Hi, I’m newly diagnosed with Lupus and just starting treatment and trying to learn how to understand it. I’m 65 and it has taken me over 10 years to get diagnosed. Started off about 12 years ago being diagnosed with Fibromyalgia. As symptoms progressed I thought I was going mad as nobody seemed to take my symptoms seriously, one GP saying “all fibromyalgia is is deep muscle pain, so draw a line under it, lose some weight, and get on with your life and stop moaning”. I was self employed at this time and working about 49 hours a week plus. 2018 I had pneumonia, and HS Purpura. First GP told me the extensive “rash” was HS purpura, was something children had and would go away. After 2 weeks it did then came back. 2nd GP tried to get me admitted to hospital. My kidneys were bleeding. Long story short, had gall bladder removed in an op that took 4 hours! Eventually referred to rheumatologist who said I had Sjogren’s, but chest was bad so had X ray all clear, went straight back in to see him, nearly collapsed with coughing in front of him, given steroids. I had had 4 lots of antibiotics already. After steroids had another 3 courses of antibiotics. 8 months ago saw GP as breathless. Blood pressure 209/120. Given immediate ecg and tablets. 4 weeks later added another tablet, 6 weeks later another. Breathless walking short distance. Ribs have been very sore for years and was told I had costochondtritis. Every time I try to discuss other symptoms told we have to sort out one problem at a time. Started having severe spasms in ribs trying to reach up or to the sides. In the end I had a blazing row with GP. He looked at my file over 2 days to find anti nuclear markers had been missed and referred my to rheumatologist ( they weren’t seeing anyone because of Covid). Went to see him and he seemed miffed GP had picked it up. By this time I was a mess. Tired, in pain, depressed, swollen joints, mouth ulcers, swollen glands, chest problems, depressed. Rheumatologist said again, Sjogrens he thought. Did anti nuclear bloods etc, and started steroids and Hydroxychloroquine. First week no change, but by end of second week life transformed. I had my life back. After steroids stopped most of it back within 2 days. Saw him 2 weeks after that and diagnosis was Lupus. My shortness of breath is terrible. I get out of breath sometimes going Down the stairs. On my rare visits to shops I’m sometimes asked if I need a seat as I sound bad. Is this part of Lupus? Told GP and rheumatologist and both just say “oh” or “right”. Ribs are really sore like steel corset squeezing me. Sorry such long winded first post but really need advice. I cannot grip things like cups, saucepans, bottles etc properly as painful. I drop things all the time, misjudge getting through gaps and end up smashing my arm against door frames, walls etc. I have restless legs. Blood pressure still not under control but now we are dealing with Lupus and no further discussion with GP on that score. It’s a nightmare. Having my blood pressure done brings me to tears as it’s so painful. GP calls me anxious. I’m not anxious but in so much pain! Any advice or help appreciated.
Chest problems and Lupus: Hi, I’m newly diagnosed... - LUPUS UK
Chest problems and Lupus
Hi Bowenlady.yes it's all part and parcel of lupus. My journey was something similar. Lupus affects organs with connective tissue so lungs,heart,kidneys and brain.pleurisy is common in lupus too.mine started with pleurisy in both lungs followed by repeated bouts of pneumonia which has caused permanent damage to both bases.i also have lupus in my kidneys and inflammation of my heart put me into heart failure for a year in 2014.
Hydroxchloroquine takes at least 8 weeks to start to work 6 months for full effect so steroids will only help while you take them.the hydroxchloroquine works by damping down your immune response quite often steroids are taken as well until the hydroxchloroquine starts to work and then steroids are withdrawn.if hydroxchloroquine isnt enough another immunosuppressants may need to be added at a later date.both lupus and hydroxchloroquine causes photosensitivty so cover up head to toe,hat,sunglasses and factor 50. Eye tests are essential before taking it and every year as it can cause retinal toxicity..
sjorgens affects moist areas like the eyes , mouth and lower regions of our anatomy.i also have sjorgens.
Ive done pulmonary rehab and the first thing you learn is breathlessness is fine .there are several breathing techniques to help with breathlessness but learning to pace yourself is a must.
Gps are no good with us lupies we are far too complicated.you are more likely to have more then 1 AI illness ( I've got 5 🙄) and many illnesess and symptoms overlap. I'd say you need a full blood panel doing inc DS-DNA,compliments,immunoglobulins b12 . thyroid,renal and liver function too.
I have b12 deficiency anaemia which is another AI illness and causes restless legs,stumbling,mouth ulcers ,pins and needles and headaches .if I was you I'd keep a symptoms diary .one thing your gp is right about is anxiety.you must keep stress levels to zero if possible as that is a major contributing factor and will make you worse.depression is also common in chronic illness so you may want to think about asking for help with that.google the spoon theory.
I'm prescribed pregabalin for pain and if I ever make the mistake of running out I have problems with grip as my hands hurt and go stiff..it is a very long journey there are no quick fixes or answers drugs take months to work but you will get there .
