Around 2 years ago I told my Rheumy that I was really struggling with fatigue and finding the 3 classes I was doing weekly at Bannatynes becoming harder and harder to do. They had always been challenging, but I had coped well with them and felt the better for them. Now I was really struggling with them and was also unable to walk the 3 miles hubby and I used to do most days. Rheumy’s answer - do more exercise! 😳 Well he was the Rheumy who didn’t recognise my Lupus rash earlier this year which Dermy later confirmed was a classic Lupus rash! 🤷🏼♀️
Anyway, I found the ideal solution in the Exercise Block above! I can now honestly say that I walk twice around the block every day. 🤣
If anybody has any other exercise tips to pass on please share.😉
Hoping you are all keeping as well as can be.
Spotty 💕🤗 xx
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We've been asked to bring examples - good or bad. Can't find anything about exercise on line which is my only option. I'm going to be racist though - the ones I've found from Versusarthritis and an NHS Trust have images of ethnic minorities as examples of patients. It is next to unknown in African and Asian populations ...
Isn’t that weird? It sounds more a case of them trying to be politically correct than you being racist. 🤷🏼♀️ I can’t think of any other explanation.
When I was first diagnosed with SLE 11 years ago I asked a physio what exercise I should do. She recommended swimming, tai chi, yoga and Pilates. So I joined Bannatynes which offered all of these under their membership fee, but one by one I’ve had to drop out of various classes because of health issues. The Aquacise and swimming I had to give up years ago because of recurring UTIs, and Body Balance which is a combination of Tai Chi, yoga and Pilates became too challenging for me when my fatigue got really bad 2 years ago. Then Pilates and yoga became rather challenging with my arthritic shoulder making certain poses excruciating and eventually impossible. But GP gave me steroid injection into the collar bone/shoulder joint (forget the correct name for it) in March and it is MUCH better now.👏🏻 So hopefully when I return to Bannatynes next month I’ll manage most of my classes again. 🙏🏻
I hope you are keeping as well as you can be and I hope your virtual focus group meeting goes well. I’d love to hear how it goes. Take care. Xx
I loved the offer at Bannatynes too but only did aqua every day Mon-Fri, Pilates and Iyengha yoga once I could move after aqua! This was in the days of no pred! Missed it so much when I moved here - but started aqua again last autumn, once a week, rather older now so it is quite hard work but I wish there were more. Expensive though. People walk up mountains here for exercise - it is free!
Yes I really miss Aquacise too, but no chance of going back to it with my recurring UTIs and atrophying kidney causing problems. I am off the prophylactic antibiotic because Nitrofurontoin caused a liver problem and most of the rest I’m either allergic to or have a resistance to. I’ve only 2 more I can use, Ciprofloxacin and one other my GP said would have to be administered by drip in hospital, so I need to be even more careful not to pick up a UTI from a pool or suchlike.
Hubby and I used to hill walk a lot but that has stopped at present too due to one or both of us having something that prevents it (hip bursitis, bunion, fatigue to name a few) as well as getting older as you say. I think I pay £35 per month at Bannatynes which when many yoga classes held at other venues charge £8 -£10 per class isn’t a bad price at all and of course you have all the other facilities, most of which I can’t use now.
Enjoy your classes Pro and most of all have fun. Xx
Oh you poor thing. Swollen feet are so painful and debilitating, I’m so sorry to hear you are suffering that.😩 My fatigue has been the main reason for me struggling with exercise as well as a very painful left shoulder which made that arm pretty well unusable for many months until my GP gave me a steroid injection into the offending joint in March and things have greatly improved since then. 👏🏻 Now with only 2 weeks left of my third course of Prednisolone this year, my fatigue is beginning to lift (long may it last🙏🏻) so I have a little more energy at long last. 👍🏻 I also started to wear flight support socks to help prevent swollen ankles that I’m very prone to whilst taking Pred but they’d be too tight for your poor feet. I hope things begins to improve for you soon and that you are able to accompany me around the block. 😉 Take care JCZW. 🤗xx
I think you’ve found the perfect solution there! Fantastic idea 🏃🏼♀️
My way is to do what I can, when I can depending how I’m feeling….NOT how I’d like it to be at all! Which really, really frustrates me; I’ve had to learn to modify & adapt every type of exercise I’ve been doing for many, many years.
Like you say, shorter walks may be all you can manage, but they are better than non at all.
I disagree with your Rheumy regarding doing more exercise, which can be counter productive.
I’ve just completed a Chronic Pain Course with a multi-disciplinary team, but mainly physios & psychologists who don’t advocate doing more than you’re able to. Obviously exercise is good for many reasons but you’re your best coach xx
Couldn’t swim, walk the dog or even manage basic housework yesterday nor today due to awful flare; Other times I’ll do loads in a day, several days/weeks in a row, then 💥bam💥, wiped out for days. Currently feel like my power supply has been disconnected & like a limp lettuce….
Pacing doesn’t work for me at all, I simply go with how I’m feeling, push myself to a degree when I’m flagging because sometimes ‘it’ eases off. Others see me at the gym/pool & have no idea what my bad days are like as I look perfectly fit & healthy 🙃
I find Metatone Tonic helps to some extent as does Feroglobin Plus with Ginseng, (it’s more expensive than the regular ‘Gentle Iron one), or Floradix with magnesium (there are various Floradix).
Kind regards to you & warm, supporting wishes coming your way 🤗
I do the same as you, let my body tell me what I can and can’t do and just push that little extra in case I’m capable of doing more than I thought I could. I soon find out if I’m wrong.😉
Yes, totally agree it is VERY frustrating when we have to curb our exercise due to our ailments. I haven’t been able to do Aquacise, swim or use the jacuzzi at Bannatynes for years due to recurring UTIs and even waterproof swimwear for incontinence allowed water seepage so didn’t work either.☹️ SO disappointing. I used to love that exercise so really miss it. My exercise level has fallen to almost zero this year due to all the flares, effects of Prednisolone etc and so Bannatynes kindly froze my membership for 6 months until I’m no longer immunosuppressed and have a little more energy. I’m relieved and very happy to say the fatigue has begun to lift and I’m having more energy which is just as well when my membership is activated again next month. So when the garden is in shade I’ve been busy out there and also getting some indoor jobs done that have been neglected for far too long.
I’ve asked for, and got, a different Rheumy now who I’d seen twice before in 2018 and she is much better. I’m praying my Lupus will go back into remission once I finish this latest course of Pred to avoid having to start Methotrexate if the rash comes back. Let sleeping wolves lie!😆
Thanks for the tips about the Tonics. I could do with some myself. Can’t recall if I ever told you I asked my GP for the Dermavate scalp treatment you recommmended. He prescribed it and what a difference that made. Thanks so much for all your advice and experiences Turquoise. I hope your power supply is turned back on very soon.🙏🏻 In the meantime you could always join me for a saunter around the block! 😆 Thanks for your very kind wishes. Take care. 🤗xx
There you go - adaptable, versatile & making good use of your time to do other things which get neglected for various reasons 👩🏻🌾 🌻🏡
I’ve learned a lot from you (& others on here), so the thanks are reciprocated.
