Synovial Syntax

Posts Tagged ‘Joints

Ah, well now, wasn’t expecting that. Bloods a teeny tiny bit elevated recently, Prof taking my niggling aches more seriously than me. He ‘doesn’t like’ that my elbows are beginning to give when weightbearing. No, me neither, but I’m still a bit deflated to have him finding issue…and increasing my sub-cut MTX to 17.5mg.

Other than that, watch and see. It could all just be a reaction to the pressure of the year so far – see previous post re: husband working abroad and me starting a new job. It might be all that is keeping me from remission status, and in slight progression status.

To be honest, I’d rather feel that life was engaging and developing and I was in slight progression, than that I coudn’t work and husband had to prematurely rein in work for me to acheive a period of formal remission. So, I may be trading stress to get interest out of life. It seems a fair trade at these not-wildly-stressed/not-wildly-inflammed levels!

He has said to take more note of aches and pains and joints slips and weaknesses though. Apparently there’s a number of us whose pain thresholds get so high, and pain medication use gets so efficiently targeted, that we don’t get enough messages from what our bodies are trying to tell us after a few years of RA. I hadn’t really thought of that, I can see some truth in it for me. Anyone else?

On Wednesday I also got the green light to get into some proper exercise. My joints have stabilised and shoulder tendon healed. I’ve been advised three things – swim for cardio health, resistance train to strengthen joint support from muscles and try and get on a power plate now and then to improve bone density. I think that was what he said about the power plate anyway.

Am going to go and look up this link with resistance training and RA especially.

Wanted to fit a first swim into a very busy time last week, was about to set off and realised I’d thrown my goggles out in a hissy fit back in the bad old days, probably accompanied by a histrionic ‘I’ll never swim again, *sob*’. Have decided to invest in the fit future and been to SpecSavers to treat myself to prescription goggles this time. Looking forward to this.

In lieu of the swim, or cash for trainer/gym at the moment, I hoiked myself back onto the Wii Fit today. Managed to fit 15 minutes of its aerobic stuff into a daftly complex morning. Was thrilled to find my hips and knees have stopped grating and wobbling out when doing the virtual hula hoop. Really feels like progress, that tiny 15 minutes.

I’m just out of consult, and it’s as good as it gets. It’s a sort of remission, or a serious damping down at any rate.

I have to live with the monthly peaks, plan around them and get exercising again preferably without injuring myself this time. Lesson learnt, just because it feels good at the time, I can’t really thrash things in the pool like I used to! Plus I must stop trying to play so hard with my ever growing young boys. The main impact of injuries in my case seems to be, apart from extra joint damage, that I then have to take steroids which melt my immune system, increasing infections rate and severity and meaning I have to delay the MTX and Humira. Which in turn cycles me into non-healing joints etc.

I live and learn.

Bloods are all behaving nicely. It was also reassuring to hear about new research which shows anti-TNFs reduce cholesterol which been raised a bit by MTX.

I had a good whinge about my GPs daft notion that I go in 24 times a year to present blood results, despite only have my bloods done 6 times a year (which needs 12 visits only). Hopefully I’ve imploded that situation anyway by arranging with pharmacy to run my repeat MTX situation. They seem infinitely more efficient and less panicky than the GP reception staff.

That’s it really. I know this situation is as good as it gets, as my next appointments are in the agreeably hazy future, and not next month.

Huuray:)

No pIzza

Nay, nay and thrice nay. Get thee behind me food satan.

Large, and lardy.

You can’t be around RA for long without a huge array of dietary advice floating by you. I didn’t tackle any of it significantly for ages though. It seemed so minor compared to the other stuff going on health wise. Of course, food purists and enthusiasts will tell us that may well be the fundamental reason I’ve developed auto-immune disorders. In my case, no! It’s been immune storms as my system came back online altered and wrong after both pregnancies.

On the other hand, they are right about its fundamental role in supporting the health we have or want. We all know how food helps and hinders our feeling of well-being, in different ways for all of us. In my case, I’d long since given up eating processed food as far as possible. Bad habits though were still with me, and during the early months of RA I could no more manage to prepare myself a healthy diet than I could have re-roofed a house. Peeling, chopping, mixing, lifting were near impossible. Veg especially had to come from packets as far as possible, pre-prepared. My poor boys got a stunningly dull diet of not the greatest food value for ages.

