EDS update

I’m aware I  haven’t talked much about my Ehlers-Danlos this year, the reason being it’s thankfully the least of my worries.  My mast cell disease is far more troublesome and scary, and my ME rules what I can and can’t do every day, which is why the focus has been more on those.  However, that doesn’t mean my EDS has done a bunk so I thought I’d do an update on what’s going on with my badly behaving collagen.

As I’ve mentioned in my weekly update posts, the greater trochanteric bursitis in my hips finally seems to be settling down.  It took months of activity rest last year, followed by months on crutches, but at least I’m not in acute pain any more and am able to walk without looking like a constipated duck.  I fear though that my hips will never be the same again.  They are extremely stiff and I can no longer sit or sleep in the positions I’ve used since I was a baby.  I also have to be extremely careful when walking, always using my SI belt to stabilize my hip area.  I do still have pain and as I’m sitting here typing this in my bed both hips are on fire, but at least it’s now manageable which might be the best I can hope for.

My hands too have been really quite good during the past 8 months or so.  In 2013 they were giving me all sorts of gyp and I was wearing Oval 8 finger splints every day, plus my wrist braces whenever I did anything.  I have no idea why but all this seems to’ve calmed down and I haven’t worn my finger splints yet this year at all, and my wrist braces only occasionally.  Yayyyyy 🙂

I had really painful tendonitis in my right elbow for the whole of 2012 and 2013, but this has also improved and only niggles now if I’ve overdone it.  Big Brucie bonus, cos you don’t realize how much you use your elbows until they hurt!

My knees were playing up late last year, with strain-type ligament pain on the inside of both legs but again this seems to’ve calmed down without any intervention.  I do have orthotic insoles in every pair of shoes I possess though, including my slippers, and dread to think what my ankles and knees would be like without them.

Speaking of ankles, apart from stiffness when I’ve been in one position for a while, they too seem to be doing OK.  Horrendously stiff ankles first thing in the morning in 2010, which made walking for the first hour of every day impossible, was the symptom which eventually lead to my EDS diagnosis.

On to the negatives.  My eye floaters are appalling and reading or doing computer work is tortuous.  If I could tolerate drugs of any kind I’d be at the eye hospital for laser work or a complete lens fluid replacement but with my MCAD I just can’t risk it (or afford it at £2,500 per eye!).

My right jaw is still bothering me, although to be fair it’s less painful now I’ve had my upper right molar removed.  I have a mouth brace to try but it’s way too tight and makes my teeth throb.  I really do need to make an appointment to get a better fitting brace made – it’s on my ever expanding list of “things to do!”.

I thought having my molar out would cure my teeth/gum/cheek bone pain but sadly that’s not been the case.  My cheek bone still aches constantly and the teeth on either side of the molar that was removed are sore and tender.  I thought this would settle down in time, but it’s now been 8 months since I had the tooth out and nothing much has changed.  It’s hard to describe the symptoms as the pain isn’t acute, it’s more of an irritating, annoying achy pain like an itch you can’t scratch.  I constantly want to bite down hard on my teeth and rub the gap in my gum where my tooth was with my tongue.  There is barely a second of any day where I’m not aware of my missing tooth and my surrounding teeth, which isn’t how I imagined it would be.  Not a clue what’s going on there and the dentist is none the wiser either.

I’m having some issues with my neck, in as much as if I tilt my head backwards (eg to lie on a pillow) I get pins and needles and feel weird and dizzy.  Solution: don’t tilt your head back Jak 😉 .  Seriously, there’s no point in having it scanned or anything being as though surgery is out and any kind of drug intervention is also out.  Zero pointyness.

My stomach/GI problems are many and varied and demand a post all of their own but suffice to say constipation, pain, severe nausea, cramps and reflux are the worst offenders.

My biggest problem at the moment EDS wise is upper back pain.  It’s right between my shoulder blades and feels muscular in nature.  I think my ligaments are really weak and by mid afternoon they’re just too tired to hold my upper body upright without straining to the point where the burning, aching pain is hard to live with.  I’m also having acute pain along my rib cage on the right hand side and have a really sore point when it’s pressed.  Could be ligaments again, or rib slippage or any number of other things.  This back and rib pain is difficult to treat, bearing in mind I can’t take drugs and it’s impossible to place TENS pads in-between your shoulder blades yourself, even when you’re super bendy 😉 .  I haven’t been able to find a wearable upper body brace either – my DD breasts keep getting in the way!  So if any of you have recommendations for comfortable upper body supports which don’t cost the earth and can be bought in the UK please let me know.

So, that’s me from H-To-T.  More fragile than fierce but it could be a whole lot worse!

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5 thoughts on “EDS update

  1. naturallymum

    I feel the same, EDS has been more of a side line! We recently started seeing a new osteopath and she has reminded me in no uncertain terms that I need to pay more attention to it. The girls and I are now actively working on core strength and pelvic floor muscles. It turned out that E’s stomach muscles were divided in the middle (something that should close up at about 3 months old with normal baby movements) and S’s diaphragm is hugely misaligned due to unbalanced muscles. Apparently S’s can have a direct effect on the valve between the stomach and oesophagus keeping even more lax and potentially open most of the time. E’s will be having an effect on her intestinal motility. I was slightly horrified that the doctor’s didn’t pick up on this, E’s especially (I can literally put my finger in the gap when she clenches her stomach, it is that wide!).

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    1. Jak Post author

      It’s amazing what doctors etc don’t pick up C. The maddening thing is the damage that’s done when you don’t know about these things – if you knew you’d take more care! I started with back pain at the age of 11 and trotted backwards and forwards to the hospital for 5 years – in the end they said it was psychological and I was attention seeking :-/ Of course, it turned out I had scoliosis and spinal stenosis which had to be operated on when I was 16, but by then my nerves had been permanently damaged and I was told I’d have back pain my whole life – and they were right 😦

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      1. naturallymum

        Suffice to say I don’t ever put my faith my in doctors. I will happily listen to their advice but at the end of the day it’s not worth the risk if they are wrong. I was told that E’s reflux was something she was doing on purpose, I was furious and even our GP was shocked. They might have gone to medical school but I’m not sure playing God was on the curriculum.

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  2. Traci

    Like you my worst symptom seems to change from year to year. Have you been tested for lyme disease? I found out this year that I have it and it is probably the cause of all of my other ailments.

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