Did you start on Mycophenolate and has it been effective in any way? I’m pending it as diagnosed with a stomach ulcer last week (caused by 30+ years of NSAIDs for several orthopaedic probs), & recent removal of Acinitic Keratoses (pre cancerous) from scalp. Gastrointestinal pain & risk of skin cancer are side effects listed for Mycophenolate, so the Lupus/Rheum Nurse who did my counselling for it this week has got to check with Consultant Rheumatologist before I can be prescribed it.
Fatigue is my enemy as it stops me in my tracks. Whereas the orthopaedic pain I’m riddled with, alongside SLE joint pain/muscle weakness can be managed to some degree which allows me to still exercise & do some normal, everyday stuff… (incapacitates me sometimes though 😩!).
We could lean on each other as we hobbled around the block 🤝
I never started the Mycophenolate the old Rheumy prescribed. I had severe reservations about it having had a melanoma when I was younger and other problems I thought it would exacerbate judging by the info leaflet he gave me. When I saw Dr D, the other Rheumy, she said she agreed we should wait to see if this course of Pred does the job on its own especially as I feel so much better now than I have done in about 2 years. She read from her computer that the Dermy had recommended I start Methotrexate for the summer months if the Pred doesn’t work this time, which the old Rheumy never told me! Dr D said she prefers it to Mycophenolate herself. She’s arranged a dexa scan for me on 27th and has told me to drink 1 pint semi-skimmed milk per day and take 1,000 units of Vit D3. I see her again in 2 months time unless anything untoward happens prior to that. I feel so much happier now and ma praying the Lupus wolf stays down.
I had terrible gastro pain on my last course of Pred. GP prescribed Esomeprozole which has made a huge difference. Omeprozole didn’t even touch it. This course of Pred is gastro-resistant which has also made a big difference. Have you tried Esomeprozole? I’m so sorry to hear what you are suffering at present and hope it can be sorted out without any further side effects.
I agree fatigue is such a life-spoiler. I had it badly for 2 years and got so frustrated and depressed with it too. It was like wading through syrup with every move I made. Horrendous. I really hope you get some respite from it soon and that the Rheumy is able to help with the other aspects of Lupus. But never hesitate to ask for a second opinion if you are unsure of anything. I’m so glad I did.
Take care and let me know when you are ready for the hobble around the block! 😆 We’ll get there. Xx
BIG sigh at the lack of communication! Dr D sounds much better.
Omeperazole & Lansoprazole gave me excruciating abdo pains, can tolerate Pantoprazole but not tried Esomeprozole (thanks for that x).
Stopped Naproxen (NSAID) March 23 due to increasing gut pain which didn’t respond to increased Pantoprazole. Stopped PPI (Pantoprazole) too as replacement pain relief, Nefopam (which isn’t particularly effective), isn’t an NSAID so doesn’t require PPI cover. I take paracetamol too & have Tramadol when required even though it plays havoc with my bowels.
Back on double dose Pantoprazole for approx 3 months until newly discovered stomach ulcer hopefully heals (further endoscopy in 8 weeks).
On the whole the Rheumatology Hospital we go to is very good, Hubby is really well looked after for his RA by them. They’re just over subscribed & under strain….mind you, they are a bit archaic in that they ‘only’ work Mon - Fri, 9am - 5pm. Weekends, earlier starts & later finishes would greatly reduce the waiting lists for clinic appointments; Other areas of NHS medicine do this so maybe it will happen in the future.
Many thanks for your kind, supportive words plus suggestions and I really hope you stay as well as you can x 💐 x
… Ps 🥾🥾, 🦯, 🚶🏻♀️ at the ready! (Just need a new body 😃) …
I was prescribed Naproxen by a young registrar, in our GP practice, for severe back pain several years ago and although it really helped with the pain I began to feel ill within a few days. On looking at the data sheet that came with Naproxen hubby discovered you shouldn’t be taking it if you have SLE. So I’ve never touched it again. I take paracetamol too but have never tried Tramadol. Many drugs seem to constipate me so I am forever eating bran and other high fibre foods. I’ve also found Holland & Barrett colon cleanse tablets work well for me. I hope the Pantoprazole helps your ulcer to heal.🙏🏻
Good to hear your Rheumatology look after you and your hubby so well, when you get to see them.😉 I think ours only work Mon- Frid too. Maybe its a Rheumy thing.🤷🏼♀️
Thank you too for your good wishes and support. If we could only go to a body repair shop we’d be ready to go hiking together. 🤣 Until then, take care Turquoise. 🤗xx
Prior to Naproxen I took Diclofenac Sodium, (for 15+ years), which is also a non-steroid anti inflammatory, and for me was far more effective than rubbishing Naproxen.
Current GP, who I changed to following house move, flatly refused to prescribe Diclofenac Soduim. On being diagnosed with SLE, Consultant Rheumatologist asked GP to put me back onto Diclofenac Soduim but they still refused, as it’s on their ‘Red Flag Drug List.’
Strangely Rheumatology wouldn’t prescribe it either despite them suggesting it!
I only recently became aware about contraindications of Naproxen & SLE; I feel cross & dismayed that neither GP or Rheumy never mentioned this alarming fact! ….(My GP surgery isn’t the best, but it’s near to where I live so it’ll suffice).
Coincidentally, since stopping Naproxen March 2023, the awful skin lesions/sores I suffer with, (which were getting progressively worse), have virtually stopped! Seeing Dermatologist this morning so will discuss with them.
👩🏻🔬…. We are probably safer being our own Doctors! ….👩🏻⚕️
I too have lots of GI (Gastrointestinal) issues &, at the advice of GI team, I am current following the FODMAP diet to see if I can identify if a particular food group aggravates my gut. I’m only on Week 2 of the elimination part, so early days yet; Coeliac screening done last week was negative so I’m ok with gluten which makes doing FODMAP a little easier.
I see an Endo-anal physiologist who is excellent & specialises in bowels - she’s given me loads of constipation advice which has really opened my eyes - & bowels!! Apparently, too much fibre is counterproductive, like you, I’d been eating lots ….. I’ll send you some info later, bear with me though xx
Various meds play havoc with my troublesome bowels, even paracetamol….was diagnosed with IBS 30+ years ago but never had any further tests/investigations like I currently am. Prescribed meds back then, never helped so ended up just chewing on shop bought Calcium Carbonate….DIY Dr again! 😂
Hi, I have similar problems with constipation and I have GI problems too. Also have IBS as well as reflux. I was interested that too much fibre isn’t helpful, they tried getting me to take fybogel but all it did was to make me very bloated. And I can’t take paracetamol on a regular basis every day, it gives me very very hard motions so I’m just taking one 30/500 cocodamol at night instead, but it’s not a good answer to my pain. I have to use dulcolax to get any bowel motion at all and it’s so unpredictable in its results for me.
If you have anything that might help me then I’d be very grateful if you would post it or send it to me.
Someone did tell me there was a medication that would help prevent the constipating effects of codeine based medication but I’ve never come across it. Have you ever heard of it?
