D.O.M.S is it worse if you have lupus? - LUPUS UK

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D.O.M.S is it worse if you have lupus?

Penelope-Pipin profile image
Penelope-Pipin

So I am still yet to be undiagnosed but, I have been in the sun majority of this week and my rash has flared up again (so phoned the Dr and he was like I can’t help you at this point you need to see the rheumatologist- which I’ve been waiting to see since last year October ).

On Friday I went and did some Pole Fitness for the first time in about two years, yesterday and today I have the WORST DOMS I have ever had I can’t even lift my coffee mug without being in pain. I mean I knew I’d be stiff from doing a new activity but, is it possible that I am currently experiencing a flare ?

I know my body I know what it’s capable of I was a ballet dancer for years so this is just upsetting and frustrating to me.

Any suggestions or advice ?

23 Replies

"I know my body I know what it’s capable of"That was pre- having a chronc autoimmune illness., whatever it is. That introduces a new normal, and any form of exercise means you need to train for it first - especially after 2 years. It means starting from a VERY low level and building up VERY slowly - some people have to start with just a short walk to be sure it isn't going to result in DOMS the next day and build up a couple of minutes at a time, always with a rest day between exercise days, they are as important. It sounds slow - but it isn't when it works and doesn't cause DOMS that is so severe you can't exercise at all for a time. Training results from the healing of tiny tears in the muscles - and the ravages of autoimmune disorders mean everything is a bit delicateso they don;t heal as well.

Thank you I guess I’m just at a loss this week I’ve been progressively feeling worse and worse all week but, I was exhausted on Friday to the point I couldn’t concentrate on anything (I’m a Pilates instructor as well so my job is very physical as is) and I think the sun (well that’s what my GP thinks at this point) and the new exercise as you say have literally knocked me out. I mean my muscles were also cramping so badly in the class (and only as I write this do I remember as a child having constant muscle cramps when training for netball and athletics out in the sun as I’m originally from South Africa- is this something to bring up at some point with the rheumatologist when I eventually get to see one)

I’ve literally been in tears all day because my forearms, wrists and fingers are so sore

" is this something to bring up at some point with the rheumatologist when I eventually get to see one"It is very possiblt relevent so needs a mention

Thank you x

The only other advice I can think of is regarding the sun.cover up head to toes,wide brimmed hat,sunglasses,factor 50 stay in the shade and see if that makes any difference. You must cover up as uv on any part of the skin will trigger rash in your usual place. I suggest this because I'm photosensitive and after been out at a country park on thurs to meet family despite all I've mentioned above I'm stiff as a board with sore joints.I was out in the sun much longer then normal.3 days indoors and it usually eases.it may not be a flare but a reaction .uv is one of our nemesis as lupies x

If you do have lupus dont expect to be able to do what you used it again

Thank you for your honest answer x I’ve been out a lot more than I usually would this past week and am usually inside most of the day

It is most likely related to your exercise. Wait a few days to a week before blaming it on anything else. Sun is bad for everyone not just those with lupus, use sunscreens, protective clothing and hats regardless of a lupus diagnosis or not.

Hi Penelope ouch that sounds unpleasant. It might be a flare if you have been out in the sun as sun can cause flares if you have lupus. Certainly the lupus nurse is always telling me not to go out in the sun and always put factor 50 on. You say you haven’t been diagnosed and waiting for a referral? Can they expedite that at all? If you are in a flare it can be important to get treatment. What impact are the muscle pains having or other symptoms on your life, can you go back to the GP to chase up the referral emphasising how your symptoms are impacting on your life? Also, in case helpful, this is my experience of exercise post lupus. I have lupus (sle, nephritis and profundus) mostly controlled with a range of dmards, immunosuppressants and steroids) and have had for about 6 years. Prior to that I was a runner (for fun). Anyway, I well remember being diagnosed. I was underweight, in a wheelchair and I thought I’d never run again - devastating doesn’t come close). But I managed to do a marathon 9 months after being hospitalised and in a wheelchair by rehabilitating in a treadmill where I could hold myself up if I fell over. (It was more walking than running though!) Last year I was in hospital and unable to get out of bed to wee so had to have a bed pan to urinate due to the lupus pain (due to massive flare and swapping one immunosuppressant for another). But then I felt better once new needs kicked in and built back up to a 10k run about 3 months after. In my experience, lupus does change your life, I’m usually in bed by 7pm and often v tired, and I can’t run as far now, but I still save my energy for the things that are important to me and running is one of these. I hope you feel better soon.

I think the problem is I’m trying to justify the way I’m feeling so thinking okay well I’m just unfit, maybe it’s all in my head, maybe it’s this or that and my boyfriend has just said to me he’s noticed that “sick” smell on my breath (progressively the whole week I’ve been feeling like I’m getting flu ) so that’s why because I don’t have a diagnosis yet although my GP is adamant it’s an autoimmune, I guess I’m just trying to understand what a flare up looks like as apposed to just normal muscle stiffness

Start low and slow when restarting exercise routines.

