My Rheumy’s assumptions, exercise, fatigue, medication expectations + knitting!
I saw an excellent female Consultant Rheumatologist last week who was attentive, knowledgeable, engaged in a 2 way conversation with me & comprehensively answered my many questions. I liked her a lot & greatly respected her expertise - I have a brilliant Rheumatology Team.
However, before asking me what my lifestyle entailed she incorrectly ASSUMED that I did no exercise because I was so FATIGUED, & that she’d refer me to physio to be taught, saying that EXERCISE is the best aid for FATIGUE .
My orthopaedic file is huge, endless physio visits since the age of 14 (back injury doing gymnastics), spinal/shoulder surgery, other work related injuries, many spinal/neck problems + riddled with OA. I do physio most days as it’s effective & beneficial. Also, I’ve recently completed yet another Chronic Pain Clinic/IMPACT Course via MSK …. with Physios!
Biting my tongue, I politely explained that competitive sport/dancing, exercise & fitness had/is a big part of my life. I grew up with sporty parents & a fitness instructor sister.
It is something I have happily done, never had to force myself to do it, enjoy/ed it & is absolutely normal for me - NOT doing any is abnormal & not me at all. I have been practising Yoga for 35 years & swim regularly amongst other activities….But Lupus, its symptoms + FATIGUE are affecting everything, as it does….I do have rest days too, honest 😇
So to be told I need to exercise by a very nice lady Dr, who openly admitted she does none, did somewhat annoy me 🤨…..I want to be doing it & all my usual activities, so I knit instead, indoors, in the summer-time away from nasty Mr 🌞. (Paced, due to sore fingers/joints & bad back 😂).
Add in UV sensitivity & I’m affected all ways round as many of my hobbies, interests & activities are outdoors…I’m not a sunbather/worshipper & have always been very sun safe.
My normal regime includes high factor SPF all year round, checking UV Index, hat, appropriate clothing & sun avoidance as much as possible.
I still, however received the obligatory sun-safe chat as she wrongly ASSUMED I had no knowledge. I completely understand they have a moral duty to enforce such important matters but, asking the patient 1st would save an awful lot of time.
Having had so many adverse reactions to all the usual Lupus meds, my SLE has become uncontrolled due to not taking anything for it in a year.
I commenced Mycophenolate 4 weeks ago, fortunately no adverse reactions to date but not effective yet either. My Rheumatologist reassured me that it was safe to take despite me having some of the advisory warnings.
She explained it can take up to 4 months to start working & stressed that I must not be unrealistic with my EXPECTATIONS of it regarding FATIGUE , as there are no known Lupus specific drugs to treat FATIGUE.
Has anyone else been told this?
In her experience, she said patients generally, naturally start to actively do more as their symptoms, (but not fatigue) improve….🤞 for me & MMF 🙂
So at least my Hubby will be warm & cosy come winter in the tank-top I’ve knitted him! & I’ve had a bit of a (gentle) body ‘work-out’ as well as some mental agility following the pattern! Win, Win 🏆
~ 🙂 🌸 Happy Wednesday Everyone 🌸 🙂 ~
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Turquoise-1
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"she’d refer me to physio to be taught, saying that EXERCISE is the best aid for FATIGUE ."
Bit out of touch isn't she? They have realised that is isn't always and it is no longer to be used for ME/CFS as it can make patients worse, not better.
And actually - since there is no cure for any autoimmune disorder and fatigue is part of the autoimmune disease spectrum ...
These days, (in my recent experiences anyway), medical professionals all seem to be pushing exercise & (weight control) regardless of the condition/ailment/disorder/illness a person is suffering from.
I know what my capabilities are on both good & bad days…As busy as a 🐝 on good, 🛌 on bad! ….& “No,” ‘pacing doesn’t work for me at all.
I just wish they’d ask me 1st before assuming I don’t exercise.
Paradoxically for CFS/ME conditions it’s the getting started that’s the big hurdle. 👆But once you do???
