Sudden attack from all sides

[Stageleft]

Hi there,This is the first time I have posted and am just wondering whether anyone else has experienced what I had last night. I was diagnosed with early onset SSc (sine) two years ago and have been managing my symptoms which come and go at various times but last night I felt completely ambushed. My eyes (which have corneal damage) were so painful, I could not swallow as my mouth was completely dry, I had acid reflux, every joint in my body hurt and I was stiff and in spasm.

Although I have experienced all these symptoms before, never all at the same time in what felt like a vicious attack on all fronts. I was up all night with it. Everything seems calmer this morning. Weird!

[OldTed60]

Hi there. Good to meet you here. I have Systemic Sclerosis and, although it’s classed as cutaneous it doesn’t affect my skin much so it’s a bit Sine-like. I completely relate to the attack from all sides that you describe. Are you on any treatments yet? I have tried many anti rheumatic treatments over the years as mine was originally misdiagnosed as RA 13 years ago, then Sjogren’s, now SSc. I’m presently on Myophenolate and most recently, Rituximab infusions with losartan and Iloprost for my Raynaud’s. The all body flare ups you describe are much less intense when I’m on these treatments but still affect me occasionally. For me it’s inflammation-related and, when I reached the stage where I was operating only in slow motion due to stiffness and pain, I would contact rheumatology and request a steroid injection or a short course of Prednisolone and a review to discuss a longer term treatment plan.

[Stageleft in reply to OldTed60]

Thank you for that OldTed. That's reassured me that whole body flare ups are not unique. I found it all quite alarming at the time but everything has calmed back down now.I'm not on any immunosuppressant medication although it has been offered. I feel lucky that I have a good rheumatology team around me and I get checked and scanned regularly. From reading some of the posts here, that isn't always the case.

This is such a complex condition and I read up avidly as much as I can about new and ongoing research but there is still so much that's unknown. My sister died recently from MS and we tried every holistic/alternative and medical treatment out there in a desperate attempt to slow the disease down. I was diagnosed with SSc a few months after starting Letrozole for breast cancer and still wonder whether that was entirely coincidental but the research evidence is tiny. I had to stop NSAID meds as I have kidney disease so I'm managing with Solpadeine.

I'm so glad I found this forum. I have felt very alone and sometimes as though I'm imagining the fatigue and stiffness. I keep asking myself am I just being a drama queen?!

[OldTed60 in reply to Stageleft]

I’m so sorry about your sister. When diagnosed with any invisible disease I think we can find it hard to believe in the diagnosis or that it’s incurable. Add rare to this and the state of isolation and denial can double. Then add a rare form of a rare disease and it’s even harder to accept.

I have accepted the offers of treatment from the outset but we are all different of course. I am highly allergic so I always research new treatments here and elsewhere to check out how well they’ve worked for others, side effects to watch out for etc. Having lost close family suddenly and prematurely to undiagnosed diseases I’ve come to believe in prevention so take a belt and braces approach and keep as fit, eat as well as I can within the constraints of ageing and poor health. This approach has so far worked for me - although it has its risks and downsides too of course. You definitely aren’t being a drama queen! X

[OldTed60 in reply to Stageleft]

Ps I’ve read that our cancer risks are greater if we have SSc so perhaps it was the other way round and cancer was an early part of or catalyst/ trigger for your autoimmune disease rather than the treatment? But then again I’m fairly sure that environmental toxins and viral infections triggered mine - although, in my case autoimmunity and allergies were already long confirmed.

[Stageleft]

You may have a point there. X