Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

@Gilead

That’s fabulous *@RainbowZebraWarrior*! Where are you, dd has EDS to a far greater extent than I do.

I'm Whitley Bay. The body suit is made I from a top and bottom and is reinforced at joints. Elsewhere, it's sort of like lycra. And there are zips. Obviously reason why so many measurements is so they can custom make suit to size and have reinforcement panels exactly where the patient needs it. I've not hear it mentioned by anyone else on my EDS support groups. Also it's been slow as had to go Rheumatology>OT Rheumy>Podiatry>Orthotics

But does show that there's now stuff out there and funding being given. I'll attach some screen shots. The lady who has had hers made as part of the trial is buying a second one for herself. They are a few hundred pounds I think.

For ref / info in case of use to anyone.

This actual suit is specifically for people who have EDS. In the past, they have been made for Cerebral palsy patients and others.

They look really good and comfy, fingers crossed helps for you. @Twolostsoulsswimminginafishbow have you name changed? Just tying place you or are you new?

@RainbowZebraWarrior

This actual suit is specifically for people who have EDS. In the past, they have been made for Cerebral palsy patients and others.

I never heard of this! I hope it helps, can't wait until you get it. It is funny, a few days ago I also finally lost a left lower abdominal pain radiating to hip and back enough to realize it is from my hip. I ordered a sacriolic belt last night, it is supposed to arrive today. Hoping it will help. Standing up takes a minute.

@RainbowZebraWarrior you are in a trust next to me. My last bone scan was in Whitley Bay! I shall make enquiries.

@Gilead hope it's helped. NT General Hospital seem to be finally joining the dots. But it's still hit and miss regarding EDS. Some of the Rheumys are better than others. But the OTs and Orthotics people are amazing. If nothing else, you can make enquiries and show them my screenshots. Not sure if it shows is pics, but the company they are using for the Hy Mo Bodysuits is Allards.

Hope you're ok this evening x

@Hydrate I'd been toying with so many things including SI belt, but was told to hang on for my suit. That was only because I knew I was referred for funding though. And even then, it took 7 months. I've heard good things about the belts.

@Twolostsoulsswimminginafishbow

I always feel that despite chronic pain and being unable to exercise I’m often the odd one out because I struggle so much with my weight the other way. Everything I eat is high calorie but I still circle the 90lb mark. I take oral morphine for pain but don’t want anything stronger because I drive occasionally and I know they’d take my driving licence.

I totally get what you're saying about not wanting any higher strength meds in case they take your driving licence away. It's such a difficult balance.

As @Akire said, by the way, are you a name changed regular or a newbie? Either way, welcome or hello!

It arrived a couple of hours ago, and it does make walking easier, so far.

Waiting for an Ambulance!

@Gilead I hope ambulance has arrived by now

@Gilead gentle hugs. Bless you.

@Gilead

Waiting for an Ambulance!

I hope this means you are going to get some answers and relief xx

That EDS suit looks great. I've been toying with the idea of making myself a corset. I used to have a custom made one years and years ago, prior to my body properly going wrong, and remember finding it helped with mild back pain. Obviously not ideal for long term use, but might help with this bloody tension headache

@Gilead hope you get answers at last. Thinking of you

Some positive things happening at physio this week. They've gave me some simple exorcises to do and they're going to look into getting a crutch. Still got a long way to go, but I'm hopefully getting there 🤞🏻🙂❤️

I've ordered a wireless TENS machine from Boots. Never tried it before so hope it works well for me! 🤞🏻🙂

@ICrunchCrispsNotNumbers
My tens machine is fab. It doesnt take away the pain but it does take the edge off while it's on.

[quote HerRoyalHappiness]@ICrunchCrispsNotNumbers
My tens machine is fab. It doesnt take away the pain but it does take the edge off while it's on.[/quote]
@HerRoyalHappiness that's good to know, thank you 😊❤️

Hip is inflamed and disintegrating, apparently impinging on nerves, also possible blood clot.
Despite a cocktail of morphine (20mg) Paracetamol and Naproxen, I still cannot mobilise! I’m being kept in.

@Gilead

Hip is inflamed and disintegrating, apparently impinging on nerves, also possible blood clot. Despite a cocktail of morphine (20mg) Paracetamol and Naproxen, I still cannot mobilise! I’m being kept in.

@Gilead sending you lots of love and hope you have a restful evening ❤️

@Gilead You poor thing, but at least you know what is happening now, and hopefully they have you feeling better quickly.

Just heard them doing handover. Apparently they are asking for a report on my x Ray because the consultant thought there may be a fracture. Nobody has told me this.

@Gilead ouch
I hate when medical professionals keep stuff from us. Just tell me then I know what I'm dealing with!

@Gilead

Just heard them doing handover. Apparently they are asking for a report on my x Ray because the consultant thought there may be a fracture. Nobody has told me this.

That's so frustrating. I don't understand why they wouldn't tell you.

I tested positive for covid this morning, so this is proving to be a particularly shitty year health wise.