Day 93 #hipreplacement #EhlersDanlosSyndrome

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

After receiving a comment from a fellow blogger (find them here) they suggested I should explain more about #EhlersDanlosSyndrome and honestly I should.

What is Eds?

So Ehlers-Danlos syndromes (EDS) is a group of 13 individual genetic conditions, all of which affect the body’s connective tissue.This Connective tissue lies between other tissues and organs like a glue, keeping these separate whilst connecting them, this glue is tasked with holding everything in place and providing support.

In EDS, there is a gene mutation (like an X Man, the nerd in me loves this!!) that causes a certain kind of connective tissue, what kind will depend on the type of EDS (which type out of 13) (Hypermobile Eds, Hypermobility spectrum disorders, Classical Eds, Vascular Eds. They all fit under these umbrella labels)

This gene mutation is usually a form of collagen, this causes it to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS (NOT ME) My skin has never stretched like that, but I scar and bruise incredibly easy. Individuals with the condition may also be able to extend their joints further than is usual (This is ME) this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, Everyone’s bodies, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, this makes it hard to connect and diagnose, despite this EDS is often an invisible disability.

Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.

Now it’s important to remember my #EDS isn’t the same as another #EDS as we are all individuals, and with that said it’s also why it’s incredibly hard to diagnose. We have a collection of symptoms, that are easily explained away and not connected.

I mean who thinks, velvet soft skin is connected to a thundering heartbeat because you stood up? So they came up with a series of movements to test for it.

The old way to classify Ehlers Danlos Syndrome was to use the Beighton Scale. The Beighton score is a set of manoeuvres used to judge if there is evidence of joint hypermobility. There are 9 points, and a score of 4 or more is considered a sign of there likely being generalised joint hypermobility present.

Now at the time of diagnosis in my early 30s I scored 8 of 9. Now there’s a more comprehensive way of scoring, found here Now I’m older and a lot more stiffer, so flexible I am not anymore. Therefore I would fail this tests above, but that doesn’t mean I don’t have it.

But these new ways of scoring takes that into account. So if you could touch the floor with flat hands without bending legs, bit no longer can you still score a point.

This helps the reclassification of certain symptoms, so I was diagnosed with EDS type 3 which is the Hypermobility type. Now it’s known as hEds Hypermobility Ehlers Danlos.

How does it affect you?

How does it affect me? Good question that I’m not entirely sure of myself. I know I feel pain all the time, from holding my own skeleton together and in the correct position. It’s so easy for my shoulders and hands to go beyond their natural range. Now I personally find this extra lax during my menstrual cycle, it’s like every joint I have comes out of joint, super super easy. It’s due to hormones creating the environment for this to happen around the cycle.

But as I said earlier it affects how I heal, so bones take longer to knit together, but likewise I’ll produce more scar tissue inside healing sites. Scars are often keloid or stretched and wrinkly. I bruise from being barely touched at times.

My three biggest ways I’m personally affected is the early onset of Osteoarthritis, my hip was grade 4, my mobility is awful, but I use to do gymnastics and horse ride. Now I can barely walk unaided. My hands are stiff and painful as they too have Osteoarthritis too.

My teeth are weak and crumbling, and dental visits are scary. For many years I have cried and complained that the anaesthetic doesn’t work, but no one listened to me, and then a few years ago they found it was an EDS symptom!! I have dentist now that knows about this and adjusts accordingly.

Finally how does it affect me, in a major way it screws up painrelief, I’m in pain but the meds don’t work. So fentanyl strongest drug out there? Nah doesn’t work, worst way to find out was when I had my first big op, it was a triple pelvic osteotomies and valgus femur lengthening. I was given Epidural (this does NOT work either) and Fentanyl, worst week of my life. But some gps out there, think you are attention seeking or drug dependant. You need these meds to function, to complete normal daily living, not to get high!

Since my first surgery, we’ve adjusted it to spinal, and morphine pump that I control. Now surgeries haven’t been as bad since thankfully, as I’ve had another 9. I find natural morphine better for me than synthetic versions of it that don’t work.

Now I’ve prattled on long enough, I best let you go. Hopefully by now you’ve learnt a bit more about Ehlers Danlos Syndrome. I’m still learning myself.

