New Year , and I've Come Down With Strep. Here's Some Info if You Suspect It and Need to Get Tested Safely

[Blearyeyed]

So a New Year begins , but rather than hitting the ground running I've hit it with a thud. We had guests for the first Christmas since COVID and one of them had a nasty cough. My OH came down with symptoms a week ago and then I got the tell tale signs a few days ago.

So , we contacted the GP surgery today to request a rapid test , as you can get a PCR for Strep.

They did not have the tests , but what we did discover, which will also be helpful for you forum folks , is that you can arrange an appointment at a local chemist that keeps in a stock of test kits , and if you are positive they can give you a course of antibiotics without the need to go back to the GP surgery.

Handy information, as most of us are understandably resistant about going to the surgery or A and E because of the long waits and chance of catching something else.

So , tests done , we are both positive. The antibiotics are only likely to reduce the time with Strep by a few days , but they are important to take to reduce the possibility of developing complications leading to Scarlet Fever, Rheumatic Fever, Reactive Arthritis and Kidney Dysfunction. And , of course , a flare in your PMR.

So what is the difference between Strep and Flu or a Cold.

The symptoms are:

A rapid onset of pain and swelling in the throat.

Very enlarged , tender lymph nodes in the neck , larger than experienced with a Flu , honestly , I wondered if I could have mumps!

A red rash on the upper palate or red inflamed tonsils , with or without white spots , similar to Tonsillitis .

You may get a cough but that is because of irritation in the swollen throat , and it doesn't produce phlegm, unless you are really unlucky and also have another infection.

All over body pain , especially in the joints , which may feel swollen and hot , this is called Arthralgia and may feel like PMR but it will improve to some extent with paracetamol.

Intermittent fever , waves of chills or sweating , but not necessarily a constant high temperature.

Lower Abdominal Pain and loss of appetite but no diarrhea.

Nausea without vomiting.

Extreme Fatigue. I've thankfully slept about 20 hours a day in the last two days , astounding for an insomniac whom usually only manages three hours a day.

Strep , like COVID , can be caught from droplets in the air or on surfaces that you may touch and then transfer to your mouth or nose.

You can be contagious with Strep for upto three weeks with few symptoms at all.

Of course , it has caused a flare in all of my other health issues. Fibro pain is off the scale . My Ehlers Danlos Syndrome gives me the added nasty bonus of subluxation of the ribs with the odd one needing man handling to pop in place again. My Dysautonomia is in overdrive with tachycardia, dizziness and no temperature control. I'm just thankful that the GCA is in the past and not there to flare up too!

What a lovely start to 2023!

But at least I might have been able to help some of you find a safer way to get a diagnosis from your local pharmacy for Strep , COVID or the Flu rather than running the gauntlet at the Emergency Room or being left for days waiting to hear from a GP.

Take care All , and remember, it's not all about COVID , all of my guests tested Negative over Christmas yet a baddie still got in. According to the nice little graph my pharmacist enjoyed showing me Strep cases are double what they were before Covid , and Flu is up 80% . So , if your family and friends have symptoms of a cold or flu , go back to wearing a mask and social distancing , or put off the visit until another time , no matter how much you miss them.

As an antidote, I included a photo above of sunrise on my favourite local beach taken on January 1st 2022 as there was no opportunity to get there this year.

[Louisepenygraig]

Thank you for that information. We all had Covid here too over Christmas. My youngest (12) still has an ongoing nasty cough

[Blearyeyed in reply to Louisepenygraig]

Oh no , how are you now?Did you have tests in or need to go to our crippled Emergency room at Bangor?

Take care x

[Louisepenygraig in reply to Blearyeyed]

we were all ok thank you, Alex, the youngest, was the hardest hit with a high temperature and cough. My temperature was up too but I didn't feel too bad considering and I didn't develop a cough. We think my son in law had it first, he had what he thought was a bad cold which was improving enough by Christmas day for him to cook the dinner as usual. It wasn't until Boxing Day when Alex had a high temperature and my daughter felt ill too that we tested and Alex and Anna were positive, I was still negative then but was positive the following day.