I can’t even get my GP to send me to a gastroenterologist, I’m glad you’ve found someone to help you. xx
Thanks for replying, you have my sympathies regarding troublesome bowels & GP reluctance to refer, which is most unhelpful.
In my experience, it’s trial & error with the various laxatives, (prescribed & over the counter), there are so many which all work in different ways. Some soften the stool, others draw moisture from the bowel & some put moisture back in.
Over recent months I’ve had quite a few changes - taken Laxido for years which I dislike because I find it very harsh, causes abdo pains and getting the dosage correct is tricky….too much & the urgency is bad + diarrhoea, too little & it’s ineffective. You do have to learn to be your own Dr with the awful stuff!
I’m very familiar with codeine after taking it, (when required as it causes me terrible bowel problems), for years. I worked out that for every one 30mg Codeine, I needed one sachet of Laxido …. I now have Tramadol which is equally as bad for causing constipation.
Recently tried Docusate (stool softener) but it was ineffective.
GP suggested a combination of Senna tablets & Fybogel & also said as there are so many to choose from, the combinations are vast & personal to each patient. Currently, I’m trialling one sachet of Fybogel am + 1 Senna at tea time….Not a bad combo which is effective for me.
I don’t get free prescriptions, have a prepayment certificate (PPC), so always ask to be prescribed items even though they can be bought more cheaply as I want full value from my PPC!
I’m currently doing a 20 week Bowel Movement Diary under the care of a Endo-Anal Physiologist who I got referred to by a Colorectal Surgeon.
The Diary is quite comprehensive & includes
~ Stool type using the 💩 Bristol Stool Chart 💩
~ Food & Fluid intake
~ Activities/exercise & I’ve added how I’m feeling physically/health symptoms/mood
~ Bowel meds & if I’ve taken Tramadol
I had a 10 week telephone appt with the Endo-anal lady, then will have another at the end.
She recommends Glycerin Suppositories for particularly ‘bunged up’ times; Inexpensive (I paid £2.80) from supermarket = effective!
Other things she’s taught me are
1. Correct pelvic floor exercises (build up gradually over a few weeks) and continue to repeat them forever!
2. How to correctly sit on the toilet when opening bowels
3. Never to push & overstrain the bowel …. She gave me a specific method, which if you’re familiar with Yogic or Diaphragmatic Breathing this will make sense …. As you’re sitting on the loo, say out loud, “Mooooo,” yes make the cow mooing sound 🐮! At the same time push your tummy outwards. This engages the diaphragm which does the pushing on your bowels rather than straining.
Practice by placing your hand on your tummy so you feel it’s rise & fall, pull it in as you breathe in the and make it into a round dome as you breathe out.
The combination of strong pelvic floor muscles & the 🐮really helps.
Another technique is to do lots of little coughs in succession as you’re trying to open your bowels, this achieves the same effect.
As there are many causes of bowel problems, (and back problems too), GPs will not go rushing in as they require so many time-consuming tests, investigations & various other health professionals. Cost is sadly a factor …. Bowels & backs are notorious ‘mine field’ areas, so unless you have any ‘Red Flag’ symptoms, GP won’t refer. You as the patient have to be persistent and sometimes go back to see them many times.
I got quickly referred this time on a 2 Week Cancer Pathway due to various ‘Red Flag’ symptoms.
The Endo-anal lady recommended the website bladderandbowel.org
On their Homepage, scroll down to the subtitle ‘Popular Bowel Topics’ & see ‘Toilet Positions to Relieve Constipation.’
It’s a really useful website with lots of information & advice.
Another one is patientwebinars.co.uk ….just google it & click on ‘Webinars on Irritable Bowel Syndrome.’ There is FODMAP information in there which is useful to read about as apparently certain FODMAPS can cause constipation.
I recommend looking up Didi de Zwarte (Diditition), who is a highly trained Dietician who has some excellent You Tube videos about IBS, bowels & FODMAP.
Her website is wwwdiditition
A very long reply, I know but wanted to give you as much information as possible, if I think of anything else I’ll let you know x 🌸 x
This is so helpful T-1 thank you 🙏🤗I'm gonna pass this info on to my hubby who has bowel issues. I'm looking forward to hearing him mooing on the loo!! 🐄😹💜🌈Xx
A very comprehensive list of do’s and don’ts in the toilet department. Very helpful indeed some of which I‘ve also been told by Nurtiritonist but a lot I didn’t know. Thank you. Who says we talk a lot of 💩? 🤣
I was prescribed Laxido and then Cosmocol but neither were satisfactory for reasons you mention. I’ll have a look at the websites you mention. So many thanks again for that as I’m sure many on the forum will find all this VERY helpful. Xxx
Thank you so much for the info! It’s really helpful and there’s lots I didn’t know.
Things have taken an interesting turn. My rheumatologist phoned me on Friday afternoon as I’d rung the helpline about pain in my shoulder and my hip. While we were talking about my hip he told me that the X-ray I had back in May last year showed not only the arthritis I have but he could also see that my bowels were chock full of faeces which shouldn’t be there. He is writing to my GP to get me strong laxatives and if that doesn’t work then it will need an enema. He told me that even if I do a normal amount then I’m not clearing all the backlog and I must persist with the laxatives all the time. Sounds awful especially as I take warfarin and diarrhoea can affect the levels (I have APS) but I’m just going to have to do it, or it could get dangerous if it isn’t already. Luckily I don’t work as I think I’ll need to stay by the toilet for a while. I don’t find laxatives predictable at the best of times.
I also have Sjogrens and have recently learned that constipation is a big issue with that too due the the dryness which can even affect your colon. I think I will be drinking more water too!
Thanks again for your help, and to Spotty-ewe too xx
How did the Dermy appt go? I’m pleased to hear your skin has greatly improved since coming off the Naproxen. It was very irresponsible of your GP and Rheumy to either not know or not tell you that Naproxen should not be taken if you have SLE. 😳 I forgave the young Registrar who prescribed it for me as he was learning and was only trying to help but without the experience and knowledge expected of fully qualified GPs and consultants.
How weird that your Rheumy wouldn’t prescribe the Diclofenac Sodium despite recommending it.🤷🏼♀️ I wonder what is supposed to be wrong with it?
My GP suggested I tried the FODMAP diet when I was really struggling with my bowel last winter. The nutritionist suspected I had IBS, which I knew for certain I didn’t, and when myGP suggested I came off Pregabalin it slowly cleared up and was back to normal until this marathon of steroids and Esomeprozole started in March. So I never did start the FODMAP diet after all. A friend who definitely had IBS, and with a huge amount of pain, was told by her nutritionist to stop all roughage, seeds, skins, spicy foods etc and hers cleared up. But that definitely was not my problem. But of course if you take loads of roughage for constipation you have to drink gallons of water with it so it doesn’t compact and harden exacerbating the problem even more. I’m never thirsty so fall down in that department as I simply forget to keep drinking/sipping water throughout the day. 🙄
I’m very interested in the info you have offered about bowels. There’s no hurry Turquoise so just when you can manage.
