Hi all - I've just received my rheumatology review letter and am really down and very tearful. I feel helpless and hopeless suddenly. I have Lupus SLE (diagnosed this Feb but Rheumy thinks I've had it since birth) and the plan is for me to continue on Methotrexate and now folic acid 6 days a week. I have Nifedipine too which has been very useful with my dreadful Raynauds. I can see my Rheumy has written the letter very quickly as was on leave for some time from the end of the day I saw him in his clinic. But I have put all my faith in him and I guess felt he would make everything better. Ridiculous I know. I'm so positive usually (what can you do??!) but the pain and gnarled look in all my joints (which has been labelled as RA, synovitis and now back to OA) is really getting me down, plus my hair falling out, constant thirst, and the ever present exhaustion. I feel (and now walk ad move!) like an older woman and it's so depressing as i'm very young at heart. Was nearly in tears at the weekend walking for a little while in London - the pain in my hips was unbearable and painkillers weren't helping. On a positive note, which I presume is due to the Metho, my hands aren't as red and inflamed all the time as they used to be as of approx three weeks ago which is great - but I'm losing the use of my hands and this is so depressing. They hurt so much. He said they can inject the nodules which are painfully affecting my thumb and index finger "if you become unable to use them". How awful to hear that. But I can no longer open a door with my left hand and so many other every day things. I type a lot too in my job. I'm such an independent person and I've plummeted on reading this cold letter. I'm not great at describing my issues at the reviews and it seems they forget everything you told them before, and the meds you're on. I know I should be so grateful the SLE isn't affecting my organs (but have AF and aortic regurgitation since prior diagnosis). Frothy wee with some blood for years too but Rheumy didn't seem to mind 4 months ago and didn't test this time - should I worry?? The letter isn't correct on my current medication and I guess I just feel they are as overworked and unable to provide anything more than a 15 mins slot and bash out a letter at the end of it. I know it's the same for so many of you - I read this sort of thing a lot. Poor on it's knees NHS. It's so hard to deal with when you don't have anyone around who understands... But you do - so I've put myself out there... and hope I don't sound too soppy. I've not slept well for weeks and weeks due to the heat and pain and I'm sure it's hitting you all too. Hope you're all doing alright and thanks so much for listening. Over and out. D
This is a call out for. Do you feel down after yo... - LUPUS UK
This is a call out for. Do you feel down after your 3 month rheumatology review for Lupus?
Hi DJ, I am so sorry you are having such a hard time just now. This weather, particularly down south is causing so many problems for Lupus patients, I have literally been camped out in my lounge in the dark with a portable air conditioner, and I still hurt.
To your pain, pain that is constant, drags you down, and everyone deals with it in their own way, it took me a long time to manage it, I have terrible back and hip pain, and with lupus kidney involvement, I can only share what I do, I cannot take heavy duty pain killers due to stomach and bowel problems, so I manage it with ice, in supportive wrist bands that take frozen gel packs. I have also been known to stuff my hands in my freezer! For my back, my Osteopath has been a life saver, she uses TENS, Acupuncture and deep tissue massage, she is a sports therapist, she has got me more mobile. I also once a week have a back massage with a normal therapist, it really does help me.
To your summary letter, you know back a few years now, I used to get upset by them, the long list of issues is miserable, and sometimes having the reality stare you in the face in black and white is hard to take, combine that with some being very short and without in my perception, emotion, very hard to take, for me it got easier when I realised that the piece of paper summary whilst important, was just that, a summary as my consultant sees it, what mattered more was what she is doing for me. Missing information in summaries is common, very common, so what I do, is highlight the points I feel need correcting or updating, and take them with me to my next consult, I always ask my GP to correct their records, particularly on medications and dosages, things you can and IMO should tackle.
The frothy urine and blood, this can be lupus involvement, but if you have had regular bloods, they would have looked at your kidney function, but that does not mean you should ignore this, my renal involvement is due to IGA Nephropathy, so I would advise you see your GP and ask him to investigate this further, you can pick up the control on this point.
You are new to all of this DJ, and part of the process of this complex disease is finding some form of acceptance, without it, you are in a constant inner turmoil, and fighting an unseen monster that will repay your stress with more pain, I really hope you don't think I am being uncaring, I absolutely get it, have been where you are, and to obtain peace in your mind, is accepting that this, for now is your new normal, medications can and do improve overall well being. Sleep hygiene is key, I have a terrible time with sleep, am post menopausal and suffer cluster headaches on top of my other myriad of Lupus symptoms, but I do all that I can to rest, sleep or even dozing will become your best friend, so please try to get on top of this aspect if you can.