I started with non weight bearing cardio first - erg and bike. As my heart rate dropped and my vagal tone increased, I added in low weight kettle bells for core strengthening. I do this on MWF. I did this for about 2 years. Invested in a treadmill so now I walk/jog a mile on TuThSa which I haven’t been able to do in a long time. I have severe degenerative disc disease with excruciating pain and exercising has helped me. I can’t go too hard on weight bearing activities or else my muscles will hate me for life. I stick to mostly cardio and low weights for core. I stretch as well but never been a yoga person. I do know some people find great benefit from Pilates and yoga.

In regards to preventing DOMS, drink plenty of fluids. I like liquid IV. NSAIDs are the only thing that work for me when my muscles are that sore.

Hope you find something that works. Getting back into any exercise routine is so friggin hard on and for us. Hoping you find success. Sending hugs. ❤️xx

Thank you so much for the message x

Hi Penelope-Pipin. You poor lady you are certainly going through it.It might be worth ringing your local hospital direct and asking to speak to rheumatology. You can then ask where you are on the waiting list to be seen as sometimes a GP can do a referral but it get a lost along the way. I have done this before and had success so it might be worth a try. It's sad to say that sometimes we have to make a bit of a fuss to get the treatment we need. I have been extremely lucky with my hospital and they are fantastic. But not all hospitals are the same.

I wish you all the best. Keep persevering with your Doctor too. This is your pain and you must not feel bad about nagging them.

Hope you will get a diagnosis soon.

Take care and be kind to yourself.🌼

Hey there I did phone the hospital direct , all they said is that I am due to see the rheumatologist in August/ September earliest so it’s very frustrating. Thank you for your kind words

Hi. Goodness that is a long wait. Good news is you are on the list! Well done for chasing them up. You never know it might prompt them to move you up the list if they get a cancellation. 🙏 Do let me know how you get on and on the meantime I'm always happy to listen. Best foot forward you will get the help you need in time.

Best wishes. 🌻

Thank you so much I must admit these last 7 months have been quite lonely. So I appreciate that x

People with lupus often can’t tolerate the sun. Some can’t tolerate it at all no matter how much sunscreen they put on. If the UV light is giving you rashes and you have SLE then it will also probably be affecting your whole system. Some of spend our summers indoors with the curtains closed. Wear high factor sunscreen even if not going outside. I react badly to heat too so you may keep an eye open for that as we head into summer. Lupus is not a pleasant illness, ok none of them are but Lupus is particularly bad. You have to work inside of what it will let you do, you can’t fight your way through it. Sun and exercise are particularly difficult. That’s likely to have a massive impact on your life. More difficult for you because rheumatology appointments have such a long waiting list due to Covid. All I can say is don’t go out in the sun and exercise as little as possible given that you are a Pilates instructor. On the positive side, these reactions will be of interest to your rheumy when you get one. I’d agree with the person who suggested phoning the rheumy department to check on your referral. X

Thank you so so much

I was a professional ballet dancer, totally in control of my body and in the peak of fitness for many years. SLE and Sjögren’s ever so slowly crept up on me when I got older. It takes a while to accept the fact your body is just not able to perform the way it used to especially when you see friends the same age running marathons and climbing mountains. You find out who your friends are - they are the ones who tailor the walk to your ability and always cross the road to walk in the shade. I find the covering up in the sun palaver really annoying but the sun does make me even more exhausted, spotty and sore. I find if I don’t overbook myself and allow recovery time between activities I can cope. I enjoy the different forms in Tai Chi. It is great for the joints and feels like dancing - learning an enchainement again. Hopefully you will get some meds to help you along the way. Good luck!

Thank you it sounds weird but I found your message very comforting. I think I’m just going crazy without an official diagnosis

Hi,

DOMS (delayed onset muscular soreness) usually occurs days after a bout of high intensity exercise.

I suffer with chronic fatigue so at the best of times I can only manage gardening for about an hour or two or vacuuming for about half an hour on a good day😢😩.

I can only walk never run…too 🥱tiring

This is my thinking it shouldn’t have come on so quickly nor to the point where I could barely even use my arms

Yes this lupus can be scary 😟!

Unfortunately with lupus it’s also so unpredictable 😫.

I’m reasonably well managed now with the meds but during the early days when the meds were only prescribed for around a month, I was sitting in a library at a computer and couldn’t get up from my chair due to sudden onset back stiffness and knee joint pain!😩.

Just sat there in pain unable to move and too frightened to call out but eventually forced myself out of the chair by pushing myself upwards.

Truly frightening!

Eventually the pain left. And the stiffness very slowly eased….

Did anyone help? NO.

Did anyone notice? NO.

THAT day I learnt seriously about invisible disability and how lupus can affect me and others.

😰😢

That’s awful !! I can only imagine how scary that must’ve been 😢

I was freaking out because I could barely use my arms but, I think back is worse

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