With me if I have to walk to the shops/post office etc it really has to be planned the night before but has to be:
* with sunglasses 🕶️ (covers) even on cloudy days
*large 👒
*late afternoon with much lower UV light levels!
After a lot of positive self talk eg, “I will and can do this…”repeatedly…
I eventually get out of the house.
Once I start walking with the destination firmly fixed in my mind it seems self sustaining and self reinforcing 🤣👏👍 The achievement gets entered in my diary plus smiles from passers by as to my self talk, LOL!
Walking through any park makes me happy with tree 🌲 🌲and 🐦 💐🌸🌹🤣
Being carless I bus and walk everywhere. Have to.
It’s doing the housework that’s the problem but again as above. It’s the getting started…🤣😱
Maybe that rheumatologist was trying to explain that one way of helping with the horrible chronic fatigue associated with auto immune diseases is acceptance ? Careful movements rather than just complete rest does seem to be advised & often helps.
I find taking a step back from a lot what we have to deal with & not striving to deal with it all at once can often ease the way…….getting my head around the situation.
But of course what helps one person won’t help another….& each person’s acceptance of all sorts of symptoms is approached differently & I’m afraid quite often asking the patient a question doesn’t always get a 100% truthful answer.
Nope, she just plainly assumed I did not exercise 😂
She was quite direct, as I am so there was definitely no confusion in mis-communication & definitely no talk of, ‘acceptance.’
The appointment wasn’t long enough to get into any form of psychology & being a fully fledged Person-Centred Counsellor/Psychotherapist myself, I’d have known if that were the case. My hubby, (who has RA) was in there with me too so he heard it all.
I agree with you on taking a step back/dealing with everything all at once/ it’s a useful strategy - I break things down & deal with them methodically one by one so as not to be overwhelmed. By nature I’m a Theoretical Pragmatist (done the test many times)!
Trying to do 10 things at once isn’t very productive & yes, some patients perhaps wouldn’t tell the truth….but not me, I have no reason to lie.
Also, (as a retired Paramedic), I know as other medics do, from taking a patient’s basic observations (BP, pulse, listening to chest with 🩺), as well as looking at/listening to the patient & checking what meds they take can all quickly give an idea of a person’s general health. Add in blood/urine tests, ECG & SPO2 monitoring too for more in depth analysis 🧐 But…..
…..I look a picture of health & fitness, however I have many non-visible ailments which then conflicts with my near perfect basic obs …..
It’s a conundrum as much for us as it is the Doctors 🤔
Yes, I was told exactly the same thing by my previous Rheumy who like yours made an incorrect assumption and acted on that. Because I was 66 at the time I complained of fatigue, he assumed I was a couch potato and told me to do more exercise!😳 I was complaining because I was struggling to do the classes I’d been doing happily for years and had by this time had to give up swimming (due to recurring UTIs) and Scottish Country Dancing due to joint pain and fatigue, but was still doing Pilates, yoga and an aerobics class for mature ladies. He also offered to refer me to physio and I actually accepted because I used it to get help with my sacroiliac joint and dreadful balance.😉 But since that same Rheumy didn’t recognise my Lupus rash earlier this year allowing it to get to an advanced intolerably itchy stage I have changed to another Rheumy I had seen a few years before he came on the scene. So I’m much happier now, although the rash still hasn’t completely gone. 🙄
I love knitting and crochet and find it very therapeutic. I’m currently knitting a hat which is working out a bit too big for me so hubby will hopefully get the use of it when I’ve finished. I’ll knit a bit faster so I get more exercise!😆
Happy knitting and I hope the Mycophenolate kicks in sooner than expected. 🤞 Take care Turquoise. 🤗xx
You give a fine example of wrongly being put into a certain ‘box’ without them even asking about your lifestyle!
‘They’ don’t seem to understand how a patient can possibly enjoy being so active….you clearly were far from being a couch potato with all those activities.
I agree, physio most definitely does serve it’s purpose at times and can be so beneficial….I’m very familiar with my old, troublesome friend SI Joint 😣
Big ✔️ to the ‘good’ Rheumy, 👎 to the persistent rash & your suffering 🤗
There’ll be sparks flying off those knitting needles 🥵! ….
