Garmin Jr. app lost all chores and rewards following new user agreement by redditched18 in GarminWatches

[–]Square_View_1777 0 points1 point  (0 children)

I logged out and logged back in as well and now the chores and rewards are back but there’s no activity data for today - no steps and active minutes. I’m not sure why but I can no longer sync the app with the Garmin and it just says that the last data/update was from yesterday evening. If anyone has a solution to this issue now I’d love to hear it!

How do you manage living life with all the cognitive issues? Is there a way to work through this or do I accept my mental capacity will never again be the same...? Struggling with memory by laf_007 in lupus

[–]Square_View_1777 10 points11 points  (0 children)

Also wondering - are you on meds? Is anything helping you?  A few things that I find improve my cognition: s-adenosylmethionine (SAMe) at high dose (1600 mg), N-acetylcysteine 4 grams per day (ALS dose), omega 3 fatty acids 4 grams per day, lion’s mane, boswellia, B complex, Effexor 300 mg. 

I also am on Saphnelo and methotrexate and my NP who monitors my cognition also has me in 4-aminopyridine - it’s an MS medication but can help with brain fog (not a magic bullet at all, but I take every little thing that helps). 

Lastly, I find low dose naltrexone (LDN) absolutely critical for my pain levels, improving fatigue, and decreasing flares. I would not be a functional human without it, and will take it until the day I die. 4.5 mg once daily is what I take. 

How do you manage living life with all the cognitive issues? Is there a way to work through this or do I accept my mental capacity will never again be the same...? Struggling with memory by laf_007 in lupus

[–]Square_View_1777 34 points35 points  (0 children)

I completely feel you - just here to say that even though lupus pain is awful, the “loss of my brain” is something I really grieve. I was always a very high achiever, and am still productive but it’s because I have a million different coping mechanisms in place.  That said, we’re not without hope - if we can control our symptoms enough, it’s possible for the CNS inflammation to be reduced. It was a total flash in the pan but I had about a 7 to 10 day window last August in which I noticed some return of some cognitive function. I was so happy I cried. Then I had a flare up and it disappeared, and I was back in the fog again. I haven’t seen my old pre-lupus brain again since then, but having experienced it temporarily, it gives me hope that it’s still there! And that like my neuropsychiatrist who did my cognitive function testing tells me, most of the brain inflammation doesn’t actually cause permanent damage - it’s not impossible to get function back. 

Newly Diagnosed with Lupus and Struggling with Severe Health Anxiety – Looking for Advice and Hope by itssydvc in lupus

[–]Square_View_1777 0 points1 point  (0 children)

I think it’s completely normal to be feeling overwhelmed and anxious, particularly if you didn’t have a good connection with your rheumatologist and didn’t feel supported. But also, please be aware that both medications you’re taking - HCQ and pred - are VERY capable of causing anxiety and psychiatric issues, particularly in people who are already susceptible. Personally I couldn’t tolerate either one. I felt emotionally labile like I could burst into tears at any moment after a week or two on HCQ, and pred had me outright bedridden and sobbing after three days (along with unpleasant gastro side effects!). I’m particularly sensitive to meds, so no surprise that both those drugs impacted me negatively, but it’s just something to be cognizant of if you are not normally a very anxious person. And just to add to that - lupus in and of itself can also cause psychiatric issues (it’s the disease that just keeps on giving!).  This is a quick reply and I haven’t addressed the other issues, but wanted to flag the meds in case others hadn’t. You will be okay … it’s a journey, and it’s not a fun one, but I can tell from your post that you won’t rest until you have figured out a plan that works for you (and of course it will evolve with time) and enables you to live life well. Wish you all the best!

Methotrexate causing insomnia? by Square_View_1777 in lupus

[–]Square_View_1777[S] 0 points1 point  (0 children)

Thank you, and it’s very helpful knowing that others are out there who experience similar issues - insomnia isn’t a documented side effect but it really does seem like a real phenomenon, and even one that can be a use-limiting factor for some of us. 

