Help. Don’t know who to contact if anyone. Could be I’m a Jessie! On Wednesday of last week my left foot started swelling (I have Lupus, Sjogrens and fibromyalgia with costochondritis). Then the next day the other foot was a bit puffy. On that day I travelled from Wales to Bedfordshire and then from there to Gatwick. My husband was driving because I still have vertigo after taking Alendronic acid on 10/3/22. We stayed at Gatwick overnight with very little sleep and headed for Marrakesh. When we got there it was glorious sunshine and temperatures of 33 degrees. My feet swollen even more. To the point that the shoes for the wedding that were very slack on me wouldn’t even meet at the strap and I attended the wedding in painfully fitting fit flops! I took sheepskin bootee slippers with me because I get cold so came home on the Sunday after the wedding wearing those. They were so tight by this time that they were painful. By the time I got back to the UK on Sunday my legs and feet were swollen. Then as far as my backside felt hard and swollen. Today the backside and tops of legs has softened but I now have a rash on my lower legs that looks like HS Purpura (again). I have some blister like marks on my forearms that weren’t there yesterday. I am reducing steroids and as of today am taking 7mg down from 10. Tomorrow I drop to 6. I am also just at the end of a 20 day course of Stemetil 5mg (3a day) given to me by rheumatologist to stop the dizziness which it hasn’t. So, question - do I just ride this out and see what happens? Do I phone GP who doesn’t seem to care? Or do I phone rheumatologist and leave a message on the 48 hour line where they should phone you with 48 working hours of receiving your message, but in the past have not? Is this lupus related or stress, or if it is HS Purpura again what is causing it, it’s usually an infection. It’s driving me mad. Legs are tingling and sore, feet are really painful and I feel like I’m walking on pigs trotters not feet at they don’t bend properly, hips hurting, ribs feel really hot and painful, sores up my nose again, rash on legs, different thing on arms. Headache, dizziness still as bad. Fed up and feeling crap. Moan over!
What is going on??: Help. Don’t know who to contact... - LUPUS UK
Had it been me - I'd have been to the ED by now.
Usually 5-7 hour wait and they just won’t be interested, I’m sure. I’m so fed up of there not being someone you can speak to quickly. I’ll probably phone the GP surgery tomorrow and be number 38 in the queue waiting to speak to the Rottweiler receptionist, at 8.30am, who says they are only taking on calls from urgent enquiries and if I think it’s that urgent I should go to A&E. feeling a bit sorry for myself at the mo. I have brought myself to bed to keep my legs up and read. So so so pissed off!
As I just said to someone else reporting an 1 month wait for a steroid injection for back pain - I'm staying here! My GP is horrified at the progress of online/phone medicine. I can still see her same day f2f and have been able to for most of the last 2 years - turn up and wait but not 5 hours! There are waits at A&E but depends on who triage allocates you to - being a ski/mountaineering region if it is the orthopod you drew the short straw in season but surgeons are much shorter waits - I was in and out in half an hour when I had a 5cm skin flap that needed stitched.
You are lucky. A& E waiting can be anything from 4-11 hours at busy times. It’s a disgrace. A&E is our version of ER.
If it's any consolation, I can only speak of myself and my colleagues who work in ED. You will and should be triaged quite high, like an orange probs, with what your experiencing. I wouldn't take the chance, I'd just go, the earlier in the day the quicker you should be seen. 💓
Recent holiday, hard swollen legs etc - would make them consider DVT. With your other symptoms they may well consider a septic/cellulitic picture. Worry about compartment syndrome, purpura, nec fasc etc. The list goes on. Either way you would be defs seen. Your GP would likely either not listen or would send you to ED anyway with what your describing.
I hope you get the help you need soon. Things like this can get nasty quick.
You've saved me saying it - I try not to be too scary even when I'm thinking exactly the same as you
I'm British - my daughter works in a Yorkshire ED which is what they call it. As Lottie says - I think you would be seen fairly speedily even in the UK
Not trying to scare or freak anyone out (I'm usually a bit more subtle, sorry 🤗), but I'm just saying that all your symptoms are VERY valid of ED and speedy triage.