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Day 92 post #hipreplacement

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

It’s been a week since I saw the GP about my hands, and I’ll be honest the increased ibuprofen and ibuprofen gel hasn’t really made that much of a difference painwise. But maybe a week is too early to tell? So I will give it longer.

Wearing the splints help get things done but are cumbersome and irritating. But wearing the gloves at night are good, so that’s a win!!

Splints with weights are Interesting let’s say that. It’s hard while my hands are like this to actually hold weights, so in place of weights sometimes I use resistance bands instead.

Its not the weight itself I find difficult, more the grasp, it could be a pen at times and I simply can’t hold it. Frustrating to say the least.

So working the hip it is today, give the hands and shoulders a break. Though I’ve decided I’m staying away from any exercises that mean I have to lie on my operated side. It’s too dreadful for words.

  • Hip Flexion ankle weight 15 reps x 2
  • Hip abduction ankle weight 15 reps x 2
  • Hip extension ankle weight 15 reps x 2
  • Calf raises ankle weight 15 reps x 2
  • Heel to butt ankle weight 15 reps x 2
  • Mini squat 15 reps x 2

Not too much today, as joints are extremely lax this week. It’s the old Ehlers Danlos coming out to party, and by party I mean utter misery ball of pain.

Day 90 #hipreplacement

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

It’s always up and down health wise, I guess it’s the #EhlersDanlosSyndrome not really helping. But I’m pleased to say it’s not actually my hip causing any grief at the moment.

And because it’s that time of the dreaded month, every joint comes out to play. Cleaning the cooker, my shoulder decides to pop out!!

So with this is mind, I’m thinking I need to keep on going with the occupational therapists shoulder stabilizer exercises.

  • Ball on wall circle left 20 reps x 3
  • Ball on wall circle right 20 reps x 3
  • Ball on wall up + down 20 reps x 3

  • Band shoulder abduction 10 reps x 3
  • Band shoulder internal rotation 10 reps x 3
  • Band shoulder external rotation 10 reps x 3
  • Band shoulder extension 10 reps x 3

All this exercise is always to help stabilise my joints, help my muscles and tendons do the work the joint should actually do.

Day 87 #hipreplacement

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

This weather is causing pain pain pain, and a healthy dose of stiffness and immobility with that.

So far this week to control the hand pains I’ve been taking 400mg ibuprofen x 2 but I’ll admit it’s not really helping, on top of that I’m using ibuprofen gel. At least I can splint them, and use gloves.

However the hip isn’t feeling any benefit from Ibuprofen, but it aches deep in the thigh crease where pelvis meets the thigh, Or bikini crease area I should say. With the increased rain, I’m noticing that the hip still feels seized up and stiff, exactly like it did with Arthritis?? So for this I’m adding Paracetamol. And see if that helps.

Today’s physio is focusing on lubricating joints to ease pains.

Shoulder exercises

  • Circle ball on wall left 10 reps x 3
  • Circle ball on wall right 10 reps x 3
  • Push ball on wall up and down 10 reps x 3

Then hand exercises

  • Make an O with each finger 10 reps x 3
  • Raise thumb 10 reps x 3
  • Thumb abduction 10 reps x 3
  • Thumb scoop and up 10 reps x 3
  • Wrist up and down 10 reps x 3
  • Make a fist and open 10 reps x 3

Hip exercises

  • Glute squeezes 10 reps x 3
  • Quad exercise 10 reps x 3
  • Short Arc quad 10 reps x 3
  • Ball between Ankles squeeze 10 reps x 3
  • Ball between knees squeeze 10 reps x 3
  • Hip abduction 10 reps x 3
  • Single leg raise 10 reps x 3

For these exercises I find I can do many while sitting down, watching the TV. And I break them down in 3 sets, so one set in the morning, then a set after dinner, then one more in the evening. So although it looks a lot to do, it’s easily slotted into my day.

Day 85 monster walks

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

I am loving the resistance band monster walking, I feel it really is targeting the weak muscles, and it tires them out pretty quickly.

So todays physio as knee isn’t too bad, is absolutely simplistic.

