Not having a good evening here. I am so upset, frustrated and don't know what else. I got a consultant call like 20 minutes ago. I rang up this morning to ask for one so was surprised I got called tonight. I am still in a lot pain like I was back in end of Nov. It's gotten better but I've been struggling with sleep still I have a lot of pain in my knees and hands. So I told her this. She told me to get my bloods done. I got them done in Dec and told her to look. According to my bloods
- my lupus is dead. It's still there but not active.
- my Vit D is 30.
She's told me to double the amitriptyline until I get good sleep not having good sleep causes it all. To go buy Vit D as 30 is to low and I will probably experience more pain why the vit d works in way back up. So why did no one tell me it was that low. I did my part i had the blood test i rang the number to inform them back in Dec i had the bloods taken. All this basically is down to fibro now. As my lupus is inactive. So I've got fibro. So basically my pain is not real. I asked how can you tell someone this over the phone. There response 'lupus is inactive so we need to look somewhere else and that is fibro as there is lots of documents about it coming together with lupus'. Why has no one told me that in 5 years when there is no bloody difference to things I have experienced before. In the past I've gotten on with the pain it comes and goes gets worse when flaring. So why now try and label me with something else that makes me think I'm an idiot.
I tell you all now my pain is very much real and I've had enough. I don't see the point of living a life where your made to feel like a liar and some nut case. I'm done with it all now. I honestly don't see any reason to bother dealing with the hospital anymore. Is it so much to ask for one day with no pain. One day to be like a normal person and not have to think a 100 steps ahead so you don't end up exhausted or in more 'fake' pain. I have RA as well but not once to the Drs mention anything about that. My hands are swollen all the time. No one cares so why should I?
Sorry to write all this but no one seems to care and I need to vent it all because the way I feel like now I am about to ready to just give up on everything.
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LouLamb
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We care loulamb....have you asked your gp about pregabalin ?......that's what I m prescribed for the pain in my hands and feet.weve all experienced poor care from uninterested consultants.all I can say to you is you are not an idiot or a nut case so be confident in how you feel and keep going.if your lupus is in remission that is good.us lupus sufferers often have more then one AI illness (I have 4) as many overlap and go hand in hand so try not to get to down about it.keep smiling cupcake sending you warm hugs from chilly Cumbria xxxxx
I’ve got a call with my gp on Monday . As I wanted to discuss the whole fibromyalgia thing with her. So I’ll enquire about it as well. I hate the over phone. I don’t know how you can diagnosis people with things without even seeing them.
I have and am treated like a drug addict by my gp if I have the audacity to ask for relief, In fact they stopped a lot of symptom relief my consultants prescribed and my consultants do not care. I feel the same, but it will pass and anger will kick in and when it does? Speak to Wendy, Jaime and the others who’ve been there. Sending love, to you too Spanielmad xxxx
Keep going good consultants do exist...I have a good team now after 5 years although my gp has always been supportive. I had several incompetent and arrogant drs at my local hospital...that's when my fiesty side rears its head and I wont be fobbed off.i refused to see them and now travel to the royal preston x
Re-frame your thoughts LouLamb...why us ? We're saddled with idiotic doctors who pass us off with non-conditions simply because they're too ignorant, arrogant or lazy to work things out (with some very mighty exceptions, there are some good 'uns out there)..there's some brand new research confirming bloods don't always related to activity but there might be other biomarkers (academic.oup.com/rheumatolo... not many doctors know that.......................we care LouLamb, we're in it together, stick with us and we'll find a way together xxx
I’ve been doing it for 5 years. After tonight I just think why. Why do I have to keep putting up with this doctors that care or listen. I haven’t found a good one yet. My Gp is good but thats it’s.
That's one more good doctor than me 😜😀🙃...I just keep writing till they get it right...maybe one day...it makes me feel better....plus we're part of the future, if there's nobody pointing out what's going wrong, it's never going to be made right? Start with your GP and the RA and work onwards and upwards...keep coming back cos you know what a lovely place the forum is for moving things to a better place?
