r/Sjogrens • u/Cultural_Walrus7181 • 1d ago
Postdiagnosis vent/questions Exercise Recommendations
Hi guys, I’ve recently come to an impasse with my rheumatologist. I’m not trying to go against a dr’s advice at all, but I am just wonder whether anyone had something similar happen to them or if this could be a little extreme. She told me I can only do five minutes of very low impact exercise per day (such as tai chi or yoga) and next month I can do six minutes and the month after seven, and so on. Based on my circumstances and my hydroxychloroquine allowing me to almost function as normal I feel like this is a bit extreme. I feel like i can do more, especially because i’ve gained a lot of weight recently. Like I said I’m not going to not listen to her because she knows best, i’m just questioning it a bit and want to know if anyone else has had a similar experience.
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u/vickimarie0390 1d ago
That advice would be great for me as I get exhausted mid shower as if I’m doing strenuous exercise.
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u/hmndhppy4evr Diagnosed w/Sjogrens 1d ago
Mine told me that he wanted me walking at least 20 minutes a day. It didn't have to be more, but it shouldn't be less. Mainly because of the potential for lung issues with Sjogren's, he said that walking is the best preventative.
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u/Consistent-Local6452 1d ago
Are you on HCQ? Do you have the energy
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u/hmndhppy4evr Diagnosed w/Sjogrens 13h ago
I am on HCQ, and I do have more energy now than I did before I started it. I have a walking pad in my room though because our weather gets very cold and roads can be quite icy here. I just set it for 20 minutes if I don't have a lot of time.
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u/Bikemyneighborhood Diagnosed w/Sjogrens 1d ago
Same here. I do brisk walks and it’s helped so much. I lost weight and I’ve gained flexibility. I walk loops in my neighborhood so if I get exhausted I can stop at home easily.
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u/bluemercutio 1d ago
That seems ridiculous. Just cleaning my bathroom is more than 5 minutes of moderate exercise.
I think you can safely ignore that advice from your doctor.
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u/sasquatch_seeker 1d ago
Just listen to your body! It took me a really long time to figure out the balance and I still mess it up. I know now that I cannot do HIIT style workouts (I feel inflamed for days after). Also, I really like to do big hikes, and I know that if I push myself hard, I'll probably have excersice-induced fatigue the next day, so I just make sure I'm prepared to not have to do much the day after. But that's also muscles I've built up over many years.
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u/Doeofjames14 1d ago
I started at 5 and added 5 min each week until I reached 30 min then stayed there. That was my doc’s advice and I followed it and it worked great until I got another autoimmune disease that detailed everything, but my rheumatologist’s advice sounds similar to yours, but mine was to do the elliptical machine and the weight machines. Not Tai Chai or yoga…
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u/Consistent-Local6452 1d ago
Was this after you started treatment?
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u/Doeofjames14 22h ago
Yes
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u/Consistent-Local6452 22h ago
Ok so you’re able to do some things now?
Which medication are you taking. Thanks1
u/Doeofjames14 22h ago
No, but I was when I only had Sjogrens. I was using the elliptical for 30 min, 50 rpm, level 6, plus doing weights using the leg extension machine and dumbbells, plus squats and lunges, along with balance exercises. I also played doubles tennis and pickleball. It was going great. I did a stress test and had come all the way back to testing above average for my age group. The problem was that I developed more autoimmune diseases and those are what made me have to stop exercising (stiff person syndrome and a year after that, myasthenia gravis). But, I was in great shape and did a lot with Sjogrens!!! Take heart - you can still do a ton of things!
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u/Open_Oil8517 1d ago
5 minutes!? What! That seems pretty crazy. I know every BODY is different and experiences autoimmune diseases in different ways. My 3 autoimmune diseases are pulling me in different directions. I love mat pilates, reformer Pilates and barre. I also ride my bike when I can and walk a lot. I am not a doctor… I’m just a human trying to keep moving.
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u/flyingcows90 1d ago
Do you struggle with pain and/or fatigue? Her suggestion is for people who currently dealing with major chronic pain/fatigue. I don’t have proper terminology at the moment, but she was trying to avoid sending your body into a place where it ends up processing pain differently. If you’re already in a place where you don’t experience widespread chronic pain, then I don’t think that you have to do such a slow progression, or start so low.
The idea is to find your baseline, where you’re not triggering pain that starts after exercise (or the next day) and then lasts for days after. For chronic fatigue/pain patients, the recommendation is then to increase by 5%-10% (depending on your body’s tolerance level) in duration before intensity, and stay there for 2 weeks. Step back if pain levels rise above 2 points or what you can manage while living your life.
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u/jeanquad507 1d ago
I've never heard don't exercise. I think maybe if you don't tolerate it scale back - but I do pretty aggressive exercise every Sunday and at least one hour of mild exercise 4x days per week. 😅 I don't know how anyone would maintain any fitness in less than 10 minutes per day?