- Yorkshire ED (tough stuff for your daughter - frankly we need more of everything in Yorkshire/as I bare witness as I'm born and bred)
- north Scotland ED albeit has the same problems it being northern 🤦an all.
P.s. I just want you to be okay, sending hugs x
Oh yes - I usually start subtle. It is always such a relief when someone reports back they went and what happened. On my home forum we know we have saved quite a few people's sight when GCA was threatening. But just recently someone was having DIB - the way she described it I'd have dialled 999 long before posting here - and about 6 of us told her to do just that. She was waiting for the GP after the weekend.In the end she collapsed and someone else called them - double massive PEs! In the end she was OK but it must have been a bit squeaky.
And todays announcements about the grants for levelling up are going to be such a help - NOT. Far too close to London ...
I’ve just phoned the 48 hour helpline. They say there may be a delay from the 48 hours. They are only dealing with people in flare up. So I explained the whole problem and as usual ended up crying down the bloody answer machine. Partly from frustration, partly from fear, partly from pain. I hate it when I cry over stuff like this but it’s so scary. I only saw the consultant about 2 weeks ago. He’s not going to see me again! I just want advice. If it gets any worse I’ll phone 111 or go to A&E. thank you for your help and concern. X
The helplines are hopeless for urgent problems very often - even mine here for rheumatology is tremendous Mon-Fri, 8am to 4pm, they will send an ambo if it is needed but outwith those hours, nothing. We don't have an equivalent of 111 either but 112/999 is always there.
But please - if it gets worse, 999 or A&E yourself. Not 111
My specialist nurses line runs from 9-12 Monday to Friday except Wednesday when it closed! Then it’s a gamble who you get if they even ring back.
Sounds really practical! 111 is worth a try - but if necessary, 999.
Last twice they have phoned back but once I gave up after 8 weeks. I was in tears on the answer machine saying I was really frightened and nobody phoned me back. Told consultant 12 weeks after the call I was still waiting and he said “oh sorry” and that was the end of that!
You poor soul... My heart 💓 goes out to ya. You have just reason to cry, I've cried over much less. And most people don't know pain and cry much much more. You've just reached the end of what.you can cope with, and the idea of waiting on someone to possibly answer back is terrifying. Please stay safe ❣️❣️
I'm terrible myself though.
I know what I should do, but it's not easy. Plus I don't qualify to be seen in Scotland ED, where we can send people away at the front door. Not when I work there lol. You really have to not be conscious for people to bat two eyelids, and still they'd probs shake me conscious and make sure I got back to it!
Glad you convinced them to seek help with DIB, a problem shared at times can be a problem solved. - 2x massive PEs, its barmy how big they can be sometimes. I have a PE radar at work, if I can get away with doing the tests without a consultant finding out that's always good. Bc they do hate me doing D dimers even though it's a test used for those deemed low risk.
Imagine how we'd use the same money up north.... Vote Yorkshire first (jk)
Always give me the shivers - one of OH's colleagues in his 30s presented with a sore leg after being kicked playing footy. Very suspicious of DVT but he was young so no D-dimer and sent home. Dead by morning. For what a D-dimer takes ...
That's just shocking and terrible indeed. So easy, back within the hr. And it's there to utilise surely. Yet people hate a false positive result. But better to be safe imo
Wow, I think you need to reach out to someone as soon as possible. Don't wait. I wish I had some answers, but all I have is concern. Will keep you in my thoughts.
Many healing hugs.
Thank you. Just left a message with rheumatologist specialist nurse helpline. Only dealing with people in flare up! Let’s hope they think my problem is urgent. X I just don’t want to be labelled a moaner or a hypochondriac!