It’s amazing how many steps my Fitbit clocks up when I’m knitting, haha - so it’s clearly therapeutic exercise! Hooray 🥳
Thanks for your kind words Turquoise - we seem to have a lot in common including a troublesome SI joint. 🥴 Mine has been generally behaving itself for a while with just a few reminders it is there. I try to do exercises for it as well as my left shoulder every morning. If I could do them while speed knitting, I’d get a double workout!🤣 Well done clocking up so many steps whilst knitting. I don’t have a Fitbit so was blissfully unaware of that.😉 Take care. 🤗Xxxx
I always get told to go swimming, or failing that walk up and down the pool. I really dont think they understand fatigue. 1st drive to the pool. Take a break 2nd get undressed and into swimming costume, take a break, you get the picture drying my hair just fills me with dread. Let alone the rest of it.
Precisely!….You’ve described it so well 👏, thank you xx
It’s not the same as being tired, fatigue makes everything extra difficult & requires such a lot of effort just to do normal, everyday things. I never know when it’s going to strike either 😞
I say it feels like my power supply has been disconnected, my wires have been cut, someone has unplugged my plug top from the electric socket or my battery is flat!
Assumptions are always massively frustrating and reflect such a lack of insight. Have you ever tried Q10 supplements for the fatigue? My Rheum recommended them and they do seem to help a bit.
I'm so sorry you had such a frustrating experience. I do agree that having assumptions made about you can be very frustrating! Why not ask first?!
I think it can be very hard to communicate in the first place how debilitating fatigue is, or how frustrating it is when exercise you've been doing for ages becomes harder and harder due to the fatigue and there's nothing that seems to be helping, so for them to suggest more exercise without even asking what you already do is incredibly frustrating!
I have also been told the same thing about there being no known meds that can effectively treat the fatigue.
As a side note, I am very impressed to hear you knit, I would love to learn how to knit but I'm one of those people who wants to learn how to do everything and consequently finds it hard to pick one hobby and get started! 😆But I am a massive bookworm (hence the username of course!!!) and that takes plenty of my free time!
Love your reply- thank you 🙏 I really appreciate all you’ve said x
I learned to knit as a little girl, so much easier if there’s someone on hand to learn from. You Tube tutorials seem to be the modern ‘go to’ for learning many things, no such thing when I was a child!
Knowing how to correct any mistakes is a part of knitting which is as important as learning the stitches & following patterns; Hints & tips I picked up from my Mum & Nannas sat right by my side.
Reading is a fab pastime & a good distraction from hobby selecting!
It certainly exercises one’s fingers, joints, tendons and arm muscles keeping them flexible and sort of preventing stiffness but it won’t improve or increase cardiovascular fitness because large muscle groups in the legs are not actually moving assuming one normally knits sitting comfortably on a sofa rather than running?🤣
Experts tell me that regular brisk walking making you gently puffed does it. With me doing the housework, laundry, washing up, vacuuming, gardening, cleaning windows, mopping etc is ENOUGH for me rather than gym visiting in a leotard!🤣👆doing that silly treadmill 🤣.
I totally agree with you - I don't do anything like running, aerobics, swimming etc, but I do almost all of the housework (although my husband keeps telling me off for doing too much ironically!) I can't drive, so I have to walk and/or take public transport. I used to knit & crochet until a few months ago, but was finding it a bit tricky with my hands - I need to look into crochet hooks with ergonomic handles! All my hobbies are hand-based annoyingly.
My rheumatologist didn't actually mention exercise, but it comes up a lot regarding the depression I'm treated for by the community mental health services. I am slightly underweight and have a history of over-exercising due to an eating disorder, so I have to be prepared for those kinds of recommendations. I think quite often they just have a list of recommendations they reel off without looking at the individual person, what they already do and what's appropriate for their personal needs.
reading all of these replies, makes me sad in a way, I have a wonderful rheumy consultant, who is like a good friend, who doesn't preach to me at all, she knows that me, having this awful disease for over 30 years can probably teach her a few things about my condition, so yes, I am very lucky x
That’s a nice story to hear, you sound like you have great rapport & a good understanding of each other built up over many years.
