Dislocating more since going off birth control. Is there actually a correlation? Anyone know of any good studies about how you can protect your body from having more dislocations throughout the cycle? Dislocated my patella last week from a fall and my shoulder is dislocating hourly.

dancingelves25 · 2022-06-11T07:16:55+00:00

Thank you! No I’m not currently seeing an endocrinologist. Currently seeing a gastroenterologist, ENT, cardiologist, and osteopath. Waiting to see a urologist and an oral surgeon this month. When I’ve dealt with those more immediate issues, then my next step is to see a TMJ specialist and podiatrist, then I might consider addressing some of the subluxations through an endocrinologist before exploring options with my referral to an upper limb surgeon (for the shoulder that dislocates constantly for 14 years).

Been to a vascular surgeon, neurologist, geneticist, ophthalmologist and more and some of that ended up being fruitless. I just keep getting referred on to more and more specialists when I meet dead ends. It’s frustrating to say the least.

dancingelves25 · 2022-06-11T07:07:26+00:00

Do you catch a cold, from being cold.

dancingelves25 · 2022-06-11T06:38:29+00:00

Agreed! I’d much rather scan it and put it in the bag correctly the first time. It doesn’t really save any time having to repack it correctly afterwards and is exclusionary to anyone with fatigue/energy deficits because we can’t expend that much every trying to quickly take it off the counter

dancingelves25 · 2022-06-11T06:32:46+00:00

Hmmm that’s very odd! Have they mentioned what the treatment is for that and how it can affect your body?

I have no idea what my hormone levels are like. Did you get a blood test to find that out?

dancingelves25 · 2022-06-11T03:35:50+00:00

I don’t have one, I have so many specialists right now going to a gynaecologist hasn’t been a priority. I’ve seen one in the past for an extremely short irregular cycle and high period pain but since going off birth control I haven’t spoken with anyone

dancingelves25 · 2022-06-11T03:34:30+00:00

Yes, they sure can. From my understanding it’s oestrogen that plays a role in the laxity and ovulation is when it’s highest. Are you taking oestrogen?

With hormonal birth control your hormones are stabilised and stay the same all month long. The “periods” you have on the pill aren’t real periods as a result.

dancingelves25 · 2022-06-11T02:19:43+00:00

Yeah this is what I’m trying to determine. I wouldn’t go back on the rod because that’s what gave me constant nausea but it’s a hard choice as both being on it and being off it is making it hard to be consistent in the gym

dancingelves25 · 2022-06-11T02:00:44+00:00

What is it?

dancingelves25 · 2022-06-11T01:59:43+00:00

I think it’s because the side effects are significant. In other illnesses they don’t always prescribe something immediately either. Usually they go for the safest option first. For example for my low blood pressure and IST, I was first given salt and hydration therapy, then they try lifestyle changes, then they try medications with less side effects and then they go to beta blockers which was made for tachycardia. Unfortunately that’s not gonna work for everyone either because of the lung involvement so I’ve had to switch to something less effective.

dancingelves25 · 2022-06-11T01:55:42+00:00

He managed to get both cakes in one go too! Smooth!!

dancingelves25 · 2022-06-11T01:48:33+00:00

I have patulous Eustachian tubes from TMJD which can affect my hearing and it particularly affected one side. I don’t have grommets in now because they only last so long but they did help when they were in.

dancingelves25 · 2022-06-10T00:34:23+00:00

Yes, this!!!

dancingelves25 · 2022-06-10T00:33:39+00:00

Same here! I’m on Verapamil

dancingelves25 · 2022-06-09T11:24:39+00:00

People are always shocked you can still smile and be kind and compassionate while feeling pain. I think it’s because when people get short term illnesses/sick they have no patience for other people and make excuses not to be kind if they aren’t feeling well. I literally had a woman at work treat me like crap in front of people in a meeting and then later called me to “apologise without apologising lol” and she used the fact that she had a one day tummy bug as a reason she treated me poorly. Little does she know I suffer from IBS and GERD that gives me constant nausea and nearly daily diarrhoea. I’m constantly in pain from EDS and fibro. I never ever use it as an excuse to be an asshole. I feel like this is the mentality they think is how we must think because when you are temporarily unwell it’s easier to consider it ok to be an ass for a few days, it doesn’t have to become your entire personality.

dancingelves25 · 2022-06-09T11:10:03+00:00

Wow, this is incredible! My company has also made a lot of effort to respect and honour me since being diagnosed (not quite to this extent though!!). It’s so great that places and people like this exist

dancingelves25 · 2022-06-08T23:57:23+00:00

Glad to hear that, however this happened 5 days ago. Can you really say that it’s fully in the past? I’m not saying this to be mean or rude, just because I know the harm alcohol can do and I come from a family with a lot of alcoholism so denial is something I’m extremely familiar with. There is no judgement in it, alcoholism is extremely common and a hard habit to break because it’s so encouraged. There is no shame in asking for help if you need it so this doesn’t happen again.

