Exercise induced flare??????

Hi all, I have always been physically active - swimming, running and cycling and participated in long distance running and triathlon events. That obviously was put on hold when the lupus reared it's ugly head. Since being on Hydroxy I have gradually improved and am now exercising regularly without difficulty. In fact my ability to re-engage with sport is one of the measures the consultant is using to monitor my response to treatment. I decided to go to a boot camp, which was great fun. I didn't push myself too much and was pleased to be able to do all the exercises. Since then I have been experiencing significant muscle pain (to be expected) and fatigue (to be expected), but the brain fog has returned, my throat is sore, I have had my first bout of skin rashes in months and my feet and hands are swollen. It feels like one of the worst flares since before diagnosis. Any thoughts? Has the exercise triggered a flare?

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  • Short answer; maybe. Longer answer - if it has triggered a flare it might be time to review medication. Seems you're already using working out as a gauge for how the medication works for you, so it's important to get it in the books that you're feeling unwell now.

    I was a bodybuilder and had to give it up for years. Two years ago I was given a prescription for sulfasalazine. It worked really well, and I was able to start strength training. I started losing weight really well, gaining muscle mass, getting back into shape and putting paid to everyone who thought I was fat because I'm lazy, not because I'm ill.

    Last year, I started feeling symptoms again, more fatigued, feeling rubbish, and had to stop lifting. Weight came back on, and after several months of no improvement, it turns out the medication I'm on stopped working. I'm now going through the gamut of finding something that will work, but it could be months.

    If possible, get your bloods looked at for inflammation, and a review of medication you were taking. I thought I could just ride my flare out, but I should have flagged it sooner.

    Good luck!

  • Thank you Silvergilt that is really helpful. Interesting about the weight gain. I have put on a stone and am really struggling to shift it. I will make an appt with the Gp to discuss as you advise.

  • This is interesting. My weight is coming back on too and I have started to have symptoms that I haven't had for some time. I was going to suggest to the rheumatologist that I need to increase the dose of Cellcept. But I'm also suspecting that the CellCept has stopped working, which is such a shame because it was an easy drug to take.

  • Hi Purpletop

    Sorry to read your getting symptoms you haven't had for a long time despite Cellcept! Demoralising but a bit drastic to say it's stopped working!. I agree with you to ask your Rheumy to put dose up to see if that works first. How long have you been on it now?.x

  • I've been on it for a year. I got on very well until now. It is very difficult to prove that a drug isn't working, particularly when I'm sero-negative. My indication of disease activity is my gamma GT - it tends to spike sharply when something's amiss. I have emailed the rheumatologist and suggested we increase the dose for now, give it few more months at a higher dose, then see.

  • Hi Purpletop

    What is Gamma Gt?. I'm interested as my inflammation doesn't show in the usual way. I hope your Rheumy agrees to put your Myco dose up and it works.x

  • It is one of the liver function tests, although it is not strictly specific to liver damage on its own. My ALT, another liver function test, is also higher in my case. The hepatologist/gastro can't decide whether it is my liver or my gallbladder/biliary ducts that are affected when lupus is active, both look ok on the scans but blood tests tell a different story.

  • Hi Purpletop

    I really feel for you having 2 Consultants not agreeing with each other about your liver and treatment!. I 've got similar between a Gastro and Rheumy and it does make for extra stress that we don't need!. I guess the dilemma about you is what's causing your problems , drugs or illness as well as which organ as it's rare for the liver to be affected in Lupus!. I hope the worry ends soon for you, the Myco extra helps and thanks for your interesting infoX

  • Me too Lottie. Used to be extremely active, playing a number of sports and attending dance classes. 30 years down the line with this wretched disease what I can say with certainty is that when I overheat my body to a certain degree and for a prolonged period it will trigger a flare. Same goes for sauna and steam room or even a very hot jacuzzi. Defying symtoms and doggedly "pushing through" regardless put me in hospital a couple of times so I know better than to do it again. What I've found OK during periods of wellness is working out in a cool, air-conditioned gym then jumping in a cool swimming pool or taking a cool shower. x

