To expect more help from GP?

[ARoomSomewhere]

I am 50 this year.
Since being pg with ds 14 years ago i have been on crutches.
I had a lot of IVF and i got v bad symphysis pubis (where the ligaments soften and your pelvis and other joints become unstable). Usually, it resolves but it didn't with me. I had a 2nd child = same.
I have a lot of pain mobilising and feel weak and tired. i faint quite a lot. Its hard just getting through the day / looking after the kids yet alone being well enough for a return to work which i would like.

I developed sleep apnea and use a CPAP machine but i also have disturbed sleep due to my kids both being ASD (1 just dx 1 in system)

Due to my reduced mobility and tbh overeating of the wrong foods due to depression i gained a lot of weight over those years. But
I have worked hard on my weight and reduced my BMI from 45 to 32 and am aiming for 28. It is hard as i cant exercise much but i am committed to taking responsibility for this.

I saw my GP recently and she shrugged and said: 'keep up with the cocodamol add ibuprofen and sit down a lot. you can self refer for physio but you've probably upset things by losing weight, your balance will have changed'. I came home and cried.

Now i know my GP is rubbish but is there any hope elsewhere?
(im v rural and changing GP is not easy)
Additionally, my lifetime award of high level DLA is being moved to PIP, With this level of understanding / support from GP i expect to lose it.

lynmilne
I am SO SORRY to hear that. So much for May 'ringfencing' disabled benefits. Its shocking what is happening in our country.

I want to get better because ive lost 14 years of good health. I've brought up two young children (ASD) on crutches. Stood on crutches at the side of an A road whilst they had autistic meltdowns and I could barely bend to pick them up. Tried not to cry as i sat on their beds at night for storytime, totally zonked by painkillers without which i'd not have been able to get out of bed. I've HAD ENOUGH.

To be reassessed adn lose my DLA (ironically just when we finally get ASD dx for ds) is the icing on the cake frankly. Sorry, sore and bitter this am!

3luckystars yes. Im 50 but still menstruating. Worse around period but also ovulation too. They did lots of hormone tests around the ivf time. I was normal. now my testosterone is elevated (not sure what atm) that was blamed on weight gain. But im down to bmi 32 now. not ideal but much better and im still losing. I do have a good going beard (:( so ive wondered about PCOS before but GP just shrugged it off.

I think i was prob undiagnosed Hypermobility (poss even hEDS). My theory is my hormones were then so hit out the ballpark by all the ruddy IVF and that affected my Ligaments and wrecked joints/ nerve impingement etc and its all simply never recovered. Of course i unwittingly made it worse by gaining weight / poor posture but im sorting that.

Does that theory make sense ?

My physio explained that some SPD is far more related to hormones than joints etc. I’m very hyper mobile and she said for me and people like me, it’s all about core stability.

I’m so sorry so much of your life has been taken up with this shit. But honestly, the weight loss is good for many reasons but if it was the silver bullet for SPD there wouldn’t be a raft of slim women suffering with it.

Focus on your core and really try.

Also, can you take / have you tried other NSAID drugs? I found diclofenac and naproxen more helpful than ibuprofen.

Merry THANK YOU! this makes complete sense to me.

Ive had years of 'oh, SPD always resolves at birth' followed by 'you are fat, no wonder you ache' when i cant WALK / turn over in bed properly...

I wish i knew where to access a specialist physio - i'll not get one on NHS and i cant afford to waste money 'trying out' a few. Can you recommend ( i could poss travel as a one off).

I appreciate i can look up core excerises on line and get on with it.
I can get to an inexpensive community gym too with standard equipment (no instructor) but wouldnt know where to start and am scared of making any pain worse?

I will go back to GP and ask for diclofenac / naproxen. I was on them some years back. Is it one or the other or both (cant remember now).

Sorry for 20 Qus but your situation sounds similar so keen to pick up any helpful advice.x

Ask the GP to refer you to a women's health physio. It may mean travelling to a larger hospital but they're the people who specialise in pelvic health

I'm so sorry about the pain and the lack of help. I have slight joint hypermobility and some joint pain myself and from experience I would say that losing weight could really help so keep going with that. I find that it makes quite a lot of difference.

Hi op. I find my RA consultant and nurse the best support. The gp is more like an additional check on my bloods, how I'm getting on generally, but I've never had specific advice from them. Can you swim? I'd recommend front crawl/ back stroke to balance that. And a remedial Pilates instructor. I hope you find something of additional help, that sounds very tough. Your weight loss is immense- incredibly well done.