Joints really hurt

[BonnieG567]

My joints are really hurting. Anyone else get this?

[Shell567 Administrator Sweet's Syndrome UK]

Hi Bonnie,

Unfortunately, joint pain (arthralgia) or joint pain and swelling (arthritis) are fairly common symptoms of Sweet's syndrome. Read more about symptoms @ helpforsweetssyndromeuk.wor...

Hope things settle down soon.

Michelle.

[REVIN4GOD]

Hi Bonnie, Yes. Joint pain is a problem with Sweet's. For me the worst joint pain comes in my hips. Keep the faith. Ron

[Jacqs23uk]

Hi Bonnie, i was diagnosed a few years ago although it took nearly four years for my confirmed diagnosis.

I had started with pains throughout my body like id nevwr experienced before, even to lift the cover or turn in ned or take a step was excruciating, i thought i had flu, proper flu not like when we get a cold and say we habe flu.

I carried on until a few days later whilst out shopping or hobbling with help, i had deep throbbing pains in my hands and to relieve or cope i was putting my hands in co-ops freezers and rhen constanly shaking them whixh sort off helped.

Hours laters i was at A + E where i was put with eberyine else until i nearly fainted and the doctor took me through? Within hours i had sores covering my bottom , thighs legs forhead,hands, elbow and lumps like my bones along my radious and ulner where deformed, lumps on my scalp.like someone has beem pulling my hair for hours, soles of feet elbows. I was put on alsorts for pain and steroids and waa seem by numerous doctors, i was 11 days in hospital the first time and have had numerous stays since. My admission to hospital would always follow a sizeable outbreak of sores, they would start one or two and i would try my hardest to deal with it but hours later and covered again mainly bum backs and fronts of legs once we are at this stage i cant sit or lay down or settle due to the pains and sores

So back.to your questions although the sores are painful and i get them all the time in small doses elbows and hands and the lumps the paim i get through my bones is the hardest part, im normally at my best first thing and i never know which bits are going to hurt the most, its a surprise every day, as the day goes in i get more sore and normally by 6 or 7 oclock im no use nor ornament. I ache, not little ache but deep inside its hard to discribe and its sometimes feels like someones grinding my bones, shoulders hips knees ankles wrists elbows fingers thumbs, we take so much for granted until we can't or are.made aware.

Just to try and lean on your elbow or wrist to move yourself, i cant as its to painful, to hold a pen my fingers are double in size and i cant bend rhem to grip, being helped to stand the pain jn my knees makes me cry, to be 44 and have to rely in someone else to fasten your bra, to cut your food, to do almost everything for you, AND I HAVE ALWAYS BEEN AN INDEPENDENT LADY, IVE WORKED SINCE I WAS 13 AND THRIVED AMD ENJOYED MY JOB AND LIFE.

I have had all the drugs in the list and more with little success, i have been in high dise steroids now for over 7 years now and the other drugs trailed jave beem to try and reduce the steroids, we manage to get them down but always have to put them back,.

Reading about sweats amd it says people get better and the sores dont scar is not rhe case i have many scars and the sore marks are are at different stages of colour depending what out break they belong too, but rhe sores i can cope with, the debilitating pain in my joints and whole body i struggle, despite taking morpine everyday, i still deal with the pain,and this has been continuous for the past 7 years. Daily sores on my knuckles and elbows , i can't recall a time when i did not have sores in these areas.

i thought i was lucky only getting the sore on bottom half of body as i never get my legs out but over the last 6 or 7 months i have had sores on my chest, a little different in appearance to the usual and im awaiting further biopsies but i now have scaring across my chest, makes me sad as it visible all the time.

I also get regular ulcers on my tongue and mouth an abscess and as my immune system is suppressed ever thing takes longer to heal.

I apologise for my lengthy reply and this is the short version,

Warmest regards

Jacqui O'Toole

[Shell567 Administrator Sweet's Syndrome UK]

Hi Jacqui,

I'm sorry to hear that you've had to deal with such debilitating pain. Aside from steroids, I don't know what medications your doctors have tried, but there are some that are useful in the treatment of persistent or difficult-to-treat Sweet's syndrome. Anakinra (Kineret) is one of these medications, and can also be useful in patients with joint pain and swelling, and mouth ulcers.

Treatment for Sweet's syndrome: helpforsweetssyndromeuk.wor...