Chung Strauss recovery.

[PedroMcbain]

Hi

I was diagnosed with Chung Strauss in 2015 after sudden and severe issues with arm/leg numbness and pain and also chronic digestion issues. Pleased to say I am in remission for 3 years and my only meds are Azathioprine and ramapril (for heart). I have been told by my specialist that my recovery has exceeded all expectation 😀.

I was diagnosed after going to a&E because I had lost all feeling in my arms and legs and was suffering from ever worsening stomach pains and digestion issues (over a 4 week period), a&E feared a stroke and kept me in for tests. Having ruled out a stroke I remained in the acute medical unit being poked prodded and testing until a week later I was diagnosed with Chung Strauss syndrome. I was diagnosed on Friday and left hospital on Monday morning having been jacked up on steroids and immune suppressants. Getting back on my feet was tough , I was very weak, had lost a lot of weight and muscle and could hardly walk.

Before I was ill I had been a busy HR professional, a very keen tennis player and cycled around town - so very fit. When I returned to work on steroids after short rehab plan I was back full time however over 18 month period I was weened off the steroids. Once off the steroids I had change to part time hours because I suffered from fatigue (mentally and physically).

While I am very lucky to continue all the activities I used to do, muscle weakness and fatigue are my two remaining big issues - I am only working part time because of mental fatigue, I now use an electric bike to get around (really great) and play doubles tennis not singles because of muscle weakness.

Chung Strauss has wide and varied consequences from patient to patient but I am wondering if anybody here has had the fatigue and muscle weakness issues and if either of these have improved over time?

Many thanks

Pedro

[cairneyh1]

Hi Pedro

I too was diagnosed with CSS after attending A&E in 2017. After 6 months of work and 2 months phased return I have been working full time as a secondary school teacher. I was also very fit and can now play tennis 3-4 times and golf 1-2 times per week. It has been a long road to get to this stage and I feel fatigue and sore muscles more than I used to. However, I am still on 5mg of prednisilone per day and I have had the synacthen test but my adrenal gland is still not working properly. So my consultant is in no hurry to reduce the prednisone and neither am I. I am getting stronger and fitter as time goes on. Is your adrenal gland working properly?

Harry

[PedroMcbain in reply to cairneyh1]

Hi Cairneyh1

thanks for getting back to me. While on 5mg of steroids I felt fine but I don’t recall having an adrenaline check before the steroids were removed, I’ll check this out.

Many thanks

[cairneyh1 in reply to PedroMcbain]

Hi again

According to what I have read and discussed with my consultant the adrenal gland shrinks when a person is on high doses of steroids and stops supplying the body with natural steroids. This should be checked before reducing the oral steroids below a certain level.

Harry

[PedroMcbain in reply to cairneyh1]

Thanks Harry