Living with Sweets

[Country-bumpking]

Hello everyone. I am 72 and just trying to recover from my second attack of Sweets. It's taking months. Half the worry is not having others to talk to because it's so unknown. Hopefully, that's all about to change. Best wishes to you all

[Shell567 Administrator Sweet's Syndrome UK]

Thanks for posting, Country-bumpking, and welcome to our HU community. If you're interested, we also have a closed (private) Facebook group: healthunlocked.com/sweetsyn...

[Jacqs23uk]

Hi and welcome, firstly your not on your own, there are many of us and Sweets treats us all differently, Im 46 now and have had my SS for the best part of 10 years, it was a few years before i got my diagnosis and initially sent away with an internet web address to find about my disease.

I live in the Uk, and when i found Michelle and the Sweets Syndrome site it was a blessing, so much information and Michelle obviously donates a lot of time keeping us upto date or best advice.

If you read my posts, you can see how my SS is for me, rather than me repeat it as its lengthy and constantly with me.

Im now type 2 diabetic now also, a side effect of long term steroids, and i have been constantly taking them for nearly 10 years.

So i am fairly knowledgeable now about my own SS, i can now recognize symptoms outside of my SS which is good because every new pain or difference i experienced was always put down to my SS by my Doctors and the reason being is their lack of knowledge about SS.

One thing i found extremely helpful in the early days was to keep a Diary, both written and photographic, and then you get to see any repetition and it helps in recognizing triggers if any or just to become familiar with the different types of lesion, sores, lumps and bumps and all the other lovely SS niceties.

So all that being said, i just wanted to say YOUR NO LONGER ON YOU OWN, Feel free to message me if you need to chat.

God bless for now, big hugs and kisses.

Warmest regards

Jacqui

[Country-bumpking in reply to Jacqs23uk]

So lovely to hear from you. Isn’t it a nightmare. I am also type 2 diabetic & the Steroids clash with the Metformin leaving me 80% house bound because of dizziness & blurred vision. My consultant said I would be on maintenance Steroids for years but last time I went to the hospital I saw an”underling” who said “rubbish, I shall take you off them”. I go to hospital again on Monday. 🤞🏻These are the sort of problems that make it so hard ,don’t you find? I hope you are keeping free of it & send you love. God bless xx

[Jacqs23uk in reply to Country-bumpking]

Bless, thank you for your kind thoughts, unfortunately i only manage to get my steroids tapered down to 15mgs before i have to increase again as my body is so so sore.

I agree totally about steroids clashing with Metformin , throwing my sugars up, My SS causes me more issues with joint and muscle pains than sores and lesions, although big flare up always land me a spell in hospital.

But we wont let it get us down , mostly anyway as it does dictate my life day to day. I hope your current flare does not cause you too much distress, i always have some lesions, predominantly on my elbows, knuckles and knees, they take so long to heal as well, so never free of it.

It took me a good while to except my life changes, but i have Wilson with me every day, hes our Pug and keeps me entertained and hes such a character there is never a dull moment.

A hug from a Pug is all one needs.

I hope you manage this flare up, and feel better soon.

God bless.

Jacqui xxxx

[Country-bumpking in reply to Jacqs23uk]

I’m sorry it’s so bad for you. With me it’s my hands. Enormous blood filled blisters. I envy you your Pug. I wish I had one but I have no one to look after it as my husband died just before Christmas. A few days after I came out of hospital. It’s so lonely but timely He was much older than me,85, & very ill. I was his career. He couldn’t cope with it all. You sound a very brave lady & I am so pleased to have contact with you. It has stopped me feeling sorry for myself Bye for now. Love Ell xx

[Jacqs23uk in reply to Country-bumpking]

Hi Ell, apologies its been a month since, i hope i am finding you well or as well as one can be living with SS and Diabetes.

I'm sorry to hear you lost your Husband, and a day can feel very long being housebound and on one own. Wilson our Pug most certainly helps me, he's my shadow where i shuffle he follows he's so loving and full of mischief and has the cutest face making his mischief all the more adorable, little Pug massive personality.

I can't find anyway on here to attach a picture as if you can't have your own Pug we could of sent you a few pictures that would of made you smile.

The weather is starting to get warmer here in England at the moment and my SS seems to behave better in the warmth, so the more Sunshine the better.

My blood sugars are still an issue not being so active means i don't always have an appetite and have had a few Hypos which have not been nice and instantly makes me nauseous and dizzy and then trying to eat something to bring my sugars up is pretty difficult when your feeling terribly sick !! So the quick fix as advised has been to eat Jelly Babies and they are not so bad, Wilson does not mind them either apart from Orange ones, he does not like anything Orange and won't entertain any food items of this flavour, fussy Pug.

So let me know how you have been.

Warmest regards

Jacqui and Wilson xxx

[Liney1955]

Hiya Country-bumpking,

No your not alone with this problem. I have had 2 breakouts this year, one on my back

the other on my arm. The white blood cells are really on the attack, so painful.

I saw my Dermatologist last month, he gave me some steriod tape to try.

I couldn't use it as it irritated too much. Have you been too the doctor or dermatologist?

I hope your sorted soon - keep positive my friend.