Systemic Lupus Erythematosus - Tumblr Posts

I never use this blog for anything but lurking but I need a place to vent for a minute so here we go.

I’m very new to the chronic pain game, and it’s only been like 3 weeks of the current intensity, but I’m so darn tired of it already. I’ve upgraded from the low-level stiffness to flu-like dull aches in every joint to today’s new layer of stabbing pains in my hips, knees, hands, wrists, jaw, and lumbar. I had bloodwork done a few weeks ago and my ANA quant was positive so I’m meeting with a rheumatologist in a couple weeks. From everything I’ve web searched (main grains of salt taken), it might be rheumatoid arthritis or lupus. I have a family history of both so it’s not improbable.

I grew up in a household where my feelings and thoughts were constantly invalidated so I don’t have a lot of experience listening to my body. So I tend to underestimate my pain. But at the same time I worry that I’m hyperfixating on the pain and that that’s exaggerating my experience. *shrug*

Ughhhhhhh

Just had a burning pain sear through my knee that made me audibly say “ow” so I guess it’s not all in my head.

But like... how would I even rank my pain from 0 to 10? In my mind 10 is like...childbirth. And if I scale from there I can’t be experiencing more than a 4, right? And at the same time I feel like I might need crutches or a cane to help me get out of bed in the morning.

Grrrrrrrrrrr

i had no idea compression gloves were a thing i'm about to get some thank you so much

So you just got diagnosed with inflammatory arthritis....

A guide to coping with inflammatory arthritis written by someone who has been living with it for years

1. Warmth helps with pain and stiffness

Take a hot bath or shower

Use a rice bag to heat your most stiff and painful joints - How to make a warm rice bag (no sew) How to make a warm rice bag (sew) Adorable heated stuffed animals

Heating pads can also be good for heating specific joints (I don't like either of the ones I've had so I'm not dropping a recommendation)

2. Compression helps with stiffness

Compression gloves work really well in particular - Really cool compression gloves

Compression for other joints works well too

3. NSAIDs help reduce inflammation in your joints

Topical diclofenac is my personal favorite, it works wonders

Meloxicam is only available by prescription but has fewer negative side effects than over the counter NSAIDs do

Ibuprofen and Aleve/Naproxen are both OTC NSAIDs

Here's a full list of NSAIDs

4. Steroids reduce inflammation but are usually only used for flares. If OTC remedies are not working for your arthritis it may be worth asking about steroids to manage flares

5. Use adaptive devices

Note that I haven't tried all of these!

In the kitchen - Jar opener, pull tab opener, arthritis friendly silverware, ergonomic knife, another ergonomic knife

In the bathroom - My favorite shower chair, long handle bath sponge, shower grab bar

Dressing - Many button and zipper aids, magnetic jewelry clasps, sock aid

Standing assists - Bed rail, couch stand assist, cane with stand assist

Office - Pencil grips, book stand, vertical mouse

Other - Arthritis friendly gardening tools, so many grips adapters and holders

.... and many many more

6. Use mobility aids - I'd strongly recommend talking to a doctor before deciding to use mobility aids. mobility aids cause damage to your body so it's important to weigh the pros and cons of using them. Anyways my personal recommendations:

Canes - NOVA T cane, Carex ergonomic offset cane

Crutches - Millennial In-Motion Forearm crutches

Other people with inflammatory arthritis are welcome to add on!