Hoping your appt went well this morning and that you don’t have to revert to DIY doctor again, or Dr Google as in my case!🤣
The info I was going to tell you about, I’ve put in a reply to Jumper99 to save me typing it out twice.
Who’d have thought your original ‘Around the Block’ post could lead us to bowels!? 🤣
Had an interesting consultation with Dermatologist this morning, she’s the best one I’ve seen there & makes up for the appalling ones at the same clinic. Prescribed me 3 different skin & scalp treatments, recommended La Roche skincare products & to cover myself in a barrier cream, eg Vaseline before swimming - don’t think the pool attendants would thank me for that!
I do already use 2 Vaseline moisturisers which I can tolerate, the Dry Skin Healing Balm, 72 hour intensive moisturisation for me is really effective. Always been a Vaseline fan …..
She also briefly discussed the connection between bowel problems, skin conditions & SLE, even suggested the blisters I get could be Bullous Lupus….I could’ve sat there for hours picking her brains!
Apparently not only Naproxen but all NSAIDs can cause higher susceptibility of UV/Photosensitivity in SLE patients. Shame GP or Rheumatology never told me!
So pleased your Dermy appt went well. Some great advice and suggestions there. 👍🏻 Yes, I’m sure Dr Google told me all NSAIDs are bad news for Lupus, but so many Lupies seem to be prescribed them for various painful joints etc so I wondered if Dr G got it wrong. Evidnetly not. So why do they prescribe them? 🤷🏼♀️
Interesting what she said about the links between bowel problems, skin and SLE. My GP prescribed QV cream to help my skin return to normal after the first horrendous rash I had in February/March and I’ve used it ever since, even on my face. It is SO moisturising and the moisturising lasts ages, leaving my skin feeling silky smooth. Luckily he’s now put it on my repeat prescription. But I’ll definitely look at other La Roche skin products which will be nicer than Simple or unperfumed Baby products which I’m using at present.
Thanks again for taking the time to share all that fabulous info - so helpful to all of us. 👍🏻👍🏻
Take care Turquoise and hopefully we’ll speak again soon. 🤗😘xx
Well if you joined me I’d say, “Enjoy the trip Cecily. See you next Fall!” 🤣 Lovely to hear from you Cecily. I hope you are keeping ok? Love and hugs xxx
Laughter is the best medicine, so your pottery classes will be doing you the world of good. Wish I lived nearby! Thanks for the wonderful cwtches.🥰 xxx
As for tips for fatigue, my old rheumatologist years ago told me to get a bike and do five miles every evening before bed so I bought an exercise bike, it didn’t help and 13 years on and I’m still exhausted most days some days slightly better where I can manage to do more, steroids were helping a bit until I dropped to 6mg, 7 isn’t really cutting it and I started to flare last night and feel dreadful today. My rheumy nurse rang yesterday and said the rheumatologist had said to start a low dose of Azathioprine again to see if that helps🤞
Very gentle exercise/ stretching, pacing and listening to your body’s needs are so important although I feel it’s not always possible giving your body what it needs when you have things planned and have to push through, today it’s the dentist for me😖. Doing tasks and taking lots of little rests in between even on better days when we’re so tempted to just crack on (I’m guilty of this) and pay the price for days to come 😞
My new rheumatologist said that out of all the symptoms they can help treat and relieve that fatigue is the hardest to help with, which was no consolation to me, although I know it I’m not sure I wanted to hear it because I still live in hope 🤞.
Why do Rheumy’s think exercise is going to improve fatigue? 5 miles on a bike sounds a bit OTT to me for somebody suffering fatigue. 😩 I think the steroids have been helping me and I just hope I don’t fall into the pit of fatigue again once they stop. 🤞 I’ve another day on 15 mg before dropping to 10mg for a week, then 5 for the last week.
I’m so sorry to hear you started to flare last night!😩 Are you going to try the Azathioprine again? I suppose it would be worth a try when you feel so awful.
I do stretching exercises every morning before breakfast but I think my heart needs some aerobic exercise as I’ve done virtually none this year. But as you say other commitments/appointments and even the weather often prevents us from doing what our bodies are crying out for, not to mention our old enemy fatigue. Pacing ourselves with rests in between tasks is a very good tip. I’m not good at that myself and am also a ‘crack on’ merchant when I feel up to it. I’m always trying to make up for lost time from days I’ve felt like doing nothing. A common mistake for all of us I think.
I hope all goes well for you at the dentist EDD. 🙏🏻 My dental appt is on Friday. Do you still get yours on the NHS? In our area ALL dentists have gone private and we have to pay £8 each per month at our dental surgery to get 2 included check ups per year, but no scale and polish included and any treatment necessary will be charged at private prices.😳 SO unfair.
Lovely to hear from you EDD but sorry you are feeling so dreadful at present. I hope you improve soon.🙏🏻 No hurry to get in touch - just as and when you feel like it. Look after yourself. Sending loads of healing hugs back to you. 🤗💕🙏🏻💐 Xxxx
Gosh that’s awful no NHS dentist, is that the same everywhere in Scotland?! Yes luckily I’m with an NHS dentist, I’ve got to have a molar filled and I’m having sensitivity in another molar that has a crack in it, if it gets worse I’ll have to have root canal and a crown at a cost of £300 but he recommends being referred to a private specialist for it which would be nearer £1000! Honestly how do people afford it and to be quite honest an NHS root canal should be as good as a private one, it’s just not right, no wonder people just have their teeth removed, I’m already lacking in 5 back teeth so really don’t want to lose any more! Cost me £25 for the check up and £ 90 for a white filling, I’m trying to avoid amalgam and gradually change the ones I already have as they need replacing to avoid the mercury.
Nope we don’t get a scale and polish with the check up anymore like we used to!
I’ve got the Aza, the nurse sent me a prescription and 6 blood test forms which arrived this morning , a blood test every two weeks😖. It’ll either help or it won’t so we will see.
No I hope your fatigue doesn’t return after the steroids, it’s always a worry when we’ve felt a bit better. Fingers crossed for you 🤞
Thank you for your good wishes and hugs, sending you a big bunch back and hope Friday at the dentist goes well for you, I’ve got a GP appointment for my hip injection 😖 so I can fill him in with everything else, I'm pretty sure a 20 minute appointment will not be long enough 😆.
No, I’m sure it isn’t the whole of Scotland but I don’t know if it is only our region either (Dumfries and Galloway). The dentists are still seeing children on NHS but everybody else has to pay private prices.
I’ve had 2 molars crack in the past and my dentist did a great job of patching them up again. Personally I wouldn’t have root canal done on my teeth as I’ve heard stories of how painful it is and how it quite often is unsuccessful. That’s enough to put me off. 😆 I had my 2 front crowns replaced (after 35 years) just before our dentist went private in February this year and that cost me £256 for both on NHS. I’m not totally happy with the fit of them, but I’ll see what he says on Friday. That’s some price you’ve been quoted for your dental work., especially if you are advised to use a private specialist.😳 Like you I was having my fillings replaced with white ones when the need arose and having SLE I was able to get them on the NHS but they were still expensive. So I hate to think what they’ll be private.😩 I might have to abandon that idea.☹️
Glad you’ve got the Aza now. If I have to go on the Methotrexate fortnightly blood tests will be necessary too for the first 2 months I think it is, then once monthly after that. I hope it works well for you EDD and gives you a better quality of life. 🙏🏻 Thanks for keeping your fingers crossed for me re the rash staying away once the steroids finish.
