit go back to your gp with one who is an expert. It can often save time, frustration and tears in the end. Hope you get a diagnosis soon. Xx
Hi lollipop, firstly I think you are amazing to keep your job and be a Mother to two children, given how you have been feeling for so long. Autoimmune diseases are complex and take so long to to diagnose and when you are being fobbed off by a GP it is frustrating and demoralising. Your GP should now be able to prescribe more potent and effective pain relief.
You are now on the right path at long last. People here understand what you have been through and how hard the journey is. Be kind to yourself and I hope that you and your family have a lovely Christmas 🎄 xx
My gp does urgent appointments, every day they have a number of appointments put aside for urgent cases, but you have to call as soon as the surgery opens to get one. Otherwise routine appointments area month wait.
Hi lollipop98, like you I am waiting for my first Rheumatology appointment. I was referred in August and referral expedited by GP but still waiting. I'm in Hull.I reiterate what others have said, pacing is the tried and tested way to manage fatigue.
With regards to blood results, have you registered with the NHS app? I can see my blood results that GP receive on the app. It offers an explanation of what they are for too, but then Google and this forum has helped with any results I don't understand.
On the App I can also see what info GPs have written on my record following any consultations with me.
You have been feeling very ill for a long time. The average person cannot fathom the experience many of us go through before getting a diagnosis. It is partly the sneaky nature of these autoimmune diseases and partly lack of alertness on the part of GPs. So good for you for using Dr. Google in a way that was helpful.
The one thing I would add is to stay in touch with your GP. They need to know of any changes. It is hard to know if your GP can prescribe other medications but you should definitely call with any chest pain, new rashes, fever or anything you are worried about.
Try to get rest, though that is a challenge when you are caring for children. You should have answers soon.
Welcome! You’ve found a very supportive group here, its so nice as I hope you’ll find to find others in similar situations who understand what you’re going through.
My advice would be , if you have the name of the rheumatologist you’ve been referred to (or can find out), call their secretary at the hospital. I’ve always found my specialists secretaries so helpful , hopefully they can give you an idea on waiting times. When Ive been particularly bad sometimes Ive managed to have my appointments brought forward by speaking to the secretaries.
I’ve learnt myself to manage and advocate my own situation medically as otherwise you can just sit on waiting lists , I’d also say really educate yourself on symptoms/conditions, ask questions in appointments and don’t be afraid to suggest things, tests/diagnoses. Auto immune disease is complex and can often overlap with other conditions.
I do hope you get answers and more importantly treatment soon. My daughter was young when I was first ill and undiagnosed, I also worked full time in a demanding job , it’s just exhausting trying to keep going and very lonely too. So look after yourself and listen to your body.
My heart goes out to u and I feel the same! I’m in America, so I can’t help with the healthcare questions. I found this group a week ago after 5 years of looking for answers. I have MCTD (mix of lupus and RA) and Hashimoto’s and it’s awful! Before my life was debilitating! Horrible joint pain, nausea, fatigue, brain fog, memory loss…the list goes on. I literally could feel my body attacking itself. I’ve been on Low Dose Naltrexone for over a year and it has helped tremendously! No side affects and few flare ups. Bad flare ups occur now when I get sick or seasonal allergies get bad. What has also helped is a gluten free diet. I’ve heard overseas though that ur food isn’t processed like ours, so not sure how much gluten poisoning ur getting. I also follow an anti-inflammatory diet. Inflammation=pain, so get the inflammation under control. I also cut way back on drinking bc alcohol and sugar=more inflammation. I workout 5 days a week and I promise it helps a ton! It’s almost impossible to start bc the pain is so bad, but the pain does get better the more u get ur body moving. I’ve attached a few home remedies u can try in the meantime. The tens unit basically massages ur body and is AMAZING! I literally wear it at work every day! My doctor friend suggested NRF2 bc he’s seen it reverse autoimmune symptoms. I also use Modere bc my toe nails fall off from the Hashimoto’s 🤦🏼♀️ but it also helps with joint mobility. I’ve only been doing it for just under 2 months and I am starting to notice a difference in joint pain. Nails and hair improved in a week or 2. I did used to have migraines all the time and I think the change in diet got rid of those. I never get headaches anymore and I’m still in shock over that. Sadly, I’m on here because I’m still questioning “will this get any better?!?” Yes I’ve had improvements and have gotten my flare ups somewhat under control, but I feel like I have to kill myself to stay healthy! Up at 5:30am to workout, then work till 6pm, then sauna and cold plunge and in bed by 9:45pm. Strict diet, very little alcohol, tons of vitamins and supplements and I do all this to basically feel ok. I wish u the best and my heart goes out to u. Just know u are not alone ❤️
The thing about your post that most frustrates me for you is not having access to your GP or your test results. I’m a long way into my life and my autoimmune journey - which started when I was a child but was only recognised clinically as autoimmune when I reached my late 30s. This meant that pregnancies, parenting and working were all done at half mast - with me looking and feeling like an exhausted blob throughout. Thankfully my 3 young adult children are all flourishing with good jobs and lovely partners so I hope you can take some consultation on this at least.
Re the GP practice - I’ve never heard of such a remote and unhelpful set up. I wonder if you could email or write to the practice manager requesting copies of your test results and the GP urgent rheumatology referral by PDF or hard copy. You may have to pay for these, although my GP practice send by email in PDF format so no charge. You have a right to access your notes I believe and early January is ridiculous. There must be a system whereby you can complain if they continue to be so obstructive otherwise but if you were going private to speed things up you’d need copies anyway so I think it’s time for you to get tough with them. Don’t let reception fob you off please. This is something you can do for yourself and knowledge is power so you need this information to begin your journey towards diagnosis, treatments, self management and, hopefully, a big improvement in your health and energy levels. Best of luck xx
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Rapid decline in ability - do I go to my GP?
Frustration 
Feeling awful.
Can anyone relate