Be kind to yourself ,stay safe and keep smiling xxx
P.s some will try and fob you you off so try and educate yourself you will be able to fight your corner better xx
Oh my goodness! Thank you so much. I’m in tears reading it. Why can’t the rheumatologist tell me stuff like that? I have been on Hydroxychloroquine for about 9 weeks, but the steroids were stopped and started again after blood tests and diagnosis. As soon as I get down to 2 steroids a day it all starts building up again. I have not been sent for an eye test before I started the Hydroxychloroquine. I have very dry eyes and had elective surgery to correct my eyesight about 10 years ago which went a bit wrong so had to have the left eye redone. Wake up some mornings as if the eye is raw. About the breathing - wouldn’t any problems show up in the X Ray or CT scan? My butterfly rash is on my chin and every doctor I asked about it said they didn’t know what it was. I will definitely wear suntan cream as you advise. Nobody told me to. I am a redhead and burn. It wasn’t until I was 50 years old and talking to my husband that I realised that other people’s skin didn’t hurt in the sunshine! Then put it down to my colouring. My little sister was the same. I have explained to both GP and rheumatologist that in my right kidney/liver area I have a pulsing hot pain. It spasms too, but the constant throbbing is draining and wakes me up during the night. My sister died at 56 from late onset congenital hepatic fibrosis and I have had a liver biopsy when I had gall bladder out which showed no sign, thankfully. But this is the same pain I had when I had the gallbladder problems and was told then that my liver was very inflamed. Do you think this is part of Lupus? The rheumatologist has changed his attitude since diagnosis and is a bit kinder but not very forthcoming and if you don’t know the condition don’t know what questions to ask. I did keep a diary and when I read it off to him it was very helpful so I’ll keep doing that. Thank you so much for sharing your knowledge and advice. I feel like I’m battling alone, and it’s nice to get support.
Please don't think you are alone because you are not...certainly not here anyway.weve all been where you are now.I'm steroid dependent having been on steroids for 7 years when I get down to 7.5mgs my lungs flare.depending on how long youve been taking them you must drop steroids slowly.
The hospital should test your eyes but you can go to an opticians. They just cant do the cambridge colour test for hydroxchloroquine.my hospital has only recently got the equipment for testing so the opticians have done mine up to now .I've recently had an eye test for new glasses so the hospital are taking over next year. I'm currently recovering from a bout of epi scleritis which is inflammation of the eyeball connected to sjorgens and lupus. The best eye drops for it according to the eye clinic are hyloforte .you can buy the ott (amazon) or they can be prescribed by gp.i have been given them but haven't used them yet as I'm still on prednisone eye drops for the scleritis .wraparound sunglasses are best for sjorgens.
Not necessarily if its muscular.pleurisy is inflammation of the membranes between the lungs and chest cavity .the best breathing techniques are deep breath in through the nose out slowly through persed lips or a quick sniff then 2 quick blows out through persed lips as if blowing out a candle repeat 5 times.the worst thing you can do for breathlessness is breath quicker you need to slow it down so the technique takes practise .I've recently had a larnyxoscopy and my voice box is hypersensitive which adds to breathing issues so the sniff technique is designed to relax the voice box aiding breathing .also dont breathe using just your upper airway you need to breathe using all of your lungs using your diaphragm.
You have to put suncream everywhere as expose to uv on your skin anywhere will trigger the rash on your face....I always forget the top of my feet in sandals 🤦♀️.lightbulbs and fluorescent lights are another thing as they emit UV. I'm slowly changing the light bulbs in the house to uv free ones.dont forget factor 50 lip balm too
Kidney wise lupus doesnt cause kidney pain 60% of lupies have kidney involvement without realising it.one of the main signs apart from protien and blood on a labstick is foamy urine so I'd be pushing for further investigation or requesting a referral to nephrology.
Dont be afraid to ask here everyone is very friendly and supportive with plenty of advice and experiences to share. We also share other things like pets,crafts,achievements ,photos and even blonde/senior moments .. after all there is still life and laughter beyond a lupus diagnosis. Best wishes SML xxxx
P.s if it's any consolation my monthly script is 16 items and that's not including antibiotics or nebulizers.i take on average 28 tablets a day 😔 xx
Really helpful advice. I sit every night that I can with an overhead lamp light when doing some knitting! It’s one of the things I can still do that isn’t too painful. I now knit small items because the weight of larger items can be too much! I wonder if this is causing me some problems?? I knit for hours on end. I was told it was good for arthritis to keep your hands active. I used to be a massage therapist and reflexology and Bowen therapist so always using my hands. I’ve always tried to look after them. We will have to investigate what sort of bulb is in there, I think it’s what they call a daylight bulb! Flipping heck there’s so much to think about. Thanks for that.
I've just ordered some daylight bulbs for the kitchen.i find warm white to dark for me now.im a big knitter as well and when my hands are sore I crochet as you dont hold the same weight.compression gloves worn at night can help with pain and swelling xx
As for there being no pain relief that's rubbish ...there is pregabalin and gabapentin for starters 😡 x
That's rubbish about pain relief not being the GP's problem..it's basic medicine!! If you've been using over the counter stuff like paracetamol n it's not helping u there r many options..I take tramadol when I need it..it's not for everyone apparently but it suits me!! Other pain relief is available 🌈😽😽xx
Hi,loads of bells ringing in my head.My history isn’t quite like yours.
I’ve had asthma for years
Had various issues including dry eyes,athritis type , pain inrightlug,alwa tired,but had3 children’ and was working.
All treated on a symptom by symptom basis.
N 2017 I thought my asthma was worsening.
Waiting for ever at the local general hospital.
Eventually in November was blue lighted to hospital Ithink extreme shortness of breath.
I spent 4 hours in resus.
Stayed n hospital for 11 days.
I was diagnosed with Non Specific Interstitial Pneumonia..
They changed loads of meds,referred me to Wythenshawe hospital interstitial Lung Disease Unit..they ring me 3 weeks later,can you come tomorrow.YES come at .we were there aT.
Had loads of tests,then gave an ntensive history to a nursing sister. I then saw the lead consultant,who was very open. He answered my questions and said he was referring me to rheumatology,as my bloods weren’t co brunette.
So loads of bloods.
