I have just been diagnosed with Lupus and am slowly getting my head around it. Mine was "stumbled across" whilst being investigated as to why i have had a swollen left index finger for over 12 months ( this has now been found to be a cyst) and 1 of the departments i was sent to was Rheumatology where an eagled eyed consultant spotted something he didn't like with regards to my fingers. Long story short - i was diagnosed with Lupus in June 2019 - i had already had Raynards for approx 10 years.
At the moment I feel like a fraud as I don't appear to have any of the health issues mentioned when you google lupus, such as the facial rash, and although i have aching joints, i have previously put this down to the fact that i am 53!
I feel like i want to cry all of the time (haven't so far) and at times feel overwhelmed with the do's and don'ts (don't eat garlic and do wear sunblock) and i think having people who are on the same journey as me and will hold my hand whilst i travel this road will be a big help. i have a very supportive boyfriend and family and my place of work are looking at putting things in to place for me (such as working from home 50% of the time)
Thank you for reading this.
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pattypatchwork
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U will find out about all things lupie here..U R NOT ALONE!!
Big shock always rocks the boat..I would say have a good cry..rant n rave..then gather yourself together n definitely thank that eagle eyes rheumatologist!! Once u get to grips with things u will get a handle on it..🤝🤝🤝xx
Thank you for your kind words. I'm getting my head around how big a deal having Lupus is...I hadn't realised that it can cause such damage if untreated. like you say - thank God for the consultant who spotted the red marks on my fingers which i hadnt realised were anything special!
I eat garlic and gluten but do wear sunscreen and hats ;). Other than some kidney involvement, 20 something years ago, and a couple of large strokes last year, I have very few of what are referred to as flares. Do I ache, yes but mostly from wear and tear, turned fifty in March. Am I fatigued, yes as I still have a school age family and a job, but I do now suffer from PTSD due to my lupus/ APS related strokes and with this came that " on the verge of crying " that you are experiencing.
Cognitive behavioral therapy for my PTSD has changed my whole life for the better! Receiving a serious non curable disease is a huge blow to our psyche that can cause both depression and anxiety. Treating our mental well being is as important as treating our lupus bodily symptoms. Utilizing mental health specialists is shown to improve quality of life and help promote remission and prevent subsequent flares in autoimmune diseases. I highly ask your GP about possible help for your depression symptom.
Thank you for your reply - i thought garlic was a big "no no" and hadn't realised that gluten can be a problem.
I think the "tears" feeling is down to finding out what Lupus entails and what could be in my future, I've heard of a woman ending up in a wheel chair. I keep hoping that they will say "oops - we have made a mistake" but I doubt that will happen now as i have been on Hhydroxychloroquine for a few weeks now and I doubt they would have given me this if they were't sure i had it.
Hydroxychloroquine is the first drug I was prescribed when I got lupus diagnosis..don't fret too much coz we all have different things that we can or can't have..I eat garlic n wheat which doesn't cause me any probs!! Xx
Find the time and place to have a good old weep...or go for it, create a weekly you-time...and then plan your future with the ol' wolf at your side...it might change your goals, or how you want to spend your time, or who you want to spend it with, but sounds like you're off to a flying start with family support and an understanding employer
No one can say what course lupus will take, so make sensible arrangements just in case - eg a medical alert bracelet - and relish the good
Full remission is possible, you need to learn what your body likes and doesn't...I eat a LOT of garlic, and it helps control the fungal infections I'm prone to, and I sunbathe as I'm not (yet) photosensitive (that can change, especially with some meds)...I checked that out with the author of the UK lupus guideline for consultants, and she was ok with it
Rheumatologists have a rule of thumb that the greater the age at onset, the more mild it will be....that doesn't take into account the very long time to diagnosis for many, but if your symptoms are fairly new-ish, then onset was possibly not so very long ago?
hi, not too sure how long i have had this as they have decided that my Raynauds is secondary raynauds and as i have had this for approx 10 years, maybe i have had lupus for this length of time as well and have been putting the aches, pains etc down to other things.
If you haven't already had them, some checks will be run to find out what's been going on - like a chest x-ray, that one took me by surprise at my first rheumatology appt! - and you'll have a baseline eye test (then annual eye checks) for hydroxychloroquine treatment
I suspect I had it for about 18 years before diagnosis with only quirky damage done (at sites of old injuries). All the best! xxx
Diagnosis is a very upsetting time but try not to read too much! Everyone’s lupus journeys are completely different and the fact you aren’t suffering with too many symptoms is a very positive sign that it may stay mild and even obtain remission with hydroxychloroquine .