They shouldn't possibly think that way when youre obvs quite ill indeed 🥺 I've seen a far many come in to ED with something quite minor indeed (UTI/ear infection/skin rash/intolerance) just bc they can't see any GPs (or choose to see us straight away and not see their GP). You have a right 👍 to be there. Even though hospitals in general are not nice places to be..💖
Like PMR I'd be going to the hospital or contacting out of hours if I couldn't get hold of my Rheumatologist secretary.As for the aliens from another planet aka drs receptionists don't let them fob you off .I can see my gp f2f now .hope you get some help soon SML xxxxx
Aliens from another planet seem to think they have a medical degree by virtue of the fact they work for a GP! I have had so many bad experiences with them. They are rude, nasty and dismissive of your conditions. They also seem to be psychic because they diagnose what’s wrong with you without asking all the symptoms. Clearly very “special” people and definitely a breed apart from the rest of us. X
I've had my fair share of run ins with receptionists in fact my gp once told me off for saying they were from another planet 🤭. I have open access to my gp and if I request a call im supposed to get one for the same day but they still try to say no xx
They are a nightmare. They are meant to be a filter to put patients in touch with the right service. Instead they see themselves as a barrier to stop services. Fed up of them! Our local paper did an article on the abuse they have to endure! Really? They are the abusive ones. Conversation is restricted. They never say “what’s your name and address please?”. Oh no. “Name? - address- date of birth?” I don’t answer straight away until they say “what’s your date of birth” but you never get a please! If I’ve gone from number 38 in the queue and nearly an hour in time I expect some common decency and politeness. Too much to expect it seems.
I feel you. You've lost faith in a NHS where access to services is being ever more prohibited. Even in my time, it's gone from ring at 9am and you'll get a same day appt irregardless, to filling in e consult forms, getting email responses, waiting weeks and months for help, largely bc of the privatisation of GP and of secondary services.
Working in ED, I often feel like we are one of a few who still stick to the public access, NHS. But we are over used as without the GPs seeing people aptly and diagnosing and treating and referring it comes to us. We treat people that come in with all sorts of ailments that can be treated within the scope of the GP, if they were to see patients in a timely manner. I'm nearly done with Scotland's e consult system, where literally you answer a list of qs and if you answer any possible bad symptoms per se, it just says go to hospital. When it is largely inaccurate on all accounts. I worked in a GP last yr that was the last public GP in Aberdeen, now they are all private.
The system for attaining more money (bonuses) from the government is largely weighed on fulfilling reviews, vaccination programs and screening. Each thing has a bonus applied to it, to essentially incentivise GPs to do them. Essentially seeing people with acute issues, acute on chronic, basically any current illness etc is the least profitable activity. Whereas for each flu jab given, a bonus of 40-60 pounds to the practice is given, and if you reach a certain percentage of your patients with the vaccine you get an additional bonus from 1000 to 6000 pounds. Likewise with asthma reviews or diabetic reviews, you may get 30 or 40 pound bonus per review. And extra bonuses for percentage reviewed. It makes GPs lean away from providing necessary care when needed
Last time I took someone with suspected heart problems - sent by the GP and we were told they were waiting for us - we spent hours in the waiting room and more hours being dealt with. We saw the GP at 2pm and left the hospital at 1am! In the time in the waiting room we saw police drop a woman running away, to the floor in front of us. Two women with mental health issues practically have an all out fight in front of us, and the police came in with a man in handcuffs who looked okay but was put in the treatment room straight away! When we got into the inner sanctum for treatment one of the women with mental health issues was goading a man sitting near us until he kicked off. It’s just not fair. Then when you are in there you get nurses talking about their personal life to each other when there are queues everywhere. I had to speak to one senior nurse and explain as interesting as she may think her personal life is I am not interested and could she please find someone to see my friend who was ill instead of standing around. And we were then dealt with very quickly. It’s just not fair. Do a job you’re paid for. Get the NHS properly resourced. It’s not rocket science! Why aren’t the people who make decisions seeing what nurses and doctors are going through and help.
Conversely, GPs are incentivised, i.e. paid, for NOT doing tests and NOT making referrals. I hate them. And everything to do with the NHS and medics in this country.