I wonder how many others have had the same Rheumatologist for so long?
My husband (who has RA) & I both feel very well cared for by the Rheumatology Hospital we go to, the team of staff there are excellent. The department is extremely well run & they do give 1st class service, so it’s definitely not so bad.
What a great thread T1 🤗I think that exercise is on the top of the agenda for docs as generally it's people who could do with a bit end up in the hospital or in front of GPS complaining about symptoms when maybe they could 'do a bit more exercise' .
Personally I go to appts in a wheelchair so I never get questioned about it. I'm unable to go for brisk walks..can't go to a gym coz of the lights! 😹
However my home is my gym..I've got UV film on all the windows..I live in a bungalow so I can briskly walk around n I occasionally do couple of pushups on the wall. All household chores are a victory!! I ask Alexa for some tunes and I dance 💃Best form of exercise as far as I'm concerned for cardiovascular..it's mood lifting too. When I can't stand up n do it I do it sitting down and it's just as good.
I was interested in hula hooping you've talked about recently but after a week of deep burning in my hip n a demo from my daughter who's got one it's quite possible I'd end up in an ambulance!! 😹💜🌈🦋Xx
Oh yes, you’re speaking my language - Nothing like a good dance around to get the heart & lungs thumping! … 💓🫁💃🏻
A few good tunes & I’m spinning my Hula ⭕️ like a ‘Whirling Dervish!’ 🌀
My dog tries to attack it though so it’s now covered in Patterdale Terrier bite marks! 😃🐶😬 …..The hoops I have are weighted so even if you weren’t up to standing to ‘prance’ about, I suppose you could lift them up & down as weights 🏋️♀️! ….Definitely don’t want you ending up in an 🚑….
You’re doing what you can in the best way you can & that’s more than OK, I’m impressed with your home gym & wall push ups! Go girl 💪…Here’s a well-earned medal for the household chores ~🏅~
I live in a bungalow too so I’ll take your advice for my not so good days & try briskly walking around each room …. 🐕🦺 at my heels!
Nodded my head in agreement with your opening paragraph - saw it quite often when attending patients in my Ambulance Service Days.
Thanks so much for your jolly reply which is so full of positivity 🌻💝🌼
Excellent find, thank you 😊 Just the kind of paper I like to read; it covers so many issues familiar to me.
Interestingly, of the 31 items mentioned under sub-title Definitions , I have done/do 23 of them but my HRQoL has dramatically decreased as SLE worsens! 😂.
Doing those things doesn’t prevent me having a flare - Not a chance of me getting to the gym to swim & use the hydrotherapy pool, let alone doing any Yoga (or even stretches), that I’ve been doing for 35 years! I’d need to be able to stand up for starters & that’s barely doable during a severe flare!
What?!, No knitting? Tut, tut, tut 🤨, get another research group set up at once BMJ & include all those crafts & hobbies many of us AID sufferers enjoy so much! 😃….
….Especially if we’re UV sensitive, mega fatigued & have to find alternative activities indoors ~ 👩🏻🎨🧶🪡🧵🎹🎸💿📚📝🔭💻👩🏻🍳 ~
I was nodding my head in agreement with your comments about common sense & many of us trying hard to do these things - it’s hardly rocket science.
I could write an article of my own thoughts, opinions & experiences (personally & professionally), based on what I’ve read in in this BMJ one, but I suppose any research is positive 🙃.
Overall though, I have read many good BMJ articles and do highly rate their website 👍.
Earlier this year I participated in a similar study organised by a Lupus organisation but it’d be remiss of me to broadcast my true opinions of it on here 🤐
Thank you so much for thinking of me & sharing it x 🌸 x
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Sun exposure, first time I have been effected.
Once again, lost without diagnosis (Raynauds, chilblains, fatigue and aches all questioned) 