[Blearyeyed in reply to Louisepenygraig]

Thank goodness you didn't have a very bad case , I hope Alex feels better soon , although they must be really annoyed to be ill all holiday just to get well in time to go back to school. At least that's how my OH feels about it!

[PMRpro Ambassador]

Get well soon!!! Maybe you need to stop breathing when you have visitors???

[Blearyeyed in reply to PMRpro]

Or maybe the guests need to stop breathing instead!😆😆😆😆

That will teach me to accommodate my daughter's fiancee , or two teachers in one spot, if you include the OH with all the horrible things they come into contact with at school.

And yes , by horrible things I mean teenagers , not just germs!😆😆😆

[Blearyeyed in reply to PMRpro]

Something else you might find interesting is that A and E treatments and hospitalisations for Flu were two and a half times higher than that of COVID in Wales and England.He put that down to people getting mixed up and thinking they would get their COVID and Flu jab at the same time , then not booking to go back for the Flu jab and a vaccine shortage.

And the fact that one of the Flu variants going around was not anticipated and included in this year's vaccine.

A good reminder to book our winter jabs early on and remain vigilant despite the vaccines.

[PMRpro Ambassador in reply to Blearyeyed]

I had my flu jab first and waited a couple of weeks for the Covid booster. Daughter No 2 has just done 2 NY weekend day shifts in the ED followed by a day on an ambo which started with the 3 of them (orientating a brand new paramedic) sitting on station waiting for a vehicle - all were broken. They then left one patient at home before taking the next to sit outside the ED in the queue. I said they should transfer all the broken ambos to outside the ED and transfer patients with the few that worked ...

[Blearyeyed in reply to PMRpro]

It is getting beyond belief , I think your daughter needs a medal to work in such a stressful environment. No wonder so many people are leaving or off sick with stress.

[PMRpro Ambassador in reply to Blearyeyed]

Think money would be preferable to a medal!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Totally agree …and to those that deserve it….

[PMRrunner in reply to PMRpro]

My daughter (infectious disease reg) was so despondent last week about the number of patients in hospital with flu who were eligible for the vaccine but hadn't had it.

[PMRpro Ambassador in reply to PMRrunner]

I can believe it. Like the people who turn up with a pain - but haven't tried a couple of paracetamol: "I don't believe in painkillers". But you turned up to the ED expecting something for that pain. Magic??????

[HeronNS in reply to Blearyeyed]

Interesting comment about the flu variant as we have been told constantly that this year's flu vaccine is a very good match. Are they lying to us again, in a effort to get people out for the vaccine?🤔

Hope you are starting to feel better. You really didn't need this did you? Hopefully the rest of 2023 will be much better. 🌺

[Blearyeyed in reply to HeronNS]

He did say it is a very good match as well , as they base the cocktail on the variants that hit the Southern Hemisphere in their previous winter , but they are looking into a possible new variant or mutation that may have happened in that critical spit between Sept and Nov.

[HeronNS in reply to Blearyeyed]

Oh, great. Sounds about right for the third decade of the 21st century doesn't it?

[Kendrew]

Thankyou for that information. Really useful to know.

[Blearyeyed in reply to Kendrew]

Yes , it is . They are fully trained in testing and it's quicker than going to the GP because most of them don't stock in the instant tests so you would have to wait for the swab to be sent off and results to arrive before your treatment.Our pharmacist also informed me that both him and his partner have also done triage training for minor injuries and skin problems which can also mean quicker treatment without A and E too.

[HeronNS]

Oh no. People here have been referring to a tripledemic, but I call it a multidemic. We tend to forget that strep seems to be out of control at the moment, along with covid, flu and RSV (which here is starting to affect more adults not just the littles). That makes four nasties. Think Mother Nature is trying to tell humans something?

I hope you are well on the road to full recovery. 🍀❤️

[Blearyeyed in reply to HeronNS]

Antibiotics have been popped so fingers crossed. I think the only upside is that I have been off my food so I won't have put on any weight over Xmas. The pharmacist has been quite shocked by the number of positive tests he has had for Strep in adults . Uncommon numbers . One day he tested 11 people and 7 were positive , more than 50% .

