Finally getting answers?? 7 weeks til #TotalHipReplacement

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

Well I’ve had the long awaited rheumatologist appointment, and it wasn’t at all as expected.

I wasn’t sure which would be a good result, if I’m being honest. As rheumatoid arthritis is no laughing matter, though thankfully there are certain medications to help with the inflammation.

However, I have certain distinctive wear and tear joint space narrowings of the joints, and none of the rheumatoid symptoms, so this meant it’s more likely my #EhlersDanlosSyndrome causing early Osteoarthritis, but the inflammatory kind. So still erosive and very painful, but less likely to be helped with medications that they use for rheumatoid arthritis sadly.

So it’s a limbo really, I can brace, splint and tape them up. Take ibuprofen, use hot water bottles and do physio and see if it helps. Though I am doing all these things already to be honest. So my future of a crafter (Jewellery and papercutting) is looking unlikely!!

I’m going to try and tinker more with food groups and try to find my triggers, if it is triggered by food that is.

So it seems my Zebra status is causing my early onset of Osteoarthritis which is notable in the hips, and now the hands. I haven’t dare touch upon the fact my ankles roll all the time, knees ache funny and elbows are odd. Because he signed me off straight away. So I think he just believes I need physio and perhaps go back to gps for help with better painkillers. (Do better painkillers even exist? Ones that don’t cause hair loss, sleeplessness, racing heartbeats, brain fog, nausea to name a few of the lovely side effects…)

I am allowed the kenalog injections in the hands, but is that in 1 joint, multiple joints? As sometimes it’s 1 thumb, 1 wrist, and 1 finger all at once! It’s unpredictable as to when and where it’s going to hurt, so taking painkillers seems weird. Ideally just reduce the inflammation would be a good start.

For now though I must just muddle through, manage the pain as best as I can, because it’s a mere 7 weeks now until my Hip Replacement Surgery. And I have so much to do to prepare for that. Any handy tips or hints? Let me know

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5 days and counting to steroid #couch25k

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

As you know I’m 39 weeks post #hiparthroscopy and I’ve been doing all I can to increase my muscle strength, lose weight (not actually losing which is annoying) and generally trying to be healthier and fitter. Though I’ve not lost any weight, I feel better, feel stronger and not as bulky!!

This week 3 run has been a nightmare, it’s 1.5mins run (walk unaided for me) then walk normal 1.5mins, then 3 mins run, 3 mins walk. Do this sequence twice. But this sudden leap up from 1.5mins to 3mins has made it very hard. So as I write this I’ve managed 2 run out of 3 (3 runs or 3 outings each week is set) per week. How everyone gets out 3 times in a week is beyond me, and way beyond my pain threshold too.

So last Friday on 38 weeks post op we did run 1 week 3, and today it’s Friday and we are finally doing run 2 week 3. At least we have stunning scenery to do it in, so the fresh air and sights heal my soul as well as physically.

In my defence we’ve had family get-togethers, physio at hospital too, then an awesome #LennyKravitz concert and the following day my grandson came for the day, so seriously not had energy or will to do it.

Pain wise it’s been HARD this week, and not my hip either. My left ankle has been awful and rolling inwards lately. Plus my left hand is dreadful. But more worryingly my right hand is having some stiffness, my elbows both sides often feel strange. It’s like one minute I was fine ish, then suddenly over the last 3 months it’s spread it’s more days of feeling like I’ve been hit by a train. I’m hoping come July I will have a better idea of what’s going on.

Saturday it’s carnival time and seeing family again, so no exercise persay, but me doing stairs certainly feels like an epic battle! And much needed physio to help strengthen my legs up. But my groin is on fire, it’s grinding as I walk, so I’ll have rest as much as possible too.

27 weeks post #hiparthroscopy

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, Triple Pelvic Ost, Femoral Ost, PAO

Moving on from week to week and not much has happened this week, except I’m poorly again!! Just a chesty cough and woolly headedness, so I’ll live.

But I did visit the doctor over my hand, as it’s getting too hard to hold the simplest of things lately. The basal joint of the thumb feels like electric shocks, when I try to hold cups, plates or my phone. It’s been like it on and off for a year or so?? Wonder if Arthritis or just Ehlers Danlos Syndrome. Anyways had bloods taken to check, and I’m being referred to MiCats for physiotherapy and steroid injection for it. So that’s 2 steroids in 2 different joints this year!! I need this hand for my walking stick. For now I brace it on bad days, but when it settles I take it off, so it’s not solely dependant on it.

So for physio it’s been PANTS for a week, barely done any, as I’ve had family visits, doctor’s visits, then blood test visits, and honestly they’ve just took it out of me. Just being still hurts so I’ve had no desire to move the hip. Maybe it’s increased on pain because the weather is so damp? Or because it’s that time of cycle when it all flares up (when my whole body feels broken and shattered) or simply being ill makes me feel things more?

Just waiting on blood results next and of course appointments to come through from steroid in hip, physio for hand, and steroid for hand. Can’t wait to get them all done and dusted, though I’m scared!!

I confess…..

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

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I have a hip confession to make, I’m STRUGGLING… It’s not an easy road to be painfree. Or even to any degree of flexibility either.

I have had an incident, it slipped out again!! Twice now in 10 days, first time I thought and presumed it was my own fault, I’d stepped fast and twisted. But this time I know, I KNOW I did nothing wrong. I simply walked forwards, the back of the hip felt insanely odd, something moved forward, and next thing I knew I was slowly going to the floor to correct myself and ease the pain.

So I have a dilemma, is it time to replace? Is it slipping because I’m doing something wrong? Is it muscle weakness causing the instability? Or simply it’s the no labrum I have, causing slippage as nothing is there p hold it in? Or just hip dysplasia and Arthroscopy surgery don’t mix?? So many questions, no answers. So I’ve contacted the surgeon and I’m off for some advice on the 20th March.

After this fall, I ended up on 1 crutch for a few days, the pain was intense, white hot groin pain,and shooting nerve pain down the back of my leg. I was scared and frustrated to say the least. It’s took complete rest, medication and hot water bottles to finally settle it down. It also swelled up from its usual 27inches (big I know) to a whooping 30inches on the day of the fall. Thankfully it’s gone down to 28inches now 3 days later. But it’s still tender to touch over the illiac crest area, and smarts in the groin. I even felt posterior pain where my old scar is, when sitting at 90degrees. I’m keen to get some answers, put my mind at rest.

Sorry it’s not a positive post, but it’s an honest one, a realistic one and maybe it helps someone on this journey too.