To use a walking stick despite XHs opinion?

[Brittapieandchips]

I have some kind of pelvis issue - started as SPD when I was pregnant with 4yo DD2 and still comes back - I have low levels of pain every day, but at certain points (particularly around my period) it gets really bad. The last physio I had was shocked that I manage to dance as a hobby (only when it's not bad - it hurts but it's manageable and worth it) and was annoyed on my behalf that it has gone on so long with a gap of years between the immediately post natal physio and the help I've had this year. She could feel all the jams and uneven bits and so on, did some stuff that relieved it but it keeps just doing it again in different areas - the pain could come anywhere in my pelvis, back or even knees.

One of the reasons I didn't push for help was that XH kept telling me that I was making a fuss over nothing and that everybody over 25 is constantly in pain. I pretty much limped all the time for the first two years but still worked for a while doing heavy lifting, did most of the child care etc. I have a disability bus pass for an unrelated issue and he mocked me and called me lazy for using it.

Sometimes I would be walking along holding on to fence posts for support - I could tell you now the route with the best sturdy walls and fences from the bus shop to my house at the time. I could feel my pelvis grinding.

I mentioned when dd was 3 that I was hardly limping any more, and he said 'oh, was that real? I thought you were just making a fuss!'

It doesn't look like it is going away any time soon, and I've just had a particularly bad flare up. So I finally got a walking stick and it really helped. It's caused me a lot of emotional turmoil - feels like I'm giving up at 29 to being an old lady - but it has also been brilliant to be able to manage better. I've also finally got some decent painkillers.

Anyway, XH has managed to upset me with one word. I went round to drop some stuff off for the kids and he looked me up and down, looked at the stick and said '...seriously?' in a mocking tone, as if I was doing something really stupid and weird.

Just topped it off. I'm in pain, I'm facing up to it never getting better and worried people will be weird about the stick and he's still getting to me.

Really angry, and sad, and humiliated.

And sometimes he goes looking for me online, so if he is reading this... You got what you wanted, you upset me again. Well done.

Omg, that EDS does sound likely actually... It was not having stretchy skin that made me think I don't have it, but loads of the rest fits.

What do I do about it? GP?

It can have urinary problems associated with it, too, and is hereditary. Me and both sisters, and dd1 all took ages to toilet train. Dd1 is seeing a specialist about it in a couple of weeks as she is 7 and still wets herself in the day regularly.

My sister has awful circulation and a heart murmur, but we all play brass instruments so that's a point against it.

GP first & a good knowledgeable Rheumatologist - but you must make sure they are good & know the condition well, many don't

Stretchy skin isn't often a symptom with the Hypermobile type of EDS - there's several different types & symptoms vary - your bipolar for example could actually be autonomic nervous system dysfunction - my DD gets this type of ANS anxiety if stressed or run down & it's like a personality transplant - but it's not actually true bipolar - my mum had this too

Have a look at POTsUK site too - POTs is a listed symptom of EDSH (even on the NHS site) HMSA website is good for advice too,though I found their forum a bit too OTT with the moderation & gave up

your post sounds just like my friend who after years of no answers & stick from disbelievers, including doctors, has been just been formally diagnosed this week

If you are south/southeast I can link you to a good Facebook group that can help with info on doctors etc - - still a good place for info & advice even if you are not local

Spoke to my mum and she says she doesn't think it is because there's not enough of note in the family.

My bipolar is fairly textbook rapid cycling bipolar one though - responds to mood stabilisers, has psychosis, self harm, suicidal thoughts and attempts, hyper sexuality, lack of inhibitions, paranoia, etc etc. although I do also have anxieties and phobias, as well as sensory and memory issues associated with dyspraxia.

I'm a bit of a mess, lol

I need to make a GP appointment for some diazepam to get through my medical stuff coming up and I'll ask if all my symptoms could be linked. I'm just sick of being ill!

I still wouldn't rule it out without looking into it medically

As a family, we had never heard of it, it's under diagnosed & none of us are contortionist, so the slightly extra bendiness was just our normal & we had no clue it differed to what actually is normal

DD was diagnosed first - then turned out that it was mentioned years back with my DM, but she & her doctors didn't realise the significance if it - she was later diagnosed with MS which is also linked, so for her, everything was just pinned on that - but with hindsight we can see it goes back generations & manifests in all sorts of ways - it's only when learning about it for DDs sake that we started to see the bigger picture, so if you feel it fits, I would still follow it up medically as getting a diagnosis can help you get the right treatment

Good luck

Cross posts with your last 2 replies

Your Bipolar does sound more classic & not like I read about or see in DD or my DM, though some if it relates to how DM was -

but I did have a good friend who would also fit with exactly what you write as regards your BPD - he initially was diagnosed with Fibromyalgia, as I was & how we met - his BPD was was separate diagnosis - he went in to be diagnosed with MS & then they discovered he to actually had EDS & it was the cause if it all - not sure which EDS he had though & sadly I can't ask, as we lost him 2 years ago

I read your OP and skipped straight to the end to ask if you'd been investigated for Ehler-Danlos syndrome. You sound exactly like my friend who was finally diagnosed last month after years of pain.