Is there any protein in your urine?
You should call 999 .
In 24 hours in A&E on TV recently a patient had a rash on their lower leg, and then they did blood and urine test and found protein in their urine.
You mention swelling also. Best to get things checked out asap.
Also in the long run if you want to do checks month by month, it is possible to get urine dip sticks that test for protein.
It is included as one of the tests on '10 parameter urine test strips' - if you google this you will find some.
Best to see a doctors asap. Make a plan to go to A&E.
Found the Episode on:
Series 26 (2022), Episode 5 "Sliding Doors" 15 February 2022.
"Sports commentator Andrew has a mysterious rash on his ankle."
Various interesting discussions included - seemed to interest staff
Then protein was found his urine and he saw a specialist.
I never used 'Channel 4 - On demand' but think it might be here if of use to medics helping you.
Heya again, nay wanna bombard you. I re read your post and you mention driving from Wales. Where abouts in Wales do you live? The healthcare in Wales is very strained indeed. I use to drive people to hospital instead of waiting for an ambulance when I lived out in the Mumbles. I can understand what you mean by the waiting times round there as well. There are some good uns in ED. Again the choice is up to you... No pressure. I didn't want to sound too full on earlier, it's never easy. You know you. I'll be praying for you tonight 🤗
Thank you. I live in port Talbot
Oh really just over in Port Talbot.Nay far from myself back in the day, when I used to live in the Gower. Lovely area around near you if the weather permits.
Is it the same for you that the main big hospital would be Morriston, albeit there are.some smaller ones if I'm remembering correctly that is.... - I would love to head back that way some day - I had some amazing friends and colleagues.💓
I am so very sorry lovely. Honestly I know A&E can be a nightmare and I myself avoid it whenever I can BUT your symptoms are not a flare in my opinion whatever is going on needs to be investigated and not by a GP who you will wait ages to see if they deign to see you at all. Please put your comfy sheepskin slippers on, pack a bag and go and sit in A & E. They can contact Rheumatology if need be but can do the necessary tests to ensure that you are safe and out of pain. Please don’t wait . Lots of love xxx
To be honest I have no faith in any of the medical profession. If nobody phones tomorrow I will contact out of hours, but they don’t understand lupus. Neither does the GP.
I do understand your reticence honestly. I myself have received some abysmal care or lack of it but I have also received amazing care with caring and professional doctors and nurses. I spent seven hours at A&E when I had a nosebleed. They were rushed off their feet but still I was seen and treated. My husband has just come out of hospital after a heart attack. The care he received was absolutely first class. He could not have been treated any better. It can be so difficult I know but all I can say is that this may not be Lupus related and the medics in A&E should help you and signpost further diagnosis and treatment to ease your discomfort. Xx
Hello, just read this. Please get to the doctors or A&E as soon as you, swollen legs can have all sorts of connections to your organs and something might be under a bit of strain ... definitely get checked xxx
Hi Bowenlady, my feet and ankles also got swollen while travelling to Germany, I took lots of magnesium and put my feet up and this helped a lot. My feet are still swollen but not as bad now. Today I returned to Edinburgh and hope it doesn’t get swollen again. I usually have this problem when I go to hot places but Germany is not hot and recently I started taking HCQ. Before I was diagnose with lupus I used to request from my GP water pills or diuretics but I did t expect this happening in Germany. Anyway, your case seems a bit more complicated but I though maybe in the meantime take some magnesium and this helps reduce swollen legs. A big hug
I was about to say put your legs up so the fluid can drain out easier, and drink loads of water. But Eg74 beat me to it , little bit of exercise then legs up in the air again and more water. Still need to see someone professional though!