  • Thanks Tigerlily4, I think the heat is have an affect too. I hope the weather is not causing too much trouble x

  • You're welcome :) I'd love to be in the garden today waging war on my triffid brambles, lol, or even better at the beach sunbathing/swimming but tend also now to avoid the sun/increased UV/overheating myself in very hot weather. I just use a good, realistic, fake tanning lotion instead and run a fan indoors. Blimmin nuisance though! I love the beach :(((

  • Hiya

    I used to do triathlon and adventure racing

    Since lupus came along I've found that any high impact activity (eg running) just leads to pain and I injury. I wouldn't say I've flared with exercise but definitely experienced more pain. My upper arms and thigh muscles don't have the strength they once had.

    These days I still enjoy swimming, cycling, walking, Pilates and have found what I describe as the right balance of exercise for me. I do believe that post lupus you have to discover a new limitation to what you can do, but there's still lots you can enjoy.

    If you're flaring, get treatment. That's the number one priority.


  • Thanks Luplass. I think I am still struggling to accept the limitations of Lupus. :(

  • I can understand that. It's not easy.

    You may not have any limitations at all, once the disease is under control. Everyone is different.

    It may just take time (and patience) to get to the point where you know what works for you and your body.

    Keep trying, work and communicate with your doctors, and you'll find the right balance for you. I hope you get back to doing everything you aspire to do. Keep us posted! X

  • Hi there

    I'm in a similar position to you. - again a long distance runner. Started hydroxy 8 months ago and after a flare was finally getting my mileage up as far as 12 miles again. Then a week ago developed pins and needles down my side. Went to gp who spoke to my rheumy but isn't concerned as bloods aren't too bad but like you my limbs are really hurting and I don't know why. I tried to go out yesterday and could do only 1 lousy mile. But no obvious reason. And I'm worried cos I'd got my confidence back to enter some races again.

    The best piece of advice my rheumy gave me was run when you can, and rest when you can't. Good luck.


  • I find too much exercise causes a flare for me, too. It is all about balance I feel. Too much sitting about affects me, too. It seems if I don't find the right balance with everything, I get a flare. The thundery weather here at the moment is affecting me badly. I had to sleep for 2 hours yesterday morning 11.30 to 1.30 after getting up at 7.30.

  • Hi well done for getting on with your life and I am sorry that it has made you feel unwell, I am inclined to think that it was quite possibly exposure to UV rays whilst exercising that brought you down as opposed to the exercise itself. As most of us know that many of us lupies are photosensitive and exercising either outside in good weather or inside in gyms that are fitted with florescent lighting will both be capable of bringing on a flare. I know this from bitter experience and avoid them like the plague, there is no such thing as a nice sunny day, a beautiful clear night yes but wrapping up on sunny days is like walking round having a personal sauna just to avoid flare. The fact that you mention the skin rashes is what makes me suspicious as the skin is always the first thing to come up with me followed by the truck load of other symptoms you mention.

    I sincerely hope that it passes quickly and you have good doctors who can help you

    Good luck

    Madmagz x

  • That is a really good point madmagz. Today has been a tough day with the heat too, my throat is killing and my feet a swollen and painful. GP next week........

  • Hi Madlottie

    Can only speak about my daughter, she has been told to excercise as it helps the lymphatic system drain away chemical build ups etc, amongst a number of other things she suffers from high blood pressure and it's helping with that too. But you can only do what yr body allows it too, rest when you need too reduce the length of time you exercise or change what you are doing but excersie produces those feel good hormones too so if you can do a little it may be beneficial, nothing worse then giving up what you like to make you feel down A little and often may b better than nothing!!

    My daughter excersises 5 times a week she is training for a marathon, runs and cycles and fingers crossed hasn't had a flare up in the last 6!!

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