Hi, sorry I have looked but can't find a page about autoimmune diseases/connective tissue diseases so I hope it's OK to post here? I joined when I suspected I might have Lupus but was then diagnosed with Undifferentiated Connective Tissue Disease, so I have traits of Lupus but not full-blown Lupus (thank goodness ♥️).
I'm looking for advice on running with a connective tissue disease. Exercise is meant to be good for managing it but also seems to flare things up. I finished Couch to 5k this past week, I thoroughly enjoyed it which was so surprising for me and it was relatively easy - until the last week (3x 30 minute runs - very very slow runs in my case) which has left me so seized up, and not just in an exercise way, but in an 'autoimmune way' - I'm sure you'll know what I mean as fellow sufferers!
Any tips on how to jog without triggering a flare up?
Is this because exercise boosts the immune system, and with autoimmune diseases we shouldn't boost our immune systems? I am starting to think I should research this because recently heard that people with autoimmune diseases shouldn't take ashwaghanda as it boosts the immune system and can lead to flare ups. Makes sense I guess, but surprised I haven't heard of this before from my doctor?
Thanks
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AcheyAnnie
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I have similar thing swimming. There are days when everything is impossible. I don't sink but I tire so easily.
Exercise is generally anti-inflammatory so helps.
I trying to figure out how to optimise.
Getting creatine kinase (CK) blood test can check if inflammation is affecting muscle, and too much exercise is not helping.
As we are UCTD they may not know what is happening foe us.
Also for me it now exercising avoiding the sun. Strong light comes in through the ceiling at the indoor pool I use. The lighting around the pool is also very bright. I get a malar rash, and it took me a while to realise that backstroke indoors on a sunny day under the ceiling light with sunshine shining through was causing it. Now swim in the evenings instead and fine.
Ah really interesting. I get a malar rash too although not for a while luckily. I really need to watch it in the sun, it's not in the forefront of my mind but it should be.
Such an annoying vague diagnosis! Lots of trial and error I guess. I am going to go to a proper running shop to make sure my shoes are as good as possible.
“RUNNING” is not GOOD for Lupus - it can aggravate JOINTS, LIGAMENTS, TENDONS- that can cause FLARES in joints but cause LUPUS to TURN ON & attack other BODY SYSTEMS.
Low Impact exercises are better to help us not Trigger Flares & damage Joints, Cartilage & Ligaments- we are more vulnerable & the IMMUNE RESPONSE could trigger a Flare elsewhere in our Body. 😩💜🙃
We don’t know “till it happens to us” -
I didn’t think sun ☀️ bothered me- I found out the hard way - COULDN’T breathe chest hurt, Migraines, EXTREME FATIGUE, WEAKNESS all over, etc …
Physical activity is super important for all chronic conditions, it just varies on the type, frequency and volume that your condition will allow you to manage.
If you enjoy jogging then definitely keep it up. It's all about finding that sweet spot: too little and you won't get the benefits; too much and you'll feel worse.
For me personally it's one big experiment with how much exercise my body can tolerate. Basically, I am constantly having to exercise with varies different chronic injuries. You are the expert of your own body, so make sure you listen to what it's telling you. If you go for a 3 mile jog and feel terrible for the next couple of days, then you know that 3 miles was just a little too much. In the days that follow maybe do some restorative yoga/breathing exercises to allow the body to de-stress and relax.
Chronic disease is a constant stressor on the body. Exercise is also a stressor on the body, but in the correct amounts this is a good kind of stress, also known as'hormesis'.
Ashwagandha is an adaptogenic herb, so in theory it should both boost and lower the immune system as needed. However there are other reasons why it may not be good your someone with autoimmune disease. It is a member of the nightshade plant family, so if you have a sensitivity to nightshades - which many people suffering from autoimmune disease do - then you're symptoms may get worse rather than improve.
As with everything, it's all about experimenting and finding what works for you as an individual.
If you or anyone else on here would like more info on health and dealing with chronic disease then feel free to follow me on Instagram @healthcoach_hamish or Hamish Scott on Facebook.
P. S never be surprised that you haven't heard something from your doctor -most of them still live in the stone age and believe diet and lifestyle don't make a difference 😆
Ah super interesting, thank you! I have just yesterday come accross the ‘avoid nightshades’ advice and now you mention it too - definitely will research. Have just cut out gluten and potatoes are my absolute fave so that will be sad 😢 really appreciate your reply - this is a minefield!!
We “can Damage Joints” w/Jogging (it’s even hard on people without Lupus and affecting their Joints over time with Legs/Feet/Hips pounding ground.
In Lupus, Trigger FLARES can be triggered without knowing it, but it was the Stress on Body that “turned on a FLARE” in our other BODY SYSTEMS or Organs. Our BODY sends an immune RESPONSE to REPAIR possibly “OVERUSED joints”, etc.
- GOOD Food for thought - and should ALL be discussed with a Person’s Rheumatologist.
A FLARE can happen “several days” after SUN EXPOSURE, a VIRUS, SURGERY, STRESS from overworking or FAMILY RESPONSIBILITIES, taking CARE of SICK “Loved ones”, etc - so RUNNING/ Jogging can be a few days before causing a FLARE- 💜
NIGHT SHADE VEGETABLES - I have heard for years and I try to Avoid too. 😊💜😊
Yet, they are not yet on the Official List of Lupus Food Triggers, like: ALFALFA SPROUTS & GARLIC,
I’m going for a run in a minute! I think it might kill me today though!
I’ve only started recently but most runs I’ve been really surprised and pleased that I managed it! One time I was wiped out for the day and I suspect it will be the same today. I’m going to give it a go though!
I always drink a few pints of water before I go, which makes a huge difference, otherwise my blood pressure plummets!
Like others have said, try to find your limits and don’t push yourself too hard. Also wear the suncream!
As an aside, I used to be UCTD but now Lupus / Scleroderma! It doesn’t feel like anything has gone full blown though - I actually feel better than I did! UCTD is a valid diagnosis so don’t feel like an outsider, if your symptoms are lupus - y then stick in the lupus forums!
Thanks, I appreciate that! Already had a lot of 😵💫 looks when mentioning UCTD and it’s such a vague weird thing to describe - constantly feel like a hypochondriac!
Drs don’t tell us a LOT - that’s why “we are LUCKY” to have EACH other to help RESEARCH 🤗💜😊
RUNNING / Jogging is hard on any Person’s JOINTS - …..so with LUPUS, we should not do it at all 💜
Lupus OVERREACTS to the STRESS & Inflammation on JOINTS, causing it to TRIGGER Flares (ie, joint inflammation) & once it starts, the “body” might attack other areas of Body too.
Swimming, Biking, Yoga (easy stretches), Walking, etc - no heavy Lifting of Weights, or STRENUOUS Exercises that could activate a Flare or Irritate Joints -
We are sorry to hear you are struggling, we would always recommend discussing any new or worsening symptoms with your GP, consultant or Rheumatologist.
Please see attached a blog article from our website written by a registered Physiotherapist Louise, she has SLE and discusses how she manages exercise and symptoms with mindfulness and other methods.
Good morning AcheyAnnieHow are things 5 months on?
Found your post when doing some research after having a flare up following some gym work. I also have UCTD diagnosed a few years ago. I used to run but had to stop so walk a lot. Have returned to gym and obviously did too much so had a flare up. I had some free personal trainer sessions but she clearly didn't get it and was pushing.
Plan to start slow and steady again in the New Year.
Would love to hear about anyone else's gym regimes as I do need to build muscle.
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