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.

Is there another GP you can see at the practice instead? This one sounds rather unsympathetic at best.

SPD is rubbish, mine never completely resolved either although the after effects are nowhere near as bad as yours sound.

Do you have an expectation of what you think your GP should be doing for you? They’ve suggested Physio, which sounds like a good idea as your body has changed so much from losing weight (well done on that by the way!)

I know from bitter experience (not just for that health condition) that it’s easy to have the expectation that there’s a magic cure being withheld from you when there simply isn’t. I feel lucky that my GP is good at managing my expectations of my health conditions and will be up front in a nice way if it’s simply not going to go away - I find it a lot easier to deal with it all knowing that, and my expectations change to finding a way to manage it.

Have you or your GP considered the impact all this might be having on your mental health? From your post you sound quite down and worn out. It might be that that’s the place you need help.

Wishing you the best.

No this the head GP of the practice.

I dont know what 'the answer' is.
But yes ive had recent physio.
I'm doing all the right things with diet and excercise.
But i cant believe the best is: 'sit down more (how does that help improve my mobility) and that i might never be well enough to work again?
It is beyond frustrating and i am sure it impinges on my mental health.

The Dr isn't crap - they gave sound advice for someone with a joint instability - it's just not what you wanted to hear.

Refer to physio. They're the best people to help you they can access all kinds of help like acupuncture, hydrotherapy, pain clinics, orthopaedic specialists etc when you have your booking in appointment be frank about what you've tried and what your goals are and work with them.

Chances are you'll be given Pilates style exercises which are fantastic for pelvic pain and told to increase your pain relief regime whilst undergoing treatment. Its important you take your medication like clockwork or it won't be effective.

Oh and go back and ask for stronger medication. Naproxen is better than ibuprofen

Perhaps the GP isnt crap just the situation ive been stuck in for 14 yrs.

I have seen physio at the local cottage hospital. there is an 12m waiting list and ive been seen twice in last 5 yreas. There iS no hydro, acupuncture etc. I am rural Scotland and it doesnt exist up here (poss privately?)

I have been under Otho for 8 years. Had a lot of surgery on my feet / lower legs. Nowt more they can do.

I do take my meds religiously.

I know that gp is the head one but can you not just start making appointments with a diff one?

The advice to sit down surely isn't right. How is that practical?

What causes you to faint? Just made me think of eds/pots when you said the ligament issues and fainting. Might be barking up wrong tree but it's highly underdoagnoses.

Has any consideration been given to whether you suffer from Joint Hypermobility Syndrome or Ehlers Danlos? Having such symptoms for so long after birth rings bells for both of those. I am wondering if, in the event that you had one of them, and you were diagnosed, it might open up access to specialists and other treatment?

Cross post with flowery

You've explained it much better than me

But you specifically mentioned POTS, which I didn't...

There are only 2 GP's in practice. This is the 'better' one, lol.
Next practice a big drive away.
So i could move im just wondering if 'worth it; iyswim?

Re hypermobility - im not esp bendy/ joints dont pop out etc but it FEELS as tho my hipsockets are going to pop ALL the time.

Eldest child is hypermobile tho.

I was just after practical suggestions for what i could do to make life more bearable / less limited. GP was being practical witih the 'sit down' thing i guess but I'm 50 not 70. Seems v depressing

Are there tests they can do for ED or POTS pls?

I am a bit hypermobile which explained why my SPD stayed after birth, this wasn’t established until my baby was nearly 2 though and only because one particular physio took the time to do a full assessment. The test is basically assessing how bendy you are on 9 different joints.

I asked my GP recently if there might be anything more to it than simply being hypermobile (I.e. underlying medical condition). He referred to the results for some blood tests I’d had done a couple for months ago and said no, because certain markers were well within the normal range. Off the top of my head he’d tested liver function/bone profile, kidneys etc, thyroid function, full blood screen, Rhumatoid factor and serum protein electrophoresis (this is not a standard one at all).

It might be worth asking your GP to do some blood tests, but i think it would be a physio who would be best placed to assess your hypermobility, and to help you manage it aswell.

Can you go private for physio for a few sessions? That way you can pick who you see and find someone with appropriate expertise.

Mine improved with weight loss, lots of pilates to build core strength and weights to build muscle to support area.

Thanks you isleep this is very informative. Yes i think i'll need a private physio as the NHS one was pretty hopeless.

