I understand that this Covid19 🏐🏉🏈🏐🏈🏀🏐🏉🏈s and put up with the totally inadequate phone consultations where I could tell them anything and unless they can see for themselves mainly take what you say is a true reflection of what is happening with you. Then finally get a face to face appointment......., Only just before the due appointment............, Cancellation and another one offered for the new year and not even a phone consultation as a option but told in the letter that if I have a problem to see GP.
Sorry. GP referred me to your department and others because it's a problem outside their own scope of knowledge and a part of the consultants.
Seriously had enough of all this nonsense it's been dragging on for years and getting worse. Now we have to give way to whatever.
Might as well catch Covid19 at least I'd get to see a live doctor as that's all they seem interested in apart from those who have been abducted by 👽 alien space ship to another galaxies call center.
Sorry for the rant but I've got to the end of my tether and no longer care what happens now.
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Boudica1
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Giving up is not what we do...at the very least we're guineas pigs with history for all the Covid research...take time out, re-group and once more into the breach...for all of us xxxx
I know what you are saying but after decades of the odd "silly symptoms"and the past 6/7 years of escalations and all the pigeon holes of age, life style, gender and the Siamese in your head and the shrugged shoulders of don't know.
The last thing I need is GPs saying go to the hospital and some doctor there saying go to GP.
Where the hell are we supposed to be going.
Then Rheumy disappears of the face of the earth. Cardiology say "oh you don't keep going to A&E so there's nothing much wrong with the Arrythmias or the lungs even though you have five lung problems diagnosed but have learnt to try and keep them under control and stay away from A&E from past experience.
So I'm being sent from pillow to post and back again and now Covid19. No one is doing lung function tests so unless you are turning blue forget it. Maybe I should stop taking all the inhalers before someone takes notice that I'm struggling to keep control of? Asthma? I don't think it's the problem. Emphysema, Bronchiectasis? Who knows, no lung function tests. Fibrosis or the Lung Nodules? No idea no one is checking.
Arrythmias? Ha, that's a laugh. No idea if it's a problem in it self or if it's a problem with the lungs exasperating the problem or the other way round.
Feet, ankles, hands and face hurt to the point of needing painkillers. Sudden dizzy spells sometimes with visual problems or strange headache. Forget the stomach/abdominal issues and weight loss, there again it's hard to eat if it causes pain.
Oh yeah when you go to the as GP said Doc there keeps asking if you've had a big bleed in the last 48 hours, erm no definitely not, oh ok everything is normal, here's a prescription for calcium channel blockers and see your GP for a referral.
Really?
What's that all about when GPs are telling you to go to the hospital?
I've been on the carousel for years and no one is seems any the wiser.
Why?
Bloods not quite high enough.
Bloods not quite low enough.
Oh! Positive? Keep testing because it's a false positive, negative, told you there's nothing wrong.
All in the head, age, lifestyle, female and nutty with a bit of God knows.
What I do know is whatever is going on in the chest is getting worse, the stomach/abdomen worse hands and feet worse to the point that the other day my daughter noticed how red my hands were and the strange rash under the skin on the arms and face. I can and do sleep a good 7 hours in the day.
So if the doctors at the hospital aren't bothered why should I be?
Sorry if this is a long post but I am able to pigeon hole whatever just like the doctors are at the moment and I've had enough.
Boudica1. I'm sorry I can't stay for long but I just wanted to pop in and say I know exactly how you feel. And I'm so sorry that this is happening to you. And to far too many of us.
I've been where you are and know that feeling of not much caring anymore. It’s so difficult to keep going when you feel so ill and don't have the energy to fight.
Then I realise that it's not that I don't care...I'd simply like someone else to care too...enough to try and help - preferably a knowledgeable medic - to do their best to at least try to improve the quality of my life (with all that that entails). Whatever the 'bloods' say - or don't (what a big conversation that could be)!
And I agree about the almost total shut-down of the NHS and many GP services (excepting for a lucky few - or so it seems). Disgraceful. (And that could be another very long conversation).
I understand perfectly when you say that you 'might as well catch COVID'. I've heard that said before. I think it’s a marker of the desperate need for medical care and an indictment of a health service that has largely abandoned so many people with all forms of acute and chronic illness (cancer treatment cancelled - in what universe should that ever be allowed to happen 😡🤬).