The rheumatologist and ILD consultant have joint clinics.through the course of2019,lupus,RA Sjogrens were mentioned.
It’s now loosely classified as undifferentiated connective tissue disease?
I’m m on immunosuppressants for the Connective Tissue Disease.
It’s a bit frustrating as my presetsing problems is my lungs.
I also get pain over my lungs and over my ribs.
The pain has never really been acknowledged or treated,I’ve just managed the best I can.
I feel for you the way your problems are not being looked at as a whole.
I’m feel so lucky that I have joint consultations,so things can be looked at all together.
I’ve got a phone appointment with them on Monday,so I e got a list of stuff I need to ask them.
Are you on any pain relief ? You need to take it regularly to see maximum benefit.
I think it may benefit you to ring the British lung foundation and LupusUK for advice about what to do.
It might help you if you read the planning and pacing yourself section on Lupus UK.
I fine it frustrating that I’m 69, should be enjoying my retirement,instead I’m struggling with these conditions.
Take care,if you need to know anything else I’ll try to help
Hi, I asked about pain relief with my GP and he said there is nothing, I had to be referred back to the rheumatologist. The only reason my appointments were stopped was because of Covid so I went a year just getting worse and worse. I nearly choked one day because my chest was full of mucus and I started coughing in bed. I was lying flat on my back, but because of the pain everywhere I couldn’t move to get up. Started choking and unable to breathe so eventually grabbed the fitted sheet and hauled myself onto the floor on all fours. It was so frightening. Thankfully I only have mucus about once or twice a week then nothing for a week or so - just doesn’t make sense. I keep telling the rheumatologist about the pain and he says the steroids will help until the Hydroxychloroquine kicks in. I had huge cysts in both breasts for over 10 years (diagnosed by private consultant), which were like large marbles and painful. When I took the steroids this time they all disappeared which was great. I have a rash all over my body in the summer in patches and my breast are a purple rash in the winter. I have quite thin hair but put that down to being a redhead as we have less hair than the rest of people. However for at least the last 10 years I have no underarm hair. It suddenly went and my head hair started getting thinner around the same time. I may be imagining it but my hair is starting to feel a bit thicker on my head, could the meds help that I wonder? I stopped work in November 2018 after closing my business. Like you, I thought I would be enjoying life and retirement. With this and Covid it’s not what I ever thought would happen. X
I do t think your GP is not being gvery compassionate about your pain.Have pain in Mylar gs.they say there are no nerves in your lungs,but mine have become increasingly painful.
My GO has been good. We’ve tried all sorts. Codeine helps a lot.
I’m also in touch with a palliative care consultant,we tried Fenta ylpatcges.
Half dose didn’t touch it,so we may try again with a full dose.
At present I’m Ona months trial of Lidocaine patches,they take te edge off the pain. I e taken paracetamol today to see if it helps.
Her approach is different,she’s wanting to relieve symptoms.not find answers.
My hair was always rubbish,but it’s even worse,
I’ve got a brilliant hairdresser,he cursmyhair,so it’s tidy.
I’ve not got much hair,but it sticks up like fury.
Did try a wig last year.
It was good,but it’s too hot in summer, you cant throw it off in the meddle of a crowd.
After a few months it started to slip,so I do t bother with it any more.
You say your hair feels thicker,I hope I keeps improving. We just have to keep on and do our best x
I saw a professor of respiratory at wythenshawe ..he said it was auto immune but my local hospital refused to accept his opinion. He said reduce the steroids so I did and went stiff ...only then did they send me to rheumatology...they rest they say is history xx
Thank goodness,I get referred toWythenshawe immediately and on to rheumatology.My local general hospital is not good,so I’m fateful my care is all at Wythenshawe.
Hi Bowenlady 🤗🙌I'm so glad u posted..welcome to the forum 💐
It's true what spaniel mad says..a diagnosis takes a long time for most of us (7yrs in my case) with misdiagnoses along the way!!
I was diagnosed with subacute cutaneous lupus (SCLE) in 2017 n it's taken 2yrs to get my symptoms under some kind of control!! I discovered that having SCLE was ok coz it didn't affect the inner organs just the skin..however skin is everywhere n I've had horrendous rashes almost constantly n the soles of my feet n palms of my hands became ulcerated..omg makes me shiver just remembering those periods in my life!!
I've been managed by my dermatologist mainly but recently was referred to rheumatology too n I'm showing sicca signs n I have positive blood markers indicating that I have developed sjogrens(can never spell it) so it's true that one autoimmune disease is usually accompanied by others!!
Of course your anxious..who wouldn't be? I became incredibly anxious..there was something going horribly wrong with my body..I'd been healthy up until this point (peri menopause) n couldn't figure out what was happening n neither could my doctor!! I was treated for fungal infections in my feet..lots of head scratching going on when treatments didn't work.
I was admitted to hospital in 2013 with a head to toe rash that was diagnosed as Stephen Johnson's syndrome a rare allergic reaction to flucloxacillin..this has now been disputed by my rheumy n he thinks it was lupus related!! 🙆🤷
I've tried loads of meds..some helped..others didn't!! In retrospect I don't really think my dermy had much knowledge about lupus..n my GP definitely didn't coz she told me that..bless her she's fabulous!! I say that coz she's been with me through thick n thin and she and I are learning about lupus together!!
I will also add that my dermy consultant didn't actually find the lupus..it was a registrar that I saw when I was having my feet dressed by the dermy nurses. I was in a lot of pain n in walks this young guy..very flamboyant n I thought 'oh no this is all I need' 🙆 He asked if I had rashes anywhere else n I ended up with him looking very closely at my right breast for some time!! He then misdiagnosed scabies!! 😹😹
However he did send me for loads of blood tests..one of those being lupus n bingo..diagnosed n prescribed hydroxy!! If I saw that young man now..I would kiss him!! Even though I'd never heard of lupus I felt relief just knowing that I had 'something' n that it wasn't just all in my head.