Things ARE changing...fatigue made the headline news as mouthed on prime time tv by our Health Minister..it's now officially a clinical symptom thanks to Covid, now there's a silver lining...doctors are being educated in how to deal with elusive things like brain fog and undefined muscle pain, also thanks to Covid...we're the guinea pigs in the shadowy underbelly of medically unexplained symptoms (and Lupus UK has funded some great research: academic.oup.com/rheumap/ar... ...the whole population will benefit from our experience
I had 5 years of incompetent drs.i now have a good team but it means travelling to preston.they do however know i wont be fobbed off.i question them I ask for explanations.im copied into all letters and I have patient access so I can see my bloods for myself.the lupus encyclopedia is a book worth checking out xx
It's time for bed as Zebedee said but there's a fair chance the spinal arthritis doctors don't believe I have 🙄🤡 despite x-rays 😆 will wake me at 2am, so if you're up for a chat in the middle of the night log on and who knows 🦉😘 xxx
There's not much I can offer in the way of answers, but you are certainly not alone. The story you tell is sooo familiar. As my fatigue got worse and worse without any change in my blood markers, my consultant announced I must have developed fibromyalgia on top of UCTD. But the only reason to give me that diagnosis was that he couldnt think of anything else.
After I went off and did my own research, it turned out that I had developed steroid-induced adrenal insufficiency.
Im not suggesting you have that, only that many of us do seem to end up having to figure things out for ourselves. Support from people on this forum has been essential to helping me cope.
The Fibro diagnosis is all too quick and easy. Lazy doctors who can't be bothered to investigate further. Don't get me wrong, some people do genuinely have this and it is not an easy illness to live with at all, but once some doctors see this diagnosis listed, even with other diagnosis and overlapping conditions, they switch off. My sister had the fibro label given to her by local rheumy. But when we saw an doctor privately, she did not have fibro at all, she had EDS and POTS was very likely too. But we'd got her GP notes in and EVERY entry started - Fibro and depression. She was never taken seriously. The EDS label is now on her notes but she is only GP lead care. After quite a battle, her GP is slowly sending her for the right tests and working through all of her issues. Although she's having a colonoscopy done privately soon, as no go there. I get very concerned that many are labelled Fibro and it is not actually right. They are discharged from Rheumy care - which keeps their lists down and GPs are left to deal with these poor people. They are often out on high strength meds and left. It's so wrong that people who are genuinely ill and need a doctor to get to the bottom of their serious health issues are fobbed off in this way. It makes me so sad. Thank goodness you worked out your issue, goodness only knows what might have happened if you hadn't. x
Hi LouLamb, bless you I have ranted just as you have so many times. I have cried, given up, refused to see any doctors many times. Fibromyalgia is not a fake illness, people who have it suffer real pain and it can be debilitating. The fact that any doctor would diagnose you without having seen you in shocking but I once had a Rheumatologist so determined that Zi had it he actually pressed the trigger points so hard that I had fingertip bruises down my neck, shoulders and spine. Last year a Rheumatologist told me I did not have Lupus or Bechets but Fibro and hysteria??? I came out of the consultation and cried. Two months later my GP spoke to the on all Rheumatologist who said I had Mixed Connective Tissue Disease. A week later I saw a new Rheumatologist who said I did not have Fibro or Lupus but UCTD. I was despairing. Then yet another Rheumatologist phoned me. He listened, understood my frustration and despair and acknowledged that the Rheumatology Service had made life difficult for me. He was ruling out nothing and said when he actually gets me into his clinic we start from scratch. I was so relieved and grateful I sobbed. That is what we all need, someone willing to listen and try to help. My advice to you is to speak to your GP and tell them exactly how this doctor made you feel and ask to be referred to a different Rheumatologist. There are wonderful doctors you just need to find one. I wish you the very best of luck xx
I've had problems for years with various doctors not telling me things, I find out from comments made by radiologists or checking my notes. I had pleurisy 0ver 30 years ago but only found out a few years ago when I got blood clots in my lungs that the pleurisy had killed off part of one lung, it explained why for years I always felt short of breathe. I found out from a radiologist that after having a kidney stone removed that one of my kidneys had scar tissue blockage resulting in the kidney barely functioning. I found out from reading my notes on blood results I had been anaemic for years and no one had prescribed Iron tablets. all different doctors and all "forgetting" to mention things that I personally thought quite important. try and complain and they close ranks and you get blamed for being difficult.
All comments here so true. But what interests me LouLamb is that many people on various health communities do really believe Fibromyalgia is a real condition - including people with Lupus, Sjogrens and other - and get furious if anyone like me suggests that it’s a cop out diagnosis just because bloods indicate no active disease. Same with IBS and other so called functional disorders.