Thanks again for your kind wishes and bunch of hugs. 🥰 I hope your GP appt goes well. You’ll have to speed talk to get everything said that you want to tell him.🤣 Take care and rest up until then.
Do what you can when you can. In terms of exercise classes, they are set times. These might not be the right time for your energy levels. My energy levels change all the time so even if its a good paced walk, go when you feel the energy to do it. Work with your body and don't push it further than it can take. Sometimes I just do pilates in my bedroom for 10 mins if that's all I can manage.
Excellent advice dg70. For the same reasons I’m planning to cancel my Bannatynes membership after almost 17 years because now my illness has advanced, not to mention my age, I find trying to get there for a certain time can be stressful. Also since becoming immunosuppressed I feel the risk of contracting a virus or infection is far higher in the club. Thanks for your advice. Xx
I know its sad to do but I cancelled my bannatynes many years ago as well as I knew I was struggling and it was just an expense that I didn't need if I didn't use it. I love to swim and I thought that was the answer as I could go any time but the chlorine was causing rashes so that was out. It's frustrating I know. I have a cross trainer at home and put music on and do quick bursts on that when I feel a bit of energy just to keep the heart pumping. We have to take exercise when we can do it it just takes more discipline when you do it at home on your own. It's true what you say about infection, you can be very close to others who are throwing sweat and other things all around you and changing rooms again are not cleaned all the time, best to be careful and stay as healthy as possible.
My thoughts exactly. I’ve thought of buying a treadmill but I wouldn’t know where to put it. I have a wooden step I use each morning (50 step ups) and a few stretching exercises and squats, but that’s about it. I used to do several rounds of the yoga Morning Salute but my arthritic shoulder put a stop to that. Swimming and Aquacise stopped due to recurring UTIs caused either by the chlorine or germs or both.🤷🏼♀️ So frustrating as you say. But once I finish the Pred I’ll investigate what I can do without too much risk of catching a virus or infection. Poor hubby has a painful bunion at present otherwise I’d drag him off for our walks again as we have woodland walks from our doorstep. I’ve enjoyed our chat. Take care dg70 and keep as fit and well as can be. Xx
You can get some pretty small exercise bikes now. I had one that folded smaller when I wasn't using it only a couple of hundred pounds but with no bannatynes you could invest in something if you can fit it in the house. Enjoy your walks, they can lift your mood too. I'm going back to bed as I think I'm in a flare, my brain has gone to mush. Good chatting with you too. xxx
I’ll see what equipment is out there for me. I was advised against exercise bikes unfortunately due to my arthritic knees. But there’s sure to be an alternative. And yes, walking is lovely with the birds singing, sightings of red squirrels, hares and buzzards overhead, and in the evening of foxes and badgers. So VERY therapeutic as well as good exercise.
I’m SO sorry to hear you are flaring. Rest up and take it easy for the next few days. Look after yourself dg70. Thinking of you. Xxx
I go to the gym twice a week sometimes three times and I’m 72 l have lupus sjogrens and PBC. I definitely feel better for it. If l feel particularly fatigued l have a rest day and change my gym day. Exercising gives me a buzz and l have made lots of friends young and old most healthy but some not so healthy but all enjoying exercise. I find going early (early for me) around 9am I’m at my best then if need be l relax but when the weather is good I’m usually gardening. Best wishes x
Thanks for your experiences Kingsnorth. Bannatynes is 12 miles from where I live so 9am is out for me - far too early. I told one of the ladies this when she suggested a class I would like starting at 9am. I said it wa too early for me with the distance away I live plus I have Lupus. “Oh, is Lupus your dog?” she asked. I wish it was!🤣 More like the wolf that you don’t want to waken!! Keep enjoying your classes but I think I’ll be cancelling my membership next month for the reasons I stated to dg70. Take care. Xx
that is a long way to drive my gym is literally 20 minute drive from me. See if there is a local keep fit class near you or yoga we have them in our village hall.
thank you hun. Still struggling …my controlling dad prevented my brother’s ashes being buried. Always due to his ways. I scheduled the burial this coming Monday 17/7 at 10:00 am. Exactly 4 months and 4 days after he passed.
I’m praying that I will start to finally recover from the deep depression this all has thrown me into.
I’ve been popping in on HU occasionally and found your post which make me giggle and made my day.
I’m SO sorry to hear what you are going through EJ. My heart goes out to you as I know how all consuming bereavement itself can be never mind combined with a controlling father and the symptoms our wretched conditions bring to us. I’m thinking of you and praying the depression will lift in time with happier days ahead.🙏🏻
Take care honey. Love and healing hugs. 💕🤗🤗🙏🏻😇🕊️xxx
I can totally relate to this and been reading through the threads. Classic do more exercise or as much as you can but too exhausted or in too much pain to do it. Feels like a never ending cycle.
I'm not sure if you have a nuffield near you?
I've just joined the Joint Pain Programme at nuffield health.
It's a 12 week rehabilitation programme. You got twice a week and they go over a range of different exercises, stress/pain management and nutrition. It's been great in navigating around the gym again (I used to love going to the gym before being diagnosed). It's been helpful in building up my confidence and learning what suits my body and my joints and what's a bit too much for me. I've also met some lovely people 😊.
We have done Aquaerobics (although good for joint I was so fatigued for 2 days after I probably will not do it). Thai chai was excellent and pilates I haven't tried yet as difficult around work but supposed to be excellent!
It's hard to find the balance when the pain/ fatigue is so unpredictable but sounds like you've got plans for rejoining the gym and getting involved again. I hope it works for you and check out if you have a nuffield close by ☺️. You also get 6 months free gym membership with it.
Many thanks for the info about Nuffield, Simbob. I doubt very much if we have a Nuffield in this backwater area, but others reading this thread might well benefit. I’ll definitely check because it sounds like an excellent programme they offer. Our Bannatynes offer two forms of yoga, Pilates (very good class), light aerobics for the over 50s called Young at Heart, and a class called Body Balance which has elements of yoga, Pilates and Tai Chi throughout and is done to music. Quite a challenging class that one, but one that gives a great sense of achievement. My arthritic shoulder made me drop out of it last year and I’m not sure if I’ll ever get back to it now I’ve lost my fitness over the 6 month membership freeze.
Aquaerobics I used to love but recurring UTIs put a stop to that.
Thanks again for the info about Nuffield and for your kind wishes Simbob.