This forum is wonderful..supportive..n caring!! Sharing our experiences n worries helps us all n let's face it we're all living with this 24/7.
I have learnt more about lupus here than from any doctor involved in my care n what's even better is that I know when they're talking crap!! 😹
Symptom diary is a must..you've got so much going on right now it's easy to forget n it's handy to look back through your notes prior to appts .then u can ask appropriate questions n hopefully get appropriate treatment. For instance you've noticed that below a certain dose of steroids u flare..I do that too so now I'm on a very slow tapering dose with other meds to help me reduce the prednisolone. It takes time, patience n alot of frustration n tears to negotiate our way through this little known about illness.
Oh my I've gone on a bit!! 🙆😹
Check out lupus UK website n as your redheaded with fair skin I would recommend u wear a widebrimmed hat when you're out as well as sunscreen n definitely cover up!! I'm extremely photosensitive n it's a tricky thing to manage.
Sorry for the essay!! 😔😹🌈😽😽Xx
You’re right n say g medics talking crap.my hospital admission Ward was rubbish. The respiratory Ward was brilliant. They quicopy picked up that I had auto immune issues,m bloods were really deranged.They referred me to Wythenshawe,who have been great.
They do joint appointments with rheumatologist andILD specialist.which works well for me.
Phone appointments for now, have an appointment scheduled for Monday.i have a list of questions as usual.
Although my health is rubbish,I feel that the care I’m getting is excellent.
Best of luck for Monday Oshgosh🤗 glad to hear you're all prepped!! 🙌👍 🌈😽😽Xx
I think I’m prepped.i always write at the top of theist BE POLITE. - assertive.i also remind myself to be aware of what I say. It’s all noted.I plan to ask why I get breathless at rest with O2 in the high 90s.
I did ring the ILD help line about this.the nurse who got back to me ha e me a pep talk about dealing with. Breathless ness.
She either didn’t wanttodiscuss
T with me r she didn’t listen.so I plan to ask the consultant.thank you.
I have a lot of swear words in my symptom diary!! 😹Yes always be polite!! I hope all goes well for ya 🌈😽😽xx
My husband calls me potty mouth . I’m usually cursing my breathless ness. I get a bit frustrated. They don’t seem to want to acknowledge that a lot of the problems I had last year were down to side effects.
Hi Bowenlady so sorry it sounds like you’ve had a really rough time. Not helpful for GP to say things like you’re anxious! You are in pain and quite understandably looking for answers and treatment that works. At least on the steroids as you say you got your life back. There is a positive in that you know they can work, which bodes well for other immunosuppressant treatment working. As spanielmadlady says they usually start you on steroids alongside HCL so hopefully they will revisit now your symptoms have returned. And yes way too complex for GPs, rheumatologist usually direct them and the GP should ideally check in with them for advice.One more minor thing, but it is expensive- SPF 50 lotion is available on prescription for people with lupus. I have fair skin too, it’s just a case of being a bit more careful in the sun.
Sending you best wishes. You’ll find lovely people and support here. I hope you begin to feel less alone. Xx 😀🥰
Thank you. It’s so lovely to get this support from people I don’t even know. I realise I barely know anything about Lupus and I’d better start reading and getting myself informed ready for the next rheumatology appointment in about 5 weeks time. Just a little question. I have nose sores etc but for over two years have had creaking and popping noises going on in my nasal cavity, sort of sinus area. Is that normal? GP says “let’s deal with blood pressure first”, rheumatologist says “I see” and end of subject. I think I need to be a bit more forward in my questions and the only way to do that is to be better informed. I have gained so much knowledge today. X
You’re welcome. There’s a helpful page on lupusUK about preparing for your appointments. Pen & paper and list all your questions in priority order. If you have a partner who can even go with you that can help to remember what’s been said. I had loads of questions like that. They don’t always have the answers or sometimes they can say “that sounds like a lupus type symptom”. I’m not sure about your sinus, but others here may know. Perhaps the nose sores are irritating the lining & causing more mucus in your sinuses. My left sinus is often blocked & crackles no idea why! Once the HCQ starts to kick in hopefully these sores should improve.
lupusuk.org.uk/getting-the-...
Take care x
Sorry if I missed it but what happened to the Rhumatologist prescribing a immune suppressiont. I though that would have been the ver first step after finding out that hydroxeclariquune isn’t helping it. As to be started on something
He prescribed steroids and Hydroxychloroquine. Then he stopped the steroids for 2 weeks and I got worse. I started getting worse when he dropped the steroids to 2 a day then two weeks later they stopped. Within 2 days of that it all went haywire again. He says the Hydroxychloroquine takes weeks to work so we are waiting for them to kick in. He put me back on steroids. 4 a day for a week then 3 a day for a week then 2 a day until I see him in 5 weeks. Already the pain is back since I’ve been on 2 a day. I was quite emotional when I was on 4 because I felt normal again and had energy and felt so good. I was devastated when it all went again.
Hi there, so sorry to hear that you are very unwell - I am fortunate these days to be classed as having 'mild' Lupus, and just on Hydroxycloroquine and Amitriptylene , but back in my fifties I was in a n undiagnosed terrible state and practically house bound with awful pain, swelling and fatigue. So there is sometimes light at the end of the tunnel 😊 To answer one of your less serious questions - The creaking and popping in your nasal cavities. I am pretty sure this is caused by the mucus shifting around. Depending on what position your head is in and held for a while (for instance in bed with your head laying on one side) when you move your head to the other side, the mucus starts moving in that direction and so creates the popping emptying sounds. Does that make sense? I get a lot of mucus and it happens to me. Best wishes!