you should elevate your legs when you notice there is swelling you probably have fluids which is causing swelling. Try elevating them for a few days and see it should be above your heart. They should go down if it does not then you need to contact your Rheumatologist again and this time you can tell them you have fluid retention on your legs and that you have elevated your legs also you can tell them about all other things when they see you. Also Suggestion is do a test on yourself first check and see if the swelling stays there when you press down. if it does then you know you have obvious fluid retention. you will then need to contact your Rheumatologist helpline asap.. and get them to call you back. Fluid retention is quite common for me as a lupus suffer when you are travelling. I used to get it on long journeys like 14hour flights . it would take at least a week or so to clear up with elevation when never I can , making sure I elevate at night as well. Perpura , on the back of your feet I also had them I used to get it alot but don't any more since on regular antibiotics. I noticed that when I used to come off them I used to get the perpura. I only get them on 1 feet and not on the other . the same with all my lupus lesion major lesion all on my left leg. Yes ,I get cold feet alot. as well. So , Try elevation first keep your both legs up and see how they go . over the next few days try not to be disheartened. They should go down . Hopefully once they go down every thing will settle down as well.
I get worried about hs Purpura as this is what happened the last time it got a hold of me.
ohhh that is very bad if you can send an email of that picture to the Rheumatologist team that might get their attention
That was a few years ago but it has made me frightened as by then my kidneys were bleeding.
if it is that bad it really needs to be seen , my dear not for you to be sat at home. Get seen asap. if you have a dipstick to check your urine check . I always have one at home because of my constant infection. It does not cost much but it does save you a lot of hassle in a long run.
Do you also have APS?? Have you been tested for that?
I don’t know what that is. I’m relatively new to Lupus diagnosis too
APS is antiphospholipid syndrome. It's part of the group of conditions including lupus. It causes blood clots and your symptoms could especially indicate s blood clot, esp after flying. This is serious and potentially fatal. You need to get checked NOW. Call 111.
Sorry to hear about your health, I have been struggling lately with severe back pain which caused my legs to go floppy, I was told that the disc is rubbing on my nerves and I would be given an injection to help this was since 2021 September until today nothing have been done and it’s getting worse.I rang the lupus nurse and was given a quick appointment however I was sent to do X-ray on my knees and arms. I was told she would ri g me with the result that did not happen when I rang and left a message she rang back and said it’s wear and tear and I have to live with the pain or get the GP to refer me to physiotherapy. Both legs swells up regularly and it’s a struggle to walk. I am sooooooo fed up with the lack of help from Rheumatologist and GP also Nuerology
Just GO!! Sit and wait for as long as it takes. If they send you home - go back and wait. This was going on before this recent stuff - my Dad who died 6 years ago now and my Mum 10 years ago experienced exactly the same as you. Didn't want to worry anyone; Didn't want to wait; the hands-on staff in A&E were utterly amazing once you'd got past Reception and always said "Go earlier than you think you need to!" Bypass the GP unless they're a good one! Here's the politics - sorry moderators - it's systemic - too little money being invested in the NHS by previous Governments of all policies. Remember Jeremy Hunt? Stopped the Nursing Bursaries; Forced the Junior Doctors to work longer, for less money, etc, etc, blah. Blah! Actions have consequences! It's not right that NHS staff in the wards are paid so little because it's a calling and not a job. I have so many friends in service of the public, ground down by the system that they want to work for; hoping that it will get better tomorrow.. Btw, both my parents died in the affluent South East in different NHS hospitals. I live in an "affluent" area where as I'm self employed, I work twice a week for a total of 3 hours; care for my brother with learning difficulties because there's nothing he's entitled to at the moment. My work never came back after Covid and quite frankly who'd want to employ a "flake" with Lupus like me? Please just go and get yourself sorted out; it's just the same all over the country. Just remember when someone's really nice to you, be really kind back and when someone's not very nice, be very nice back and finally if all else fails and you get someone really not very nice, I always pose the question to them, very nicely because I am very nice - no, I am. It's my downfall. I'm known as Mrs. Doormat 🥴"Is this treatment what you would expect for yourself? If it is then I'm happy and thank you for explaining it to me!" I've only had to do this once, for my Dad with a Consultant who thought he should be left in pain. Thank you to all those of you working your very best in the kindest way possible too that also take the time to explain stuff on here. I am very grateful. Namaste 🙏 🧘♀️❤ I'm now going to push the button. 🙈 gulp!