And your ex is an utterly despicable little arse of a man if thats the way he treats you.

Wow, if it was all the same thing that would be loads easier to get my head round. As it is I just feel like I'm making a fuss over nothing...

Well I just checked my messages and there was one from my GP me to make an appointment today so I'm going in at 4:15. I think this is connected to the mental health appointment I had yesterday where the doctor cancelled and I told my care coordinator I need something for anxiety ASAP.

So should I mention it? He'll probably just fob me off. How should I put it?

Sorry I didnt realise your physios pulled and hauled at you that sounds like what a oestopath etc would do anyway.

Don't dismiss any type of auto immune disease as RocinHippy says. I have Lupus, I have obviously had it for years but Im only recently diagnosed.
Over the years I've had gynae issues, continence problems, SPD with both pregnancies, joint pain, lung pain, rashes, thyroid problems etc.

There are a lot of different auto immune diseases.

If it were me, with the experience I've had, I would fib a bit -

I was struggling to get DDs health problems taken seriously, but now knew what linked all her issues together & I didn't know my DM actually was diagnosed as it wasn't taken that seriously back when she was first diagnosed -

So I fibbed & told our GP that I had just found out that my DM was diagnosed with EDSH & this led to the referral that had DD diagnosed immediately with 7/9 affected joints & others not listed in the criteria

Maybe tell them you've just found out that other close relatives, or if possible your DM have a diagnosis if EDS & reading about it makes you realise it could actually be an answer for you too

Also ask the GP about POTs - Postural Orthostatic Tachycardia Syndrome - this is a condition in it's own right, but also a symptom of EDS & your GP can often organise an in surgery check for it where they check the change in your pulse /heart rate, from lying down to standing - some symptoms sort of mimic anxiety

Good luck - I hope your appointment goes well

How can touching your nose with your tongue be a sign, can't loads of people do that? I can put my tongue in my nose, it's my party trick :-D

(Sorry, reading the website)

I'm not hyper mobile though, my joints are stiff.

LOL!!!

It's amazing what we just think is normal or no real big deal

I used to think that people asked for help putting sun tan lotion on thier backs because they were lazy, attention seeking or getting fruity I had no idea that most people physically can't just can't do it for themselves

I only started to question how normal we were, when a friends DD was showing off the new gymnastics move she had trained & trained to be able to do & finally got there - my own DD copied her, having never tried before

Brit?my joints are very stiff now - I can still reach the middle of my shoulder blades, but that's it these days - but I was as Hypermobile as DD - I just didn't know it wasn't normal until this last few years

My friend with EDS has the same party trick!! And no, most people can't - believe me, we all tried as students when she showed us that she could do it and none of us could even get close.

Everyone can reach the middle of their shoulder blades though, surely? Or else how do they get dressed?

Could it cause a lisp?

How about extreme morning sickness (peeing blood in hospital levels of morning sickness)?

Could it be connected to DD1s birth (she got stuck, un diagnosed breech, slightly prem at 36 weeks, crash section, T incision on my womb but normal outside that still hurts - although it was opened up again for DD2 - I needed 3 units of blood transfusion)

How about a bad memory?

My circulation isn't ideal, I'm always cold and I get pins and needles really easily.

I can't do much with my left hand (many hours of fun with friends trying to teach me to jazz hands with my left hand - comes up surprisingly often in my life)...

How about sensory issues? (I'm really weird about some things, like touching cold things or metal, or having my hair done, or water splashing me, or anything touching my knees)

Really, really struggle taking pills or having injections

I can escape cuffs/wrist restraints really easily (don't ask, lol)

I constantly get rashes and irritations, and I'm spotty like a teenager

Really hairy

Heavy and painful periods

(Sorry, just thinking of random weird things about me, lol)

Sorry I'm up to my eyes sorting out some other important stuff as regards a HS place fight for my DD

but in short, to 95% of those - YES - they are linked

skin problems could be allergy related - DD just diagnosed with soy & diary & looks likely for me too - googling EDS & Allergies makes interesting reaading

Sensory issues - look into the ANS stuff - but yes - defintely

we arent meant to give birth naturally, too risk - so yes - my health nose dived after having DD & hormones play a big part in making EDS worse DD getting worse due to puberty

period problems - yes

only one that doesnt link I think is hairy

& yes, big time with pills, injection & a lot of medications in general

Fuck, just read that swallowing difficulties is a thing too.

Isn't the main diagnosis being bendy, though? The physio was alarmed at my small range of movement.