All virus figures are up since 2019 in the generally healthy population, but that isn't surprising by protecting themselves from one thing they have made their immune systems more sluggish to respond to anything.

I can understand that Mother Nature wants her revenge , I just wish she'd be a bit more selective about her victims , after all the years of doing environmental work and looking after wildlife I think she could have let me off!

Take care x

[HeronNS in reply to Blearyeyed]

I honestly think that this "immunity debt" is a pile of BS. Basically we are being told we are sick this year because we weren't sick last year. Apparently in Sweden, where children were unprotected in school last year, therefore exposed to all and sundry viruses, the kids are just as sick this year as are the kids in countries where there was masking and testing and contact tracing last year. The major benefit of protecting youngsters last year was the littlest ones didn't get RSV when they are most in danger from it, those littles are a year older now and less vulnerable to a bad outcome. Yes, there may be a double cohort of people getting sick, but thing is people also seem to be a lot sicker, which could be at least partially explained by the fact that a previous covid infection has damaged their immune system. Here the word covid seems to have vanished from the vocabulary. It's really disturbing to observe how humans are behaving in relation to covid now, except as in say "post-covid" supply chain issues. Excuse me? "POST" covid???? Sorry for the rant!

[Blearyeyed in reply to HeronNS]

I get your point. I had a frustrating discussion with my eldest about COVID as she had begun to think like it was somehow in the past. I pointed out the only reason it appears to be less important is because we don't get to hear the figures on the TV news anymore , unless they discuss it in passing while debating the pressures on the health service, then people get a sudden shock.Yes, less people are dying which is great but the numbers catching COVID are still high and precautions are still needed , especially in vulnerable groups.

I guess I agree more about the effect on immunity of not having as much contact with various antigens ,(not just diseases , but all types of antigens in the environment ) because of the sort of non scientific study I could see happening between my daughters and my cousin's girls , whom are virtually the same ages.

My cousin's girls lived in a hyper antibacterial world and then always seemed to catch anything going. My kids lived in a house with spiders , random dust and played a lot in fields and dirt , and despite having inherited my illnesses caught few things or got far milder cases of things.

I'm hoping my "wild" parenting helped to reduce or delay the onset of autoimmune issues that will eventually hit them in the future.

[KellyInTexas in reply to Blearyeyed]

because my autoimmune diseases hit early, I had to keep a fairy clean home. I had small children still at home.

We live on the lake- but it’s spring fed- a clean river feeds it. My children did grow up in the country on the lake swimming , skiing, canoeing, kayaking, etc.

Kitchen surfaces / sinks/ handles and floors however, were bleached daily, and bathrooms twice weekly. All towels are white and bleached with each laundering.

( we own hotels/ restaurants so this is standard practice / habits/ ingrained.)

Our daughter contracted a adenovirus at age 16 in a crowded city event and went to sepsis - was in guarded condition for days in hospital. She was under the care of a pediatric infectious disease specialist.

I asked her the theory- my friends tell me I clean too much- this is why my children are sick. ( it turns out they just also had autoimmune diseases starting up- daughter has PID primary immune deficient of Igg )

Son had ulcerative colitis onset age 7

She said nonsense- she said children get exposed to everything they need to just being out in the world at large- playing at school- outside- etc. the home should be cleaned and disinfected- the kitchen surfaces and bathrooms!

[Blearyeyed in reply to KellyInTexas]

I also cleaned my bathroom and kitchen well , my children like your children weren't unclean , but our children were in a balanced environment containing natural antigens on a daily basis which stimulated their immune system to work in as balanced a way as they could despite the possibility that they could develop an autoimmune condition at any time , a fact we had no idea about back then.My daughter's both have EDS and Fibro and like me showed signs and pain from birth , it's why I battled so hard to get my diagnosis so they didn't have to. The outdoor life may well have helped us all over the years to prevent as severe an autoimmune reaction and as many flares as we could have had . It has probably helped protect your children too . But we can only do as much as we can in terms of prevention ,, you can't change genetics or , unfortunately, pollutants and poor germ culture overnight , we saw that trying to convince people to be considerate and caring during COVID.

