I was wrong, it’s so so painful again!!!

Archive, Arthritis, Covid -19 Week Fourteen, Covid-19 Lockdown, Health, Hips, Hypermobility

I had a couple of months, where I really felt like I was winning in the pain stakes with my hands. But the bliss is over, for now at least.

So I’m hating life, hating my hands, I want to chop them off. Recent warm sticky weather means my splints are uncomfortable and yet here I am needing to wear them all day and night.

My routine of CBD oil x 3 a day, 8 x Paracetamol and 1 x Etoricoxib and numerous Ibuprofen Gel rubs, just isn’t cutting it, even though I’m wearing Compression Gloves, and Splints more than 80 percent of the time too. So now I’ve added 1 x Tramadol on the worse days.

I’m really hoping it’s merely a blip and I need to ride it out.
Many young women with inflammatory arthritis, including psoriatic arthritis and rheumatoid arthritis, report flares in their symptoms when they have their period. Hormones such as estrogen may have an influence on the immune system. The relationship of flares in arthritis symptoms at the time of menstruation may also be due to the effects of pain perception related to estrogen. When estrogen levels are low, women report more pain. In clinical trials, those given a placebo without estrogen have more joint pain than those given estrogen. Thus, the lower levels of estrogen during menstruation may be a cause of the increase in joint pain that many women with arthritis report.

How my hands feel below

As it’s my Birthday next month I’m seriously considering a push brace type of splint, as my dominant hand is catching up and feeling as bad as my left hand. At the moment they are both audibly grinding as I scroll my phone, or to hold things like mugs and bottles.

Physio over the phone

Arthritis, Covid- 19 Week Twelve, Covid-19 Lockdown, Health, Hips, Hypermobility, Hip replacement, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

After 14 weeks of zero physio in the hospital, while being assessed by my physiotherapist, I had an appointment over the phone.

We discussed how my lunge onto the bosu ball, or going to do steps, is making the hip feel like it’s popping out, she feels it’s a muscle issue, so to shorten the step, and dip shallower to build it up slower. And do little but often.

And to maybe try a kneeling lunge if knees allow it, to take some pressure off.

But as I do have sore knees, I may have to do these with a cushion under the knee first.

Or I was given the option to swap forward lunges for side lunges and see if they both cause same pains, or if this one doesn’t.

We touched upon the encroaching groin pain from the left, the limitations it’s presenting and we decided the ROH should be approached for an appointment for that hip.

But I’ll be honest I’m not hopeful, I have one set for Feb 2021 and I may wait until then anyways. As I know they have some serious backlogs as it is. And physio itself may not be face to face until October, I’m sure I won’t see a consultant before Feb 21 anyways.

* Finally started exercise besides walking at home again, need to help this dodgy left hip while I can. And lose some lockdown weight!! *

Finally some relief, #CmcJointArthritis

Archive, Arthritis, Covid -19 Week Eleven, Covid-19 Lockdown, Health, Hips, Hypermobility, Hip replacement

At long long last, after 7 weeks of #SimplyCBD and 23 weeks of #Etoricoxib I have some relief. Though I really need to add those #Paracetamol to achieve it.

Splints are needed still, and the gel, but I’m not having that absolute bone crushing pain, that makes me want to amputate the hands, so that’s a win.

I had to increase the drops of CBD oil from 1 drop x 3 a day to 2 drops x 3 a day, once I hit that amount, I noticed a change. Beforehand it definitely helped with anxiety around pain, and sleep too. But for pain it didn’t. So upping the dose slowly I gradually saw a difference, and I made sure I did it over a menstrual cycle too,which is when my body overall is more painful.

I would still prefer an steroid injection to really kick the inflammation down, and I wouldn’t need splints as much. But still not an option sadly. But maybe soon, now the lockdown is easing off in places.

A big break for 2 weeks in physio, and walking has helped with getting my shoulders and hip pain under control, which allowed me to really work on getting the thumbs also under control. I’m glad I took the pressure off myself, and gave things time to work as well.

New Month New Challenges.

