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.

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.

9 weeks #Etoricoxib #EhlersDanlosSyndrome #Arthritis

Archive, Arthritis, Health, Hips, Hypermobility

I’m confused as to whether this is working. In general it smarts at the end of the day, so gel and splints come out.

Overall it’s better than the ibuprofen 400mg x 3 per day. I really need to remember the 8x paracetamol though to really assess it. I’m a devil for remembering them for some reason.

This weekend I did do this to myself, I was a wearing my splint in the evening, I gently put my thumb and first finger together to do a pinching action. And OH MY GOD the pain!!!

Usually I sublux joints often the MCP one,with no pain really. This time I fully dislocated the CMC joint, and holey moley did I cry.

Resulted in my unable to use my hand all Friday night, and Saturday day time. When at tea time I heard and felt a pop! And suddenly the pain and pressure eased off. Thankfully.

As you can see it drastically changed from Friday night to Sunday morning. Now I just hope this isn’t going to be a frequent occurrence like other joints.

New dose? new plans? Or stay the same #Etoricoxib

Archive, Arthritis, Health, Hips, Hypermobility

It’s been 7 weeks on etoricoxib and although I feel it’s going well. I’m in pain most days, especially if I’m doing eggs. Like this below.

It is making me squeal, and it’s swelling up too. Mainly the left thumb, but my right isn’t feeling too clever at times either.

Each night I’m bathing in ibuprofen gel, and wearing at least my left splint all night. And though it’s better, its not a total relief. I’m wincing just typing this out.

So while I had a weeks worth of 90mg etoricoxib left I rang the doctors, to ask what the plan forward was, different meds, additional meds or higher dose. Or stay the same at this manageable level.

And unfortunately it wasn’t good news, they can’t increase the dose, all I can do for now is add 8 paracetamol per day for the rest of my life, or while I’m pre surgery. And wear splints day and night.

They give a look of pity, which is a hard pill to swallow, when you realise there isn’t anything they can do for you.

Maybe it’s just a bad flare, one that could settle down, so I’m taking their advice and see if that realistically helps me. Next maybe it us time to tackle diet too?? For now I just need to process the news and try and move forward.

Least I have one nice funky cast cover to help with the ugly beige splint. I bought one as one hand is mainly worse.

You can find them here

And lastly I did these on a site, I have a #Hip one so I needed an #Arthritis one too

find it here

3 Weeks Post #Steroid #CMCjoint

Archive, Arthritis, Health, Hips, Hypermobility

I’ve had a full 2 weeks on etoricoxib now and I’ve discovered that taking at 4pm onwards seems to be more beneficial to me than taking earlier.

So I’m glad I experimented with timings, to see how it affected me. Had a few days of icing my left hand, which really helps which I never knew before. But the right hand that had the recent steroid is doing well.

I’ve tentatively gone back to exercise too,as I’m also rehabbing a hip replacement, so I need to move as much as the body will allow.

So onto my Xbox Kinect I have EA Sports, and using my lightest weights 2kg I have created a custom workout, to help lubricate the joints.

* Note others with cmc joint arthritis don’t do this unless you’ve spoken to a physiotherapist or doctor * For a warm up I did

  • Shoulder rotation 4 reps each side
  • Rainbow squats 4 reps each side
  • Good mornings, yoga move 8 reps
  • Bicep curls 8 reps
  • Bent over rows 8 reps
  • Lateral raises 8 reps
  • Heel raises

Not a lot, but early beginnings of moving and trusting the hands once again. I do feel like They need splinting to help stability, so I will do that in future.

Still getting a few moments of heart palpitations so I wonder if it’s worth mentioning to the gp?

2 weeks post #steroid #cmcjoint #Blogmas

Archive, Arthritis, Blogmas 2019, Health, Hips, Hypermobility

Christmas has been and gone, and I’ve survived the festive period. The hand has been well behaved for sure, but the left especially on Christmas Eve was causing so much pain, and tears.