Of course this makes it much easier for our consultants to diagnose FM and others over the phone - rather than by examining and talking it through with us face to face - because many of their patients just accept and even embrace this as an extra diagnosis rather viewing it as a cop out.
So I now find myself having to collect evidence of my own to support my hunches and to point out ti all doctors that it’s inappropriate to diagnose someone with a condition without examination, proper imaging eg X-ray, MRI etc.
For example I was told for years that my wobbly legs and gait disturbance/ slight hobble were bad habit from previous RA diagnosis and other stuff.
Then last week, after 9 years of this pain and loss of sensation, I finally had an ultrasound of my foot after badgering a GP for podiatry for nearly a year now. The sonographer said I had the largest Morton’s neuroma (like a ganglion cyst on the nerve) she had ever seen and it was amazing that I’d been walking around on it for so many years without complaining. So much for “functional” gait issues!
So hang in there please, collect your thoughts and ask for copies of all your blood results from GP so you get a sense of what is normal or abnormal for you. Then once you feel in a better position to fight your corner go for it and you’ll put that rheumi right you’ll see. If your hands are swollen and painful then demand ultrasound to check that RA isn’t doing damage to your hands. It it’s Fibro then it shouldn’t cause your hands to swell.
There are tests to measure disease activity that can only be done by examination not by bloods alone. So I would write a letter or email to your rheumi calmly but firmly setting out the points you’ve made here - which others have all supported. Best of luck xx
Lou lamb I’m so sorry you feel this way, I must admit I feel like this, I’m due a telephone appointment this month but already dreading it as it’s all about bloods and so far in two years bloods reveal nothing yet I suffer worsening symptoms. It’s a real hard knock when we get diagnosis to send us away, and treat us as liars and idiots, I have been in the position of not wanting to live as not been taken seriously. I went with huge hard lump in thigh with rock solid forearm and rheumy was puzzled and concerned kept touching, looking saying this is not fibro and sent me for scan. Scan revealed nothing apparently then I was sent away with fibro diagnosis. The same rheumy looked at my face and hand skin rashes saying nothing there, I said what do you mean nothing there , ive had people ask what’s that on my face, a dropped eye it’s Bell’s palsy, to further go to facial specialist who say it’s not and to this day over a year the same, shortness of breathe and told it’s probably asthma, all with no treatment or anything to help offered, just a fibro diagnosis which doesn’t add up. It is absolute destroying to be treated like this , with many signs and symptoms besides. I find it hard to say even to myself but don’t give up, you deserve better, it’s their failings not you, but don’t give up you need answers and help. You are lucky to have a good gp so use them, I wish I did, and tell them you’re not happy.we are being failed by docs and they are under pressure politically to not diagnose too as it costs money which is why they bring in private companies to deal with claims if you can’t work . It’s all a battle but your health comes first so you need to know you are not an idiot and battle on even though it’s hard and that’s an understatement. Fibro may be real but it’s not a free for all, and as it’s used that way of course it’s not taken seriously. People can go to doc say tired and achey and given diagnosis then others with numerous intense symptoms and told fibro 🤷♀️ God help us. I’m struggling in this fight too, but keep looking loulamb for that elusive doc and when you find them please let me know too. Take care and all my best wishes and remember , you deserve better so don’t give up stay strong and safe 🤗xx
Oh LouLamb it’s horrible when people don’t listen and you end up feeling like you do.There’s some good advice from forum members here and I have to say writing everything down regarding questions you want answers to has helped me.
Keep asking those questions and note your reactions to the drugs they give you.
No one should have to tolerate the pain you’re in without support and guidance.
It’s noteworthy that some forum members changed hospital teams and asked for a second opinion.
Morning loulamb I've just read your post ,it must have been pick on people with lupus day yesterday.I like you are finding gps and consultants infuriating and i don't think they actually give a damn sometimes about their patients,sometimes I wish they could experience the pain we go through then they would understand what it is like to live with this disease.On a better note I once read a quote that describes us perfectly it said"just because I'm not your kind of normal it dosn,t mean I'm crazy.😁
I’m so sorry you feel as you do LouLamb and worse still the very people who skins help you are making you feel so low.
I care, we care. We get it. You aren’t imagining how you feel. Pain can take us to very low places, chronic pain is brutal and to understand its effects you have to experience or be an empathetic person. Getting on top of your pain feels like a really important step. What do you currently take? I’ve found taking pain relief regularly throughout the day can help - often I don’t feel improvement until 3rd dose. Of course this is only during the bad times but it can help to try to get ahead of the pain. Definitely ask your GP about a pain relief regimen with options for those dreadful days too.
