Find out all that’s going on Here complete with new low mobility exercises to try and a steroid injection planned next week. Let’s do this…..
chronic pain
Umph it’s been a long slog to get here, trying to put off steroid injections so they can be assessed in their natural state. It’s a shame the hand surgeon hasn’t got to see them, but forever hopeful it won’t be long.
So it’s back to the hospital today and get them assessed and checked, hopefully see if they can refer me to a rheumatologist as I still haven’t had bloods taken for many years. I’m hoping I’ll get to have new gloves and splints, but not sure if I’m dreaming, and they can’t do that.
I was given new exercises and told to ditch my old ones, now that the thumb on the right hand has collapsed in 2 joints.
I also was given new splints as mine are no longer working. New compression gloves and an oval 8 ring too. I felt seen and heard for once. The second opinion I’m seeking was highly recommended by this therapist, to explore possible fusion, or implants.
Didn’t and couldn’t get a rheumatologist referral so it’s something I need to chase via gps or micats. The delaying of steroid injections is encouraged as they are fastly collapsing the bones, and speeding up the deformity. Hard to delay as when you get some pain relief however short, is bliss.
All in all it felt great to be seen and assessed, to be helped rather than medically gaslit as usual.
I was advised on lots of gadgets and gizmos to help me be independent and safe around the home.
I can’t believe it’s been 5 weeks since I was last here!! That’s crazy, time really does seem to be whizzing by, and other things seem to taking my attention more than the hip. Which is good in a way, as it means I’m naturally moving on from being acutely affected day to day.
However it’s also bad as it means I’m not truly focusing on healing and improving this nagging psoas issue. But that’s the devil of having more than 1 health issue, going on in your life. Sometimes you have to choose to rest when you don’t want too, and to focus on other joints as they hurt worse. And that’s definitely been me lately.
On demonstrating my ability to hip hitch lying down, it was decided it’s too weak to progress to standing version. I showed my knee to chest, requiring to use my hands to fetch the leg. This is a massive set back, so we’ve discussed hydrotherapy while land physio is causing such pain. But there’s a heck of a wait for that yet. So in the meantime I’m to go back to hip hitching lying down, and knee to chest stretch on the bed.
I showed them how the Right hip that’s 3yrs old is also suffering, so I’ve been given the stretch above to try and help ease the pains off.
So it felt a little disappointing, but the plan is for him to devise me a full physio routine and he will post it to me, and do that for 4 weeks, then go back to see if any improvement has been made. And then do the checklist for hydro at that appointment.
Functionally I feel ok, but to do steps, stairs or lift the leg I am struggling a lot, so I will do exactly as I’m told and hope it helps.
I’ve had such issues and flares lately with my hands, and the only thing keeping me going, was knowing I was seeing Mr Craigen soon at Royal Orthopaedic Hospital.
And as I was just on the final countdown and a few days away, I got the call that it’s been cancelled, and will be rescheduled soon but with Mr Brewster. Not sure why, or what’s caused the change in specialist either, I just hope it’s not too long a wait.
Least I have an appointment with occupational therapist later this week, so I’m hoping for maybe new gloves or splints. Maybe this will help me cope while I wait for an new appointment.
Physio just isn’t feeling good or easy right now, but it’s not really a hip replacement issue. More it’s an overall Ehlers Danlos Syndrome issue, as it’s affecting my elbows, shoulders and hands. However the walk I shared previously felt great in the newest hip, but I weirdly overdid the older one??
I’ve decided to avoid the knee to chest, while it’s so angry, swollen and irritated.
Hopefully little but often will help, but my main focus is on walking and keeping form. I’m only noticing my leg length difference when I’m tired and the Trendelenburg gait comes out. I looked back at my original hip at this stage and whoa they are wildly different. Check it out Here
We’ve all struggled over the anxiety and stress of covid the last 2years, having restrictions, rules and lockdowns. And now as they was easing, and hope was returning, we are now plunged into another crisis with the prospect of full on war between Russia and the world due to their invasion of Ukraine.
And while I don’t want to dismiss it, I don’t have any desire to focus on it either, in order to protect my own mental health. So it’s good to step away from the news, and from social media, and breathe in nature, nice and deeply.
This week is a particularly tough week emotionally with grief ever present, and physically as I’ve had some of the worst pain and flares to deal with, barely sleeping due to pain in my hands. It’s hard to look after yourself when you feel so low and exhausted, and I’m sure pain feels worse when you are emotional, and fatigued.