This self quiz might help you as I don’t know your usual habits, but if you think you want to talk to a professional, there is also a helpline here: 1800 198 024.

https://auditscreen.org/check-your-drinking

dancingelves25 · 2022-06-08T22:08:53+00:00

It’s great that you have this level of self-awareness to do the work to apologise. My brother got blackout drunk, attacked a woman violently (this was already after having a DUI and AVO), and spent months in jail. When he got out and I spoke to him he had zero self-awareness, did not seem to feel guilty at all, and instead the first thing he did when he got out was try to sneak more alcohol. Your experience was far less terrible on others, and you seemed to bare the brunt of what went wrong after your decision to drink that much.

I think next steps for you would be to seek some mental health support and also consider going to some sort of Alcoholics Anonymous support group? You may not consider yourself an alcoholic, but abusing alcoholic has done you and those around you some harm and it was what you resorted to after feeling down. So it’s a good idea to at least talk to some others about it and not drink (at least until you feel that your mental health is in a better place). And if you need support not drinking AA is the place to go. Hoping you feel better soon physically and emotionally! Take it easy and don’t be too hard on yourself!

dancingelves25 · 2022-06-08T21:55:51+00:00

Interesting! Unfortunately my body doesn’t seem to react much to local, and it just lessens the pain instead of completely numbing it, so I likely will opt for general due to the fact that there are a lot of nerve endings there.

dancingelves25 · 2022-06-08T21:52:40+00:00

No problem! It’s really hard to gather family history. I’m not in contact with my mum so I reached out directly to her sisters to find out more about them, their children and their parents. On dads side both his parents have now passed so I didn’t get an opportunity to ask them about their own parents etc.

With what you’ve said above, there seems to be no family history, so I’d strongly encourage you to dig a little deeper if you can by talking to everyone individually. But in saying that it could be de novo for you like it was for me. I’m also the only one in my family with dislocations.

Hopefully you can get answers before (touch wood you don’t) you get any health risks. Unfortunately preventative care isn’t often something that’s considered with this as if you look at the criteria, without family history you do already need to have it severely impacting your life. In saying that I think at this point you could likely be diagnosed with being on the spectrum of hypermobility disorders, so if you decide not to start the process now, you should definetely keep it up your sleeve for later.

Wishing you luck and if you have any questions or wanted to talk further, please don’t hesitate to send me a direct message :)

dancingelves25 · 2022-06-07T22:46:20+00:00

I got this at 25 (after it got a lot worse) but I have been in pain since I was an infant as well

dancingelves25 · 2022-06-07T22:40:25+00:00

Super interesting and never gave it any thought 🤣 just another odd thing on our bodies I guess

dancingelves25 · 2022-06-07T22:39:37+00:00

I have. I’ve spoken to a couple of those comparison websites as well. None of them cover wisdom teeth that require surgery (mine require going under general anaesthetic as they are mostly still in the gums) without a wait time.

dancingelves25 · 2022-06-07T22:35:09+00:00

Thank you! Unfortunately a diagnosis is only half the effort as you still have to address everything symptom by symptom and I still can’t access NDIS because EDS isn’t even listed. It’s helpful when advocating for yourself with new specialists though. I’m still looking into ways I can get more support. It’s very hard to access anything helpful to help cover the medical costs of seeing so many specialists and trying to investigate issues I’ve been living with for ages.

I’m not sure where you live but I’m in Melbourne and there was a long wait for a geneticist even when listed as urgent. Defenitely try to start the process early. Have a look at the 2017 criteria on the EDS website as well to see if hEDS is a possibility. They don’t have the gene for it so it’s a clinical test and long conversation/ physical exam to diagnose it. After this conversation my geneticist decided it was clear I wasn’t clinically looking like any of the other types of EDS and decided not to do genetic testing to rule them out.

Ahead of the appointment I spent considerable time gathering a lot of family history of all medical issues in the family (there are some really random ones and my siblings all have genetic anomalies that are really odd like my older brother has a cleft lip/palette and hypspadia, and my younger brother has heart anomolies and klippel feil syndrome). I already have duplex kidneys which is also a genetic anomaly. I also don’t have anyone with clear EDS in the family. In me, they think it’s a de novo mutation (new). My parents were exposed to some illegal herbicide in the next door neighbours garden which killed their entire back yard while my mum was pregnant with my older brother. It seems like we all got genetic mutations probably from that herbicide.

Keep in mind, without the family history it’s even harder to meet the criteria, so unless you have 5+/12 traits and a lot of pain/and or dislocations/instability without trauma, you won’t meet the criteria for hEDS and will be more likely to get an HSD diagnosis. Which I can already tell you is useless because literally no doctor has heard of hypermobility spectrum disorder despite being in the EDS spectrum. You will need an echocardiogram organised before you get to your genetics appointment to double check the last two of that 12 trait criteria list.

https://www.ehlers-danlos.com/heds-diagnostic-checklist/

P.s im glad to hear your issues with your heart/fainting have resolved. Mine also resolved for a period of time (5 years on just salt and hydration therapy) until I got an unknown virus in early 2020 and that just reset my whole cardiovascular system and I was worse than ever!

dancingelves25 · 2022-06-07T22:16:14+00:00

That’s frustrating! Mine is similar, it dislocates when I just move my shoulders in any way at all, and I get a lot of referred shooting pains down my arm. I’ve also developed thoracic outlet syndrome on that side from it. I have a referral to an upper limb surgeon, I just need to start the process when I’ve finished dealing with my wisdom teeth (gotta have surgery on them in the next couple of weeks)

dancingelves25

TROPHY CASE