There's a big difference between artificial and natural antigens and there effects . There's a big difference from being clean like yourself and my cousin's version.

Her children changed clothes four times a day and had three showers . They played no outdoor games only indoor activities. She didn't just clean to a sensible hygienic standard , you could have performed open heart surgery on her garage floor. Her genetics is virtually the same as mine , what is different is, funnily, she chose to bring up her children the way I was brought up and clean as my mother did , I chose to be more like her mother.

It's a shame they hadn't started research on our families over the generations , it may have held the key to a few things.

[KellyInTexas in reply to Blearyeyed]

Sounds like we are about the same- balanced. ( as can be anyway.)

No, we didn’t know- I know something was wrong with my children- they were sicker , and more often, than my friends kids.

I got constantly accused of keeping my home “too clean.”

Well… that’s what happens when one of your kids is constantly virulent, isn’t it?! You’re constantly disinfecting because some one has to be a functioning responsible adult and run the home! ( and often the company).

Or perhaps you’d like to do it from up there on your high horse while watching me mop up vomit, yet again, with hot soapy bleach water?

[Blearyeyed in reply to KellyInTexas]

I know there's nothing worse than those high horse riders , spouting their ill informed advice and starting all of their comments with , " If you just do this...." . Like we haven't thought of it , done it , bought the t-shirt and realised that their little tips may be very interesting but no amount of hot yoga or quinoa will " cure" a lifelong chronic illness.Not sure which makes me bite my lip more really , the over opinionated lay people touting the next healthy people's big thing or the under educated doctors whom give no advice at all , unless it's about 50 years out of date , of course.

[Thelmarina]

Thanks for sharing all this when feeling rubbish. Much appreciated ❤️ Get well soon and keep out of this chilly dank wet weather!!

[Blearyeyed in reply to Thelmarina]

Thank you .Yes , it was bucketing down when we went out , I must have looked a state as I'd worn my teddy coat and furry boots to keep warm so I looked like a wet dog when I got inside.

Take care x

[Thelmarina in reply to Blearyeyed]

😂

[Yellowbluebell]

email on the way xx

[Blearyeyed in reply to Yellowbluebell]

Who says big sister isn't always watching you xxx

[Nextoneplease]

Thank you Blearyeyed for this really helpful information.

Sorry you’ve had such a difficult start to 2023 and hope you continue to get better asap 😊xx

[Blearyeyed in reply to Nextoneplease]

Thank you , I'm hoping the antibiotics take effect soon , for my OH as much as myself , each time he coughs he rolls about whimpering like a demented woodlouse , it's becoming most disconcerting.My biggest worry is if you can become a addicted to Strawberry Strepsils , I can't seem to get enough of them.

Take care , Bee

[Nextoneplease in reply to Blearyeyed]

A demented woodlouse eh, the mind boggles 😂 I think you’re safe with the Strepsils though!

Seriously, hope you’re both better soon, it sounds a pretty nasty bug 😳xx

[Blackcat1M in reply to Blearyeyed]

I hope you feel and get better soon, and sorry but I have not laughed so much as your comment about your OH rolling about like a demented woodlouse, never heard that before.

Hoping you will have a good new year despite the awful start to it 🙏🌼

[Blearyeyed in reply to Blackcat1M]

Thanks , doing ok , the woodlouse can't get warm today so he's sitting here in a Darth Vader gown and a bobble hat which irritatingly bobs about while he coughs. Each , cough is followed by an ooh! " Cough, ooh, cough, ooh, cough,ooh, cough, ooh,ooh "......"Bring Me My Crossbow!!!!"I've ran out of Strepsils and think the withdrawal is effecting my usual level of Zen. Take care, Bee

[Blackcat1M in reply to Blearyeyed]

you too , just trying to picture the bobble take care thank you for the information.xx

[DorsetLady PMRGCAuk volunteer in reply to Blearyeyed]

Your sympathy gene not fully functioning today then….or it’s it just in regard to woodlice 😂🤣…

[Blearyeyed in reply to DorsetLady]

I usually like woodlice! So you can make your deduction from that😄😄😄

[DorsetLady PMRGCAuk volunteer in reply to Blearyeyed]

Nuff said!