That makes sense. The strange thing is I don’t get blocked sinuses or sinus pain unless I’ve had a cold or chest infection. Just this damn creaking and popping. It’s less during the day but in the evening and when I’m in bed, even sitting up, it’s so annoying. I’m glad yours is now mild, and compared to the terrible things other people here have experienced I’m sure (and hope) mine is nowhere near as bad as theirs. If I could just get to the stage where I understood what was happening to me and control pain I’d be happy. In the week I argued with the GP I was so low, tired, in pain that saw no reason to be around. Thank goodness for the support of my husband. You are all light at the end of a tunnel for me. Thank you. ❤️🦋
Hi - just wanted to say sorry you’ve had such a rotten time and it’s taken so long to be taken seriously.
I think you need to find out what your antibody panel shows because I have +ANA and spells of severe breathlessness, chest pain and dry cough, hoarse voice etc. All has improved now I’m treated with mycophenolate, yearly Depomedrome injections, 100mg Losartan and Iloprost infusions. Lung problems are as common with Sjögren’s as Lupus - maybe more so. Or you could have both perhaps. I have Sjögren’s and systemic sclerosis so know quite a lot about the way both impact on the airways now. Both of these make ILD much more likely.
But anyway they shouldn’t just be leaving you with chest pain and breathlessness without x-rays, echo etc untreated - Covid climate or not that’s just wrong.
So can I suggest you ask for copies of all letters and bloodwork and imaging and take control over this because knowledge is power. You say you stood up to the GP so please do keep battling away at them! It’s hellish and we shouldn’t have to but one thing I’ve learnt in my 58 years of life is that those who shout loudest tend to get heard. Xx
Yes good point. Ask to be copied in on any letters they send to your GP& copies of blood test reports- forgot to say that. Then create your own file. Really helps to keep track of the illness & treatment xx
Thank you all so much. My head is buzzing with all the info. You all sound so much worse than me. I’m going to try to think of a way to ask for letters etc as I don’t want to upset the rheumatologist but do need answers. He’s a quietly spoken man who doesn’t offer much information. So a list like you suggest would certainly keep the conversation going. I asked if the lumps in my breasts could have been because of Lupus and he said “could be”. “It’s all autoimmune stuff.” I expected some medical explanation but it all seems so vague. I’m going to start a new book of symptoms tomorrow and take that with me next time. In the back I will write the questions so that they are there. I also have terrible brain fog. I have never claimed benefits apart from for 6 weeks in my 20s when I moved from Wales to Hertfordshire. I have tried to get a Blue badge for parking from the local Authority. The lady asked how many points I had for PIP????? I explained I didn’t claim. She said I should because that would get me the blue badge. I just want the badge! So I rang up to get a form to see if I would go ahead with it when it arrived. The man asked the name of my GP. I just could not think of it, it was just out of reach! I said I had brain fog and was having a bit of trouble so please give me a few minutes. He repeated “your doctor’s name Mrs Perry?” It made me worse. I said we’d go back to that later but he said we couldn’t as he couldn’t progress. I started to feel pressure and ended up in tears of frustration then he said “Mrs Perry do you have problems with memory?” - er no, I have brain fog, it’s there , I just can’t find it at the mo. Then he said “Mrs Perry when you read written text is it meaningful to you?” Now THAT made me feel like having a potty mouth! I was mortified and explained that my cognitive powers are sound and both written and verbal words are meaningful to me! I was furious. About half an hour later I remembered the name of the doctor that I have seen so often over the last 8 months. I cried buckets.
Ohhh that’s not good. Sorry they upset you. Sounds like they were pretty insensitive! Those questions they asked you sound like scripted questions, I wonder if actually they are trained to look out for people with dementia and make reasonable adjustments, (not exactly sensitively done as you don’t have it, but maybe why )🙁 Different councils do blue badges differently. My mum’s a few years ago was really easy I just emailed her ID & they even accepted her prescriptions as proof- they were really lovely. A letter from your GP can be enough. If you have PIP it just makes it easier for them as it means you’ve been independently assessed (you can’t walk more than 20m to qualify for PIP it’s v tight!) However it isn’t essential in order to get one. You just need your GP to write a letter giving them evidence of your condition, meds and difficulty walking.
Ps I forget names of people like GPs all the time. I’d have been exactly the same put under pressure!