I haven’t read about no garlic! 🤔 I love garlic!
Great your work has been so understanding.
Have a good cry but Keep smiling, once you get your head around the bombshell of diagnosis you’ll be fine xxx
So sorry to hear your diagnosis. It is a huge shock and blow and will feel like your whole life will change. But, everyone’s journey is different, and there are many layers of the illness. Work with Lupus one step at a time, don’t let it overwhelm you. Take the sensible precautions - sunscreen helps everyone, plenty of rest and a good work life balance is good for everyone, good diet keeps us looking great. Take hydroxychloroquine as it is a wonder drug.
After 10 years I still learn a little more each day, I have had times with very few symptoms and times where it has been harsh and hard.
Know that this group can help you at each step, have a cry as your body is dealing with a huge thing, find a counsellor as it helps to talk (wish I had done that). But, do the journey one step and one day at a time.
Thank you for your reply. i have been thinking of going to talk to my g.p. about my feeling of wanting to cry and possibly being signed off work for a short time while i get my head around it all but then again i am betting being with people.....
Hya, my lupus was also stumbled across when having tests, I too do not have the rash unless I expose myself to the sun. Symptoms are not the same for everyone. Xx
You will find the best support and advice here, everyone is going through or been through what's happening to you now.
I can't describe the relief when my questions got answered and not by doctors, by the great people in this group that had dealt with my problems themselves. They told me what exactly I would have to deal with and what medications I needed to ask for, I am like a different person now compared to 2 months ago🙏
The best thing you can do is post here if you have any worries or concerns I'm sure someone will help you🙏🤝🙂
A lupus diagnosis is a lot to take in and will be a massive shock to you especially as you were not expecting it. Feeling upset and wanting to cry is perfectly normal, so letting it out on here where we all understand is the best thing to do. When you have got over the shock you will start feeling brighter again.
But if you have to get lupus you are one of the lucky ones, having such a good rheumatologist will be a big part of keeping your lupus under control, as will having a supportive family.
No two lupus patients will experience all of the same symptoms so try not to let what ‘might ‘ happen affect the way you live your life. You will have the knowledge to help yourself, so carry on enjoying your life.
Any time you need to cry, talk or rant there are people here who will listen😀
If you are working from home be careful with wifi. I have to have everything wired because I am EHS. 5G is going to be even worse - see the sites below and do research. People like us are vulnerable to the radiation and millimetre microwaves.
Just found this, but I totally agree with your post this whole world is corrupt and driven by money, even cures aren't released because they're not cost effective.
Next generation 5G cellular networks, which began deploying in 2019, use higher frequencies in or near the millimeter wave band, 24 to 52 GHz.[4][5]Millimeter waves are absorbed by atmospheric gases so 5G networks will use smaller cells than previous cellular networks, about the size of a city block. Instead of a cell tower, each cell will use an array of multiple small antennas mounted on existing buildings and utility poles. In general, millimeter waves penetrate less deeply into biological tissue than microwaves, and are mainly absorbed within the first centimeter of the body surface.
Yes, I cannot understand why more people aren't writing to their councils and MPs and about this technology and their rights to have their health protected and not having given their consent to this danger to health.
Dear Pattypatchwork, I was in exactly your situation in 2012, diagnosed with something with a funny name that I knew nothing about and in the middle of a massive, life threatening flare. Once I stabilised, I wrote a handbook for lupus that covers all the basics.....from its history, the etymology of its peculiar name, it's medications, the mental implications through to diet, and it was published internationally earlier this year. Members of this site contributed to the book and it has received five star reviews. It is available on Amazon in all formats - Ebook, paperback and hardcover and is called "How to Stay Sane in Pain - Clarity, Resilience and Calm with Lupus". Further details are on my profile. With much help from other lupus sufferers, I just tried to write the book that I really needed when I found myself feeling just like you do now. Others are quite right when they say that full remission is possible and there are mild and moderate forms as well as severe. It is brilliant that you have been diagnosed and are on the right meds...you will be much safer from now on. Wishing you the very best on your journey, with my very best regards, Lily
My cousin was diagnosed with lupus in error. And then they find out she doesn't have lupus. Her truth illness was colistis. I naturopath doctor find out and she is doing better now. But she needed to change her diet.
You show me a perfect person, and I will call them a liar.
All of us without exception have imperfections in some manner.