I hope you continue to enjoy exercise and give Pilates a go. Take care. 🤗xx
I have not one man in any of my yoga classes - there's no time; men don't need yoga; it's not fast enough; my personal favourite said to me to my face by a man in my village "why do you charge people to lay down?" Before I continue, this is not a "bad" on men at all as I have plenty of ladies that say all of the above and more too. It's just that I had to share this photo which I think is just beautiful. I'm off to have a lay down class! Namaste!
A yoga practitioner performing a variation of a lotus pose.
Do your ladies think doing the morning salute and warrior poses is lying down? 🤣 Some yoga poses are very challenging as your attached photo proves. I often feel I’ve worked hard to deserve the lovely relaxation/meditation at the end. 😉 xx
That was particularly unhelpful of your consultant I am sorry I feel your pain as I am sure others do too. I have just seen my gp as I am too struggling with fatigue and to lose weight . Her answer do more cardio ! I could have cried , and she suggested swimming which she knows sets my joints off or cycling !!
I already do Pilates every day and a daily walk and watch my diet . She then looked at me and said you could do with losing weight . Aaaaahhh I sometimes think I am talking to a wall . I would love them to live in my shoes for one day , just to understand .
And I think you are doing really well to attend 3 classes and walk 3 miles a day.if you are struggling a bit maybe you are flaring , it is summertime. Ease off a bit , be kind to yourself and I am sure you can build it back up
Hi Maddymay. I’m SO sorry to hear you’ve had the same sort of response I had from Rheumy. It is so frustrating isn't it when they don’t listen or understand.
Sadly I haven’t been to my classes for 6 months now as my Bannatynes membership was frozen for me when I took very ill in January and spent a few days in hospital. I then went into flare because the hospital had taken me off Hydroxychloroquine to give my liver a rest. Bad move. I’ve been in flare pretty well ever since with horrendous rash from scalp to toes. I haven’t been able to walk 1 mile never mind 3 since February/March as I became so debilitated with the flare and meds. My fitness plummeted and my weight went up. ☹️ So I truly sympathise with you and what response you got from your GP. As you say, they could do with being in our shoes for even a day.
Good luck with your weight loss and if you find anything that works let us know, because I for one will be very grateful for any advice. The Prednisolone is no doubt making matters worse and I have another 2 weeks on them. But after that I’m going to try even harder to shed this extra weight again.
Look after yourself Maddymay and let us know how you get on. 🤗xxx
Spotty, i just love this photo as its about all i can manage at the mo thanx to the shingles!. I'd love to walk round the block with you. Its made me 🙂thank you. Fatigue is such a difficult symptom to manage and treat with these illnesses but is so real and demoralising for us. Consultants find it hard to treat but they don't have to live with it as we do!.
I'm glad you feel able to start back at Ballantynes but do take it slowly. You've been a long time away and very poorly.
Mum and i have found a very gentle exercise called quigong online. Its a mixture of tai chi, pilates but ever so gentle stretching exercises. Its perfect for us lupies who particularly suffer with fatigue. You do as much or as little as you can. Had to stop even this because of the shingles but we will go back to it as its benefitted us both.
I do hope the steroids have banished the rash and you keep feeling better. 🤞. I'm so sorry ive not been in touch but shingles have really floored me , thank goodness for anti-virals. I will reply to your lovely messages but i can't promise when. I've got to do mega resting . Have a lovely weekend and take care Xx🤞💕
Hello dear Misty, I’m so very sorry to hear you are still suffering so badly with the awful Shingles. TBH I’m not up to much exercise either at present suffering with sleep deprivation (sleeping only 4-5 hours each night for a few weeks now) but hopefully that will improve once the Pred stops in 2 weeks time.🤞My Bannatynes membership is reactivated on 1st August as my 6 months freeze ends then. So I’ll start back very gently and see how it goes. But I think I’ll be cancelling my membership from 1st September.
Quigong is very good, as is Tai Chi itself. I used to do it too and enjoyed it. But the instructor changed and wasn’t the best so I stopped going then and did an extra class of Pilates at Bannatynes instead. So pleased to hear you and your Mum have benefitted from it. I must look for it on-line. Sounds a perfect option. Thanks Misty.
Don’t worry about replying to my messages. I knew you had shingles so wasn’t expecting a reply while you are ill. Just take your time and concentrate on getting better. I’ll be thinking of you and praying for a full recovery before too long. 🙏🏻 Take care lovely Misty. With love and healing hugs 💕🤗💐xxx
Thank you for your lovely , understanding message spotty. I'm sorry your sleeping so poorly as it really does affect the next day badly and is detrimental to health the longer it goes on. I'm noticing that with the shingles.I'll keep 🤞that its the steroids and you'll be better in a fortnight. I do hope they have banished your rash. I think thats a good plan re Ballantine's. Its sad how much we change but by finding an alternative it doesnt feel so bad. Denman College do the online quiong class, i'll send you the link.
I am improving but its the fatigye, these extras always do it to us don't they?. Take care and i will be in touch. Xx
Aww Misty, you are SO thoughtful even when suffering badly.
I’ll have to give a month’s notice to Bannatynes that I’m leaving, but I think it is the best plan especially as there are alternatives that are safer and more flexible for me. I look forward to getting the link to Denman College Quiong class in due course, but only when you feel up to it. No rush at all.
I hope that old enemy of ours Fatigue, leaves you soon and allows you the energy to heal. With love, prayers and hugs. 💕🙏🏻🤗🤗😇💐xx
I was at a Craft Fair, with my Father and Step Mother, some years back now- LONG before Covid. On one of the Stalls were Wooden Disks, about five-or six- inches in diameter. These were embossed with 'Your very own 'Round Tuit'...... So, when you are Asked to Help 'With The Dishes/ The Cleaning/ The Washing Up/ The Shopping/ The Painting/ The Family Chores'' and you say "When I Get Around To It".... you have your own ROUND TUIT😀😀😀😀😀😀".
Hi my sweet Spotty, This is great 😃! That block is our lives now, LOL, but I have one problem, the directions say to ," place the block on the floor"! You all must be very strong here because, I can't pick it up to place it on the floor, I tried, and there I was, all of me, on the floor, with Storm licking my face 🐺🥰😆......I can lend you all our Storm, he is a complete gym and workout all wrapped up in one.,........... When I was young, I worked at a child's day care center, private and small, in a tiny church, a Nun would lead morning exercises for the children, I'll never forget her determination to get the wee one's moving, her song went like this, " bend and stretch, reach for the stars, there goes Jupiter, here comes Mars". Raising her arms and wiggles her fingers up high, like a tie chie move, boy could she move, I valued my time with her. She always said, if you keep moving, you'll be forever young........I value house work as exercising, when you do what you can, you take a deep breath and say, I did it 💖....So everyone here, keep moving the best you can, never give up buttercup, each one of you, and do it. I'll keep trying to place that block on the floor my dear Spotty,. You are doing wonderful, and accomplish, soooo very much. You are a lovely, example of true grit, and determination..... I send you and everyone here all my peace, healing, and bunches of love. The Stormy Sunshine 💐😇💖🌞
Hi dear Stormy, Lovely of you to pop in when I know you are so unwell. But don’t worry about the block, it is made of textured polystyrene so weighs nothing. 😁 You must have tried to pick up the wrong one! 😳
I love the story of the Nun and her marvellous song. The kids will have loved that. 🥰 And great advice from you to keep moving even if only doing a little housework which I often do to music. Helps make it more pleasant. 😉 And don’t you feel better for it both mentally and physically? Such good advice.