The woman from the council said not to bother with the GP as they send letters saying “I think this person needs a blue badge” or “she says she can’t walk far and she needs a blue badge” and they will not accept it and you get charged by the GP. She said they do have discretionary powers but it would be if the rheumatologist sent a letter saying I cannot walk more than 50mtrs without significant pain or distress. She told me to get the form as she feels that I have a lot going on that may make me qualify. I don’t think I will qualify but have gone through the motions and filled it in. Then I will tell the rheumatologist that I followed their advice and didn’t qualify so can he consider providing the required info. That’s the plan. I know nothing about all of this so I’ll give it a go but the difference it would make to my life to park near the supermarket door would be great. I know I’m rabbiting on here all the time but I’ll explain what happened the other week. I drove to Morrison’s. I always park in the same place where few others park because I keep forgetting where I park the car, and my small grandchildren know where to go if they ever get lost or separated from me. There was a queue to get in, it was raining. There were no shallow trolleys near the door but I couldn’t see that until I got the head of the queue. By that time I was aching all over and my arms were like lead. I took a deep trolley and asked the man in the foyer if someone could get me a shallow trolley as I had problems with my muscles. He told me no he was not allowed to leave and I had to go to one of the bays and get one. Told him I couldn’t so he just shrugged. So I did my shopping with the deep trolley. When I got to the conveyor belt I had to load the shopping onto it and by the time I finished was nearly in tears and had sciatic pain both sides. My ribs were on fire from the bending. Cashier asked if I was ok. Pushed trolley to security guard and asked if he could find someone to walk to the car with me to get my shopping out. No - he was only security I should see supervisor and he pointed her out. Went to her - didn’t even get a chance to ask - sorry love I’m dealing with an urgent matter can you wait - and was gone. I went back out to the foyer and asked the man there again if he could get someone. No, and he wasn’t able to leave so he couldn’t. I walked out into the rain to the car. Opened the boot and tried to pull one of the bags out of the trolley. Something in the bag got wedged in between the gaps in the trolley and I couldn’t get it out or let it back down, it was stuck. I just stood there in the pouring rain and bawled my eyes out. A woman pulled up next to me and ran across to me asking what was wrong. I explained and she took the bag off me, unloaded the rest of my shopping and put it in the boot and put my trolley in the bay. After she left I sat in the car and cried and cried. I have always helped others, taken them shopping, help dress them, take them to appointments etc. I felt so miserable, and quite frankly sorry for myself. I could hardly move the rest of the day and was in so much pain. This is what has prompted me to ask for a badge. I’m so frightened people will think I’m trying to get it because I’m lazy.
Oh that is rubbish. Thank goodness for that kind lady! It sounds like you are understandably at the end of your tether. I really hope things are about to change and this is a new chapter.This is exactly what blue badges are for. I actually think you will qualify (a few of my friends have them for exactly these sort of symptoms). Your pain combined with your breathlessness means that (I imagine) you would struggle to walk 50m & if it’s difficulty to walk 20m without breathlessness get him to write that. I’m surprised they won’t accept this from the GP in fact i’ll stick my neck out & say I don’t believe her. They are qualified to make this judgment. If the consultant won’t do the letter (he only needs to list it when summing up your symptoms in his letter to GP), ask your GP to instead. This would be sufficient from a GP or a consultant.
People won’t think you’re lazy. Lupus is one of those conditions that people can’t see, but it doesn’t make it any less real. When I do these form filling execises I put myself in the shoes of the person processing it and imagine they don’t want you not to get it, but they just need all the evidence so that they can give it to you. I would try to hold the mindset that you do qualify (without meeting you, I’m as certain as I can be that you do) & that the blue badge system was created for people in your situation. Also there’s no shame in applying for PIP or attendance allowance (neither are means tested). My parents were very reluctant to apply, but I explained they had paid for it themselves through a lifetime of NI contributions. If you meet the criteria you’ll get it. This can then be used to improve the quality of your life.
BTW we’ve recently switched to delivery shopping and been v impressed (much better than it was pre-COVID). This could help with heavy bags. The person delivering is lovely and patiently waits as you unload. You could maybe have a foldable table handy so you don’t need to bend down. I don’t think I’ll go back to doing big shops by car.
I've had some wonderful advise from this lovely lot. Please get yourself this book. It was a game changer for me. True light bulb moment, everything clicked into place.
Lots of love x
Great book 📚 Amazon have it x
I bought it from Amazon straight away, thank you.
Hi Bowenlady, I am so very sorry that you are having such a terrible time. Your GP is a disgrace, can you see someone else at the practice? I have had to change mine several times. There is no reason why a GP cannot control your pain. There are so many choices of pain relief and there will be something that helps you.I think many GP’s sadly have little more than basic knowledge of AI conditions, if they did they would know anxiety and depression is commonplace. That said many of the Rheumatologists I have encountered over the years, who claim to be Lupus specialists are very dismissive and contradict one another. If you find it difficult to communicate with your Rheumatologist is there another one you can be referred to? Diagnosis is often problematic I was fortunate to be diagnosed within months of becoming very unwell but there had been years of ill health with symptoms that were unexplained. They would come and go so I felt like a hypochondriac. One week breathless, another severe gut pain, another vomiting, another an inability to put my heels on the floor without severe burning pain, headaches, joint swelling, rashes, choking, incontinence, infections, balance problems. It was not until I physically could not weight bare and was covered in a bright red rash over my face, arms and legs that I was admitted to hospital. Initially they thought a virus but my bloods were all over the place so they thought leukaemia. It took months of numerous hospital admissions with chest pain thinking I might be a heart attack then told I had pulled a muscle when I had hardly got out of bed the fatigue was so bad. My GP was at a loss so asked me to see her colleague who had more experience. Within twenty minutes he said you either have Lupus or Lymes ?? He did the specific blood tests and two weeks later rang and said you need a Rheumatologist quickly as your bloods strongly indicate Lupus. Two weeks later I had the diagnosis. In the years that have passed since my diagnosis has been changed, taken away, dismissed, reinstated so my best advice is for you to find a Rheumatologist that you can work with as this is for life. As others have said keep a symptom diary..however trivial things might seem to you they may be relevant. Take photos of any swellings, rashes, ulcers. Go to appointments with bullet point lists. I wish you the very best of luck. You will find so much help on this site xx
Thank you so much. Sounds like an uphill battle. I presume that this is why the rheumatologist said as if pronouncing a decree “ I am happy and confident to give you a formal diagnosis of Lupus”. I thought it was a bit dramatic to say but if they can remove and put it back I see why he needs to confirm it like that. Dear God, the problems you have all gone through are horrendous! I will push about pain relief. It seems strange to me that he said there is nothing. I thought it was because generally the pain changes on an almost daily basis but the kidney/ liver and chest and rib pain are constant. If they could ease that pain and help with my breathing I’d be so much more comfortable. The trouble is by the time I get in to see him my breathing has eased and I sound “normal”. They check with a stethoscope- it’s all clear and they just say there is nothing wrong! I’m sure he thinks I’m losing the plot or making it up.