I do know that when I get to that bottom place where nothing seems to matter anymore...I do eventually manage to crawl back out of that dark place and...sometimes sooner, sometimes later...I get back in the battle again. Despite 'them'. In spite of 'them'.
However long it takes, that will happen to you as well...because we're all fighters - so often forced to be - even against all the odds that are often stacked against us.
So...just wanted to let you know that you’re not alone in how you’re being treated (or rather, not treated) or in how you feel.
Oh Boudica1. I can’t disagree with anything you say. Nor would I want to.
It’s hard work pushing all the time.
I've found that dealing with appointment centres rarely brings results - unless you happen to speak to a gem who goes above and beyond to help. The slap in the face automatically produced letter never does it for me - or anybody else either!
Some things that I've resorted to when I'm throughly cheesed off and eventually decide that enough is enough...and rouse myself into action...
The better GP's will often progress things for you and contact the rheumy department or consultant to get you seen more quickly (what they should ALL do when their patients are struggling, but so few appear to do that. Sadly). Can you ring your surgery and book a telephone consultation with a GP - though recognise that many seem to have gone to ground. Or is there a surgery nurse who you can speak to who will approach a GP on your behalf.
Have you tried ringing your rheumatologist's secretary? They can often contact your rheumatologist, arrange a phone consultation, or get a quicker appointment.
Sometimes ringing the departmental administrator works. Or the rheumatology departmental manager (hospital switchboards can put you through or contact details on hospital websites).
Does your rheumy department have a helpline or nurse you can contact?
When I'm struggling and getting no answers I ring around them all - sometimes it’s a matter of finding the one helpful person who decides to help you. Shouldn't be like that but unfortunately, it is!
Or find out the name of the person who manages your hospital trust...and email a complaint directly to them...saying that you do not want referring to the patient information liaisons service (PILS) but would like direct help and action from her/him. Tried PILS once and despite an initial phone call and then an email to confirm details - I never heard from them again (though I've seen some report here that PILS have helped them).
Just stabbing in the dark here and trying to think of things I resorted to in the past to try and get medical care. One thing I've realised is that those who shout loudest and keep pestering are the ones who eventually get heard. Again, shocking that we have to behave like this - sometimes just to get basic medical care 🤷♀️🤷♀️🤦♀️.
And do you know what...every so often I come across a gem of a person who really pushes the boat out and sorts things.
Most recently, I waited three months for a two week pathway referral with no response. Last week I finally managed to get a wonderful administrator on the phone, she got out notes and scans, took them to the consultant to discuss...and today (seven days after my phone call) - I eventually went for a biopsy. So...there are people out there who do really try to help, as and when you can find them.
I know you’re really struggling at the moment but please please try and hang to the fact that somewhere, deep down, you KNOW you're a fighter...and that bit of you will return when the shock, anger and disappointment becomes less raw - as it eventually will (because you're a fighter 😉).
And I'm having a wry chuckle here because I've had the stuffing knocked out of me recently...so am girdling my loins for another damn battle. So I know exactly how you feel.
Hang on by your fingertips...the hands, arms, legs...and that feisty strong fighter will surely join in...when they’re all ready.
Be kind to yourself...take care...more huge hugs 😘xx
There we go, that is the most finely-expressed synopsis of the situation many of us are in, so thank you for sharing and if I may, can I save it for reference as you've captured all of our feelings of being bogged down in the deep mud of the trenches on the front line without the munitions to defend ourselves, shells exploding overhead....so what do we do, lay down arms and die?
To carry on the war analogy (well, Boris started it..), the Shell Crisis of 1915, when our boys in France had no ammunition to fight, led to thousands of girls aged 14 upwards hand-mixing nitroglycerine and nitrocellulose - one false move and they would have been vaporised - to produce more arms, so the back-up might come from an unexpected source, just keep your head high, think of the home fire burning, and march on.. xxxxx
I understand your frustration but be careful what wish for...both my daughter and bf are nursing covid patients.my bf has 30 yrs experience some of it on icu and she said shes never seen so many people seriously ill.
I've had my own trials and tribulations with drs but it just fires up my fiesty side and on I march until I get heard.ive also had some experiences over the last 11 years which have taught me to keep going .