Archive, Arthritis, Challenges, Randoms, Miscellaneous, Covid-19 Lockdown, Covid-19 Week Ten, Health, Hips, Hypermobility, Hip replacement

It’s 1st June, and if you have certain aged children, they are meant to be returning to school. Due to some lockdown restrictions lifted. And we can now see family outside in gardens or parks.

And with this change, we can finally collect our daughters belongings from campus. So that’s our mission today.

We had to book a slot, be as fast as possible, but also clear it out thoroughly. It’s a sad chapter to close, all those drunken pre drink get togethers, Sunday dinners made with pals, and cosy movie nights. All gone forever, not to return to this building again. It’s a process to work through emotionally.

Also today, it’s the start of 10,000 steps a day challenge for June, set up by #VersusArthritis

You can sign up here if you’d like to join in Miles Together

Obviously I could never do 10,000 steps let alone do them daily. But I’m here to support and corale all those taking part, and share their just giving pages too. I think it’s a great get together, and the Facebook group is full of wonderful people, find them here

Ehlers Danlos Syndrome Issues

Archive, Arthritis, Covid Week Eight, Covid-19 Lockdown, Health, Hips, Hypermobility

EDS Strike’s back!! This last couple of weeks have been honestly quite hellish. Pain is all consuming and it feels like there’s no end in sight.

This is a dark dark place to find yourself in, felt trapped and lonely and deeply depressed. It’s not often I’m this low, and I usually hide it away from others, except family as they physically see it.

But as it’s May it’s #EhlersDanlosAwareness month I thought I’d share my woes.

I have EDS Hypermobility type, formerly known as EDS type 3.

Hypermobile EDS

People with hEDS may have:

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person’s medical history and a physical examination.

On top of this I have MCAS too Last Cell Activation Syndrome,in which I can be allergic to the air, a scent, a food, a colouring at any time! Thankfully though mine seems to be more flushing and heating. So it’s manageable.

For my EDS my hips, ankles and shoulders are the most affected. And recently it’s been my shoulders, Ive wanted to amputate them so many times this month already.

To combat the pain and instability, as they are subluxing while dressing or brushing my hair, Ive been going back to basics, to pull the ligaments and tendons back into line to hopefully make the shoulder more stable.

Lying in bed with it just hanging down is literal heaven right now. The arms weight naturally pulls it right in the joint, so it sits comfortable.


With the ball I rotate it in circles going clockwise, then anti clockwise, and gently roll up and down. Though SMALL movements to ensure it stays in joint and not extending too much.

There are some amazing YouTube videos by #JeannieDiBon https://youtu.be/jQjKzp-QxWg

And you can find her on Twitter too, for a wealth of advice and guidance.

@jdibon Twitter.

19 Weeks #Etoricoxib

Archive, Arthritis, Blogger Reviews, Events, Covid 19 Week Seven, Covid-19 Lockdown, Health, Hips, Hypermobility

I’ve had to finally ring the GPs as I’ve been struggling a lot pain wise, out of sheer desperation I rang before putting in my repeat. I can honestly say I’m having the biggest flare I’ve personally ever had. Wonder if it’s lockdown related?

After a lengthy intro on covid and how to ring 111, I finally got to a human to book a telephone appointment, and it was literally in 5 mins, so that was fast.

We talked through the pros and cons on all other meds I’ve tried in the past, like pregablin (made me slur and fall over, not good when you already have mobility issues) amitriptyline (groggy forgetful and felt like death) naproxen (heart racing and no sleep for days)

We’ve sadly concluded that while steroid injections are NOT allowed here, I have to go and use the pain killer ladder,which is my splints gel paracetamol, etoricoxib and tramadol (reluctant to use as I hate the side effects) I had no choice but to agree.

They sent me a new gel to try, Ive only had over the counter ibuprofen gel before. Now I have this

Still testing my #SimplyCBD and it’s been just over 2 weeks, I will say no change yet in pain levels, but as ever some things take time. Perhaps while in a huge flare it’s unfair to judge, so I’m going to continue and try and get on top of this flare up, and see how it all goes. I’d rather this work than me taking tramadol again!! It took a lot of pain sweat and tears to come off that.