Honestly we have one thing in common here it seems in that we have been disbelieved at some point. Two years ago a Rheumatologist told me I had Fibromyalgia and “ hysteria”. I was so shocked and upset I did not even respond. I had seen him 3 months before where he felt my Lupus was not controlled and upped my Hydroxychloroquine to 600 mg. Within two months I developed eye problems. My Optician said my eyes had fluid on the macular caused by the Hydroxychloroquine and my eyes were at risk of rupturing. The Rheumatology nurse got me an urgent appointment with him which had annoyed him apparently. He declared that the advice given by the lupus Unit was “ crap” and that whether I liked it or not I was always ill with nothing ever found?? I came out and sobbed. I would suggest that you get someone to video you when your chest is noisy, that way when you get to see your Rheumatologist he understands your symptoms xx
Damn that’s a good idea! I am a redhead and have a temper to match I’m afraid. I take the nonsense from the doctors for so long but if they catch me when I’m tired (because I’m awake through the night nearly every night) and in pain and feeling depressed, a little switch goes in my head and my mouth takes over. This is what happened with the bust up with the Gp. I’m surprised I didn’t get security after me as we were both literally shouting at each other. All because I wanted him to examine my ribs and he just wanted to deal with the blood pressure. What took me over the edge was he looked me right in the eye with a big smirk on his face and said “let’s just deal with the blood pressure shall we?” So I said “Let’s not eh!” And ripped into him. He screamed at me that he had given me enough of his time dealing with my blood pressure issues - more than most patients - oh well that would be because he made me go to see him and found my blood pressure was 209/120 and he nearly crapped himself! He then went on to say that I knew he had had Covid and that he had been off sick. My reply “oh and does my knowledge of you having Covid stop my ribs from hurting and stop my shortness of breath?” You can imagine where it went from there. I shouted that I have been in pain for over two years with the ribs and liver area. So far they have sent me for lung X Ray, kidney scan, liver scan. ITS MY RIBS! I got up to leave shouting “Don’t bloody brother you obviously can’t be asked to look” he made me sit down and said we would look at them. Then - wait for it - he took his stethoscope out of the drawer and went to listen to my chest! I just lost the plot and shouted “IT’S MY RIBS NOT MY LUNGS!” He pressed along my rib cage and I thought I was going to pass out with pain and actually fell away from him. He then said he didn’t know what to do with me and needed to take advice. He asked where else I had pain (I have told him so many times). So I asked if he meant my normal pain or the pain from the last year. He didn’t realise what I meant so asked for everything which he typed up. Then he said as it was Friday he would ring me Tuesday. Phoned me then and said he has found the positive anti nuclear readings that had been missed and asked if I has rashes etc. It doesn’t help that my butterfly rash is on my chin and, although bright red in the summer and granular can look like bad skin. Plus all the time I have seen him recently I have been wearing a mask. So he referred me back to the rheumatologist who hadn’t been seeing patients because of Covid. When I got to him 2 weeks later I was an even worse wreck, because of the doctors visit, and he seemed pissed that the GP had found the missed blood results. He still said he thought it was just the Sjogrens but after another lot of bloods and symptoms after steroids and Hydroxychloroquine he was confident it was Lupus. All this yet it seems so minor compared to what many of you on here have endured.
Good for you. I am afraid I have gotten worn down over the past eleven years. My first Rheumatologist was a shrugger. Doctor why have I got this constant tingling in my hands and feet? Doctor why is my balance so poor that I am falling over regularly? Doctor why am I having problems remembering things? Transversing numbers? Unable to say words despite my brain knowing what they are bt it is nit linked with my mouth? Know someone is talking to me but I am zoned out? Shrugging. I bought books from Lupus UK and when I saw him next asked him Doctor have you tested me for APS? Well he bristled and said how do you know about that? I started telling him that I read in a book from Lupus U.K. that it often went with Lupus. He jumped to his feet and sneered at me saying so you have read about it on the internet and now you have it? I jumped up and said how bloody dare you. I cannot work with you I grabbed my bag and stormed out. He was running up the corridor after me saying Mrs Anderson dear please come back. I was fuming and left. When I got home my GP rang and said I have had your Rheumatologist on the phone, you tested with positive antibodies for APS nine months ago so he wants you on aspirin and repeat the blood tests. She put in a complaint on my behalf and I refused to see him again. Now I just do not have the confidence or energy to fight back sadly. Don’t you change xx
You were brave. I’d be too frightened nobody would see me then. I have ordered a book Bonnyb recommended. Definitely knowledge seems to be power here. People are mentioning letters for conditions that I have no knowledge of so I don’t know what they mean but I can assure you I will by the time I go back in 5 weeks. Thank you.
video! that was exactly what I thought 😀👏
Give homeopathy a try. Will not interfere w/ current treatment but most likely will help with pain & depression. See a homeopath don’t try to do it yourself
So sorry to hear your awful journey. Wont go into details of mine but surfeit to say I've had the pneumonia/ pericarditis/ pleural effusion bit 15 years ago. Have been on immunosupressent and on / off steroids. Yes I get lung pain and breathless , here one day gone the next. Breathing exercises are the way to go. I was sceptical but they really do help. Palpitations drive me mad! Blood pressure goes through the roof at appointment , auto matic machine awful ,ask to have the old fashioned one it's much kinder .