You get that block swopped for the polystyrene version and you’ll soon be joining me and others for a walk around the block. 👍🏻👍🏻
Thanks for your very kind words - not sure I deserve them, but much appreciated anyway. 😃 You are a very determined lady yourself and you don’t let your poor health stifle your care for others or make you lose your sense of humour. 👏🏻 I admire you for that.
Take care dear Stormy and give your lovely Storm a big hug from me.🤗 Lots of love and healing hugs. 💕🤗🤗🙏🏻😇💐xxxx
Take a well deserved break and do light exercises that help with anything you are struggling to do like getting up stairs or walking. I pace myself and only do what I find easy and fun 😊 10mins exercises after a few warm ups
Here’s a few exercise suggestions for you, which I do when I’m unable to get out; Some do require energy but if you’re able to, just a few minutes might make you feel a bit better for doing something. Not quite the same as a swim, class at the gym or a nice walk/hike but ideas sent to you with the best of intentions 😘
Hula Hooping
Despite me having many back problems, to name but a few = 5 degenerative intervertebral discs, scoliosis, fractured C-spine (healed with sclerosis), osteoarthritis, sciatica + spinal surgery I can hoop very proficiently & have been doing so for many years.
Add in both shoulders with torn rotator cuffs, (failed surgery on left), bursitis, tendinitis & osteo, plus osteo in both knees as well as SLE joint pain, hooping is something I can manage. On a good day 30 mins along to music, but on not so good days only a few minutes, bad days = zero!
My hoops are left out out & sometimes I do 2-3 mins here & there throughout the day.
I have checked it out with physio at Chronic Pain Clinic & also Advanced Spinal Practitioner at Musculoskeletal Pain Clinic - even took my hoops…both confirmed it was an excellent form of exercise which is not detrimental to my many orthopaedic ailments.
This is because my ‘core,’ abdominal & back muscles are strong, (years of yoga, swimming, body toning, physio & hooping). No strain is put on my spine because my muscles are doing all the work. I have a very unstable lower back, so obviously don’t hoop when a disc is actively bulging which happens fairly often….
Hooping gives an all over work out, helps to keep leg muscles strong & is a brilliant cardio-vascular exercise, plus it’s good fun which can be done at home providing you have just enough space for the hoop to spin - even whilst watching TV.
I sometimes hold a 1kg weight in each arm doing various arm exercises, (up, down, forwards, sideways, crossways, under & over ‘strong man’ etc, etc). Hands on head when tire ….
I jump about too, (gently hop from foot to foot whilst doing boxing punches with my arms), marching, turning around & hooping in both directions. As with any exercise, I built up gradually over time….I know a lady in her 70s who regularly hoops, has had many surgeries, knees & hips replaced, has osteoporosis & osteoarthritis….
I have 2 Opti weighted hoops, a 1.8kg & a 2.5kg, the heavier one has a larger circumference. There are various makes available, mine are padded with a smooth inner. I did bruise slightly when I initially started doing it, and if I’ve not done it for a while, I only do short sessions.
I haven’t got one of those linked, smart hoops with an attached weight that flys outwards as you hoop, so can’t comment on them. They’re all the rage at the moment…..
Other things I use are -
Exercise Bands - (did lots as part of post op physio & in yoga class), these can be used sitting down, eg under your foot & pull upwards with your hand, or use your hubby as an assistant to pull against, over a door attached to the handle, legs outstretched on bed etc, etc.
Mini Trampoline - Small, circular, gentle on the knees, gets your heart pumping! … If your balance isn’t great, one with a support bar is helpful. I enjoy this activity especially as I used to ‘bounce’ competitively for both school & county teams. (Blowing my own trumpet there ☺️)….
Rick Bhullar - He has many on-line/You Tube videos regarding walking exercises at home.
Apologies if you’re already aware of him & my other suggestions, but your post has really got me thinking about what I do & don’t do due to the dreaded ‘fatigue’ and how much it affects my life.
On another note, just wanted to tell you about 2 websites. You may well be familiar with them & I’m telling you something you already know. The dermatologist I saw 3 months ago told me about this one -
British Association of Dermatologists - bad.org.uk
There is a lot of info about SCLE/CLE/SLE amongst lots of other skin ‘stuff’ on there.
Many thanks for this Turquoise. I was never good at hooping even as a child and got very frustrated when I couldn’t keep the wretched thing going. But I could see if like an old wine I’ve improved with age.😉 Is there a supplier you can recommend or should I just browse on-line for one? At 68 I ave osteoarthritis in several joints - knees, left shoulder, neck and lower spine, but would like to give it a go.
I used to do 3 rounds of sun salute every morning which our yoga instructress (1 month older than me) said exercised 95% of the muscles in our bodies. But when my shoulder became particularly painful end of last year I couldn’t manage any more. Since 3rd steroid injection in March it has greatly improved so I’m hoping to get back to it one of these days, along with the camel pose and others I used to do regularly.
Exercise bands I have and use to exercise my shoulders. We used them too in Pilates. Mini trampoline sounds fun but I’d def need the support bar. I’m not familiar with Rick Bhullar but will look him up. All massively useful suggestions and advice once again thanks Turquoise, as are the Dermy sites.
I’ve plenty to keep me going now and no excuses to not get myself fit again. Wish I had an exercise buddy though to keep me motivated. Pity you are so far away. ☹️
Enjoy your weekend and your exercises Turquoise. 😉
🤗😘xx
Doing camel pose only last year. Not able to now.☹️
Sun salutes are so strenuous, I know how hard Yoga can be, but these days I’ve devised my own, modified version & no longer do classes.
I feel for you and totally understand how distressing, frustrating and dismaying it is to be unable to do all that you once could. 🤗 I find it a bit demoralising how quickly I’ve deteriorated this year compared to last year. We can only hope that we’ll have runs of better days …. My hubby is much improved since having the Biologic, Rituximab IV infusions.
Recent physio I’ve seen referred to osteoarthritis as ‘Wear & Repair,’ whereas years ago it was called, the ‘Wear & Tear’ arthritis. Apparently, the new way of thinking is that the more you can work/move the joints, (even slightly), it will encourage new bone to form at the ends of bones within the joint. Hard to believe when it’s so painful to use them!
I find Ibuprofen Gel really beneficial & effective, I get it on prescription as it’s stronger than over the counter type. It used to be called Fenbid Forte Gel, I prefer to stand the tube in hot water prior to use. Hubby puts it on his knees, ankles & wrists before strapping on his Dr Arthritis, neoprene, copper infused supports …. Ready for action then 😂
I’ve had my hoops for quite a few years, made by Opti, ordered from Amazon so they may no longer be available but there are plenty of other makes. As long as they are weighted, padded & smooth (not ridged) on the inside - the thin plastic ones we had as children are much more difficult to hula with. The weight helps with the momentum, even if it keeps falling to the floor until you devise your own technique, at least you’ll be doing a bit of exercise bending down to pick it up! There are lots of You Tube videos to watch….
