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Any ideas what might be wrong with me? Would I be wasting a GP's time? Lots of symptoms listed!

53 replies

Whattodoandwhy · 17/08/2015 10:02

I have an interminable inner voice that is saying "don't waste everyone's time". I know this is down to upbringing. So could someone please give me a nudge?

I'll try to give you all my symptoms and then you can tell me if this is normal or not. Hope that's ok :)

I have had joint pain since early teens, maybe earlier. My knees used to cause me constant, aching, pain. I was told this was normal, and growing pains.

I first put my back out so badly that I couldn't move when I was about 13. I started seeing an osteopath at that point. No GP. They would manipulate my spine every week, but new things would be out each time.

I had severe SPD during pregnancy, and ended up on crutches and in a wheelchair. Physio didn't help, but they confirmed I was hyper mobile (ticked all 9 boxes, but only just IYSWIM, I can't turn myself inside out, but can do the minimum for each test).

I sleep with a pillow between my legs to support my hips, and a shaped pillow (if I sleep on anything else I will be in pain for days). I still regularly have vertebrae out of place, but now just live with the pain as I can't see the point in having them put right when something else will go straight away.

My hips cause me pain and stiffness if I walk more than a few miles.

My thumb joints bend the wrong way, they are weak and can't support any weight. The more I use my hands the more all the joints ache and stiffen. Particularly my thumbs. I find writing with a pen particularly painful (even the special shaped ones only help a bit).

I often twist my ankles if walking on rough ground, regardless of how sensible my footwear.

Elbows will often suddenly give me sharp pain and then not bear any weight easily for a few days.

I bruise incredibly easily. I never remember where they come from. Looking at my legs now, I can count 18 bruises, ranging from small to huge black and swollen. I don't remember getting any of them.

Sometimes I get spontaneous bruising on the back of my hands. It feels like a pop, then pain and then a huge swollen bruise appears. No trauma involved.

I keep getting dizzy spells. Maybe only one a month. Always when I'm upright (so not when I'm standing up or moving). Usually when I'm sitting still. It feels like the room has suddenly been thrown sideways, only lasts a minute or so.

Other issues include very heavy periods with serious flooding (had hormones checked to see if menopausal a couple of years ago and nowhere near), always had very slow bowels (maybe go twice a week?), recurring cystitis (probably not linked but you never know), tilted uterus (again probably not relevant).

I'm just tired of being in constant pain.

I'm only mid 30s!

I've never actually mentioned all this to a GP (other than individual symptoms, never mentioned joint pain outside of SPD).

any ideas on what could be wrong with me? Would I be wasting a gp's time?

OP posts:
simplydivine05 · 07/09/2015 22:57

Hypermobility syndrome / ehlers danlos. No doubt about it. DO NOT embark on pilates unless it is with a physio as you can cause more damage. I had prolotherapy for my pelvic instability and currently have a good private physio. NHS was useless at dealing with it.

twittoo · 07/09/2015 23:33

Could be Marfans Syndrome. I have it and have the exact same symptoms as you, am also very tall. Most of my family have it and we have heart valve issues too. We were all diagnosed with a genetic test. I hope you find your answers soon, it is very frustrating when you have a collection of problems as the journey for a diagnosis was long. Good luck in finding the help you need.

Whattodoandwhy · 08/09/2015 07:26

Marfans and EDS seem to share a lot of symptoms. I have an appointment on the 15th with my GP to discuss the results of the blood tests and see about getting a referral.

I have arranged for a private Pilates class with an instructor who is experienced with dealing with women with SPD and joint issues. I'll talk it all through with her before I do anything. I am terrified of making things worse, but also desperately need to build up some strength around my joints.

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