Bit of a random post I know, but I'm just looking for some advice. I'm 26, F, from Scotland. 😊 So I was diagnosed with Endometriosis in February this year after 10+ years of symptoms, it was treated with Helica. My recovery was really really tricky, and I had 3 lots of antibiotics as my belly button incision would just not heal. Anyway. I'm finally starting to feel a bit better in that regard. For around 6 weeks I've had some other symptoms that haven't been great to say the least. My levels of Fatigue are through the roof, I've always been tired but recently it's just became unbearable. I always need Folic Acid supplements every few years as they always become low after a while. I have very very bad joint pain, and muscle pain. I've had this sort of pain in the past but never to this extent and its getting worse. I have lost a stone in 2 weeks. Without trying, I just don't seem to have much appetite. And the other symptom I've always had is a typical 'butterfly' rash over my nose and cheeks, sunlight or cold makes it worse. When I was a teenager I used to always get teased over it and told 'Why are you always embarrassed?' tried covering it over with makeup, and using Acne and Rosacea creams on it to no avail. 😕🙁 I've also developed really really cold hands and feet, and I'm just always cold in general. They will turn very white/blue and be very very sore. Anyway, I went to the GP 2 days ago to discuss this. He was very understanding and lovely, he said 'I'm not saying you have this condition, but given your age and symptoms and rash it fits, go and research it'. He's done blood tests and referring me to Rheumatology.
I was just wondering if anyone had any ideas/advice whilst I'm waiting for all this? Obviously I don't know how long I'll be waiting due to Covid. All the GP said was keep warm in the mean time lol.
Any advice greatly welcome.
Thanks
Rhiannon
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UPDATE 25/04. This is my current rash on my face, any ideas of anything I can do to help it? Make it a bit more soothed lol? Obviously I have no proper diagnosis yet. Also, has anyone ever had a rash like this on their arms? I've had this for years but recently it's became a lot worse/prominent, with the skin becoming quite mottled.
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Your symptoms do sound very typical of lupus but I am no doctor and you won't be able to get an official diagnosis till your results are in.
For now have you been given any medication?
Keeping warm is good, cold hands and feet sound like Raynauds, wearing fluffy socks and keeping a hot water bottle near by are a good idea, I even got my self an electric blanket because of how cold I get sometimes!
Try to keep up eating when you can but don't force yourself, gentle excercise when you can but pre treatment mainly a lot of rest helps!
A must is keeping a diary of symptoms or any new developments you notice, when you do get a rheumy appointment they will ask you what symptoms you have, how long and how bad they affect you. It can also be used as a genrel diary to help you emotional or rember stuff since brain fog is a symptom as well!
Other things to look out for are; hair loss/ thinning and mouth or nose ulcers
If your symptoms get worse or you are struggling please phone your gp again. Lupus can be or become serious if left untreated. Lupus UK has a lot of leaflets and an advice line as well
Thank you so much for your reply, it's really helpful! 😊 Nope, no medication atm. GP didn't really say all that much tbh. I'm going to start a symptom diary today. Luckily I have a YuYu hot water bottle which I need for my Endometriosis belly and I have an electric underblanket. 😊 The main thing atm that's affecting me is the rash on my face and the cold, it's very frustrating!
I'll have a look at the Lupus UK site. Thank you. ❤️
Hi Rhiannon - for background, I have SLE, finally diagnosed 2.5yrs ago, previously Undifferentiated Connective Tissue Disease.. and prior to that flaying around in the ether trying to deal with all myself and no clnicians joining up the dots! So it all sounds familiar, and had bad endo operated on in my 30's (am 57 now!). . I used to get a very clear dark red nose to the outer reaches and was called "rudolf". ;). I realise always comes on when exhausted... the bod telling me to rest I always thought... and no, I'm not a lush ;)!
Some advice that might help: Keep photos of all your symptoms and write out a detailed, dated timeline of your symptoms for when you speak to rheumatology - they love that as helps them do their job and they will keep emails with pics on your file - priceless for them. Any symptom that isn't even related to anything, put it down. I have to say losing that amount of weight in that short a time is unusual. What did you GP say? Needs to be looked at, if you haven't been trying to lose. But maybe you've lost your appetite post op(?) - which happened to me the other year.