Wore my splints, bathed in ibuprofen and took the 8 paracetamol and 3 400mg ibuprofen. Nothing was shifting it. And this I told the GP as I had a telephone appointment.

The outcome was to try #Etoricoxib instead. Never had it before, so eager to try. It’s similar to Naproxen but hopefully it wouldn’t make my heart race, and cause total insomnia. I’m on 60mg ones, just 1 tablet a day.

Started them Christmas Eve. Took at 3.30pm and I continued with the remaining paracetamol and splint wearing for the rest of the day. At 7pm I felt sick and woozy. Didn’t last long though.

Christmas Day I woke up like a new women, hands felt fine, and I took tablet at 1pm to try and bring it forward. No splints, no gel, just 4 paracetamol and at 5pm I got a splitting headache. Thankfully lasted about 30mins, similar to day before sickness lasted the same length.

Boxing Day it’s incredible, no pains, just a touch of sickness again but before tablet. That was at 7.30am took tablet at 12pm and I didn’t get any side effects hours later like previous days. Happy days.

Friday 27th December the left hand is nagging a bit, but I have used the hand a lot with cooking and holding babies whenever possible, so I’m not too concerned. Took tablet at 12pm and at 3pm on our walk, I felt my heart race a bit. Seems to be a 3hour mark I start to feel a bit different. Splinted hand (left) for walking stick, but I still somehow crunched the joint (extremely painful) using taps are causing a lot of pain lately.

Saturday 28th December is visiting family so I can truly rest it, and gage how it is. Took at 11.30am had a small blip of sickness feeling at 4pm, nagging aches in the left, maybe some mcp joint swelling, but right hand continues to be well behaved. Had to use a bit of ibuprofen gel to settle them. Sore at the night time. Wonder what is different to Christmas day?

Sunday 29th December I think I know what’s different? I took the tablet late in the day on Christmas Eve, so I’m going to do that today and see if that helps my pain levels and changes how I feel. Planning to take around 4pm and hopefully the evening will feel better and the following day. Though peeling potatoes gave me the same pain. Hit an increased heart rate at 9pm so that was 5hours after taking it.

Monday 30th December, it’s been 2 weeks since the steroid in the right hand, and it’s working amazingly, very very happy with that hand. I just wish the left had responded like this, as it had previously too. Feel better taking it at 4pm yesterday, so that’s my future plan.

7 Weeks post #SteroidInjection

Archive, Arthritis, Health, Hips, Hypermobility

For the last 2.5 weeks I finally have had some relief from that most painful steroid injection I had back on 7th October.

Think it was more painful this time as the space between the joint is so small now due to the arthritis.

Took a long long time to kick in, almost 4 weeks, and it’s either wearing off already, or the huge dip in weather temperature is to blame. As it’s nagging, not hugely, but I am aware of it most of the day.

I was hoping for the 9months relief I had gotten the first time. Alas not meant to be, though it’s nagging, at least it’s not that white HOT bone pain that I had previously.

The right thumb is flaring up, but I’m still too scared to go and get it done. Though I’m starting to get tempted. I’m trying to leave it as long as possible though.

Back to almost bathing in ibuprofen gel, and wearing splints. Curse you #Arthritis #EhlersDanlosSyndrome

3 Weeks Post #SteroidInjection

Archive, Arthritis, Health, Hips, Hypermobility

I’ve had a discussion with my MiCats Doctor, and we have to officially give the steroid at least 4 weeks to work, before I can say it hasn’t worked.

But in my mind I was already convinced, at 2 weeks it hadn’t worked, as I’d been using ibuprofen gel, and I was back on the splints too.

Now I’m at 3 Weeks the nagging pain seems to have settled. Though holding my walking stick, or picking up cups still ache the hand, but a least it’s not that fiery hot pain.

If it doesn’t work:

I have only one pain relieving option left open to me and that’s surgery. Though with a hip replacement looming, the Doctor feels that has to come first. So delaying as much as possible is my only option.

