heartsongs

Weaving my way around Rheumatoid Arthritis.

A new adventure

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Today is Wednesday – only I’ve skipped a whole week of tracking my symptoms. Strangely, the entry below, for last Tuesday, could pass for yesterday’s entry.

My left arm is better, it’s been sore for two weeks, gets some better every day. Still sore in the shoulder area, still weak, but generally still improving. I’ve had two chiro appointments, one acupuncture and one PT all aimed at helping it, plus daily self massage and stretching. It’s a long, slow process. PCP said it sounds like fibromyalgia – that’s just another name for inflammation. Wonder why it moved from my joints to my tendons and muscles?

Hands are better, in spite of another gluten zap on the weekend. DD1 is doing gluten testing today on the suspects. No prednisone this time, just a couple of days of cortisone. Still some dry knuckles, but blisters and cracks are gone for now.

Strangely, the RA is in total remission – maybe the prednisone??? Happy joints – I’ll take it!

Edema is still awful – I’m feeling like a sausage again. My biggest pants are tight and uncomfortable. I haven’t been on the scale in three days, because I dread seeing the number. Last time I looked, I’d gained 10 pounds in a month. PCP says that’s the prednisone.

Saw the PCP Friday. She did blood work for my thyroid. All came back great, so we’re going to switch me to the gluten-free version of levothyroxine, but stay with the same dose. That’s good news. (and she agreed to order a factory sealed bottle, so that the issue of cross contamination in the pharmacy is avoided.)

And she wants me to see a neurologist. She thinks the many symptoms are looking more and more like PD and that there are non pharmaceutical things that I can be doing to help. I’ve noticed, for a couple of months, that I’ve had difficulty getting my VFFs on in the morning. My toes seem to be curling – I chalked it up to the RA getting worse in my toes. Several times, I’ve also noticed that my toes were doing a little dance as I sat and used the computer or read a book. Not tremors, like I see in my arms and legs, more like making a fist and relaxing it, over and over, only in my toes. First time, I just watched in amazement, next few times I sighed and got up and walked around – it stops when I use my feet, next time I searched the internet for foot cramps/toe cramps/toe curls – and guess what – yep – PD symptom. Another thing I’ve been noticing over the past few weeks is that my back is tight and achy when I wake up. Also attributed that to the RA, and spend the first 15-20 minutes each morning doing gentle stretches. The reading I’ve done this week indicate it could also be part of PD.  I have partial loss of sense of smell and taste, arm, leg, neck and finger tremors when resting, toe curls, back ache, early morning sleep paralysis, left drop foot, the white matter lesions they found in my brain when they did the smell/taste tests last winter, RLS, fatigue, trouble sleeping, daytime sleepiness and, apparently, my face is looking asymmetrical – sort of droopy on the left side. Lots of strange symptoms – some can be attributed to RA and some to Hashimoto’s, but all can also point to PD.

Maybe it is time to give it a name. And then figure out how to make friends with this new part of me. It’s a new adventure.

Tuesday

Woke to the funny freezing thing. Had tremors in my left arm driving home.

Left arm, biceps attachments still tender, arm weak, elbow weak. Maybe a little better than yesterday, but the soreness goes around to my shoulder now.

One new crack, no new blisters, the cortisone is working. Still some dryness and peeling, but making progress.

Hand stiffness – maybe a .5 or less

Right shoulder-blade – less sore

Balls of feet – my normal

Joints all seem good, better than my normal

Back a little stiff

Neck crinkly

Eyes – no flashes this am

Tummy soft and flat

Edema – stable

Weight – 172.1 (down 1.6 form new high of 173.7, up 7.6 from June 164.5) Had acupuncture last night, maybe that accounts for the weight loss.

Bristol – 4

Monday 6:30 am

So, most things are better today – including my spirits – is that the prednisone?

Left arm, biceps attachments still tender, forearm tender, weak, elbow weak. Not using my left hand for much. Just need to let it rest and protect it.

A few new deep blisters, but the prednisone and cortisone stopped the hand flare.  Color is good, little redness. No new little blisters, some dry spots, no cracks, only new blisters are itchy. Maybe once they are completely healed, a small gluten zap won’t cause such chaos.

Hand stiffness – maybe a .5 or less

Right shoulder-blade – better

Right knee better

Balls of feet – better -1

Joints all seem good, better than my normal

Back ok

Neck crinkly

Eyes – no flashes this am

Tummy soft and flat

Edema – stable

Weight – 173.7 (new high of 173.7, up 9,2 from June 164.5) – the weigh gain seems to follow the prednisone and the gluten – erg.

Bristol – 4

Sunday 6:30 am

Left arm, biceps attachments still tender, all other tenderness gone

Hand stiffness – maybe a .5 or less

Right shoulder-blade – still sore

Right knee burning – guess it didn’t like hiking

Balls of feet – still swollen – normal 2

Toes of both feet – doing the cramping twitchy thing, right baby toe swollen

Joints all seem good, better than my normal – gotta love the prednisone

Only twitches this am are the toe things

Back normal stiffness

Neck crinkly

Couple of head twitches as I’m sitting here thinking

Eyes – no flashes this am (note: they have been flashing almost every am for at least a month)

Tummy soft and flat – no bloat – that worrisome lymph node still swollen on right, but smaller, maybe marble sized – have to remember to ask Alma about it next week.

Edema – stable

Weight – 172.9 (down 0.6 from high of 173.5, up 6.4 from June 164.5)

Bristol – 4

Edema weekly check: Since June, I’ve gained 8.75 inches, evenly distributed across my body, along with the 9 pound weight gain. EDEMA. UGH.

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Written by wovensongs

October 3, 2012 at 6:21 am

One Response

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  1. I admire you consistency to track your symptoms. 🙂

    Cathy

    October 4, 2012 at 7:40 am


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