Hey, I have recently been diagnosed with lupus after suffering with joint shin pains for 9 months. I used to do sport, especially the gym but haven’t done any exercise since the pain. I wonder if there’s any tips on if I can get back to exercising or managing the pain, I haven’t had a chance to speak to rheumatology yet because still waiting for a referral but it will probably take long and I am struggling with having to wait to see someone for advice while feeling low about not being able to exercise.
Many thanks
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Yellowsun111
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Hi Yellowsun111, I have recently taken up some excercise and I have started with swimming, it doesn’t seem to bother any of my joints and muscles. I don’t go with the intention of doing huge amount of lengths or with great speed.
When my arthritis was really bad I was often referred to the hydrotherapy pool at my local hospital and immediately felt the benefit, but that doesn’t seem to be available at present.
At present I’m away in Spain for 5 wks and I’m swimming and walking every day we have found a natural thermal pool in the hills and I’m going to that as much as possible. But with Lupus this is a double edged sword as the sun has been shining every day so I have to cover up and slap on the sun cream.
But the benefits of the heat on my arthritis is amazing. At least my joints love it.
Hello! I don’t know how old you are and how physically fit you’re feeling but I’m 26 and I had a huge lupus flare up in August and that’s why I have been diagnosed. Since then I’m still not physically back to normal “ish”. But I feel much better and I go to the gym to do cardio for 30min as many days in the week as possible, on a climb mill. I want to start doing weights again but I still have pain in my knees and my arms and hands. I will definitely slowly get back into it. Just start with really light weights and see how much I can do without hurting myself. You need to use your common sense when you exercise and if you feel like you’re ready to do something then try it, if you feel like it’s too much, it hurts a bit or you’re even too tired then I suggest leave it for another day. It also reflected on my mental health that I can’t get back to doing heavier weights like I loved to do that before but you need to stay strong and I’m with you on this <3
Hello, I would say continue doing what you can! It's important to keep physical activity up. For me personally I had to change my expectations about what sports/exercise I could do without making my symptoms worse - it's a massive trial and error process. I find that I get worse if I over do it, however, if I don't do any physical activity that also makes my pain worse. For example if high impact sports like running, football, basketball causes your shin pain to worsen, then maybe consider changing to a lower impact sport like swimming, walking, cycling or yoga. I also find that stress reduction excersises like meditation and diaphragmatic breathing help.
Hiya Yellowsun111, I am sorry that you have pain in your shins. I have Lupus and Hypermobility etc but I always exercise. It has made me keep my muscles strong and with flexibility, mobility and balance. I find that if I don't exercise then the pain is worse, especially in my hips and knees. I used to get pain in the muscles along side my shins. It feels like shin splints, I changed my trainers and made sure that my toe wasn't been pressed or restricted as they would go numb like they are a dead piece of meat 😅. I only buy HOKA trainers now as they feel like I am walking on clouds. Also I self referred myself to Podiatrist and I needed special orthopaedic in soles. All those things help, also I used to go to the physio once a week. I had to stop high impact classes like Zumba, body combat, attack but do different classes and have rest days if I needed it. Stretching before and after class is important and drinking water. Massage rollers and massage all aid recovery. Pilates is also great for your body. I do it and teach it and it definitely helps me ☺️. I hope that answers your question as muscles quickly become waste away if you don't use them . Believe me I still do suffer from pain in my knees, hips, shoulders, feet , hands, migraines and my body can feel broken like an elephant has trampled on it and my head wants to explode but I push myself to go every week 7 times a week and it helps me feel better mentally. 💪🏃🤸🏋️⛹️🚴🏊🧘X
hi and welcome to the group, who are friendly - I can’t exercise like I used to but started doing Pilates so quite gentle or maybe you could do some yoga xx
When I was first (mis-)diagnosed, a friend who had bad rheumatoid arthritis told me - you will get used to the pain. At the time I thought that was nonsense, but it turns out to be true. Now, pain in knees, ankles, shins and feet does not stop me walking whenever I can as far as I can. I have learned the technique of nordic walking with poles which helps take the weight off, and is a good all round exercise for all muscle groups (although sometimes I have to wear a wrist support to be able to hold the poles). I also swim out of doors year round.
As others have said - exercise is really important to help you live well with lupus. You are dealing with a lot at the moment, because you are newly diagnosed and this is scary and life changing. Take it slowly - it's easy to overdo things and then be so knackered* you can't function, but do try to get out and about when you can. Good suncream and a hat are vital except in deepest winter (and for some of us - even then). Before I got ill, I swam several miles a week and I remember being very frightened, angry and resentful when I found I couldn't do it - so I guess that could be something like what you are feeling right now. Try small amounts of exercise - swimming is low impact for sore joints, bones and muscles - and go from there. Good Luck!
Hi Yellowsun111, you've already had some absolutely top tips already.
The first thing I'm going to say from experience is Listen to Your Body. It will tell you what you should and shouldn't do. Also speak with your consultant and ask them what your body can take.
When I was first diagnosed, I tried to beat Lupus and pushed myself. Oh what a mistake that was. Ouch!
Swimming had been mentioned several times. And I guarantee it's the best. I'm buzzing after each swim. And whereas normally I'm totally shattered in the mornings, the morning after a swim I'm buzzing and am up at 5 - no fatigue at all.
If you feel you can, maybe just get in the pool, if for nothing more then just to have a very gentle swim to get you started
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