Severe joint pain + SPD

[mummy3]

Back story, I have Ehlers Danlos syndrome type 1. This comes with extreme hypermobility, dislocations, pain, sprains, very easy bruising, bleed heavily and easily and skin tears easily and stitches/wounds take a lot longer to heal and also stretch and reopen as well as premature babies from pprom. I also have Isaacs syndrome, an extremely rare progressive neuromuscular disorder that causes my muscles to continuously move, spasm, cramp up and then permanent muscle stiffness and contracture. Very unfortunate mix of loose joints and crazy muscles!!!

Anyway, I'm having a lot more pain and dislocations with the pregnancy hormones, I dislocated my knee yesterday, got it back in but it seems I tore something in the hip area. I had to go to the ER where they gave me a morphine shot and a letter for my rheumatologist and recommendation to go to the ortho surgeon asap (I'm not entirely sure what they'll do, I was referred last pregnancy but delivered at 31 weeks before I got in). I'm having to use my wheelchair already

Is there anyone else going through severe joint pain, I know unlikely the whole body but it would be good to speak with people having a lot of difficulty with mobility and pain esp in the pelvis/hips

 

[Charliemarina]

hey hunny, sorry to hear ur in so much pain it must be awful...i dont suffer with any of ur conditions but i am being tested for RA as before the pregnancy happened i was suffering with bad pain in right hip and it started locking up at times which is a pain i just cant describe its agony plus scary,,,my right knee also started to hurt especially when swimming...i also suffered bad spd in all pregnancy's starting at just 13 weeks which was bad enough...since becoming pregnant my right hip is getting worse...locking more often and always kills if i sit in one position to long or walk to far...keep thinking to myself this pregnancy is going to be hell with this issue and already i think im right sleeping is very hard to because of the pain but due to not being diagnosed yet im not being treated apart from midwives referring me for spd physio now rather than at 20 weeks which im hoping will help but my worry is will it be bad for my hip if i do actually have RA? so im a bit up in the air at the moment with worry so i kind of know how ur feeling

 

[mummy3]

Oh hun I hear you

What do you mean by locking up? Mine goes out and will click/pop back in, very painful, does that sound similar?

When will you get the appointment for your dx? I know for me if PT isn't done right it does cause more damage, do you think you could speak to your specialist beforehand and get some guidelines on what will help and what might damage?

The lack of sleep is brutal I see you have to be up and mobile as much as you can too with the little ones

Do you have the use of a cane/walker/wheelchair? It absolutely sucks to use them but does make life a bit easier.

Just got to try and get ourselves through this in as much of one piece as possible