Walking Unaided Week 69 Post #HipReplacement

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Six, Health, Hips, Hypermobility, Hip replacement

I’m FINALLY doing it, not always especially well. And often with a bigger pay back than I’d like. But it’s a foundation to work upon.

My desire to ease the pain and disfigurement to my walking stick hand has drove me to walk unaided, regardless of trendelenburg gait. I’m experiencing the biggest arthritis flare I’ve ever had, could this be lockdown related?

The walks are usually pretty flat and even ground, as I’m not looking to run before I can master a real walk.

Sadly the walks we’ve had have featured some nasty fires lately, probably due to the lovely weather we’ve had, making everything so dry.

Air was heavy with the scent of smoke and burnt trees. Sad to see it damaged. But from this we’ve seen new life sprout up already in a week.

My biggest issue with walking unaided is obviously the fatigue afterwards,it’s all too consuming. And secondly is the pain which spikes up. Then thirdly is the swelling the leg always has afterwards. Measuring on average 2 inches fatter than opposite hip.

For now I’m enjoying the accomplishment of walking unaided, even if it does cost me a few days to recover from.

68 Weeks Post #HipReplacement

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Five, Health, Hips, Hypermobility, Hip replacement, SURGERY

I’m missing my physiotherapist for sure. But I decided to not let my physio routine slip. Though with my hands and hips I’ve had more flare ups since this all happened, wonder if connected with stress and anxiety??

Most days I’m doing static physio exercises, incorporating the Bosu ball as it’s amazing for balance and micromovements in the muscles. Feels like for less exercise I’m working the joints more.

While I feel improvement at home, I’m definitely NOT with walking, which is a huge disappointment if I’m honest. My hand is wrecked from my walking stick, it’s also dislocating/subluxing my shoulder too!!

So new goals I need to try and walk without it, but I’m still struggling distance with it. Catch 22. Though I have managed some walking without it (heavenly) while it lasted.

Walks are beautiful though and great for my mentality too. I’m just so so broken afterwards. Like 5 days totally off exercise and much movement after a walk. Anyone else? Leg swells up too.

The gradient is flat and not hilly really, even base too. So confused as too why it’s still causing so much groin pain.

At least it was a good opportunity to test the hip out, it’s just a shame I can’t ask for advice or see the therapist about it all.

17 Weeks #Etoricoxib

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Five, Health, Hips, Hypermobility

Its been a struggle, the last few weeks my hands have FLARED up so so bad. Each night it’s at its worst, feeling like they are being crushed in a vice, but they are simply resting.

My worst hand is this left one, the one I daren’t ever have injections I again after that disaster last time. Random swellings and crushing sensations in this one every day and night.

Right one better but not 100 percent. Has now weirdly developed a dip or dent where the joint is. It’s new to me, though I know others have it. Not sure why it’s appeared at all.

Feel like I need to discuss medication with the GP but also terrified to go. Not even sure there is anything they can do, I know I need surgery, but until I walk unaided it’s not even an option 😭😭😭 Has anyone else had an increase in pain?

Decided to source the 8 paracetamol a day, and take my etoricoxib as planned too, with an additional cbd oil. Could be pure placebo,or snake oil. But I’m willing to give it a chance, anything to settle these hands down. Started on Friday, so let’s see how this works out.

14 weeks #Etoricoxib

Archive, Covid 19 Week Three, Covid-19 Lockdown

Onto starting my third month of these, my second month at 90mg dose. And I am seeing and feeling an overall better relief. I have 8 left but ordered more, and I’m hoping they stay available.

It’s not a total relief, but better. Although this last week, I’ve found my #Arthritis as a whole has massively flared up, probably triggered from poorer sleeping, the time of the month!! As this makes all my joints super loose, thanks to #EhlersDanlosSyndrome

Joint slipped out again recently, so I spent the night wide awake, feeling like the thumb was being crushed! Only ice and freeze gel got me through the night, with lots of tears too.

I would take the 8 paracetamol I’m meant too, but the world went mad, and there’s never any available. So I’m rationing the ones I have.

And like others, I have no chance of any treatments either, as all OT, Physio and Micats are cancelled.