Rheumatoid arthritis - advice?

In My Humble Opinion
21

An update. I’m not doing very well, unfortunately.

Based on doctors’ tests - ultrasounds - and them just kinda looking at me and seeing me - I have swelling in nearly all my joints below the neck. That means all foot joints, ankles, knees, hips, elbows, every joint in my hand and wrists, elbows, and shoulders. They have only tested for bone erosion in my hands, but 90% of the joints in my hands have that.

It’s really hard for me to walk, get dressed, type, etc. With my hands, I do everything with my middle fingers, which seems to be less affected. The first finger, thumb and little finger just stick out like, well, sticks.

Commuting is an arse. My feet are swollen; they hurt all the time, but the pain increases depending on what kind of surface I’m standing on. Concrete and metal are hard to stand on.

Still, I look normal. I can’t carry a cane to signify that I need a seat because I can’t carry a cane - but that also means I can’t hold onto anything on the tube. My hands have no grip; I can’t make a fist or lift my arms above my shoulder height. This also means I can’t move into the middle bit of the carriage, or move quickly to get to any available seat. So I just have to stand there in the central bit and rely on my abs. They’re doing well, by the way. I’ve gained a little weight due to inactivity but am still definitely slim.

I have also had frequent chest pain, the kind where it hurts if someone touches a certain part of your chest, for about three months, which I’m hoping means pericarditis, because that’s easy to treat. It REALLY hurts if anyone touches me there, so it’s likely it’s just a bone thing. And Gods, does it hurt if I’m touched there. The yoawee-aaah! kind of pain. It’s definitely not psychosomatic - something I’m always on the watch for; I’ve been woken up by this when my partner has lain on my chestbone.

There’s a rash on my arms and has been for six months; it’s probably just excema due to my pre-existant asthma, but it just looks weird, not like excema at all (all under the skin) and I’m a bit worried. Hell, even if it’s just ecxema, why now? My asthma’s way worse too. My body hates the world. Stupid body.

My rheumatologist continues to look on me with a sympathetic expression while prescribing more drugs. He is not a miracle worker. He hears that I’m always nauseous and accepts that as a side-effect of the drugs, and prescribes more drugs.

It’s all just kinda shitty.

22

Not hard to believe at all, actually. For giggles once, I tried transcribing a Youtube video (you can make a little money doing transcriptions and I wanted to see how tough it was) and it was hard.

I don’t suppose you could have text-to-speech software running, and just edit what it produces? I expect that wouldn’t be much easier, all in all.

Sorry to hear you’re not doing well. Any chance you could get sent to one of the Big Names in RA? I’m sure there are lots of administrative hoops you’d have to go through to do so and it would take a while, but if it’s a possibility, get things in motion sooner rather than later.

23

I am so sorry you are in such pain, SciFiSam. That really sucks. My grandmother had arthritis really badly the last decade of her life. It was hell. I hope your doctor can figure things out to help you feel better soon.

24

Thanks, guys. Text-to-speech really wouldn’t work, but I am going to try it for non-subtitling stuff.

I had a 48-hour EKG and it showed lots of missed beats and also that I have an average heart rate of 47, which is the resting heart rate of an athlete. Since I am not an athlete, nor am I on bedrest (I’m quite active, but can’t run) this is rather worrying. I’ve been referred to cardiology, but, due to the Christmas shutdown, have to wait till January.

Due to other symptoms - frequent urination, constant diarrhoea, pins and needles, loss of balance and blurred vision - I’m also being investigated for multiple sclerosis. I hope it’s not, but to be honest I’m not that hopeful.

And since the methotrexate dose was increased I’ve started losing my hair. :frowning:

However! On the good news front, the rash has gone and was probably just eczema. :slight_smile: Unless the heart problems are vasculitis, in which case it’s not. It’s left some scarring but that will fade with time.

25

Hmm. My GP just called me to ask if my rheumatoid appt to investigate the pins and needles had come through. Never had that happen before.

He had tested my sensations with a tuning fork and my left foot didn’t sense anything, and a physio had the same results with scratching the foot, but I can still feel my foot - it’s not like there’s no sensation at all. Just not enough to walk on it, but occasionally i can. Sometimes with a lot of effort I can move my toes. A real problem would make that impossible, right?

I hope I’m being a hypochondriac, but this feels eerily similar to just before the rheumatoid diagnosis, where the evidence was piling up and I was still thinking I was probably fine.

At least I don’t have the horrendous brain fog I had a few months ago. That was far worse than any pain. You could actually see it in my eyes - that I wasn’t quite there. But I’m starting to forget words again and can feel the fog descending.