How to break a potential cycle

…or is it a cycle hmm? So fellow arthritis warriors , one thing I’ve noticed , when I’m going thru the worse flare, with all my joints filling with fluid and intense pain, I don’t move much, and that stiffens me worse I’m sure…I don’t eat well (can’t open food packages etc) don’t drink much(too painful to get to bathroom) and this happens over and over when I flare…the pain is just too much and that causes everything to go downhill…forget abt the lack of strength and range of motion…can’t even do yoga at the moment or walk , knees are so full of fluid that I can’t even stand up straight…any suggestions to break this cycle.
Flaking since 1999…,

Wish I had a good answer. It might help to have a walker available to help you with required movements, such as to the bathroom. Some things you likely need to force, and drinking water is one of these. For packages, scissors are the answer to everything. Can someone come over and prep food for you, or just make up baggies with healthy easy to grab food? Cheeses sticks and cut up fruit and veggies can go pretty far.

Some things that work for me...

- a mug with a big handle for water... the big handle makes it easier to pick up by slipping my hand through the handle ... fill the mug each time you go to the bathroom or kitchen ... or keep bottled water on hand wherever you sit during the day

- keeping healthy and convenient foods on hand: fruit, yogurt, granola, nuts, veggies, hummus, guacamole, rice cakes, nut buttters, frozen berries, frozen mango chunks, salmon burgers, turkey burgers, baby salad greens and broccolislaw ... I transfer things to easy open containers, combine things like yogurt,granola,and berries for a healthy lunch, and try to have at least a few meals in the freezer that I can just stick in the oven to heat up. Salmon burgers or turkey burgers can be thrown on a baking sheet in the oven to cook, so no standing at the stove.

- Chia seeds in watered down juice is my go-to on bad days... hydration and a complete protein all in one.

- moving as much as possible even though it hurts and I have no energy helps a great deal, even if it's just gentle stretches while laying in bed

- asking for help when things are really bad is key ... I sometimes ask a friend if she can pick up a few things for me at the grocerystore before she drops by, I have a friend with fibro who helps remind me to move and drink and eat properly on my bad days, just like I do on hers. It's good to be held accountable for your health.

- calling my doctor when things are bad helps him to know what's going on in between appointments and helps him better manage my disease... often a flare bad enough to take me down requires a prednisone taper and a look at how my current treatment can be tweaked.

A wheeled trolley (like an old fashioned tea trolley) is a fantastic help when you have limited movement, and lets face it, limited motivation to move because of pain and fatigue. When I was caring for my mother, after getting her washed dressed fed and downstairs, we would use her tea trolley ( made by her father in the 1920’s) to make sure she had all the things she needed to keep her hydrated and fed until I could get back to her in the evening. She could wheel it to the toilet or kitchen when she needed to. On particularly bad days the commode would be in the corner of the room if she couldn’t make it out to the toilet.
Her other gadget she loved was the grab stick…invaluable

Ugh--there's just no easy way to deal with the flares. And suggestions that get made can often make you feel like a dope or a flake (the other kind). [Note, I'm saying "you" but I mean the plural version because this response is for me and you and everyone reading]. Of course we all know that moving more makes us less stiff and helps ease the pain, but first you have put yourself in more pain and make yourself move. The effort required to do anything is effort we all feel we don't have access to when we're sicker than usual. This constricting of our lives from outside to inside, from in the house to in the bedroom, from in the bedroom to in the bed, is often comforting. It is also really scary. It seems like a far climb to get out of bed and back in the bedroom, the house, the world.

Seems like a platitude to say that pushing yourself through it is the way to go, but along with adaptive tools, preparation and outside help, it is the ONLY way to go. You MUST eat, you MUST drink and you MUST go to the bathroom. Without these basic functions you're not allowing your body to work properly and the medicine you're taking won't be able to work on you like it's supposed to. You have to find ways to be able to do these basic things.

Like Louise and Stoney and Nym mentioned, be prepared with a walker, a commode, food and beverage supplies. It sounds to me like you also need to be prepared with HELP. That can be family members (in or out of the house) or a friend, but you MUST have someone to keep you honest when you're in this kind of situation: someone who will remind you to drink and remind you (and even help you) to get to the loo. Depression, as we all know, can be part of a PSA diagnosis. I would treat your worst flare as a deep depression and create a helpful, care network of folks who can check on you--be it a phone call, a text, an email or a visit. Good luck finding the mental and physical strength next time you need it.

Thank you all for your helpful words.

I do have a walker and I did finally break it out.:slight_smile: … I think this flare is particularly hard this time , because I was forced to ,go off all arthritis meds…my awesome rheumy came across a problem through a blood test, that he was the only one to find in 28 yrs! When I had my first baby, all 10 lbs 7oz of her :slight_smile: I needed blood …turns out that blood transfusion gave me hep c !! Nice army hospital! Fast forward 28 yrs and a rheumy finds it on a whim. So I went on hep C treatment in jan 14 and had to go off arthritis meds…so. Double whammy! And the side effects of this hep c treatment is like chemo, only without hair lose …but also with a big side effect of depression, anxiety, and anger at times…so combine that with all the crap of PSA and you can only imagine…only the past few weeks has it gotten worse, and my rheumy put me on 20 of prednisone, which takes the edge off…but good news and hope are on the horizon…hep c has been cleared, and I have a week left of treatment…then I will resume some kind I’d arthritis meds…does anyone know the best meds that have had the biggest results? I was on enbrel and it became ineffective after three yrs…then I had humira and cyclosporine , before having to go off in jan…humira didn’t do much…I wonder if I went on enbrel again if it would work…anyone hVe luck with a med working again after it was ineffective?

ugh, ugh and triple ugh. Ugh rearranged is hug. here's one [-----0-----]

Oh, my ! I am so sorry to hear that you are going through this double whammy !

I am sorry you are having so a tough go right now. One thing I have done is to buy a number of large cold packs. I think brand name is Chatanooga ColPak. I have several in a small freezer a short walk from my bed. At the advice of my physical therapist, I use heat followed by cold and do so once an hour during peak flares. The therapist claims that the heat dialates the blood vessels and all, then the cold causes constriction and helps to pump the inflammation out. At first I was skeptical but it does seems to lessen the intensity of symptoms and gives me some relief. I have to force myself initially, but once it starts working, I find myself motivated to continue. I also have a series of simple stretches I can perform in bed that the therapist taught me.

As for food, I have resorted to delivery when supplies are low. I keep boxes of nutrition bars on hand and some bottled water. I can manage a nutrition bar. And I make sure to have a bottle of water with each such meal. I hope you find some strategies that work for you. I know it can be tough.