Hopefully here youve got it out of your system and as eekt says you can take some time out to chill and re group.you are a tough cookie . Sending hugs xx🤗🤗 xx
I have only just this evening had the ‘rantathon’ of all rants - more or less exactly about a similar situation.
The surgery pharmacist has been more informative and helpful.
He suggested my GP refer me for a CT scan of lungs as I have had antibiotics prescribed 6 times in as many months for recurrent chest infections (actually been going on for years) and seemed perturbed that no one had questioned why this had been allowed to continue. (I also have asthma) As it turns out, I am now in the queue for said scan, along with 6-10 month ENT queue too. Having dizzy spells and can’t drive my car. Still awaiting complement blood tests and RF that the surgery do not do! I could go on...but I’ve already exhausted myself prior to this posting.
I can absolutely understand your frustration about all you have said. It helps to get it off your chest - (in my case, quite literally) .
Tomorrow is another day, and hopefully, getting it out of your system on here where people understand will help you have a slightly less fraught day/week.
Boudical join the club ! l had the same run around with the hospital in Aylesbury , l finally got to the Churchill hospital in oxford talk about chalk and cheese . seems to me a lot of doctors and specialist in hospitals run them for themselfs ,and forget they are ther for our benifit and not for thers . take care Rodders1941
Oshcosh l always try to remember when l think the doctors and specialists are fobbing me off , they are only sitting ther because millions of ordinary people spent a life time paying into the N H F . Take care Rodders 1941
I just want to say that I am so very sorry for how you have been treated and for how low it has made you. People here can understand the frustration, angst and despair because most of us have felt that way so many tines. My GP surgery has been my lifeline despite having to change from my GP of years because of her woeful decision making I now see a young GP who does not have all the answers but is caring and interested enough to try. That is what we all need, someone to give a damn and do their best isn’t it? Please do not say you might as well catch Covid, it is a dreadful way to die. Yesterday I was treated as if I had it because I could not breathe. It was scary but the large dose of steroids I was given have done their magic and today I am wheezing and breathless but so much better. Why not copy your rant and send it to your GP and Rheumatologist so they know just how despairing you are? I hope that things improve for you quickly. Big Cwtches xx
I agree, I also had a very shitty consultation with another trainee rheumy not even my normal one. He listened to me and then said he'll get back to me after consulting my Dr. Called back and said carry on with your meds! When we speak to you next we'll arrange for an xray on your knees thats 6 months time! Which I've been suffering for 1 year now with. It's all a bit pathetic.
I hear you I have the same problem, what I did do was a six week diary and took photos and sent it to my GP and asked for it to be emailed over to the Rheumatoid specialist at the hospital I was supposed to be seeing from February this year and still not!! and bingo I have an appointment next week.
Sadly you have to be strong and keep chipping away, it is an up hill struggle sending best wishes x
Done that the last I heard from rheumatology was the video email in March about their criteria for shielding which was all about the drugs they had you on.
Got Shielding notification from Govt and NHS nothing to do with Rheumatology.
Still going from one department to another and nothing from Rheumy. Dermatologist has got to be a great joke now , phone consultation but they can't see what's going on. Then a surprise face to face, oh wonder of wonder's canceled last minute and put forward to next year and told in the same letter any problems see GP. It's out of GP scope that's why I'm at the skin clinic.
It's the same with cardiology and respiratory, see GP, GP say go to A&E, and when you get there they say see GP.
So what are you supposed to do?
Shunting from pillow to post and going round in circles.
GPs are trying their best.
I'm not even in a extremely high risk area of the country, we are at level 1 and yet we are still being jerked around and pushed aside.
Sounds selfish to you and others?
I have multiple lung diseases and I have a determinating heart condition and still can't get the medical help needed.
So what am I supposed to do or feel?
Greatful? Put up and shut up?
Ignored?
There are people who were diagnosed with cancer at the beginning of this Covid19 and still haven't even seen a consultant let alone treatment or a reason as to why they are not having treatment.
Do we tell them to be strong and keep chipping away?
You do know don't you that those who have to pay for the dental care they have are in some cases having to pay a lot more now than pre-covid and those who are NHS patients have been cancelled until further notice. It's the same for those who have to see NHS consultants who also have a private practice.
I have no idea if you can afford to pay for private consultations but I do know those who have to rely on the NHS are being pushed back so that the doctors they see catch up with the private sector.
