Honeycomb hips

People often ask me what’s it like to have Rheumatoid Arthritis. This is what it’s like. It feels like I have flu everyday, with aching, stiff, swollen and heavy joints that actually crack when I move sometimes. My hands feel as if I’m wearing rubber gloves with padding in them and when I bend my fingers all this extra flesh has appeared from nowhere. They look like Michelin Man’s female companion’s hands (if he had a female companion). Never-ending fatigue, joint and muscle pain day and night. Distorted hands and hollows on parts of my body where muscles are wasting away. Feeling weak and ‘shattered’ constantly.

Previously simple tasks such as getting out of a seat require lots of preparation and effort. Gradually edging towards the edge of the seat, gripping on to the sides, and using all my might to lever myself into an upright position uses up a lot of energy. Standing when about to get off the tube train (or bus) involves holding on to the rail with both hands and trying (and usually failing) to remain rooted on the spot (but this is due to having Ehlers-Danlos Syndrome rather than RA).

Walking isn’t something that happens naturally now. Each step is a slow, conscious manoeuvre and my spongy knees and creaking hips are always painful. My hips and knees feel like honeycomb inside – as if they are hollowing out and becoming unstable – but I don’t know how much of this is mental or physical as I have never had a full body MRI scan and last had a DEXA scan a year ago.

Putting clothes on becomes a lengthy performance as buttons are hard to do up. I’ve actually broken the chain on a necklace twice because I couldn’t do it up properly and took it back to the shop to be told, gently, that no one else had had that problem. I was crestfallen. To their credit, they gave me a new chain each time. I then decided to buy a nifty gadget that fits on my necklace that acts as a magnet and means I don’t have to undo necklaces in the conventional way. Relatives bought me a special plastic ‘flower’ that means I can open bottles more easily without having to ask strangers in cafés or on public transport to help me. I’m on the hunt for other gadgets or innovative ideas to make living with RA and EDS easier and to free up my time to live as ‘normally’ as possible.

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4 thoughts on “Honeycomb hips

  1. I’m trying to find things to aid myself with daily tasks as well. I too have EDS along with many of the complications that come with it. I use a cane to walk, but I am constantly dropping it!

    I can not bend over, so I use one of those long handle grabber things to pick things up from the floor.

    I have almost no grip left in my hands. They give me big trouble… I’ve started sleeping with wrist/thumb braces on because I dislocate my thumbs (among other joints) in my sleep.

    My ribs in my back right side subluxate a lot too. I haven’t figured out how to stop that yet.

    I’ve reduced myself to wearing yoga pants and t shirts so I don’t have to button or snap anything.

    Simple things like taking a shower and shaving my legs are ridiculously painful, time consuming, frustrating and exhausting.
    Do you find yourself feeling this way too?

    • Thanks for commenting. Yes, I can totally relate to what you say. I am constantly dropping things because my grip is so bad and find it hard to bend over. For example I left a fork on the floor a few weeks ago as it was too difficult to pick up, forgot it was there, then trod on it and had to go to hospital! Maybe I should look into getting the grabber thing you mention, I can visualise it but can’t think of the name. I dislocate my thumbs too but not in my sleep (does that wake you up?). It’s interesting you mention ribs sublaxating. I recently had a chest x-ray due to ribs looking abnormal but I hadn’t broken anything – although it was agonising. Perhaps a rib had subluxed? I need to discuss it with my doctor. Yes, I tend to wear t-shirts and clothes with elastic or zips in rather than buttons. I gave up having showers a while ago and just have baths as it’s too tricky and painful to stay upright. I’m now looking for some useful products to help that are ideally not just functional, but stylish too.

      • Subluxations will NOT show anything on an xray or scan and YES it can be extremely painful when it happens. Subluxations are almost like dislocations except the joint doesn’t completely come out of place, or it quickly goes back into place is it does go all the way out.

        Usually I can get the dislocated rib back into place by hugging myself really hard and maneuvering it around.

        People with EDS usually subluxate a lot. It happens to me multiple times a day in all kinds of different joints. This sounds like what may have happened to you because the pain can be very excruciating. Although some of my joints don’t hurt when it happens… sometimes it’s more annoying than anything. You should definitely mention it to your doctor, even though there’s not much to do aside from wearing a brace to keep joints in place.

        Healthier people can do physical therapy and build some muscle to help protect the joints, but since I have EDS I can’t do that. It only injures the joints more because my connective tissue is messed up and rapidly degenerating, so I have braces for multiple body parts haha. Make sure to ask your doctor about this too.

        I have sleep apnea and that usually wakes me up, then I notice my dislocated thumb (s) and or fingers.

        The grabber thing… I got it at Dollar Tree… for a dollar. It’s amazing. It’s fairly long so I can even use it to grab things from my far nightstand when I’m in bed etc. And it doesn’t take much of a grip to make it work.

        Here’s my email if you want to chat more or if you ever just need to talk or vent 🙂

        wdmcmahan@gmail.com

        Please email any time, if you want. I’m trying to form some kind of email support group for invisible illness sufferers because the only people who can truly understand what we are going through are the people with the same types of afflictions we live with every day.

        There are 2 people I email or skype with on a regular basis now and it’s been really nice to talk about what’s going on and have someone listening who actually gets it 🙂

        Hugs, Kat

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