More than anything lupus patients need to be and feel heard. Gentle hugs x
Perhaps there’s an alternative? Naproxen is known to irritate the stomach. Having tried a few meds, paracetamol and codeine has been a preferred combination. I really hope you get some relief soon, you must be exhausted which won’t help x
Ive got a call on Monday with my GP. I’ve also booked a nurse telephone appointment with Guys hospital. To see if they can offer any advice or help with pain. I did ring them back in September and told me they’d get back to me then but never did. So not holding out to much hope for this evenings call.
It’s just so hard when you think you’ve got a grip on everything. It’s been the same for 5 years I’ve come to terms with it all pretty well I had thought. Then you get 2 bad phone calls and all that self work just goes.
Thanks so much for a kind response louise-a, it warms the cockles of my heart...and every one of us makes a difference ! Hope LouLamb reports back after her GP appt!🌈🐺👍 xxx
Loulamb be strong we care, I have multiple autoimmune disorders, the latest was 4 weeks ago after a biopsy. I now have Acute Vasculitis or Gient Cell. This week frightened out my whits because I'd experienced seveir dizzy spells through the night and all day. Anyway it was diagnosed as vertigo but I felt as if I've just waisted the GPs time. Take care Loulamb.
LouLamb, I also know how you feel. We go to the person who is supposed to help and we are left feeling worse than when we went. I have left an appointment in anger and tears and have to work through feeling hopeless and stupid for a few days. We are lucky to have this group of people that understand and have also faced what should never happen. I don't always listen to my own advice, but always trust your own instincts and body. Doctors want to have answers backed by labs and if not, we are at their mercy. Then we feel like they don't believe us and we don't matter. We are not lab work which by the way, fluctuates constantly. It's too bad that for just 10 minutes they could be in our body . Just don't give up.
I’ve always had a pretty good attitude I would say. But the thing for me is my pain is not much different in the last 5 years since being diagnosed. The only difference is I have chosen not to struggle in silence and actually contact the doctors. The one time I go this and I’m have a fibromyalgia diagnosis thrown at me. When I asked why the response is because it’s documented that lupus and fibromyalgia can go together. That is no answer for me. And no way can you tell me that over the phone without even seeing me. I wished I’d never bothered trying to ask for help. The one time I go it has left me deflated and upset.
I will get over this in time I know I will. But I now will also just go back to suffering in silence to avoid have other stupid diagnosis thrown at me over the phone .
Hi LouLamb, Not being able to be seen because of Covid is making all of this worse. I got Covid in November and still struggling with it. No doctor wants me to come in until I am symptom free. The advice is to take whatever over the counter meds you can take to help with the symptoms. I am better than when I first got it, but not all right. Also, not sure at this point what is Covid after effects or lupus. Recently, I have had A-Fib attacks in the last week that were under control before this. No way to know what is what. I live in the US so I know that is different. But a lot of doctors want to be right and when they don't have answers, they are not happy people. I have a GP who I have been with forever. His words are you may be dealing with the Covid for months. So far he is right, but nothing to make it easier to cope with. One of the symptoms of not being able to taste is crazy. Everyday, I think this will be the day that food will become real again. I make this really healthy soup that I throw all kinds of things in and have not idea if it is tasty or not.
I did not leave my house, but my husband got Covid from his relatives and brought it home. They are all fine now and did not get all the symptoms I got. I guess it is just the way it goes. Sorry for rambling.
So sorry to hear this, LouLamb.I don't need to tell you that many of us have had such dismissive phone calls and F2Fs by consultants - me included - and I really despair whether they really know what they're doing to us. They're supposedly a caring profession, but I've cried on so many occasions. I've tried telling myself that they at least think they're doing their best for us, but I sometimes wonder.....
I was once dx'd with fibro (my blood antibodies have always been negative, so far as I'm aware) after a particularly uncaring rheumy touched one of my fingers and made me yelp. She went on to press the other pressure points, with no reaction from me, but still stuck with the fibro dx. And then added ME/CFS to the mix. When I disputed this, she added 'and maybe you should speak to a psychiatrist'.
However, I now have a much more caring rheumy, who does seem to be listening to me. He's dx'd costochondritis, tendonitis, confirmed muscle weakness (mainly on my left side) and made an urgent referral to an osteo surgeon for possible left knee replacement. I've hardly been able to walk for about 6mths because of pain and weakness on my left side. The previous rheumy ignored all this and concentrated on fibro/CFS/ME.
