Posted , 7 users are following.
I am overwhelmed at the moment with my new diagnosis of Ehlers Danlos.. I think this overrides my Fibromyalgia diagnosis of 23years, but not sure if I do still have PMR as well. Has any one else been put into the EDS catagory?
0 likes, 17 replies
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EileenH Flutterbie57
Posted
Was it fibro? Was it ever PMR? Maybe it was the ED. But you could have them all ...
There are a few very experienced and knowledgeable people with ED on the HealthUnlocked Lupus forum and they will love to talk to you on the forum. I think there is also at least one lady on the PMRGCAuk forum at HU with both a wide selection of such joys.
What are offering in the way of management/support?
Flutterbie57 EileenH
Posted
Your first sentence says it all Eileen!
It is rather overwhelming at the moment, as it is much more complicated than just loose joints.
Doctors are now injecting something into the joints to create scar tissue which then holds the joints more firmly in place. They have been using it for many years on people with varicose veins. It is causing a bit of a stir in medical circles here in NZ and I believe it is the same in the UK. (between the believers and the non believers.) I will have a catch up day tomorrow and look into the forums you suggested, and I have a couple of interesting articles to read.......one is a recent conference in the UK about EDS
Patient site now has a good article about it which I found last night. I could not find anything much about it on here a few months ago, so not sure if it is new, or if I just could not find my way around. I could be in real trouble......brain fog is a part of Fibro, PMR, EDS and Pred . I would put a hilarious emoticon on here if I could only f ind one !
EileenH Flutterbie57
Posted
Already given you a heart 😉
This might give you some ideas:
https://seniorplanet.org/more-fun-with-emoticons-how-to-makes-faces-and-more-with-your-keyboard/
😄
EileenH
Posted
The open mouthed smile at the end is : - D typed without spaces between them ...
😄
lynda62707 Flutterbie57
Posted
I'm so sorry flutterbie.
I'm also a bit embarrassed, but what exactly is ED?
When you're able, I'd like to hear from you. Until then, you're in my thoughts.
I too, know how tough these multiple diagnoses can be.❤
EileenH lynda62707
Posted
The Ehlers Danlos mentioned in the title:
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
Flutterbie57 lynda62707
Posted
Thank you Linda. I am drained, deteriorating, but in OK spirits. Can you tell me how u put that little heart on here ? I love the little emoticons as sometimes we write/share miserable text and I would like to show that I am not as emotionally drained as I am physically (sometimes). I will have to have a catch up on here soon too as I am not sure where you are at, at the moment.
lynda62707 Flutterbie57
Posted
hi again ms. Flutterbie....as far as the heart emoji, it's on my phone......I don't have a computer.
I read the link sent by Eileen......I'm so sorry you're having to go thru all this. it sounds awful, and my heart goes out to you.
I've always believed that no ONE person should have to deal with more than ONE horrible illness or tragedy in their lifetime. Sadly, it just doesn't work that way.......both of us are proof of that.
please keep us posted, and know I'm keeping you in my prayers.❤👍🌷
EileenH Flutterbie57
Posted
Try googling it - do you use a computer? There are various ways of doing it depending on your device.
When they did the revamp we begged to have our emojis returned. But like everything else we asked for, some has been promised and nothing done ...
❤️ ❤️ ❤️ - I wonder if they look like hearts?????
And that's another gripe - you can't try anything and delete when it doesn't work ...
EileenH
Posted
Right there you are:
Type < followed by a 3 (with no space between them) and once you post it, it will be a heart ❤️
Flutterbie57 EileenH
Posted
Definitely a heart ! I noticed some one else had put a few emojis on. I am off to look for them now. Im already low carb, gluten free, very close to dairy free, now I will try the wee snack attack u suggested.<3
Flutterbie57
Posted
❤️
Flutterbie57 lynda62707
Posted
Thank you. I have just started catching up on what has been happening to u. I found we have or had something else in common. We could have a few laughs over my doctor and your rheumy after we get over the trauma. My dr has had two, what can only be explained as very unprofessional hissy fits, at me this year. 1. because the Osteopath wanted her to refer me for EDS testing. 2. because I went back up to 6mg from 5mgs. The second time she melted down, I changed Dr immediately. What a world of difference. I got more help and guidance in one 30 min appointment, than I had got from the previous, in 6 years. I hope u have or will move on from your Rheumy, they are toxic for our health.
EileenH Flutterbie57
Posted
Have you told the lady you have an ED diagnosis? For the sake of the next poor patient if nothing else ...
Flutterbie57 EileenH
Posted
I will send a letter to her employer with some information from this site regarding PMR as well as EDS and a quote from you Eileen !