Why is this happening?
NHS doctors are only paid a pension on so many hours that they work, about three days a week, anything over they don't get the extra hours towards their pensions and it's the same for your GP. Which is why you have problems getting an appointment. Three days a week is what they are working to get a pension so anymore they lose out on their pension.
I don't blame the doctors at all because thanks to the pension rules they can't treat us on the NHS unless they want to lose money.
So so sorry Boudica1. I have only just read your post... how are you doing now???
I totally hear you, as everyone here obviously does too. I am in the same place as you describe. Not good AT ALL. It's so frightening isn't it? A feeling of abandonment, not being heard, fear and knowing that our bodies are being attacked by er, our bodies. A feeling of helplessness as we don't know what to do... and the strong feeling that nobody else does.. not enough anyway, surely?? But that's all they can do for us right now... and maybe it wouldn't be any different without the virus, considering our presentation... ie if we aren't needing hospitalisation, they can only do what they are? All a matter of degree, of course.
It's good to know the Samaritans are there as the GP can't really suggest anything other low level adjustments to non-specialist medication, or antidepressants...or referrals to depts she'd already referred me to but the waiting list is so ruddy long, or to knew teams if she recognises an obvious new issue...well, my GP anyway. After my last call as I was just in such a nasty flare, she wrote about the distress caused by the ridiculously long waiting lists of depts I have been on and am waiting for an appointment from, and but didn't mention the fact that when you do get one,I found out last week, it's phone call only. I called the appointment link and said, hey, I had the phone call last July to identify the need for me to be seen/tested etc - in person.. but she said "no one is doing face to face right now. do you want to go back on the waiting list until FtF is starting again, but you'll go back to the back again?". No brainer on what I said to that... ie "thanks, keep safe, but let's leave it for the phone call"... it's something right? More than something - it will be the next step to face to face.. that much I know!
We know the NHS are so so drowning in referrals, cases... due to the covid situ, they are doing all they can and suffering themselves with mental and physical health issues as a result - but they were at breaking point prior to Covid anyway I read yesterday. So we just have to sit with that info... and recognise it is the same for all of us, apart from the "lucky" few who have obtained their group of clinicians, who all talk to each other about the case, prior to the virus. But has to be said, of course, that, so very sadly, they generally have this in place as have been hospitalised with their conditions and so it is utterly essential to keep them alive that they have this in place. I do worry (as you are so clearly) that a crisis in my own health will need to occur before obtaining the clear diagnoses required for accurate care etc, as much as possible anyway.
I do a guided positive, clearing meditation thang every day (Christine Clemmer), take pain meds as required (with some humdingers stashed away for the night time hell when some of it goes beserk) and keep on here for support when feel able... and try not to discuss with any friends who just don't get it... that's not fair on us or them. Have you even one friend who kinda gets it? Or family? I don't have any family apart from my brother who's in a nursing home with Parkinson's and Lewy bodies at only 61, and of course his situation (and how he was last year in hospital for months when all thought he was going to die, having not had the care he needed - don't go there.. too awful a story I had no power over) - so his situation really really highlights how much worse it could be for me anyway. Many of us on here have said similar above. So so sorry.
We just have to rest as much as possible, keep fully hydrated, eat as nutritionally and cleanly as we can..keep moving as much as we can, so good for us, keep up with our meds and maybe go on websites that talk about positive things, for those who are struggling as we are - it's got to that point for me in the middle of the night this week! ;). I look at beautiful things and breathe in beautiful colours and think about all the good things in my life as much as possible.. although I know it's really rather difficult right now for us all. But soon we will have the choice on whether to go out, if we can, and maybe just go out and look at the flowers coming to life in a local planted area.. and listen to music that uplifts you.. or maybe lets you go deep into your pain and just have a bloody good cry! And in the end, I always say.. "at least we don't live in a war zone"... always have since I was a kid... although I did - in my home (which is why I thought that one up!) But seriously, it really is what it is...our situation... and yes, we need to shout loud about our stuff.. and hope the right professional person hears and we get the help we need. They are doing all they can I truly believe that.. I think they are all burnt out.. and don't know where to start with their case load.. I know that feeling too well from when I worked in Social Care. We are in this situation... and all we can do is keep letting them know about any changes... and keep a record, take readings (if you have anything like a blood pressure/heart monitor as I have recently purchased on advice from various clnicians), take photos and write down dates of difficult days and why - to use when we are being listened to and seen. We are seen by NHS (or similar wherever you are in the world) as being managed... and thankfully, we are not needing hospitalisation... We, who are at this level of ill health/situation, truly have that to be thankful for. And I'm so sorry for those who are so much worse...