AlltheWaves my bmi is still too high at 32 so perhaps further weight loss will help. Though i'd hoped to feel some relief after it already dropped 13 points. I think my core strength is non existant tbh.
My stomach muscles are still quite badly separated so i still look pg plus i have a large apron from csecs and weight loss (dont i sound attractive?!) and i stand quite badly despite drying not to. I have a big dent in the bottom of my spine yet have protruding discs in the same area. I do need a good physio, dont i?

You need to see an NHS physio and be prepared to be referred to a larger hospital for intensive treatment with all that going on. Residential/inpatient rehab may be worth looking into

OP - I am recovering from SPD following my second pregnancy (had it in both).

I also am very overweight but am reducing it currently (BMI down from 50 to 43).

My physio said the biggest issue for me is that my core is ridiculously unstable as I’m so unfit.

I’d suggest trying regularly pelvic floor exercises and exercises to strengthen your transverse abdominus muscles - these are the most important fur pelvic stability.

I’m sorry your doctor hasn’t been helpful. But use YouTube for exercise help - there are loads plus apps etc remind you to do the pelvic floor ones.

I’m led to believe this is something that will take a while but you will see improvement if you start getting those muscles fit.

It’s very hard to explain to someone how awful it is if they’ve not experienced it - I can’t turn over in bed sometimes and if I sleep in the wrong position I get stuck in bed and need help getting up. Urgh.

Good luck.

Sorry to read that your GP isn't being very helpful. Its may not sound the same, but i found something similar when I was recovering from a broken foot. My GP could provide anti inflammatory pills, what i needed was safe movement, with some help to know what was safe, which was entirely outside where they could help.

The most helpful resource i found was https://nutritiousmovement.com/about/ Katy Bowman

There is a lot of material here, so you still need to sift through it all and find the 'beginner' work that is suitable for you. I hope you find something useful to get you moving safely. All the best.

From what you describe I'm afraid options for you are probably a bit limited to be honest, especially in rural Scotland... I'm a GP In the South East and there's a couple of specialist rehab programmes available in London for people with problems like yours but they're hard to access even from here.
I'd imagine if you've been under ortho they would have considered hypermobility etc. Isn't hope so anyway...
POTS might be worth looking into. Locally to me they would arrange a tilt table test - usually under the care of cardiology. Not sure if it would be available near you but at one of the bigger Scottish hospitals probably.

Had a look at POTS. All i know is my bp is usually quite low (was through both pgs too). Ive always been prone to fainting but its been much worse recently which is maybe why the GP suggested sitting down etc.

Merry your post rings lots of bells. I see just kicking off 5st doesnt improve my core muscles but i would have thought i'd have had some improvement in my joint pain but to have none at all is really disheartening.

Finally thank you! I will go look at that.

Cantchoose no one has ever discussed hypermobility with me. My Ortho guy said i had trapped sciatic nerves and did surgery (Peroneal nerve entrapment) on my lower legs and feet.

Just looked up hEDS tho and a few of those symptoms are correct
joint hypermobility
joint pain and clicking joints
extreme tiredness (fatigue)
skin that bruises easily / loose skin (tho this could be weight loss)
digestive problems, such as heartburn and constipation
dizziness (always had BP checked sitting or lying down so dont know if it increases when i stand up?)

(tho not all)

Now you have an idea of what you want from your GP (E.g. some blood tests etc) or wanting to know if there’s a possibility of HEDS I’d go back to your GP armed with that and see where you get.

My GP has always asked me if I have an idea what I think it might be, and that’s a good starting point for a discussion about it.

I’d imagine you’ll think you’ve mentioned to your GP all those symptoms, and why haven’t they come up with what you have? But maybe you mentioned them all over a series of appointments..... write a list and go and discuss with them. In the nicest way, don’t be fobbed off and if they won’t do tests, ask why and politely insist if necessary. If they don’t know the answer, ask for a referral to someone who will (based on my own experience, I’m thinking rheumatology...)

When I got a private physio, I went to see one who specialised in pregnancy related issues. I also used to go to a Pilates class she ran which was great.

Also re hypermobility - I am quite obviously hypermobile in my back, and many, many medical professionals have observed it over many years and no one said anything until the most recent physio.

PIP is rubbish my disabled daughter had her car taken away and money reduced. She can barely stand FFS .

Can I ask you something? Did you find your spd got worse around the time of your period?

Do you think hormones make the symptoms worse?

Sorry for the crazy question but I’m wondering about this myself!

As regards the gp, really I don’t think any gp will be an expert so you will have to ask to be referred to someone who is an expert and hopefully they might help you more.

I’m so sorry you are suffering and well done on the weight loss!!!