Still Pain

There is a huge lack of information about what happens if you don’t medicate undifferentiated spondyloarthritis.

Heaps has been written about how rheumatoid arthritis destroys your joints if you don’t stop the inflammatory process.

In ankylosing spondyloarthritis, it’s said that fusion of the spine occurs (faster) if you don’t medicate.

But with undifferentiated?

There’s nothing, apart from the occasional warning article about progressive eye damage.

It’s useless asking the rheumatologists here - they just want to give you medication.

Why is it undifferentiated?

I have bits of all the spondyloarthropathies - my eyes, bowel, chest (costochondritis), lumbar spine (sciatica), synovitis in several joints (asymmetric), achilles tendonitis, plus the occasional psoriatic skin flare.

That’s why it’s undifferentiated - I don’t fit in one category.

They don’t know in which direction it will develop - psoriatic arthritis? Ankylosing spondy? Enteropathic arthritis - inflammatory bowel disease?

Wait and see.

New symptoms since stopping MTX and prednisolone

Now that the medications have (mostly) left my system, I feel worse off than before I started the medication shuffle in February after being diagnosed with undifferentiated spondyloarthritis.

Shortly after stopping methotrexate (MTX), costochondritis flared out of control. That’s not new, nor unexpected. Take away something that suppresses inflammation, and costo will flare first, hard and often. It’s settled down mostly, for now. The sternum is incredibly sensitive though.

Edema

Constant edema in mostly my left foot, ankle and calf muscles is terrible, especially on hotter days, or if I have to be on my feet for a while. It turns up in my right foot and hands when I walk. When it’s bad, it swells up behind my knees and aches at me. It comes along with numbness and tingling from the pressure. And not fitting into shoes.

I’ve tried raising my legs (and getting stiff from sitting or laying too long), ice packs, heat packs, massage and most recently, a foot bath.

On hot days I feel like one of those animal balloons that clowns make for kids.

My advice - don’t repeatedly sprain any joint - it leaves the area susceptible to holding water.

New joint pain

More frustrating is the pain around the joints, all joints. It’s intense, not there when at rest or when there’s no pressure on the skin, but when you try to do anything, grab something, even the fingertips explode.

I’ve never felt this type of pain, nor the stiffness that accompanies it.

It’s as if the veins are bruised, although my skin isn’t showing any bruising.

Around every finger joint, throughout the hand, wrists, elbows, ankles, heels, hips and knees. Strangely my toes don’t feel too bad. Deeply breathing into my upper chest hurts in a similar way.

Could it be a nasty form of enthesitis, something that is common in spondy?

One that affects nearly all joints in the body at the same time (not something I’ve read about)?

Ibuprofen hasn’t helped. Soaking hands, keeping everything constantly mobile and moving very carefully gets me through each day. But even holding a knife or a toothbrush can force a painful squeal when it presses ‘wrongly’.

Apart from the areas with edema, there’s no swelling or heat.

It might just be a withdrawal spike, one that settles over the long term.

Touch wood.

But I’m wondering - what happens when you don’t medicate?

How does undifferentiated spondyloarthritis progress without medications?

No prednisolone, no sulfasalazine, NSAIDs, methotrexate, or biologics.

Definitely an increase in pain and inflammation, but you avoid the side effects, which can be debilitating (like the methotrexate headaches).

• Uveitis - inflammation in the eye - does progress, if you have it. This can be watched by an ophthalmologist, which I see anyway because I have glasses. If necessary, topical steroid eye drops will control this aspect.
• IBD - the medications don't typically help this aspect anyway, and some can actually make it worse.
• Psoriatic arthritis - long term inflammation can lead to joint damage. But I don't have much showing in xray or scintigraphy tests (other than degradation in my skull). I don't have the typical joint involvement consistent with psoriatic arthritis, and although this was my initial diagnosis, the specialists aren't confident of saying I have this type.
• Ankylosing spondyloarthritis - over time, the inflammation will fuse the spine, unless medicated. It usually takes 10 years from symptoms beginning to see any bone changes in xrays. I've had symptoms for 30 years, and still don't have anything visible in my spine.

None of the medications are good to take long term for chronic synovitis or enthesitis (inflammation of the soft tissue around the joints).

Moving on carefully

I don’t want to get back on the medications, mostly because they have caused terrible side effects. So I’m taking it a day at a time, and seeing how I can help myself cope (or improve).

But it’s official - I’ll be moving house (and states) in a few months.

Eeek!

It will be a mindful 4 months, carefully sorting and packing, minimizing time on my feet, and carefully traveling long distances to house hunt.

I’ll drop some doctors visits, tests and new therapies to let me have more energy to put into the move.

Things I’m currently trialling to combat the inflammation:

IBD/IBS: probiotic capsules - after one week, the daily crazy bowel cramps have stopped, yay!

Uveitis / conjunctivitis: hydrating eye drops, many times a day.

Joint pain / stiffness: Katy Bowman's Whole Body Barefoot stretching routine and her Movement Multivitamin DVD. Epsom salt soaks. Turmeric capsules (starting in a month - trialing probiotics first).

Costochondritis: tennis ball rolling around shoulders and thoracic spine, and the Movement Multivitamin DVD (which has been working fabulously), plus the other usual things I do to keep costo under control.

Edema: stay off feet, drink lots, epsom salt soaks, ice packs, no cycling at the physio gym. Not doing the procaine infusion therapy my pain clinic wants me to do (can cause edema). Compression when traveling. Also, lymphatic drainage massage.

Do you know how spondyloarthritis can develop?

I’d love your help and advice.

Do you know how undifferentiated spondyloarthritis progresses, with or without medication?

What things help you cope with spondyloarthritis, if you aren't on prescriptions?

What things help you with enthesitis and edema?

Thank you!