I understand what you are saying, and I’m sure there are nursing staff that work very hard and are dedicated. Nursing is not a calling these days, it’s a job. Fair enough, but all I want is the staff to actually be working and not standing around laughing and talking. It is not a good look. I am drained by all this drama that Lupus causes. Nobody seems or want to know. Mistakes with meds by GPS and my consultant. It’s neglect. I really don’t want to sit there and have that look that says I’m just a moaner and it’s only Lupus. I’ll wait to see if they ring me back and if they don’t I’ll phone out of hours and ask them if they think A&E will deal with me. They also know the waiting times so I can pack a meal and drinks. It’s terrible that I see A & E as a day trip with sarnies! Lol!
You are so right. The NHS is underfunded, underpaid, under resourced. We have amazing, caring, professional staff who are on their knees. The service is being privatised by stealth and Covid has brought unbearable pressure. I am a bit like you, I have been ridiculed, abused, ignored for so long that when I get a Doctor who cares I am a soggy mess but lately I have started to fight back. I deserve better and I will no longer accept it. I have also had some Doctors who are kind, compassionate and life changing. My husband had the most amazing care during his ten day stay after his heart attack. Everyone on the cardiac unit was professional, , explained everything, treated him with humour and kindness. They saved his life which is the most precious gift anyone can have. I wish this Nation could stop the clapping and force pay and condition improvements for the staff from the cleaners to the nurses . Maybe then they would be less exhausted, more motivated to help and feel valued. Xxx
No do not ride it out, you need medical attention immediately, best of luck
These sound like very worrying symptoms and, as other members have said, please can I stress the importance of you seeking medical advice urgently. If you feel your GP is not helpful, then the rheumatology line is an option, but as this may take another 48 hours or more to make contact, I would suggest that you should attend your local hospital emergency department as soon as possible.
I hope you are able to get some help and start seeing improvement in your symptoms very soon - do please let us know how you get on.
Have you contacted your rheumy today whilst thinking out plan?
Are you at A&E at the mo?
No. If I don’t get a call from specialist nurse tomorrow and this is the same I’ll have to but I will make a complaint. My legs and feet are stinging. Dismal!
Surely will, I have made an official complaint to the board just today about my GP practice and the lack of access to prompt care despite being high risk pt.
I hope you do get an answer quickly. ❣️Stay safe x
Thank you. I don’t want to be nasty or a pain but tomorrow has to be crunch time. ❤️
If at home, also could pop urine sample at GPs and email picture of rash...they might fast track hospital admission.
If in waiting area A&E I've found link to 24 hours in A&E episode
"Sports commentator Andrew has a mysterious rash on his ankle."
Various interesting discussions included - seemed to interest staff
Then protein was found his urine and he saw a specialist.
UPDATE I’m still alive! Specialist nurse rang me today and said she wants me to phone GP! She said it could be a DVT at worse case scenario. She said “you only saw the consultant two weeks ago so you can’t see him again until the 12 weeks is up”. I didn’t want to see him he’s so unaffected by things. I wanted advice. I told her I had to brave the Rottweiler psychic nasty receptionist first. But it had to be done. Phoned the receptionist who was delighted because I was giving her the full story then said “ok I’ll get SOMEONE to ring you this afternoon”. At 5.10 the nurse/practitioner rang me and said he though I had some sort of cellulitis and prescribed antibiotic cream for my legs and antibiotics to be taken orally. He also said he was booking me a double appointment for 9.30 am Monday with the GP. I asked should I cancel if I felt better and he said no, there’s a lot going on and I should see a GP but there were no appointments left today as they have been really busy. So at least I got somewhere. My husband had to get down there by 5.30, which bless him, he did. So I start treatment tonight. Thank you everyone for your support and help. I would probably have left it until Monday to phone because I thought I was being a bit of a baby. I’m grateful once again. ❤️