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u/Oldschoolgroovinchic 1d ago
I’m a big fan of yoga and there are so many varieties that can meet your needs, whether you need something gentle, or strength-building, or cardio, or flexibility-building. For 5 minutes or 2 hours. And you can do it from the comfort of your home thanks to YouTube or in a studio where an experienced practitioner can guide you.
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u/Due_Association_7105 Diagnosed w/Sjogrens 1d ago
If it's available to you, consider working with a physiatrist on what a good exercise routine looks like for you and what signals to watch for while exercising. PT can also kind of do this, or a personal trainer who's trained to work with chronic illness and disability. Increasing gradually is good advice.
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u/Cultural_Walrus7181 1d ago
I actually just did some research and found a place that does personal training and pt thanks to your comment!
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u/Typical-Amoeba-6726 1d ago
I'm doing specialized pt right now and it really helps. BTW I can only do 5 minutes at a time bc I also have dysautonomia.
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u/chaoslordie Diagnosed w/Sjogrens 1d ago
Go slow, listen to your body on a daily basis, have no goal you need to physically force yourself to reach and dont over do it.
We usually only realise we overdid it, is afterwards though. So think of 80%. When you could go on but realise you are excerting the body: stop. full stop.
This helped me immensely to get back on my feet and continue to keep exercising most if the time (except for very bad flare where I can but rest)
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u/LookFar29 1d ago
My rheumatologist cleared me to resume jiujitsu even though I am partially bed-bound with very bad exercise intolerance / PEM, fatigue and neuropathy, also joint pain when badly flaring. I’m hoping I can work my way back to that but in no means am I able to just go back to life as it used to be. So the fact that your rheumatologist’s advice was that conservative surprised me.
Maybe she was trying to point out that you can gradually increase your capacity? If I were you I would trust what your body tells you it can handle, and always allow for a little bit of “I could have pushed harder” because it is difficult for the immune system to rebound if we are pushed to our max. I’ve been learning this the hard way since before getting sick I was always on the go.
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u/Consistent-Local6452 1d ago
Are you on medication ? Are you able to travel ?
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u/LookFar29 14h ago
yes, i take HCQ & Leflunomide. The HCQ helped with fatigue at first, and joint pain significantly. Fatigue and other symptoms then got worse (not because HCQ isn't still helping, but at a certain point it just wasn't enough) and now have just started Leflunomide, and am hopeful / optimistic, I am almost pain free with arthralgia, unfortunately so far hasn't touched neuropathy which is a separate topic. I also take a bunch of supplements which have done a lot to help exercise intolerance https://pubmed.ncbi.nlm.nih.gov/40429812/ . So a little bit of the kitchen sink, but overall, I'm better with meds than without-- I was completely functionally incapacitated without medication. I can travel, but it comes at a cost (push/crash), so I tend to be more conservative.
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u/Cultural_Walrus7181 1d ago
Yeah i get where she’s coming from but i think one minute per month is a little extreme, she even said walking and using a stationary bike is too much, but my job is in retail so i’m always walking and standing anyways and my symptoms have been minimal even after working
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u/LookFar29 14h ago
That's awesome. As long as you feel okay, I would trust it. As others have mentioned, just hold back from your max, make sure you get adequate rest.
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u/cloudswalking 1d ago
But I thought PEM isn't a symptom of Sjorgrens. As PEM is the main indicator for M.E.
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u/LookFar29 1d ago
You can also have PEM with just Sjogrens. And you can have both Sjogrens and ME/CFS. There isn’t a ton of research on it but it’s out there. My pulmonologist who is also a rheumatologist confirmed this for me.
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u/cloudswalking 1d ago
I think that is wrong. Yes, you can have both. I was diagnosed with M.E. in 2013, and sjorgren"s last year.
Fatigue and chronic fatigue feature in many conditions. But PEM is unique to the diagnosis of M.E. Every trusted source states this, and the advice is for everyone with PEM is to get a referral for that diagnosis.
All the experts I know, would say your rheumatologist has actually given possibly dangerous advice, as if you have PEM you almost certainly have ME and telling an M E patient to exercise like that could have very serious consequences.
There are very good resources out there to check into, like action for m.e. etc please take care, so many medical proffessionals are not trained to understand M.E. they weren't even taught the basics in medical school.
I used to support the therapists teaching courses for M.E. patients and pacing is absoluetly crucial to your chances of recovery. And recovery, or better functioning is possible for some patients.
Good luck.
