Deconditioning and Reconditioning With RA

I've lived with joint pain my whole life and was finally diagnosed with rheumatoid arthritis (RA) at the age of 30, which was 7 years ago. I take a biologic, Remicade, in order to protect my joints from further deterioration, and it mostly prevents the severe pain and swelling I had previously been used to.

In addition to Remicade, I have made moving my body regularly a priority, even if it's just gentle stretching, at least a few times a week. I find that pushing myself to do this has helped with my mobility and has, in general, made me feel better in my skin.

A diagnosis of bacterial meningitis

I live with several other chronic conditions, which all come with various symptoms and ailments. But this year I experienced a severe, acute illness.

In November, I was diagnosed with bacterial meningitis (an infection in your brain) and for the last 8 weeks I've mostly been in bed in the hospital or in bed at home. I was required to do 7 weeks of IV antibiotics 3 times daily with my port (like an IV) access. This meant that almost all day, every day, I was horizontal. One of the symptoms of meningitis is throbbing headaches, and that prevented me from being upright or active at all during this time.

I've become deconditioned

I just finished my course of treatment, and I know that it can take up to a year or more for meningitis symptoms to go away — which is infuriating, because there's nothing I can do but wait, be patient and gentle with myself, and hope that it happens sooner rather than later for me.

One thing I've noticed is after spending SO much time in bed in mostly the same positions, I've become terribly deconditioned. Climbing the stairs feels like work. Standing for too long makes me dizzy. Things I used to do often, I currently can't do at all. Walking, stretching, bending to load and unload the dishwasher, picking up my daughter — those are all things I've struggled with in this period of time.

And my joints. My joints have been mad. Between not being used very often and the dramatic weather shifts we've had in the Midwest (snow, ice, sleet, rain, freezing temperatures, etc.), I've found myself struggling with the familiar joint pain of RA.

Being an active part of my treatment plan

The next part of my meningitis recovery is neurological rehab, and then physical therapy to recondition my body. It all feels overwhelming. I know from past experience that there are certain ways in which PT has helped my joints, and other ways in which it has been... less beneficial. I know that I have to be an active part of my treatment plan in order to both protect my body and to help it recover.

Have you been in neurological rehab?

I never realized that not moving could have such a big impact on my joints and the way that RA affects me.

If you've experienced something similar, I'd love to hear your story and what helped you most to get back to your "baseline." And if you happen to have experienced neurological rehab, I would really appreciate connecting with you. This is new for me, and knowing what to expect feels challenging.