Monster walking (Red Band) 50 reps x

    2

    Step ups (No Band) but no stick 50 reps x 2

    So little done, but my god it hurt my back (probably piriformis area) and my thighs in a muscle type way.

    Caught up with the GP to discuss my hands and my inflammatory arthritis. And although it wasn’t what I wanted to hear (ie they can’t book in steroid injections) as the bone is destroyed over time, so it’s best to not get too many.

    Instead the plan is to wear the splints more, the gloves every night. And take my 400mg ibuprofen every day up to 4 times a day, ideally 3 times a day and map how it affects the pain and mobility. Also to use ibuprofen gel, and keep up the exercises too. If they all still don’t help, to then go back and speak again on options for pain reduction, and stiffness.

    Not what I thought would happen, but hell I will give anything a shot!! And obviously my trusty hot water bottle and wheat bags are always my trusty friends too.

    Day 72 #HipReplacement Red or Green Band?

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

    The last few days I’ve not managed to get outside and walk, so it’s been hydro or physio at home.

    I’m back on the red band as I can do the exercises with it, with reasonable ease. But I’m debating whether that’s good or not? Like is it wise to do more reps with low resistance, or low reps with high resistance? Definitely something to ask at hydro next week.

    Back to

    • Glute exercise 20 reps x 2
    • Quad exercise 20 reps x 2
    • Heel Slide 20 reps x 2
    • Hip abduction 20 reps x 2
    • Single leg raise 20 reps x 2
    • Short Arc quad 20 reps x 2
    • Clam side drop 20 reps x 2
    • Ankle ball squeezes 20 reps x 2
    • Knee ball squeezes 20 reps x 2
    • Long arc quad 20 reps x 2

    Used the RED band throughout, and 2 sets took 40 mins. I felt a few twinges around the groin, nothing to worry over but enough to need rest and hot water bottles.

    Following rest and warming of the joints I carry in with these

    • Hip flexion 20 reps x 2
    • Hip abduction 20 reps x 2
    • Hip extension 20 reps x 2
    • Heel to butt 20 reps x 2
    • Mini squats 20 reps x 2
    • Step ups 20 reps x 2
    • Monster walk 20 reps x 2

    Feel it in the butt when I do the mini squats, and admittedly the hip flexion isn’t my friend either. Pulls at the groin, and hip flexor. These 2 sets took 40 mins as well. Did both legs as well, so that’s only my second time of including the opposite hip on the standing exercises. Feels good but quite hard.

    At least I don’t have to focus on my hands and their pain while doing these exercises.

    Day 71 Hydro and OT appointments

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

    Yesterday was Wednesday and I had my appointments for both OT (Occupational therapist) then closely followed by Hydrotherapy. It was brilliant to have on the same day, saves traveling and parking two separate days.

    My first appointment was OT and I showed her my photo of my swollen knuckles, and explained the pain.

    And she gave me some compression gloves to start wearing, whenever I feel like I need them. To gently compress and warm the hand joints.

    Totally not attractive, I mean look at them!! But needs must. And I also need to make an appointment with the gp, to discuss steroids or effective pain relief.

    So that was done, time for Hydro. And following the weeks walking adventures, I was already tired. But eager to workout as hard as I could too.

    • Walk up down pool forwards x 3
    • Walk up down pool sideways x 3
    • Walk up down pool backwards x 3
    • Hip flexion 20 reps x 2
    • Hip abduction 20 reps x 2
    • Hip extension 20 reps x 2
    • Step ups forward 20 reps x 2
    • Step up sideways 20 reps x 2
    • Push float down core exercise 20 reps x 2
    • Mini squats 20 reps x 2

    That was honestly me done, I hobbled out exhausted but accomplished. Once home and dinner done, I promptly fell asleep again. It’s definitely wearing me out proper!!

    10 weeks post #hipreplacement

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

    When I first embarked on this journey 9th Jan I can honestly say I was not prepared. I thought I was but looking back now, I know my expectations were way off. I expected to be magically pain free, skipping up the mountains as others are.

    Not me, even at halfway through I was beginning to think I couldn’t see a way out, it was never going to happen like it does for others. I was whiney I admit it.

    But then just like that it’s started to fall into place. I find myself turning in bed with greater ease, though the pillow is still my friend.