Also my brother has raynauds (as do I since very young) and his GP has finally put him on nifedipine (as I used to be). There used to be a modified release version but they have discontinued it for some reason - I used to have to have that one as I have atrial fibrillation (not so bad now after having ablation) the pills made my heart go even more all over the place. Was just wondering if your GP suggested you take it- and if he did, and you have irregular heart beat, it would need to be a brand that doesn't affect heart - I am on Lacidipine now. Doesn't work as well but better than nothing. He might want to leave it for your rheumatologist to prescribe... it really is a life changer! Especially any time apart from Summer! I found pre meds that whirring my arms round makes the blood go to the end of the hands - found this tip from a Canadian website for women who are going to be in sub zero temps! Great as I was going to be on holiday in Canada in sub zero temps! But otherwise.. lots of gloves (I use fingerless ones at home if under 16deg) and popping them into warm (not hot) sink of water if an attack comes on... and lots of nice warm mint tea or something.
ALSO - do go on Lupus UK as they have a huge amount ofinformation on there to help you... or call them if you need to discuss. They are very helpful.
All the best and hope you start to improve generally, and get that rheumy apppointment, even if on the phone, asap. Take care, be safe. Dx
Thank you, nice to see a fellow Endo sufferer on here. Hope you're keeping well and safe. ❤️
GP hasn't prescribed any medicine or suggested anything other than keep warm and rest.
GP didn't really say much tbh, I can imagine he is probably waiting for Rheumatology to see me.
Unfortunately I am on the front line, I'm a support worker in social care. So it's pretty tough atm, and I've already had loads of time off due to Endo.
I'm finding it very difficult atm, understandably.
Ah that's rough for you right now, as a very intense job, supporting vulnerable adults -I met tons of support workers in the last 6yrs of my job as Care Manager (social worker without the degree). Such an amazing job you do. I hope your support agency are supporting you... I imagine they will be, considering the business. Wondering where you are based. Not East Sussex area by any chance? Please take more time off if you need to. Also have you seen your bloods results? What is your neutrophil count? or the white blood cell count as a whole? Must be careful if it is low as you will be less able to fight infection.. and that's never good, but right now, it's something to find out and discuss with your GP as if it's too low I'm wondering if you should be out there.... You can ask your GP surgery to give you the neutrophil count over the phone -or just the full white blood cell count. Neutrophils need to be over 2.0 but 1.7or so isn't too bad(not that that's for me to say, just what my Rheumatologist said - but then at generally 1.0 to 1.4, he also told me I must not go out - and you are putting yourself in front of vulnerable adults who may not be as able to be as careful with keeping things as disinfected as others might due to the complexity of their diagnosis etc -not sure what sector do you work in LD, MH or physical disability-but no need to discuss that on the site as confidential). If it's under 1.0 or even 1.5 then I would discuss with your GP again -just ask them to call you as soon as they can. Take care Rhiannon, x
Aha I had an inkling. I was in the Learning Disabilities Team.... so very well aware of who you are supporting -the whole range. My job was to review or assess, plan, beg for the budget, and identify who best to support, get in place and review.... you do an AMAZING job. Very well done you... but yes, you are open to risk out there - complex and varied situations, as you know xx
One thing you could try while you wait for a diagnosis is vitamin D tablets. I have lupus and had unbearable fatigue until diagnosed. My rheumatologist told me to take vitamin D which made a huge difference and if it turns out you don't have lupus vitamin D won't cause any harm. Tesco sell high dose vitamin D. I take 2 of these every day. Make sure you get the high dose one and not the regular one.
Funnily enough, I was diagnosed with lupus a little over a year after I was diagnosed with endometriosis aged 20 - purely because I think that the laparoscopy exasperated any lupus symptoms I had (and ignored!), making it all worse.
I’m glad your GP is investigating this for you, my gynaecologist was the one who pieced it all together for me and did the bloods. While you’re awaiting results, I’ve found hot water bottles are my new found best friends, and make sure you rest where you can & be kind to yourself. In particular, I’d try and be extra careful around your periods, as I found that my periods make my lupus symptoms increase tenfold, and obviously the endo symptoms too. My rheumatologist says hormones are closely linked to flares so periods aren’t fun at all! Also, as others have said, keep symptom diaries, as this will help the consultant have a grasp of your symptoms - whenever I have a first appointment with a consultant, I usually write a page or 2 listing my symptoms, other conditions, medications etc so it’s easy for them to follow and refer back to later on (especially because I can get really nervous and flustered during the initial appointments).
Best of luck with everything and hope you get some answers soon x
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