[MamaBeagle]

Thanks for that really useful info, Bee. So hope you feel better soon 💖

[Blearyeyed in reply to MamaBeagle]

Thanks so much , take care, Bee

[Sueloobyloo]

Thanks for the heads up and I hope you and your family get better soon 😊

[Blearyeyed in reply to Sueloobyloo]

Thank you , take care , Bee

[agingfeminist]

just to wish a speedy and uneventful recovery. Here in Israel we can buy all the text kits at the pharmacy ...strep, flu A, B, C and covid. The covid and flu now come in the same pack.

Are they not available in the UK?

Lots of all those illnesses around but virtually no one wearing masks! I know of several people who have been hospitalised. But generally cases of covid self-diagnosed and not reported so everyone can pretend it has gone away. (But disease might be the least of our problems here at the moment)

[Blearyeyed in reply to agingfeminist]

Thanks so much.In the UK we can buy tests over the counter but by making an appointment with the pharmacy it is free and the pharmacist did a proper check up too , looked in my throat , BP , temperature, gland check and the test itself , plus we got our prescription straight away without needing to contact the GP again. Better service than I have had at the surgery in the last year and no waiting time.

I still wear a mask in public places , many people do in Wales . They clearly try to manipulate COVID figures here too by stopping tests even with symptoms but it hasn't gone away. The interesting thing on the graph I was shown was just how much higher the spike was for AandE treatments and hospitalisations for Flu , about two and a half times that of COVID because of the mistakes made and low take up if the flu vaccine.

Hope things improve for you over there soon , and the current tensions don't affect your health , take care , Bee

[whitefishbay]

Oh no - sorry to hear it. Lots of coughing about. I have started wearing a mask on the bus (rammed due to strikes). Get well soon. x

[Blearyeyed in reply to whitefishbay]

Thanks . Yes keep the mask and bring the hand sanitizer back for good measure , I was surprised at how long we would be contagious with this and it lasts on surfaces for about a day too. Take care , Bee

[whitefishbay in reply to Blearyeyed]

Sounds nasty. The bus is one big cough. Ew.

[Blearyeyed in reply to whitefishbay]

So glad I don't need to use public transport at the moment , especially for that reason , be careful , bee

[AshPen9]

Thanks for the heads-up Blearyeyed, and best wishes for a speedy recovery. I must have had my head in the sand (or more likely not watched the news for a couple of weeks), because I thought that it was mostly affecting children . So thanks for the wake up call! It's really good that pharmacists are able to deal with the testing and dispensing. Let's hope that they are soon able to take a bit of weight off the GPs in other ways. Good luck with resisting the Strepsils addiction!

[Blearyeyed in reply to AshPen9]

Terrible , I shouldn't have artificial sweeteners either , why did they have to give them such a nice flavour!I knew more vulnerable people could get Strep like children and teens but was surprised at the amount of generally healthy adults were getting it too.

Three teachers had been off work at my husband's school with it also .

I think the strain is more virulent than usual.

The chemist has had to start filling in government data.

The increase in adult cases started mid way through December so it would have been less of a priority on the news with all of the strikes.

I will definitely be considering using my chemist for more things too , they are an info hub and organise non urgent free lifts to the hospital for appointments.

Plus , you get to buy yourself a nice treat like a whistling lollipop or flowery soap when you are done .

Take care , Bee

[Sophiestree]

I also had Strep A before Christmas which straddled over so another year of staying away. The hardest thing was finding a chemist that had the prescription in stock.

[Blearyeyed in reply to Sophiestree]

Yes , we were lucky , they arranged our appointment to coincide with the drug delivery as they had ran out of antibiotics as well. Hope you feel better now , bee

[AshPen9]

Well, I don't know about whistling lollipops, but our local pharmacy carry enough stock to satisfy my OH's absolute addiction to Cherry and Aniseed Fishermans Friends! The hospital lifts thing sounds great.