It's such a lottery when it comes to GPs a d rheumys . I've moved from a Lupus centre of excellance to a useless area. Can you investigate areas near you to find a consultant with an interest in Lupus? Or a Lupus specialist nurse. Do you have a local Lupus group , they are very comforting to chat to, and in normal times have coffee mornings etc.
I hope you get sorted soon, stress is the absolute worst thing and and a flare doesn't really kick in straightaway. I have every intention to restart gentle yoga but dont have much mojo at the moment.
Take care and keep positive ❤
Don’t worry if he doesn’t hear or do the copying you in on the letters in your appointment. This is just a tick box thing that’s part of NHS. If you don’t get them they’re easy enough to get the secretary to send later. I’m pretty sure we have a right to these so they’ll be used to the request. Thankfully this is more of an admin thing.
Though story to read, I hope things improve for you soon 🙂
Thank you, I am so grateful that I have found this forum. Everyone has been so lovely and helpful. It has helped my husband too as we discuss what has been said here. We thought we were battling this alone. Thank you all. X
You are definitely not alone!😀😀😀😀Glad it’s been helpful.
BTW I just read about your GP shouting at you- that is completely unacceptable 😡and goes beyond unprofessional and that’s before you consider the fact you have high blood pressure!! So much for “do no harm”. If your practice has other doctors try another one (if there’s a nice receptionist ask them- they often know who’s friendly). There’s no obligation to stick to your named GP I don’t think people always realise this. I regularly swap around within my large practice, generally I see lady GPs as they tend to be more empathetic (although sadly they seem to leave a lot). If the practice is not good it isn’t usually hard to change practices.
Our surgery is a nightmare. Nearly all of the doctors have left. We have one managing doctor and several locum doctors. This is one of those but he’s been there for years. He has told me to stay with him for care as he was dealing with my blood pressure issues and gave me a number to phone him direct to make appointments. As I say he was the one that said my HS Purpura was something children have and was harmless and would go away. Ended up with my kidneys bleeding. I saw a female doctor in between that episode and having my gall bladder removed. She was amazing and as a result of what had happened leading up to there she put what she described as in indelible entry on my records that nobody can remove just in case I needed to refer to it at a later date (I think she meant in a formal complaint). When I see them scanning through my records a dark highlighted section comes up so don’t know if that is it. We thought he may be taking ownership of the blood pressure issues as he may have been mentioned in that. Unfortunately she has left. I think some of these doctors are so used to people being told what to do and believing they’re word is gospel that they get rattled if you dare answer back. He also called me a liar! He said “ I will not have you lying, I have given you more time that any of my patients so don’t you lie by saying I haven’t” that raised the temperature as I told him not to dare call me a liar, that he HAS given me a lot of time with my blood pressure but that is not my main issue, it’s pain. Time after time I have told him and each time he says “let’s just deal with the blood pressure” well it’s not good enough! Hence the big row. God I feel like a real moaner but I object to him calling me a liar! Time after time after time I have asked for help - won’t listen!
Stand your ground, take notes, record it on your phone, take a witness, I find GPS respond quite well to these interventions! We are all entitled to treatment that makes us feel as well as we can given our conditions, GPS need to accept this and stop sending us home with only half the job done. I once said to a GP - “if I had a wound that needed stitches would you stitch only half of it and send me home to see what happened “. He accepted my point and extended the 5 minute appointment time to a full 15 minutes! 😆
Brilliant!
That is not acceptable. And whilst he’s given you his direct number, this sounds like controlling behaviour. He sounds like he’s giving you high blood pressure 😡! (Giving me it just reading his comments) Seriously consider changing practices and despite what he’s said he can’t stop you seeing someone else like that lady you saw. It sounds like he’s worried about other doctors hearing about his behaviour.
Just a quick update. Went to see the same GP again today to discuss pain relief. Told him I had joined Lupus UK in an effort to get informed and that I believe knowledge is power so I have a list of things to discuss. I went through all the pain I was still experiencing and he said we should try Ibuprofin by having Naproxen. I said I couldn’t have that as it was contraindicated in one of my blood pressure pills. He looked through everything and said I could technically take it and it “should be okay”. I said should be wasn’t what I wanted. I said that the majority of people on Lupus UK had suggested Gabapentine. He looked at me shocked and said he would have a look. After doing all his checks he said that it looked fine and we should give it a go. He also gave me more Salivary stimulant pastilles for the Sjogrens and 50 SPF factor sun cream. Ladies thank you all so much for your help and support to give me the confidence to deal with him. Not a tear in sight this week and I feel more in control of what is happening to me. I am truly grateful. ❤️ I also asked if I had had an APS test done. He said why would I. I said “why wouldn’t I given my symptoms of dizziness, misjudging gaps, double vision and fatigue?” He said that perhaps the rheumatologist had forgotten, that he is a really good consultant and I should ask him about it on my next meeting because it had not been done. Result!
Yes!! 🙌Get in!! 🙌🎉🎊🎉 Well done!! 👏👏👏👏🌈😽😽Xx
Hi, glad to see all the responses and suggestions , you mentioned how we refer to our ailments and I know I’m guilty of this so to help: LS is Lichen Sclerosis - IC is Interstitial Cystitis but hopefully you don’t have these.X
Chronic Sciatica with Lupus
Fibromyalgia or Lupus
Results, and lupus symptoms ?
Lupus 
Can Antibody / ds DNA/ ENA/ Lupus anticoagulant tests change from negative to positive over time?
