I would like to say I try to be an optimist but it has been hard lately.....
Lately I'm just sooo cold, worn, in pain, arthralgias, fatigue, raynaud's, with blurred vision, muscle weakness etc. I can't control my temperature, my lupus symptoms at all, my seizures make me out of sorts.
You fellow lupies have been great, and I do appreciate your support. But today, my epilepsy nurse was telling me that I must just be anxious and getting ahead of myself after two 'major' diagnoses. I said but I haven't felt this bad for years, I am stone cold, no amount of heat can fix, I'm blue, I am in literal agony and it's exacerbated by my lamotrigine. Also had to up my dose of hcq again and that sets off my seizures again. A big part of me wants to scrap it all. And just go on like how I was coping before. Not ideal, I know but seems better than the combo of meds I'm on atm that is like waging war on each other who both rheumi and neuro refuse to amend or reconsider others.
I am no stranger to illness, but each time I put in the effort with med professionals it backfires and ends up making me appear 'anxious' or 'hysterical'. I have been in and out of hospital since I was child for lupus, and the related complications, gangrene, sepsis, legionnaires, TB, etc from having a bad immune system.
I am too tired to even fight my cause rn with managing work the best I can, and trying to just stay warm enough each day. I had 'baseline bloods' yesterday after a 7 week wait, and I was like, seriously, all this time and your doing the basics. Hopefully they'll give some indication that things aren't right, but I don't hold on to hope.
I just have to stumble on by, until I get brought in my ambulance, when they find me passed out on some embankment and may actually deem me 'acutely unwell'
Stay safe lupies, sorry for the vent.
Lottie
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LottieLou96
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❤️ don't know what to say but I think most of us have been there at some point. I do wonder why some people become nurses/doctors when they don't seem to give a damn about patients. take care of yourself.
I don't usually vent about me, I'd rather vent about the lack of proper primary care in the UK. It's dying, and it's all just about privatized in Scotland.
So sorry to read this. Wish I could help. I'm the queen of venting - makes me feel a little bit better - so vent away to me any time you like. You're not on your own. Take care.
I am so very sorry LottieLou I feel so upset and angry reading your post. Why the medics are not caring for you, trying to heal and support you is beyond me. I do not have half your medical issues and I get demoralised and despairing on a regular basis. Could you afford a private consultation at a Centre of Excellence? Just to give you an thorough examination to ascertain what is going on with your poor body? I send you huge Cwtches and the hope of a better tomorrow xxx
I'm sure you have a great deal on your plate as well. We all do sadly. One day this year I will break even and have the 10,000 pounds the NHS is wanting off me, with a debt collector calling everyday like clockwork demanding I do or court. That is whilst working for NHS day and night to finance this debt. Then I would consider private consultations, esp. as little young me use to plead my family to take me to one when I first got lupus, they look sooo good!.
I can't complain in my younger, younger years my father had private health insurance for the family with his job, and in Yorkshire, at least where we lived, just mentioning private healthcare and you got care and treatment instantly like waving a magic wand. Those were good old days....
You're right for a thorough examination, alot of primary care or specialists don't even both examining you. In ED, I know we get the wrap, but we do our best and are a working part of the NHS and are not privatized. Each patient gets a full MOT and I do all sorts of examinations to ensure nothing goes amiss.
My Neurologist has never done a neuro exam on me, my rheumatologist has never done the basic examinations for cardio/resp/abdo/MSK.
They just do the odd scan and bloods now to determine things which is a really rubbish way. One has to use investigations to reinforce the hypothesis and explain the clinical symptoms and signs. Not the other way round.
For e.g.
A lad comes in with brown foul smelling vomit and abdo pain. The X-ray done would suggest no obstruction, yet you can't disregard that he's fecal vomiting and thus likely obstructed. Someones BP is 260 systolic, and HR 170, they have a scan which shows no adrenal problems, yet on autopsy you find a small pheochromocytoma.
Scans/bloods/investigations don't give as much info often as a good history and examination will or at least direct you to suitable differentials to rule out one by one. In short GPs and other specialists etc NEED to see people. And would be nice to have more rheumatologists in the NHS full time, not one day a week and then four days in their private clinic. And they are the only specialty that works only day hrs and that doesn't work weekends. I feel that rheumatology may benefit one day from a small ward area, to actually give dedicated treatment to.
I’m in Edinburgh. I requested another rheumatologist as the first one didn’t want to give me a diagnosis but finally after 3 years I got another rheumatologist and I got my diagnosis. I still get mad with them as I knew I had lupus as I have a background of Dentistry from my country and when I had symptoms I knew it but I felt almost screaming because despite of being specialist they first rheumatologist didn’t want to do his job properly. Like you I get cold, my full skin is always cold but I have erythromelalgia in my hands and no Raynaud’s. A big hug 🤗
But my rheumi like yourself is in Edinburgh, where I use to work in WGH. It took less than a minute on my first consult there for her to tell me I had SLE. This was for treatment sake I did this.... As I first was diagnosed with congenital/hereditary systemic Chilblain lupus all the way back in 2011. Bumpy ride since, hence the widespread lupus brain damage, heart problems and multi organ issues that have been left untreated for many yrs till late.
Thanks for the hugs 🤗🤗❣️
Hope you feel better for the vent at least and you will on the grand national today and pay off that debt 😉
Are you sure it's Lupus? My friend has cancer of the endocrine system. Several tumors in the liver, spleen, pancreas and kidney. When she was in the midst of them growing it's the one thing I can remember is that she could never get warm. She would wear a padded coat indoors and out in all weather, heater on full in the car even in the summer. She had radical treatment tumor clipping treatment at the Royal Free in London and is in remission at the moment and no longer freezing cold all the time as the tumors have shrunk down. Don't want to worry you but good to check if you're on the right path or not??
Sorry to hear about your friend dg70 and so glad to hear your friend is in remission 💜,
I can't even manage at emerging from being frozen rn, despite being in two coats, two duvets and electric blanket and a heater on full blast. It's just hit a point for me where nothing is working.
It does seem similar in nature to the first time I was diagnosed with lupus, nearly 11yrs ago, but it's an avenue I haven't explored and wouldn't even know how to as even basic things like bloods or urine tests are rarely available to me. With the pain in my kidneys especially and my swollen liver and spleen, the rib lesions and back pain with easy fractures it has crossed my mind, that more could be going on. But again, when your already labelled a 'crazy' or "stressed' and they won't even trial different meds or see me in person when I'm in agony, I don't know how I could even get them to contemplate the idea.
I know your not trying to worry me but your trying to be honest. Thankyou for that
My friend has a full body mri every six months. Privately i guess may be costly. There are walk in fixed price mri in leeds london and birmingham. Used to be one at kings cross i remember. No referral needed. You may get a gp nhs one but probably not the way things are. A full body would show anything up or put your mind at rest for good. 🤔 Sounds like you need to get your stress levels down though it just exacerbates everything. Not sure if you said you were in london but a walk along the thames, sit on a bench always did me the world of good if you find a quieter spot.
Haha, I'm up north in Scotland. How I wish I still lived in Vietnam haha, never can be cold there. I am a bit stressed but more I just can't get myself warm whatever I do, I had a short walk out the home but regretting the Raynaud's in full force. I'm just too cold to even sleep and it gives you chest pain being too cold for too long... But I have my CBT companion and some other helpful things, I look and research alot, and if my mind decides to be clear for a moment and not foggy, I may take a hand at poetry. The right words in the correct sequence can utter a million thoughts, and be a wellspring of emotions that can be rationalised and offloaded to create something of beauty. Well it would haha, if I was any good at it. 😅😅
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