With the Humira having kicked in, I felt able to tackle this. I took up the kind offer of a book group friend to have a student session at her school of nutrition, in early December. They were terribly polite about my frankly ghastly, rich, salty, coffee sodden diet. I went away and implemented much of what they suggested – the classic diet for arthritis I saw by looking online again.

Out went most meat, most dairy and I tightened up on excluding the gluten which has been making me ill since the birth of our first boy. In came more fish, more veg and more berries. I found losing the dairy very hard. I’d been a veggie for years in my misspent youth, but had compensated with dairy back then. During the coldest spell of winter, I was craving saturated fats, and had to fall back on lots of coconut milk curries, and added olive oil.

Positively, it worked. My face skin stopped having reddened areas and I stopped snoring and slept better. I had more energy, and the last traces of puffiness around my joints subsided to nothing.
I broke out back on the cheese on Xmas day and undid some of the good. Then I got bored and lazy and the old habits came back a fair bit in mid-January. Skin went pear shaped again, and I’ve had a RA flare, possibly related? Anyway, I’m back to being more careful now.

So that’s where I am. Over the course of a month, probably 98% dairy free, 90% meat free, eating between 8-10 veg and fruit a day, going heavy on the pulses, roots and legumes. I am getting good at making up stacks of flavourings for food, great drenching amounts of chimichurri and other such drizzles and dips and bastes and sauces. That’s the secret to enjoying an otherwise Spartan diet it seems. Plus an occasional drink, some sweets and a bit of Swedish Glace now and then. Let’s see what more time this way feels like.

(Still irrigating self in coffee in the morning though, oops)

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Haven’t had one of these for a while! Except the slight upswell of discomfort days 11-14 as Humira wears off. This one occured days 6-10. Very clearly started with extra tiredness, and hunger, then moved onto increased shoulder and hip pain on the right side. These ones almost always hurt by the end of the day anyway, they take serious childcare punishment! But my hands went up as well days 8-10, with some stiffness and gelling on rest.

Possibly the recent reduction in Methotrexate, possibly a change in diet, more of which in soon-to-come post. Anyway, there it is for the record. Glad it seems to be over today, and energy especially back to normal. I get bored grim by the effort of mentally flogging myself through the day.

Oh lordy. Had a very extreme pain crisis yesterday afternoon and night. Right jaw – for which I have a maxillo-facial consult booked for end of October. Have had this pain on and off since November last year. Thought it was toothache, 4 visits to the dentist later, root canal work and a night-time bridge thingy later, she says – it’s not your teeth.

Yesterday, the pain was worse than labour, relieved only by squeezing up co-codamol pain relief into every 4 hours and taking 2 glasses of wine. Bum in air, forehead on floor also helped as my jaw was kind of hanging there not hurting anywhere near as much. Thought I’d got away with it, went to bed very dozy, woke in great pain again after 30 minutes went straight to A&E. Exemplary history taking, quick access to nurse and then doctor. Who did the best exam of the area I’ve yet had, says it’s the RA. Gave me Tramadol and a different presentation of codeine for today. Strict instructions to see GP today.

Rang GP twice at 0830 when lines open, coudn’t get through. Took older boy into extra session of pre-school (thank you to them, a thousand times for having him). Baby zonked out with start of cold now. Called GP again at 0930. No appointments free. No advice on how to access any medical care. I want to understand differences between pain killers, and have a stash of Tramadol against repeat emergencies. Also, seriously considering getting private MRI of jaw, by practice in Harley Street who have a maxillo-facial specialist on their list. About £300. But! I need a GP referral for this.

Back to square one then. Have my phone timer on and am calling practice for cancellations every 45 minutes. Can they call me if they get one? No! I am in pain, I find it very hard to care for the kids, my husband doesn’t earn if he doesn’t work. I don’t like this, no sirreee.

Does my bum look big in this?

Does my bum look big in this?

…the steroid jab on the 22nd July I mapped the RA pain like this picture shows. It’s the aide memoir I did for the nurse. Heavy lines are the really sore parts, the ones that keep you awake, others just hurt. Blanks or crosses mean no pain there.


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