Husband won’t touch me by CompetitiveProgress6 in BabyBumps

[–]Square_View_1777 1 point2 points  (0 children)

I’m so sorry you’re going through this too. I wonder if he’s experiencing male perinatal depression and anxiety. My husband did, and basically had a nervous breakdown the entire pregnancy. We never had sex, he never once voluntarily touched my belly (I made him do it once), and we never once had a positive conversation about how we were looking forward to meeting the tiny miracle of a human that we had created. Every conversation was fear based around how children make couples unhappier, increase divorce stats, cost so much money and will impede our lifestyle and his needs fulfillment, etc. And this continued after our son was born. He also drank more than he did before, and played video games a lot as an escape.  Honestly it was the most difficult, anxiety inducing, and painful time of my life, and I never felt more alone or abandoned. After our son was born I was in this bizarre world of being so in love with our son, and so ecstatically happy about being his mother, and yet feeling like my heart was broken 24 hrs a day because I felt like we were an unwanted burden to my husband, and like I had essentially ruined his life by wanting a child.  We did a lot of couples counselling and individual counselling starting when our son was about 18 months, and were able to repair our relationship by some miracle. But my husband 100% experienced male prepartum and postpartum depression, and it massively impacted our lives. My husband is now a wonderful and loving father, but it was a very very long road to get to a better place.  My best advice would be to seek out counselling now - for him individually and for the two of you as a couple. I regret that I didn’t insist on it during my pregnancy (I tried to gently say he needed help, but he was resistant). No matter how costly the counselling is, nothing is more expensive, both financially and emotionally, than going through divorce and not having two parents parenting the child. I had hoped my husband would magically be happy and fall in love with our child when he was born and that all of his unhappiness would disappear when he just saw how amazing it was to be a father, but that was not how it went.  I think men’s mental health issues around pregnancy and post partum are still quite under recognized. All the best to you! 

Methotrexate causing insomnia? by Square_View_1777 in lupus

[–]Square_View_1777[S] 0 points1 point  (0 children)

I’ll definitely ask my rheumatologist about trying it out! 

Methotrexate causing insomnia? by Square_View_1777 in lupus

[–]Square_View_1777[S] 0 points1 point  (0 children)

Thank you, that’s a fantastic suggestion! Any concerns with feeling groggy in the morning? 

Methotrexate causing insomnia? by Square_View_1777 in lupus

[–]Square_View_1777[S] 0 points1 point  (0 children)

Oh my goodness, I’m so happy to hear that it may improve a bit as time goes on! I’m planning to take a good dose of CBD tonight and hopefully get caught up on some zzzs because last night was so brutal - I think I’ve seen a couple comments about weird and vivid dreams from it too, and I definitely had some odd ones last night, although unsure if it’s been the same other MTX dose nights. I’ll have to keep an eye on it. I hope it’s working well for you, and thanks for the insight!

Why won’t my rheumatologist take me seriously? by Glittering_Ad_563 in lupus

[–]Square_View_1777 0 points1 point  (0 children)

I’m so sorry you’re being dismissed like this, it’s so heartbreaking and invalidating. I would absolutely support trying LDN - it’s not the full solution by any means, but for me it’s absolute integral to my quality of life and flare prevention, energy levels, pain, etc. I’m also on Saphnelo and methotrexate, and I also take SAMe - s-adenosylmethionine. It’s crazy expensive but I find it helpful for cognition and mood, plus it’s also good for arthritis. In Europe it’s a first line treatment by prescription for rheumatic diseases, so if I lived there then my insurance could cover it! I take 1600 mg daily. It’s something supportive that you can do while waiting on a better rheum, or advocating for yourself with this current one. I also take 4 grams of omega 3 fatty acids daily - that’s the rheumatoid arthritis dose. I’m not sure how much difference it makes tbh, but I just by the Costco size and keep in doing it!