Perhaps you’d get on better with one of the newer linked, Smart Hoops I mentioned ….the idea is that links get removed as your waist shrinks!
If we lived nearer, I’d lend you mine to see if you took to it & gladly be your exercise buddy x👩🏼🤝👩🏻x
🤣🤣 Not so bendy now I’m anfraid and about a stone heavier than I was in that photo. ☹️ It certainly is demoralising how quickly we can lose our fitness yet it takes months if not years to regain it, if indeed we ever do. Good to hear your hubby has greatly improved thanks to the Rituximab infusions. 👏🏻
I was told ibuprofen isn’t good for Lupus so I don’t use the gel either. I use a product called Blume made by ZipVit which is a lotion containing Glucosamine and Emu oil gel with magnesium. It soaks into the skin quite quickly and has really made a difference to my arthritic joints. It isn’t cheap but is worth it for the relief it provides.
Thanks for the advice about the hoops and You Tube videos. I must look into that.
Plenty to think about and digest. I’m going to read through all of this post again and take notes of info and advice for future reference.
I’ll let you know when I get started on my exercise regime so we can be ‘distant exercise buddies’. 😉 Take care. 🤗🧘♂️🤸♂️xxx
Oooh, thanks for the Blume info, most helpful 👍 I am going to ask Rheumatologist at my next appt in August for clarification regarding Ibuprofen gel & SLE, especially after what Dermatologist told me on Friday about NSAIDs. I have kept the information leaflet from my last lot of Naproxen which clearly mentions the contraindications for SLE…Very remiss of both my GP & Rheum to not flag this up IMO!
When I get around to it, I might ask Debbie Kinsey, Health Advisor on here to see what she can find out.
I follow Weight Watchers, been doing so for most of my adult life 🤦🏻♀️! attended same class for 12 consecutive years until Covid closed it, now there’re none in my area. (Plenty of Slimming World, which I dislike).
I’ve never been massively overweight (a stone or so), but gained a lot after my Mum died & at only 5ft 1, I looked awful! Regardless of how much exercise I’ve ever done, or how healthy I’ve always eaten, I am predisposed to weight gain!
Got to my goal weight 8+ years ago & have remained a ‘Gold Member’ ever since, attending regular classes & sticking to the plan has worked for me.
WW have a fantastic App which I’ve used since its introduction several years ago; As there are now so few in person meetings, they do Virtual Classes which can be accessed from the App; I’m not a massive fan of them but can ‘attend’ with sound & camera off. There are several Coaches to choose from & I’ve found a lady I really like.
The App is very comprehensive, is a mine of information, has its own community, plus recipes, food ideas and exercise classes. You can log meals, sleep, exercise, set challenges and join specific groups for interests, hobbies, health problems and ares…..Everything to help with ‘The Battle of The Bulge!’….. You obviously have to pay to join but there are always lots of offers on. My Hubby did it a few years ago & lost over 5 stones, he still eats the WW way under my instruction! 🤣
My fingers are certainly getting a lot of exercise with all this typing!
Good idea to ask Rheumy about Ibuprofen. I Googled it and SLE just now and there seems to be contradictory comments about it, even saying it or Naproxen are sometimes prescribed for inflammation and pain associated with SLE.🤷🏼♀️ Well we both know what naproxen’s data sheet says, so that doesn’t make sense. Better to hear from the horse’s mouth, not that I’m saying your Rheumy looks like a 🐴! 😆 But I’ll be interested to hear what they say.
I am 5’3” so don’t carry weight well either, and like you appear to be predisposed to gain weight. ☹️ You sound far more organised and disciplined than me following WW and with great results for you and hubby!👏🏻 I achieved my goal weight at Bannatynes about 5 years ago by doing 4 classes per week as well as going to Scottish Country Dancing every Tuesday night, walking 3 miles most days and following a low carb diet. I managed to maintain that weight for about 18 months, But then the dancing had to stop due to hip bursitis (in both hips) and the walking became 1 - 2 mile walks 2 or 3 times per week. My weight began to creep up again and I’ve never got it back down to my goal since Partly due to Covid stopping me attending Bannatynes. Since January this year and being so ill with the liver and panaceas problems followed by the massive flares, my fitness has plummeted and my weight risen even more and my diet had to change to accommodate the severe gastric problems brought on by the Pred and other meds. All VERY frustrating.
But as soon as I’m able I’m going to start walking again and hopefully build back up to the regular 3 mile walk through the woods nearby. I’ll add the exercise bands and hoola hoop to my daily exercises and investigate a few other exercises/online classes folk have mentioned and see how that goes.
I’ll keep you posted with my progress Turquoise. In the meantime thanks for all your help, encouragement and advice.
Living with Lupus and doing Mild Exercise is Great.
I did get. FROZEN SHOULDER about 8 yrs ago - EXTREME shooting pain, and SHOULDER Dr said it is a LONG PROCESS to go through
- 6 months to FREEZE (Probably a repetitive Motion that irritated the JOINT & Ligaments)
6 months “ FROZEN”
6 months to “THAW”
YES - He was Right 😳😵💫
And he said - Don’t do ANYTHING that makes it HURT - Even Physical Therapy - if hurting do not do it; do “only things” that make it easier to withstand-
ICE, HEAT, Medical “MASSAGES” to get “BLOOD FLOW” back to the TISSUES, LIGAMENTS, ACUPUNCTURE, Needling, etc
That's a great idea! 😂 I feel I may dig out a couple of left over building bricks my husband has, stick them outside the back door and use them on bad days. 😇
🤣 🤣 Thanks to you SC I think we’ll def make the century. 😉 Tai Chi is wonderful but I do enjoy doing it with others. Fancy a session together?
Yes, I have several routines I try to do daily for my shoulder, my lower back for core strength and for my balance, but the discipline is my problem. Most days I find something more urgently needing to be done and then the exercise routine falls by the wayside. 🥴 I promise to try harder. 😆 Thanks SC. Xx
What a lovely website and such beautiful birds. Thank you.
We are blessed with greater spotted woodpeckers, great, blue, coal and long-tailed tits, gold finches, siskins, yellow hammers and more, that visit us daily. More a workout for the brain than the body but most enjoyable. 👍🏻
Once found charity recycling bin that is closest to home or supermarket, work etc ♻️💚Having mini clear and reorganise session, cupboard by cupboard, possibly better than some gentle gym workouts. Feel more positive too.
But to stay decisive, important not to get tired so just hour or so..no more.
So agree with decluttering providing some exercise and lots of satisfaction and ’feel good’ factor. It is an activity I often turn to on bad weather days and just wish hubby would do the same. British Heart, Canine Rescue and Greyhound Rescue are the charity shops in our region I most regularly donate to. Thanks for the link. 👍🏻
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Fatigue 
LUPUS, activity and exercise
Is fatigue Lupus related?
Question about the summer and exercise.