So be gentle with yourselves and step back from things that stress you out, of you feel anxiety creeping, take time to listen to podcasts of guided meditations, or asmr videos if they relax you. Run a bubble bath and have a pamper session with a sheet mask. I’ve been watching some guilty pleasure TV A Discovery of Witches, a way to escape into something whimsical. Sometimes even an afternoon murder mystery film and a coffee with biscuits is all I need to help re-centre myself and allow the mind to be more present.
Not been walking for 12 days in total, the storms have put a stop to them, it was ultimately too muddy for us earlier, but add in high winds and it’s too dangerous to go out.
We had some family things that needed to be done anyways, and plenty of travelling to do too. So we felt it would be better to stay in on the other days, as bodily I wouldn’t of been able to do both a walk and travel for family.
I had hoped after Storm Dudley, and Storm Eunice we’d get to walk this week, but nooooo Storm Franklin is here for a play. So it’s time to get the bosu ball out.
Hoping these will be ok, it gets very boring fast doing the same Clams and Hip Flexion exercises, but obviously they are the main ones to do religiously.
This walk mentioned here was done a week or so ago. Been resting ever since.
Sometimes things don’t go to plan, and you just never know how or when. We had an epic new place to have a walk around, the weather was good, and I was excited.
But as I was preparing my coat and bag in the car, I hurt my hand merely twisting the wrist, and I burst into tears. My god this hand it getting hard to live with. This hand was already in a compression glove and splint to protect it, yet I still managed to hurt it.
Getting myself together and forcing the tears away, we set off. Pretty lovely amble at first, until I sank in some mud, thank heavens for boots!
We managed to get to the main destination, but it came with a cost of the hip swelling up quite a lot. Clearly it didn’t like this retrain and the challenges I was putting it through. I took more pain relief and grateful I could sit down and properly rest it.
After getting to our main part, it was all downhill and through countless more fields, but we stumbled upon a new situation, one that we always have at the back of our minds, Stiles. If you’re lucky you get gates, or tiny passing places, or a well built stile. However I reached one that made me cry, I was terrified of it, it felt too high, too hard, and too unsteady. I was convinced I was going to fall, and we had to shove the leg over. And it meant one hip needed to internally rotate, so I could get a toe hold while bringing other leg over. Now if you have a hip replacement you may know this is a huge No No. I had to trust my 3yr old hip replacement to do this, and it felt boggy, thankfully I got over but the whole experience tipped me over the emotional edge.
Knowing we could have many many Stiles, and me already in a state with a swollen hip and emotional nervous wreck, we stopped to have coffee and eat more sandwiches while Mr Moon reassessed the route and changed it for a road instead. We ended the walk much earlier than planned, but I was grateful. It was definitely the right call.
I had zero help from the GP, who barked at me for asking for a rheumatologist referral. I only said that micats recommend that I ask for a referral for rheumatology and have bloods checked, as it’s been years. Well he was offended I asked, demanded to know why micats hadn’t done it, and quite honestly angered me beyond belief. Here I am, just struggling to get my hands to work, and sleep due to pain.
So all I got out of him was maybe an occupational therapist referral, but goodness knows how long that will take, but it’s better than nothing. Perhaps they can refer to a rheumatologist, though I’ve emailed micats to help me too.
I’ve been trying to do some exercises especially for the hands, like tendon glides to see if this will help ease some of this flare. My micats lady is unavailable for advice until 14th February and this level of pain is just soul destroying.
I would love new splints, but I want to see occupational therapy first to see if they can advise me on them, and maybe help me get a day one and a stiffer one for nighttime. To see if more active rest will help.
As least this type of phsyio I can do sitting watching TV, or reading a book. I do wear my compression gloves while doing them, just to help support the thumb a bit.
I hate moaning, and in winter it’s definitely what I seem to do more, as the whole body fails me. Sometimes it just sucks to have pain 24/7 and no relief. I so wanted some help from a GP and I’ve never felt so medically abandoned in my life!!
Well not sure I regret it exactly, but we did a walk that showed me my limitations, and I have really suffered since!
But it’s cold, far far colder than I was prepared for, even though I wore tights. That was a mistake in itself as the seams on the toes rubbed me.
Neither of us really remembered the path or route, so it threw up challenges we weren’t prepared for,so Mr Moon had to manually lift my leg in places, or I had to crawl in a fashion to get by.
It took me so long to do the shortest amount that the sun was setting and twilight was fast approaching. I have never felt pain like it!! I think being so careful over mud made me tense up, and I over worked my hips. This will need some serious bed rest to help me recover along with lots of tramadol.
Though my ability was pushed passed, when I look at photos I still look back fondly as its glorious countryside, and stunning views.
debbiehipster 