    I find walking unaided better around the house, but it still tires out quickly and that brings the limp and thigh pain.

    As I said I’m still getting pain at times, from deep inside the thigh, or deep in the buttock, under an old scar. Groin pain occasionally flares up, or the golf ball swelling. And the scar sometimes stings or is itchy? No idea why though.

    Stairs I hate hate hate, it pulls at my operated sides knee. But I’m getting up them better, as long as they have either 2 Bannisters or 1 I can hold and stick the other side.

    Got myself a new Tee, I had too. It shows I have Custom Parts as my hip replacement is custom made. So I’ll be wearing this to the OT and Hydro appointments.

    Day 66 Back in the Swing

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

    Following enforced days of rest, or opting for housework instead. I’m back onto the physio train. And I’ve found that actually these days off are far more beneficial than I ever thought.

    I’m finding the post op exercises you are given are getting easy to do once again, even though I’ve now introduced the RED band on ever exercise.

    So this time, instead of solely focusing on the Right (Operated Leg) I’ve done the other leg too. Which means standing on 1 leg!! My surgery leg. I’m nowhere near doing this unaided, so the walking stick was very needed.

    It feels good to be working the legs out equally. Though it was very tiring and sore afterwards. It feels good to progress.

    • Glute exercise 20 reps x 2
    • Quad exercise 20 reps x 2
    • Heel Slide 20 reps x 2
    • Hip abduction lying down 20 reps x 2
    • Short Arc quad 20 reps x 2
    • Single leg raise 20 reps x 2
    • Clam on back let legs drop out 20 reps x 2
    • Ankle ball squeezes 20 reps x 2
    • Knee ball squeezes 20 reps x 2
    • Long arc quad 20 reps x 2

    These took 40 mins to do the 2 sets. After these I need a break, reset my stiffness and have some dinner. I rewarded myself with #Supernatural episode while I did these.

    The next lot I struggle more with, especially now it’s standing exercises, and that’s my weak point, especially standing on one leg, either side is weak. So no good sides here. Put on #Legacies to help distract my mind while I did these, took the 40 mins to do 2 sets.

    • Hip flexion 20 reps x 2 (still one of the hardest exercises for me, aches on the lift)
    • Hip abduction 20 reps x 2 (hard to stand on operated leg only, unsteady, need stick a lot)
    • Hip extension 20 reps x 2 (again hard to stand on the one leg)
    • Heel to butt 20 reps x 2
    • Onto tip toes 20 reps x 2
    • Mini squats (felt good doing these for once) 20 reps x 2
    • Step ups 20 reps x 2
    • Monster walk 20 reps x 2

    Promptly fell asleep afterwards I was shattered. Just goes to show, that still over 9 weeks this recovery process is kicking my ass.

    Day 60, how time flies!!

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

    It’s incredible how fast this time has gone. I’ve gone from pain all day every day, to muscles aches and thigh pain. Which is manageable with rest and hot water bottles.

    I will say I have end of stem pain, but I can’t seem to find much out about it. I think it could be because I’m a cementless stem. Maybe it’s the bone growing through it? I find I only get it when I’ve done too much. Usually a Hip Flexion does it.

    So with that said, Sundays workout is nice and gentle, so I don’t aggravate the thigh.

    • Shoulder circle ball left 15 reps x 2
    • Shoulder circle ball right 15 reps x 2
    • Shoulder push ball up + ball 15 reps x 2
    • Shoulder press 15 reps x 2
    • Bicep curl 15 reps x 2
    • Lateral raise 15 reps x 2
    • Bicep row 15 reps x 2
    • Tricep kickback 15 reps x 2
    • Goblet squat 15 reps x 2
    • Clam sideways out 15 reps x 2 (red band)
    • Hip bridge (red band) 15 reps x 2
    • Chest press 15 reps x 2
    • Supine marching 15 reps x 2

    I am overall feeling a lot stronger and recovering from muscle aches faster. I have been able to sleep on my side without leaning forward. Woohoo! Can’t say it’s the most comfy but it’s progress. And I caught myself crossing my legs at my ankles (bad habit, needs to go really. But impressed I could do it)