[Blearyeyed in reply to AshPen9]

Probably a better to kiss him after those than the original fishermen's friend which I remember seeking from my Dad at age 6 and regretting it about 10 seconds afterwards , urghh!!! They tasted horrible.I managed to buy some cheap rubbing alcohol , I'm going to try it on my joints but I got it mainly to do some ink painting with .

The free hospital lifts have been available via volunteers for some years now but the chemist is the first place I've seen the posters for it and they said they are happy to call for people if they need them to.

[Jackoh]

Thanks for the info Bee. X💐

[Blearyeyed in reply to Jackoh]

My pleasure , take care , Bee

[Slowdown]

The pharmacist attached to my surgery has been a huge source of information, in my more fanciful moments I think of him as a guardian angel who keeps a benevolent check on my meds with a phone call but your discoveries open up a whole new resource so thank you for sharing this. Hoping my pharmacy offers what you describe, will certainly explore this.

But very sorry you've had to go through sickness to find out, very best wishes for recovery Bee - you're always enlightening! 💐🙏

[Blearyeyed in reply to Slowdown]

Thanks , I'm feeling a bit less swollen this morning so I might manage some slightly more solid food today. I'm hoping to get past the sleeping soon as I haven't been able to take my Dysautonomia meds in case I dropped off ( it can make you hypertensive if you like down ) so my resting heart rate is a far too excitable 120bpm this morning. I hope your pharmacist does do the same things , but if you ask and they don't they may choose to start the service as well , and it should be available at a chemist nearby. Ours isn't a big town chemist it's just a little independent one in a little village but the chemist and his husband are very nice.

Take care , Bee

[Ana-16]

Thanks so much for such detailed and helpful information. Hope you recover soon.

[Blearyeyed in reply to Ana-16]

Thanks , take care , Bee

[Broseley]

So sorry to hear you and OH are not well. You are so kind to think of us and pass on this useful information. Please look after yourself and focus on your recovery now.

Best wishes 🤞

[Blearyeyed in reply to Broseley]

Thank you so much , I will pass on your regards to the OH , take care , Bee

[Uglow]

I hope you feel better soon and thank you for great information. Happy new year x

[Blearyeyed in reply to Uglow]

My pleasure , take care , Bee

[Pixix]

Hope you’re better soon…I’ve noticed here in England they keep telling us how many children have died of Strep A, & poor Mums are now desperate & going to A&E…but more adults have died than children…& don’t get a mention! I did see the first news item saying don’t go out if you’re sick, please, & if you must, then wear a mask. I think if they asked everybody to wear a mask for this winter it may help the medical profession (& the population, but don’t see folk, apart from us) in masks around any more! Hugs, S x

[Blearyeyed in reply to Pixix]

Thank you . We still get quite a few people in masks , here. Many of the teens wear them from my husband's school and they were really considerate yesterday when some came up to say hello and stood well back. Maybe it's because he still wears his mask each day at school to protect me and we worked out a nice maths problem which showed why.I asked the chemist if he thought it would be better for everyone if we just followed the mask and distance rules because of all the different illnesses every winter , and was in complete agreement on that.

Our local hospital is in stress measures and they did state nobody was getting in AandE without a mask even before Christmas . The fact that people have a problem with that still surprises me , if you haven't gone there with an infection why on earth would you want to up the risk of leaving with one.

Take care , Bee

[Pixix in reply to Blearyeyed]

That’s good news, re masks! Think if they asked everybody to wear them, just for the winter, it may help with the health service crisis we have in England! Great behaviour from those teens! I agree…if they asked people entering a shop…which would you prefer, wear a mask, or get germs, hopefully there would be quick mask wearing then! My long awaited blood tests tomorrow have been cancelled as the phlebotomist has Covid…she’s not the only one at our surgery, either! I have PMR, fibro, too, & hypermobility, & wondering if Ehlers Danlos is a possibility…newish symptoms fit…year long wait to see consultant but due a major exam at doctors with a whole hour’s appointment!! He will try to expedite the next stage!! So much to look forward to! Hope you will be better soon, S xx

[Blearyeyed in reply to Pixix]

If you need any advice with links to the right tests for EDS classification let me know . I printed them off for the GP and they testing is so easy but because none of them are willing to admit they know nothing about EDS or need to look this stuff up I got tested inappropriately five times before I even got to the point of the initial diagnosis of GJHS. The GP can also diagnose it in the UK it's just that they aren't willing to do it because they don't look up the criteria tests and how easy it is to assess. It can easily be done in a double GP appointment.