At the moment yours are health related. Its playing on your mind to a greater degree because you have just been diagnosed and now are contending with all the what ifs. That doesn't get you anywhere. NOBODY knows what sort of health journey you will have.
But get it into perspective. Nobody, even without a lupus diagnosis, knows what their health future will be.
The thing we all share is that we will all do better if we look after ourselves. Both physically and emotionally. One impacts the other. Your diagnosis should serve to tell you that there have been areas of your life that you have been neglecting, and now you must focus a bit more on dealing with what had caused that.
Relationship issues are magnified if we are not well. So take some time to nurture yourself and you may find the relationship issues fade.
You may be finding out things concerning foods that you were unaware of. Think of that as a positive. You have a chance to make changes. It can be done.
Dont try to live the entire remainder of your life at this moment based on a diagnosis. Use it as a starting point for all the things you are going to do in a way that now is to your benefit.
Perspective is your greatest gift right now. Make sure you are reframing your perspectives to maximise your chances going forward. IT CAN BE DONE.
So sorry to hear about your diagnosis. I’m sure you are feeling very overwhelmed, confused and worried about your future. These are all perfectly normal reactions.
When I was diagnosed in July 2014, I had no idea what lupus was. So, I started researching and educating myself. Luckily, I found this site which is full of supportive and experienced people, willing and able to help.
For me, my diagnosis came as somewhat of a relief after not feeling well for 2 1/2 years. I saw so many doctors - all of whom took one look at me and told me I was “fine”. I was NOT fine and thankfully, a random test got me in to be seen by rheumatology where I was fully tested. Once diagnosed, I was immediately put on hydroxychloroquine.
I’m so glad that you have a wonderful boyfriend who is committed to you. A good support system is key. Make sure he understands what you are feeling. I would have him attend all your doc appts. Lupus can limit what you are able to do. It sounds like currently your symptoms are mild. They very well may remain that way for you.
Lupus is unpredictable. I keep a daily log of my symptoms. It helps me tremendously to figure out triggers. I also keep track of meds and supplements and even, what I leat and drink.
If you’ve been prescribed hydroxychloroquine, you will want to have your eyes checked by an ophthalmologist every 6 months as this medication can cause eye issues. I have not experienced this and my eyes (so far) are good. The only issue I had with the drug is I can only take the name brand Plaquenil as the generic brands caused bad stomach issues for me due to some filler ingredient.
Sun is a big no-no as you’ve been told. I don’t know about garlic - I’ve never had an issue and eat it all the time. Gluten *can* be an issue for some; it isn’t for me (I’ve been tested many times).
Fatigue remains to be my most annoying symptom so I rest when I need to. I’m very fit and maintain a consistent workout schedule. It’s not easy but cardio and weights keep my body strong and my joints flexible.
While I can’t do everything I used to be able to, and at times I truly miss the old “energizer bunny” me, I’m thankful that I do not have major organ involvement and that I’m still able to function.
It’s going to take a good amount of time for you to digest this diagnosis and what going forward looks like for you. Try to stay positive, ask a LOT of questions, and learn as much as you can.
Welcome to the LUPUS UK Community Forum. I'm really glad that you have found us and I hope you will find this a helpful place for information and support.
Please don't feel that you are any type of fraud. It is very important to bear in mind with everything that you read that lupus is very varied in its presentation. No single person will present with every symptom of lupus. For example, only around 30-50% of people with lupus will ever experience the facial rash you mention.
You are correct that it is important to wear sunblock. I've discussed garlic with a team of dieticians at UCLH and their not currently aware of any clinical evidence implicating it in higher lupus disease activity or flares. I have seen this advice somewhere before, but I'm not sure what the origin of it is. It's best to try and stick to reputable sources of information and not dive too deep into the google rabbit hole if possible.
If you'd like any more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info....
If you need anything else, please let me know and I'll do my best to be of assistance.
Thank you for replying to my post and yes, i am finding this forum a great help and support network.
At the moment my life seems to be a battery of medical appointments but at least I will know where I am up to with regards to any damage the lupus may have caused me. I have a very supportive family and thankfully, with my being a civil servant, my employer takes ensuring I am able to work comfortably and safely very seriously which gives me peace of mind.
It is great to hear that you have a supportive family and employer - this can make all the difference. I'm sure there are lots of medical appointments at the moment, but hopefully you will soon be on a stable treatment regimen and these will gradually become less frequent.
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Confused!
confused
Very upset was denied vaccine at the centre! 
I'm confused about the sun
So upset