Your not alone, everyone of us here, has a story to tell, but most of all, we understand and care.
Hey Karen - thanks so very much for your wonderful response. I was pretty down there for a while. I did a little exercise, had a nutritious meal and then saw a video by a Rheumatologist on Fatigue. It was very helpful. I've read The lupus Book (well, thumbed through - I'm a busy gal workwise which is difficult and need to do nothing as much as possible afterwards!) and most of the great articles etc on Lupus UK but am always learning something new. I too have a pretty useless and painful gut. It either doesn't work or over works (and then some) with great pain and embarrassment!
I thought I had accepted it, the diagnosis - but, as ever, the letter set me off after these hard weeks we've all had with the weather - relentless eh. The last lettter was quite different in tone and content - and I didn't feel supported by it whereas I really did with the first. We're only human, as are our Docs so I've stomached it now.. it's not a letter from a therapist after all. I don't sleep well at all - never have but it's pretty bad, even with sleep supplements... The video I watched youtube.com/watch?v=EbMYCn-... talked about research done on Lupus bod's whilst sleeping and it mentioned sleep apnoea which I have and my mother had... I've always had it - I know this since I was taped by an ex when I was 20! I wonder if I have Fibromyalgia too. It would fit. My ankles, hips, wrists, feet, hands, neck and back are in such as state. I did start having acupuncture and massage but I've had to reduce my hours recently as couldn't manage... so I really cannot afford it - not and pay the mortgage and eat. It did help though. I'm post menopausal too - 55 now.. and I think the onset really brought the lupus out a lot more - that and a new job which nearly killed me stress-wise. I've jsut buried my health issues all my life , managing it in the way I was brought up ie self care with ultra healthy life - ignoring.....and a ton of sleep! Anyway, I'm blathering and need to turn the light off... But I do hope you can see the light of day again soon Karen - I've lived like a mole all my life - and now I understand why! Thanks and thanks again.. and wishing you the best of health you can have. Deb
Repetitive routines most definitely make me tired, need to change themHi Deb. I can’t really add to what Karen has said but I did just want to agree about how upsetting clinical letters can be for us.
Once when I was still diagnosed with RA - my then rheum said in his letter to my GP - “she complains of fatigue and yet I see her in several professional contexts. I do hope she enjoys this volunteering work..” and later in same letter he said I was wanting to come off Methotrexate injections and he guessed this was because I hoped this would help me meet the criteria for biologics - “a bad plan” in his opinion. I recall writing an email to my GPs absolutely frothing about this! All that then happened was that they wrote back telling me to calm down - most clinical letters they write could sound like this when taken out of context. After that they wriggled out of copying clinical letters for me!
Then earlier this year I had a neurologist do same as yours and dash off a letter packed with inaccuracies about me, recommending drugs I’d already failed to tolerate for pain I hadn’t described and saying she was concerned I have “heightened health awareness”. Seven months on and I’m still furious - and it made me terribly depressed for a while too.
I think doctors need part of their training to be in how they write clinical letters - I’m guessing lots of them are not that good with words. Add dictation in and the results can read so badly for us? Especially if they cross into personal stuff which has no relevance in this context.
My present rheum writes excellent letters just simple and straight forward, non judgemental, containing all the relevant info and no asides or back chat. But I’ve only seen her once over a year ago and she phoned me earlier this year at my request and asked “so who put you on this much Mycophenolate then?” “You did!” I replied. Which seemed to render her nonplussed!
You have lots of issues that I don’t share in terms of symptoms and pain. But having previously been diagnosed with RA, now Sjögren’s, OA, small fibre neuropathy and Raynaud’s - I can relate to some of it. What I have noticed is that things change over time.
But giving yourself a proper break each day is very important and hats off to you for working. I seem to spend half my life in bed resting or sleeping these days. Life is slipping past me far too fast! X
Thanks so much Twitchy - really helped. Those comments in your letters are hugely passive aggressive and certainly highly unprofessional. I had the same from the Registrar previously. I was beyond angry! Working is v hard but I have to carry on - this job isn’t ideal for what ails us but I couldn’t risk losing my income - I’ll know when it’s time perhaps although, like so many on here, I keep going against my better judgement. Push push push.. I hope you’re managing some level of independence and fun in life... By the way, do you get restless leg or similar??Hence your moniker? I get terrible tingling in my feet and lower legs at night - v painful. Worse when can’t sleep.. or wake up in middle of night (er like always). Rheumy mentioned having a test for the smaller er whatevers... neuro whatnots... had the larger ones checked and all good. Get in my hands to bit that’s with much redness, heat and swelling but some improvement in past month. OK well hope I can be of help to you one day.. All the very best to you Twitchy x
Oh yes I completely sympathise about clinic letters. A good accurate sympathetic one that acknowledges and validates our pain and preferably our great bravery at coping with such a rubbish disease is probably better for our physical and mental health than most drugs they can offer us. Sadly those letters are few and far between. I have learnt to trust that my current rheumy letters will be ok, short and factual, occasional errors (once he wrote ‘examination was unremarkable’ - well yes because he didn’t do one 🙄😂) but having had a letter from a neurologist that completely undermined my suffering and the disease and was totally inaccurate I wait in nervous anticipation for letters from new consultants. I even emailed my new immunologist straight after to clarify what he’d said so he couldn’t then write something completely different as the neurologist did.
