Rheumatoid Arthritis (PsA) flare and feeling so down. πŸ˜” Any other Bees with RA?

posted 10 months ago in Wellness
Post # 16
Member
960 posts
Busy bee

Just as I shared that I have been feeling pretty alright, this morning I woke up feeling my joints joined the pain team. Hopefully it’ll go away soon. Big hugs and hope you’re feeling better.

Post # 18
Member
737 posts
Busy bee
  • Wedding: September 2018

Shesaidyes :  I tend to go into “hibernation mode” when I’m having a flare up, which does make it worse emotionally. But it’s impossible to do anything that isn’t directly related to keeping myself alive. Even replying to texts feels like a huge weight. Do you have friends who are good listeners? I always feel a bit guilty weighing my emotions on my husband during flares when he’s already doing so much to keep life going while I seemingly do nothing.

KatzeB :  hope your flare up isn’t too bad! I don’t think the cold is helping anyone much at the moment either. Sending speedy recovery vibes!

Does anyone use capsaicin cream? I got prescribed it by the pain management consultant. I used it on Sunday evening and when I went for a bath on Monday evening it felt like my skin was on fire! It’s usually prescribed for arthritis so I was wondering if someone had experience of why my body rebelled against it?

Post # 19
Member
370 posts
Helper bee
  • Wedding: City, State

I have rheumatoid arthritis and am in a flare currently, so I truly understand!

Post # 21
Member
737 posts
Busy bee
  • Wedding: September 2018

Shesaidyes :  ah thank you. My husband is a star! I know it’s all on my head that I feel useless, but that doesn’t help much when I’m, well, feeling useless. I think it’s the capsicain and water that makes it burn, but I did have a moment where I thought “If I can’t even have a hot bath any more I’m giving up!”. Fortunately it was ok tonight but I haven’t put it on since Sunday.

I’m guessing your husband is aware you’re flaring up now? I get it’s so hard to let the walls down but I’m sure he will want to know how to support you. I think we just need to be more specific in what helps – he knows how much of a badass you are 99% of the time, so he won’t want to undermine you now. Sometimes you just need to let them know it’s ok for them to ramp up the help! Fingers crossed you start getting better soon!

Post # 22
Member
960 posts
Busy bee

Shesaidyes :   blackparadebride :   ukbea :  thanks a lot, bees! It was a nightmare yesterday and this morning waking up to a body which felt like a trainwreck plus quite severe IBS. I guess fibro and RA flared together. I stayed home today as the plumbers were here to sort out the leaking pipe so I did nothing much aside from episodes of House MD and my valentine’s day project. I’m probably going in to work on Saturday to replace the time I missed today. Wrote a message to my rheumatologist and she told me her RA patients seemed to be in more pain the past few days. My SO is trying to be considerate but he sometimes forgets. I guess I have overshared how I feel a lot of times. The pain makes me grumpy and feeling useless more often than not. Food-wise.. we are trying to have gluten-free food as often as we could but this past week had been bread, cookies, etc. Need more self-control. Keto diet seems great but I’ve to admit it’s too much for me. I like my rice! So we replace white rice with brown rice – instantpot helps!!! And SO is taking lead in making menus for the week before grocery shopping. We’ve tried some pretty good salmon dishes. And mackerel too. One of the weirdest food/drink was tumeric hot chocolate. They said tumeric and ginger are great anti-inflammatory food. So we have a supply of those at home all the time.

Post # 24
Member
370 posts
Helper bee
  • Wedding: City, State

Shesaidyes :  thank you! I’m currently not sure if I have a cold because of the RA flare, if I’m flaring because I have a cold, or if it’s not actually a cold but part of an increase of the flu-like systems as a part of the flare!

Post # 26
Member
960 posts
Busy bee

Shesaidyes :  we do eat more curry dishes (with lots of tumeric powder), and trying to take more green leafy vege. Asian dishes are usually low gluten or gluten-free. There are a lot of anti-inflammatory recipes out there too. My love for crisps definitely doesn’t help. SO banning all forms of crisps at home seeing me unwell the past few days. It’s hard on him, as I’m really unhappy being unwell and feel really insecure. It’s challenging for our relationship right now… I do have some kind of skin problems over the years, and my doctor’s recommendation of hydrocortisone helps. But my rheumatoid factor was higher than normal so rheumatologist said it’s RA

blackparadebride :  do we get flu-like symptoms during a RA flare-up? I wasn’t feeling well (runny nose, low-grade fever, a bit of sore throat) prior to this. And wham! It hurts everywhere!

Post # 27
Member
960 posts
Busy bee

Shesaidyes :  hope you ladies are well! Spring is here, dampness and rain… Woke up this morning feeling really sore and saw the sky is spitting down tonnes of water. Is it normal when it’s raining people with RA/PsA feel it in the bones? I’m tapering down Prednisone so wonder if it’s that.. need some advice so hitchhiking this thread.

Post # 29
Member
960 posts
Busy bee

Shesaidyes :  heya.. thanks for your encouragement! And good to know things are better for you now! I am tapering prednisone down to see if thethe sulfasalaz has taken effect or if it actually works for me. Plaquenil did sort of work but since im allergic to it I’ll have to make do with SFZ. Will see what my rheumatologist says the next time i see her. Maybe i have been stressed, and been eating quite a bit of junk. That affects my body quite a bit too.

Germany is nice! Was in the South West region and in Köln. We do hope to see Berlin and Münich at some point. We are heading back to UK for my graduation (unfortunately we postponed our wedding which was meant to happen a week after graduation ceremony πŸ™ ) then head over to Sicily for a few days (was meant to be honeymoon location but heck, we’ll just go for a vacation to see Byzantine churches and Mediterranean sea, just because..). It’s worrying that im not much in control of my body really.

Hopefully when the weather warms up in Midwest I’ll feel better…

Post # 30
Member
13 posts
Newbee
  • Wedding: April 2021

Originally was diagnosed with RA at 13 and then with Anklyosing Spondyltis at 19. It is horrible to feel swollen, sore and in pain for weeks at a time, and I can absolutely relate. I tried NSAIDS, Humira, Enbrel, and Methotrexate with very little relief. Some days I literally didn’t leave bed. 

I remember being shocked when I would have “good days” because I was so constantly hurting. Just  be gentle with yourself during flares, let others help you and to be honest with your doctors when something/many things arent working. Advocate for yourself and don’t let experts or ANYONE talk down to you or tell you to “suck it up”. 

I wish I could say a medicine magically worked, but (after being off meds for 6 whole months) pregnancy is actually the only thing that sent me into remission. I’m over 2 years pain free now and am thankful pretty much every minute for it. 

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