Reply To: Tips for fluctuations

October 31, 2020 at 8:33 pm

Hi Mike
See below a list of things that help me sometimes and also what causes things to flair up and make it worse.
Don’t forget everybody is different and the disease changes all the time.
I find relief from:
– going to the beach and cooling down in the salt water for 10 – 20 minutes. This provides me with the longest lasting improvement up to several days. I try to do it as often as I can.
– getting enough sleep
– stop watching TV or reduce as much as much as possible.
– use Chinese herb oil when the pain gets too strong. Gently apply, do not rub too much.
– Use Prednisone 40mg or more to settle down inflammation. In my case it does not completely stop the progression of the disease though.
– cold showers up to 20 min.
– Protein supplements and Curcuminoids 600mg or the strongest possible with piper nigrum

Things to avoid:
– Massage. I find this really sets off my whole nervous system and causes pain and irritation throughout the body even when I a get a light foot rub.
– Too much exercise. This is a difficult one. We need to to as much as we can to maintain health and muscle strength but every bit over the limit is causing the opposite for me. I started exercising a few months after my diagnosis 2 years ago and it seems it set off the disease to come on with a vengeance.
– Carbohydrate foods. I feel an instant increase in symptoms within minutes of a high carb meal or sugary food to the extend that after 30 min I can hardly walk while I was walking ok(-ish) before.

Both lists may be incomplete and subject to change. They may work for me but not for everybody.

I also read your post here and I see many relations between what you describe and my own experiences, including the unusual instant sudden onset. I believe that only a few here can fully rely on their initial diagnosis.
It would be great to continue to hear how you are going.

It would also be great to have a register of experiences, symptoms and remedies accessible in one place for others to look up. Perhaps one day someone will do that…