They all live under the assumption that you must display everything , which isn't true depending on your age you just have to be able to state you could do things in the past , trouble is they don't follow the guidelines and heaven forbid that they believe what a patient tell them . Or they assume that your skin must stretch like the rubber man in a copy of "Ripley's believe it or not" , in fact the skin only needs to stretch a few centimetres or an inch in certain specific places and with certain EDS types it's more to do with frailty of skin not elasticity.

I took pictures of myself doing the various extensions which I keep on my tablet to make sure I had evidence in case I was having a bad day at the appointment or my brain fog wouldn't let me follow the instructions.

If you contact me on PM I will send you the links as soon as I can.

Good luck with it all , Bee

[Pixix in reply to Blearyeyed]

That would be very kind, will send PM…but no rush, you rest & get better first! Doctor thinks I could have RA, no offence but I think I prefer ED…but at least for them to look into it! I don’t usually do Dr Google, but when you can’t get a dr’s appointment for 6 weeks & a consultant is a year’s wait…well, that drove me to it! Nothing else fitted so well! I have dislocating joints, thin skin (used a mould cleaning product & it went through my skin but I had no noticeable, or visible cuts…must start wearing gloves! Skin is stretchy, but not quite Ripley’s rubber man!! Thank you, very great help, S x

[Blearyeyed in reply to Pixix]

Stuff sinking in your skin , I know what you mean! Apart from the dislocation, you know you have EDS when you paint your face as a tiger for your children's birthday and you don't lose your stripes for three days despite the scrubbing!Believe me , it raised a good few eyebrows at church and in the playground at pick up time.

Upside , if I put on lipstick , even the ones that don't guarantee 24 hours coverage , I never need to reapply for three days either.

Happy to help when you need me x

[Pixix in reply to Blearyeyed]

Brilliant, must remember to lay off the tiger stripes!! I don’t wear lipstick any more, it never used to come off…mascara, too, got fed up with scrubbing so hard!! Another learning lesson, thanks! I looked really hard for cuts in my skin today, as the cleaning fluid went through, & couldn’t find any. S x

[Blearyeyed in reply to Pixix]

I'll give you some product tips if you like via the messages , there are some tips I've invented myself to stop so many of the skin reactions , and possibility of getting stripes!

[Pixix in reply to Blearyeyed]

Thanks!

[powerwalk]

Thanks for info. I can feel your fibro pain, i have it too!! Speedy recovery.

[Blearyeyed in reply to powerwalk]

Thanks so much , take care , Bee

[Frewen1]

thanks for all that info and hope you recover quickly

[Blearyeyed in reply to Frewen1]

Thank you , take care , Bee

[tempusfugi]

This is SUCH a useful thread and all thanks to you, Blearyeyed, especially since you're feeling so lousy as well. Many thanks and, as the saying goes, get well soon.

[Blearyeyed in reply to tempusfugi]

Thanks that is very kind , it has kept my mind distracted from my pounding throat so I should be thanking you all too today , take care , Bee

[Tiggy70]

Hi, So sorry to hear that 2023 hasn’t got off to a good start for you and your OH. It’s such a balancing act between seeing family and friends and risking picking up one of the viruses that are circulating. On one hand we want life to be back to ‘normal’ but what is normal now?