I suppose from their point of view, seeing and treating us is the priority and we are a very small part of their day, the letter even less so, whereas for us we set so much store on these appointments and letters that they are a huge part of our lives. As the disease consumes so much of us, clinic letters can feel in direct judgment of who we are rather than just of our disease. If they don’t meet our expectations and validate us then it’s sometimes crushingly disappointing isn’t it?
I was so upset about the neurologists letter but my rheumy said we all know the truth and to focus on getting better, one of my GPs actually laughed and said they’ve just got it wrong, none of us believe it and another GP (when I kept going on it and they obviously got fed up!) said that none of the doctors even really read the clinic letters unless they need to look at meds etc and that symptoms of people with lupus are often misunderstood and drs will get it wrong it sometimes for most of us. The good ones will acknowledge and apologise.
Sounds like you’re having a horrible time anyway with all the pain and flare up. Hope things get a lot better soon. If it cheers you up I had a letter from an autonomic dysfunction neurologist recently, very fair and factual but he wrote 2 words I didn’t understand so had to google, she has ‘increased sudomotor reflex’ and hypostomia. I had to laugh when I looked them up - basically he was saying I’m sweaty with an abnormally small mouth!! Neither of which I was aware of... 😬😂
X
Hey Melba1 - that was so helpful. I totally agree with you - I know we are but a minuscule (and clearly forgettable) person in their lives, they have such huge case loads it puts mine into perspective and then some!! - and, yes, after 3-4mths of waiting, what they say and write afterwards means so very much. I’ll get better at swallowing it.. and to be fair his first letter on diagnosis was amazing in every way. I’ll hang on to that in my mind. And as for the disease, not much I can say..(she says having blathered the previous day) - it’s so all consuming these days. This site is essential to me now - and it’s thanks to Paul at Lupus UK that I went on it after calling them one day whilst off sick a few months back. Thanks again so much for responding - here if you ever need an ear. X
You’re welcome! Yes passive aggressive is exactly it. I’ve just posted an add on inspired by your post actually - only mine is regarding PIP claims and the significance of clinical letters.
Oh yes that’s what is - my HU name - a Moniker!! I have never known what these are called - thanks! No I don’t think I have RLS but I do have resting tremors and small fibre neuropathy everywhere. And a twitch and vibration which started in my toes of right foot 5 years ago and has now spread to all my extremities. Ugh! X
Yikes - poor you! Gawd. Xx
Maybe we need to publish all our letters?! So new drs can learn from the great, good, bad and shocking! Some of yours just sound so unprofessional, I’m sure they shouldn’t be commenting on your PhD plans or your charity work - I do hope she enjoys this voluntary work?! (With the implication your fatigue can’t be that bad then?? 😡)
Although awful to know lots of us similarly damaged by thoughtless and inaccurate letters it is, in a sad way, quite comforting. I very much think they don’t mean to damage us in this way but maybe it’s just another piece of gentle education we can shoehorn subtly into our appointments? I actually had a great immunologist appointment the other week where he said normally he’d write a summary for all the drs after all the test results but this time he wanted to sit with me and agree what were the things I found important for people managing my health to know and what I needed him to write in his letter to explain for my medical records (simply!) about my immunodeficiency and particular version of lupus so I can just produce the letter and don’t have to go over it every time I’m hospitalised with every single dr I see!
I think maybe we have to say what we want in a letter? Although must admit I wouldn’t be brave enough with my rheumy. I sent the neurologist a letter to myself from him containing what I thought would be a suitable letter of correction and apology. He took absolutely no notice but it was very therapeutic and helped me see the amusing side rather than just feeling hurt and cross
X
Mitral Valve Regurgitation anyone??
Muscle & joint pains
Finally been retired on ill health aged 43!!! 
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