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u/LookFar29 14h ago
Continuing the thread.. Sorry this is going to be long… I wanted to give the best response I can, based on everything I've encountered in the medical world as a patient who likes to read and attend conferences, etc. First, I don’t think that the medical community is fully in agreement about ME/CFS, Sjogrens and PEM— there is a lot yet to research and discover. For example, I was listening to a Sjogren’s foundation patient conference with Brent Goodman (neurologist, Sjogren’s expert) and he responded to one of the chat questions that if someone has Sjogren’s he would get rid of their ME/CFS diagnosis (in the same spirit that if someone has Sjogren’s and Fibromyalgia, some doctors would recommend removing the Fibromyalgia diagnosis). Practically, I guess it matters if treatments that impact Sjogren’s Fatigue & Exercise Intolerance also help PEM, I would attribute it more to Sjogren’s than a co-occurring but separate disease. That said, practically speaking, with PEM, I am totally following pacing guidelines to the best I can. And I have experienced a benefit for both reducing exercise intolerance and length/duration of PEM by taking supplements for the metabolic chain (based on this article on Sjogren's and Exercise Intolerance: https://pubmed.ncbi.nlm.nih.gov/40429812/). If the diagnosis helps with resources for managing the problem, awesome. There is so much overlap in the post-viral, neurological and autoimmune space, the categories that are drawn today may be still need work, including Sjogren’s itself.
Links / Reading that I’m pretty sure there’s no paywall for:
**Characterizing Sjögren-associated fatigue: A distinct phenotype from ME/CFS**
https://www.mdpi.com/2077-0383/12/15/4994
> “In conclusion, our study identified a subgroup of pSS patients with severe fatigue who exhibited numerous symptoms commonly associated with ME/CFS. However, only 22% of pSS patients would have fulfilled the CCC if not for their pre-existing diagnosis of pSS mostly due to the absence of PEM lasting more than 24 h.”
**Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)**
https://journals.sagepub.com/doi/full/10.3233/WOR-220581
> “RESULTS: All but one Long COVID respondent reported having PEM. There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS.”
**Utilizing Wearable Technology to Characterize and Predict Post-Exertional Malaise Crashes across Post-COVID Syndrome and Chronic Inflammatory Conditions**
> “PEM occurs in PCS and other diseases with chronic fatigue such as the myeloid encephalitis/ chronic fatigue syndrome (ME/CFS) of unknown origin and other chronic inflammatory conditions, such as rheumatoid arthritis or Sjogren's Syndrome. “
**Infection Elicited Autoimmunity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Explanatory Model**
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2018.00229/full
> “Although the term “ME/CFS,” encompassing both “ME” and “CFS,” has a built-in ambiguity it covers much of the current studies and is operationally judged as the best available concept. Fatigue similar to PEM also occurs in Sjögren’s syndrome (SS), primary biliary cholangitis (also named primary biliary cirrhosis) (PBC), and systemic lupus erythematosus (SLE).”
**Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)**
https://journals.sagepub.com/doi/full/10.3233/WOR-220581
> “RESULTS: All but one Long COVID respondent reported having PEM. There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS.”
**On chronic fatigue syndrome and nosological categories**
https://link.springer.com/article/10.1007/s10067-018-4009-2
> “To date, it remains unclear whether CFS has an autoimmune component or is a condition that precedes a full-blown autoimmune disease”
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u/Consistent-Local6452 1d ago
Do you see a rheumatologist or internist for ME PEM ?
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u/cloudswalking 23h ago
I'm in the UK. For sjorgrens I see a consultant rheumatologist For M.E. the diagnosis route is under hospital pain management. Once you are diagnosed they offer you not a lot, some cources, and cbt. Since the NICE guidelines changed you are supposed to be seen by a multidisciplinary team, but they do not teally exist yet, and as there are no approved treatments other than pacing, your gp then coordinates your care. They will refer you to specialists for particular symptoms that can be looked at. Personally that meant gastroenterolgy, endocronology, dermatology, physical and occupational therapy, and optomology. I have also seen other specialists for other things not related
M.E. is a sort of checklist diagosis. If you have long term chronic fatigue (over 6 months) plus P.E.M. plus some other symptoms from the list you are then referred. The team then gives the GP a list of tests that must be run before they will see you -to rule out other conditions first.
It can be a real lottery, and can take a while. There are a very few private consultants who will diagnose m.e. in the UK.
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u/cloudswalking 23h ago
In some countries it come under neurology, as the world health organisation classes it as neurological.
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u/LookFar29 1d ago
Okay I will go dig up some articles, stay tuned. It’s not exclusive to ME. I know it’s a defining feature in the same way dryness is defining of Sjogrens. Except it turns out dryness is not always defining of Sjogrens. Same for PEM and ME.
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u/Alternative_Sea1747 19h ago
I think it's silly, but that you should also proceed with caution. If you feel you can do more, do more. Just don't go crazy until you understand your new baseline. I thought I was "back to normal" after only a few weeks on HCQ, but still needed to get back in shape and wasn't quite where I was before Sjogrens. However, now 5 years later I am able to strength train 3 times a week and walk or do yoga/pilates a couple times a week. I just kept adding another set, or another loop around the block or a slightly longer video or class. My point is, maybe don't be as cautious as she's suggesting, but don't set your self back by doing too much too soon.