My new rheumy has said outright that I've received some very poor care in the past, verging on medical negligence. Like you, I have a lovely, caring GP - reasons to be cheerful!
I hope at least some of this lets you know you're not alone. Take care - we'll get there in the end, xxx
Yes, I understand. It's even worse to be dx'd without being seen.
Mind you, it was pretty bad to be dx'd with fibro and ME/CFS after one yelp from me. In my opinion a 'negative' set of bloods gives them license to kill - literally in some cases.
Take care and try to stay positive - we're with you
Sending hugs, even after 28 years of SLE and loads of other add ons, I still get really bad times like this, hang on in there the sun will shine again one day xxx
It's awful how so many of us are made to feel like this and I actually replied to a similar post a couple of days ago on here, where someone was saying they'd been treated badly where blood tests showed no activity and they weren't listened to or treated.
If we did a poll right now, the majority would have been treated this way at least once.
I know I have and continue to be.
I'm not sure how much of my story you've read in my posts but it's 7 years since my diagnosis and my local NHS rheumatologists all treat me this way.
At first I was told that I had SCLE - skin only - no systemic symptoms and I was mild and stable. They put me on hydroxy only and even tried to reduce that as apparently I would only get skin symptoms in the summer in the sun and so would be easy to control.
I knew this wasn't right. From my reading of LUPUS UK info and books and reading posts here and asking questions. I knew I had SLE and I fit the diagnosis criteria.
Rheumatology tried to discharge me to GP care only very early on.
I eventually went to the private London Lupus Centre in April 2017 out of sheer desperation. The meds weren't controlling my symptoms. I was sinking lower and lower, which with 3 children to look after was becoming almost impossible.
I got told I was SLE. I had done since the beginning. I still go to that doctor in London now.
I've seen 4 different NHS Rheumies now. All say that as my bloods show positive ANA in 2013 and 2016 - only twice - that my lupus is not active now. They only take bloods into consideration.
My London Lupus doctor tells me that although we are dampening down my lupus activity, it is definitely still there. Completely different ends of the spectrum. He listens to me and believes me. Why would I make this stuff up??? He treats on what I tell him.
Last February I saw him and he wanted to add in methotrexate to my treatment plan, in a low dose, to my hydroxychloroquine, mepacrine, 3g MMF etc. I am suffering increasing joint issues and he told me that MMF is not good for these symptoms, methotrexate would be better. But by using the two immune suppressants, I'd get the best of both worlds.
I then saw a new NHS Rheumy back in Wales.
She said my lupus was inactive and had been for some time. She would not implement the other doctors treatment plan. She would take me off MMF and other meds. No need. I was in remission. It certainly doesn't feel like I am.
She asked me if I was going to carry on seeing this doctor in London and her. I said yes. I wouldn't stop seeing him, as he was the only one who listened and took me seriously and who got me the right diagnosis and helped with treatment plan. She said that wouldnt work (despite the NICE BSR Guildelines saying that local rheumatologists and experts should work together for the benefit of the patient). I had to chose who I'd see. I chose the London doctor. So I now have no NHS Rheumy yet again.
I got my blood test results in and she didn't do lots of tests she should have. No vitamin D. I have been experiencing severe pain in my lower legs at times, making it difficult to walk sometimes. I have exchanged letters, telephone calls and emails with my GP surgery, fighting to get a vit D blood test. I won. It was 31. So close to your levels. The relationship between Vitamin D and lupus activity is well documented. I have been told, I think by someone on here when I posted about vitamin D that some lupus doctors do not stop prescribing Vitmain D until levels reach 200. Normal range is 50-125.
My GP has prescribed me 800 units every other day. Which I am sure is also wrong.
Anyway, I just wanted to say that I understood why and how you feel as you do.
It's disgraceful. The worry and anxiety this all brings to us when living with such an illness is so unfair and unjust. People with other illnesses aren't made to feel this way.
Melanie Sloane and Prof Caroline Gordon have published 3 papers on this very subject, with LUPUS UK.
Some of us took part.
It's awful that so many of us are treated this way but also comforting to know we aren't alone.
We all understand you wanting, needing to be understood and listened to, taken seriously.
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Depressing facial rashes/What do you do?
Has anyone had neck gland scans to check if a dry mouth is Sjorgens? 