Forgive me if any or all of this is seen as a ramble... I TRULY hope it helped you.. xx
Hi DJK99 and thank you for your reply the time line doesn't matter at all.At this moment in time I'm just about getting over a "slash" biopsy, that's an inch long section of skin containing one of the ever present spots and a sample of non spotty skin to see whats happening there so I'm now waiting for the result's from that.
At the moment the only hospital consultant I see is the dermatologist sometimes F2F and sometimes via the phone the later is like working in the dark as they can't see what's happening and it's somewhat difficult for me to see as the worst of it is on my back, I know I'm still supple but thats a bit too much even for me.
I seem to be in what I would call a mini flare with almost constant itching strangle where there aren't any rash's, fuzzy eye's, head aches and face aches and the general aches and pains and yes I have the extra strong stuff prescribe when the OTC pain killers don't work. On top of that the Erythromelalgia is play up more than normal.
When I went for the biopsy the rash was in mega-overdrive so instead of the usual one or two photos they normally take of my back he had to take five to get them all in as they seem to be spreading. He also asked yet again if I was in a combined clinic, ER no and in fact I've heard nothing from the rheumatology department in over a year so I don't even know if I'm still on their list or discharged without being informed.
Yes I do try to keep positive and occupied to distract myself but at times it's a tad difficult, mind you at the moment I don't need to as I'm going through what I call my Hibernation mode for the past 3 days.
So sad to hear bout your flaring.., like me it’s pretty ongoing eh, but can get much worse obviously.. which beings me to being v glad to hear the clinicians are doing something. The outcomes will no doubt be extremely useful, I hope. My EM is also really bad right now and has been increasingly for past year. It’s utter hell at night eh? But v worried bout my GI tract too. Will you let us know the outcomes of your tests? Here’s hoping hugely it gives you some clarity - and outcomes they can really help you with. Big hug x
I will post what the biopsy results are.Ouch! I know what you say about the GI tract I've been diagnosed with Bile acid Reflux Gastrisis and when that blows up it's pure agony and hell and to add insult to injury Diverticular Disease.
Do you have lung and heart problems as well, I do but luckily they're behaving 🤞at the moment.
I used to keep a symptom diary but with all the different symptoms and how often some of them occurred I found it very depressing and even started to wonder if I was a raving hypochondriac so stopped. Having said that the dr's did find it helpful.
Yikes sounds awful. Did you change your diet at all? I was diagnosed with IBS, slow transit and dysmotility all over the phone. and rectal prolapse and recurrence of my 35yrs old tummy button hernia through bloating! there's nothing of me as I have a hugely nutritious diet and don't over eat - I can't! I follow FODMAP diet but this doesn't help - although removal of brocolli did a bit. I have mod aortic regurgitation, on of AF and ectopic and supraventicular beats. Sicca of mouth and (very bad) eyes, insane multi sounding tinnitus and loss of hearing (ENT finally tomorrow after a year ago urgent referral by my GP!), widespread inflammatory arthritis, severe raynauds, raging EM (we think) or something awful, persistent hypocomplementemia (if that's the right one of very low C4 and C3), autoimmune neutropenia, rashes off and on, extremely dry skin since birth, recurrent mouth and nose ulcers, recurrent splinter hemorages, alopecia, sun sensitivity, fatigue (of course!), brain fog, migraines, sleep apnoea, chilblains in feet, narrow angles (eyes) so under Glaucoma team, on and of blood pressure issues, on and off temperature issues, and had invasive breast cancer just over 2yrs ago so in remission, fibromyalgia and trigger fingers/thumbs, florid degenerative cervical spine, and spine issues up and down to varying degrees especially C7 I think, mildly nephrotic right kidney, and funnily enough due to all the pain... insomnia. Prob a load of other things but you get the picture.. Can you relate? It's just kinda global... and there's no escape... we have to keep control of our minds eh?! 😆. Looking forward to hearing the outcomes for you... and that it is good not bad.. and in some way treatable. Big hug x
Oh diagnosed as “Lupus like syndrome” but was mod SLE for 3yrs before rheumy downsized me Autumn last year as seronegative. Referred me to dr d’cruz in london lupus centre. 🤞for me too! X
I got diagnosed with Seronegative Sjogrens Syndrome but the also keep doing bloods for SLE ANA & c3&c4, ANA is up, down or borderline but the c3&c4 have been dropping every year to low c3 and right on the lowest number of normal c4. But most of my bloods are over the "normal" range but apparently not high enough to do anything about except vit D that was as good as non existent. I keep telling don't bother with the ESR as that doesn't move no matter how ill I am, the only bloods that seem to show when I'm ill are CRP and the Lymphs. So they keep scratching their heads and look at me as if I'm some sort of alien from a far off planet, maybe I am.Good luck with Dr d'cruz I've heard he's good.