Also what if surgery makes me worse? I lose strength? It’s not like my hip surgeries have been immensely successful over the last decade. It’s only now I’m seeing some success, with more to come. So really it’s not a viable option.

But on the flip side it’s only going to get worse, harder to use, and lose strength anyway, and the need to wear splints. It’s a no win situation.

Family wise I don’t think they can cope with more surgery either, and is it really fair to put them through more, when I know the other hip replacement is around the corner anyway??

And you know what’s worse? I know I have to do the other hand, it’s already getting worse, since I got this hand done. Can I really face that awful pain, and almost passing out again? Not sure I can yet!

Week 31 post #hipreplacement

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

What do they say? Don’t RUN before you can WALK. Yeah I should listen to that advice!!

After my set back last week, and boy was it a set back!! I’d really pulled my hip, and the thigh swelled up, and felt like a golf ball when I sat down again!! So eager to never cause that again. It’s all change for my physio.

I thought on Monday I would do well, simply doing week 2 version of exercise. (Not my best idea honestly)

  • Hip flexion ankle weights 20 reps
  • Hip abduction ankle weights 20 reps
  • Hip extension backwards ankle weights 20 reps
  • Hip extension forwards ankle weights 20 reps
  • Mini squats 20 reps
  • Ball squeeze between ankles 20 reps
  • Ball squeeze between knees 20 reps
  • Traditional clam raise green banded 20 reps
  • Hip thrusts green banded 20 reps

I added in some free weights for the upper body.

  • Bicep curl 20 reps
  • Shoulder press 20 reps
  • Bicep row 20 reps
  • Tricep kickback 20 reps
  • Chest press 20 reps
  • Tricep overhead 20 reps

These were admittedly too much. I had to wear my splints as well. Hindsight I would say I wasn’t ready Arthritis wise to do these. Broke them down into 2 x 10 reps. My hands have caused a few tears and sobbing events this weekend.

And all was ok, until I needed to go out. And the front of the hip around the hip flexor is now in pain!! An I’m experiencing pain in the right hand side of my stomach, quite low too. So maybe it’s hip related, ie scar tissue, or I’ve pulled something?! Maybe the psoas??

So obviously Tuesday I’ve had to rest so much more, really limiting myself to straining it any further.

So here we are and it’s Wednesday and officially 31 weeks, and I’m nursing sore hip and groin pain. Frustrating but shows how it’s 1 step forward and 2 or 3 steps backwards.

No weight loss this week, but I have gone down in measurements so that’s proper encouraging to me. I take my measurements once a month, as I know this process is super slow compared to able bodied folks.

Day 179 post #HipReplacement

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

As I relax today, first time since last Sunday, I think about my week round up after another full week of physio. And I’m honestly pooped, it’s wearing me out, but in a good way.

This time I had switched up some exercises up, to challenge the muscles, and gain stamina.

And I also did 2 days of double the amount. Which I admit killed me off at the time, but I do feel better for it. I can vastly see how incredible the right hip is, but left glute is all but dead, I’m struggling to activate it at all. So going to try single leg hip bridges both legs next week.

I’ve also been drinking at least 4 pints of water per day, watching my calorie intake more, doing food swaps, and a bit of intermittent fasting. And in 2 weeks I’ve lost 2.2lbs.

So it’s been successful, the beautiful weather has helped massively. Next week is rain due, so that will be a challenge for me, and more outings planned, ie hospital physio appointment, as well as family outing for birthdays.

Hands are a huge issue, but I’m going to attempt doing weights next week as well, for a more overall body workout. Even if it means wearing splints for support.

My back, is horrendous, knees too. I’m at a lost, as I have had my form checked for all exercises, and I’m not straining either, yet everyday I wake-up and I can’t move for a fair while, I’m so stiff and achy. Roll on sept when I can discuss this with MiCats.

It could be because I’m due on, as ankles have also been playing up, and cracking as I walk. Something to keep an eye on anyways.