Thanks for the Strep info. I do hope you start to feel much better soon. Sending you a virtual hug, Tiggy70 x

[Blearyeyed in reply to Tiggy70]

Thank you , there's a big battle going on between the Strep and the antibiotics today and I feel like my throat and face are the boxing ring they keep bouncing off. Luckily , I worked out a careful way to feed and keep my husband stable with a virus over the years , he is Type 1 Diabetic so his blood sugar can go sky high with any bug but we keeping his figures under 10 , it's just the pain he isn't so able to deal with . We've just watched a modern remake of Whiskey Galore with Eddie Izzard on BBC iPlayer, it was very good , I'd recommend it to lighten up the winter nights , it has cheered the OH no end.

Take care , Bee

[KellyInTexas]

So sorry you started out the year with strep…

This is great information.

I wanted to let you know something I’ve learned about Ehlers Danlos when you feel up to it- that could possibly be important for you.

It turns out I have Loeys- Dietz syndrome- type 5

( it’s TGFB3) - genetic variant. It’s usually a milder version with problems having adult onset

There are 6 variants- SMAD, a few others.

A test that is very good to take, the one my doctor ordered, is Invitae, the company is called. It’s the genetic connective tissue disorders panel.

My rheumatologist tested me ( genetic test - ) and if you have symptoms, ( mine were hernias - bi lateral inguinal ) starting at 18 months of age that I had surgically repaired, then that trumps the EDS diagnosis. It can look exactly identical-

- very sensitive to Foods and medications( mast cell like reactions)

I was tested because my mother had an aortic aneurysm at age 65. This was in 1995, before Drs Loeys and Dietz of John’s Hopkins described the genetic connective tissue disease.

It’s autosomal dominant- so if you have the variant, 50% ( approximately) of your offspring will have it. Both of my children do not have it. Very lucky!

It’s extremely rare.

I can direct you to a face book site - it has very tight admin and extremely informative)

Loeys-diets Foundation.org

Will take you to links

Contact me privately here, and we can connect if you have questions. A simple test - yes/ no.

70% of positives are de novum. ( no one in family line had it.)

I personally think every single person with EDS should be checked.

If you are a carrier: and a parent had (mom or dad either one) : then you have Loeys Dietz Syndrome

An MRA ( with contrast ) from top of head to top of thighs to get a base line should be done.

If all is fine- then repeat one or two years later.

If you have an aneurysm anywhere- usually aortic root and on- but not always- 4.0-4.5 is cut off for surgery- in general. A lower threshold for Marfans.

If you have high blood pressure, plus the start of an aneurysm losartin is needed- to lower pressures on aorta. Some cardiologists/cardio thoracic surgeons start before that stating it helps strengthen the aorta/ “ scaffolding.”

My MRA’s were perfect 👍! I will be scanned yearly.

There are specialists in England.

[Blearyeyed in reply to KellyInTexas]

Just accidentally left you a message on the list under your message rather than as a reply if you want to look at it. But if brain fog going on there!

[KellyInTexas in reply to Blearyeyed]

got it none the less and your chat box here with HU should indicate a message in the inbox.

[KellyInTexas in reply to Blearyeyed]

also should add here that the info I’ve given you is from Gretchen Mc Cormick, the personal Nurse of Dr Dietz, with whom my GP is getting his directives until I’m established with a proper specialist in Houston, which I’m currently in the process of doing.

[Blearyeyed]

Please message me via PM with the info it will be really helpful.We can't get genetic tests done by the GP or Rheumy here, but we recently got a good , forward thinking GP at our surgery whom finally but the bullet diagnosed my EDS properly and my daughter's on the same day ,,and referred us as a family to the Genetics service , something I'd been trying to get every consultant I'd seen in the last twelve years.

We are getting lots of interviews , paperwork and scans etc at the moment but it will be good to know when the face to face appointment happens which tests I should be asking about ensuring are included in the panel.

From tests on me so far based in my father's family history they are concerned about it being Vascular or an EDS type one Marfanoid combination ( if it is this I have a feeling we will end up being contacted regularly for testing and prodding but I don't mind helping with research.

The EDS us also linked to my Mum's side , and they are going to do tests based on our history for PBC and Autoimmune types of pancreatitis and hepatitis. Hope so , as I'm getting nowhere with help for those symptoms at the moment.

Thanks for your care and support, Bee