Hah! Hugely similar to me! I was diagnosed with sjogrens by opthalmology too. but then had lip biopsy (AWFUL!) which didn't confirm... and of course I'm seronegative. I;'ve had all this stuff since tiny person... it's just getting much much worse. Just found this GREAT article about the complement side of things... perfect for us - yours are exactly same as mine. do you get splinter hemorages and beaus lines? I get them all the time... How/who did they diagnose you with sjogrens? My rheumy said I probably have it too and behcets.. but then just went a bit odd and changed everything to lupus like syndrome.
I get the bleeds in my skin, petechie the tiny red dots and purpura which I can sometimes appear before my eyes from nowhere, it freaked my daughter out when she first see it happen. Mouth so dry that sometimes I wake up in the night and my tongue is sticking to the roof of my mouth like velcro, ah yes the sore's in the mouth and nostral's and dry gritty eye's. the dry skin the dermatologist called xerrotic head to toe and I can itch like mad were I don't even have any rashes. To cap it all I'm photo sensitive and light sensitive so in the summer I'm covered up with a big floppy hat and giant sun glasses when I need to go out. I think they should change the diagnosis to Vampire Syndrome as long as I don't have to drink blood.X
I deffinately get the picture, yes I eat healthy fresh meat and veg including all the green leafy stuff and cook from scratch as I used to be a chef, I even eat more than my hubby and yet I'm as thin as a rake.One GP diagnosed me with IBS over the phone but the following year another GP sent me to the GI dept., camera's up and down that's when they found it wasn't IBS but DD and bile reflux gastritis.
It sound's like you may have more than one AI problem going on because some of the symptoms you describe are more like Sjogrens as well, but I have heard that if you have one AI disease it's possible to have another with it.
Yes I DEFINITELY need some camera work! It's just awful and got much worse since Dec 19... My Sicca is severe... my eyelids stick to my eyeballs and I can feel them protruding... I am on waiting list for dry eye specialist referred by my rheumy but that could take a year let's face it - worrying he didn't put in the referral about my sticking stuff.. so I called eye A&E and they told me to up my carbomer 2.0% to 6 times a day as the Hylo Fortes 0.2% 6 times a day isn't working... and neither is the Hylo Night ointment...I hear you about the throat.. I wake up and it cracks, as sticking to the other side.. it's awful eh! I used to use Salivix pastilles and should again... it's ruining my teeth - I'm, just 58 but my hygienist need 1.5hrs of numbed time with me to get rid of the weird tartar that is under the gum line apparently... and special toothpaste with tons of fluoride. Hope you are looking after yours too... sounds like you are on it with everything - good for you. It's ruddy expensive all this! At least I get the four bottles of eucerin 10% urea intensive body lotion on prescription now since I asked... I can now use it with abandon instead of trying not to and flaking everywhere.. so embarrassing.. and yep, mega itchy. Do you use something like that?? And Wash with eucerin stuff now as getting so bad... but had the skin stuff very bad as a kid... and diet change helped with the rashes quite a bit.. and getting away from home :(. Right time to eat. Thanks for sharing Boudica.. Hope it's helping... I so empathised when I read your post from 5mths ago the other night... talk about resonating.. but sounds like you're getting some support now. Fingers crossed and everything. Hug x
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How to deal with flare up?
Appointment with Rheumatologist and my falling!
Hospital change 
Rapid decline in ability - do I go to my GP?
