I was blaming the Warfarin. Hate these heart meds.
Nel
Tizzy said:
Hi Nel -I think many beta blockers make raynauds worse,sounds like the one you are on is likely to. I could not stand the propanalol, my circulation was more confused than ever! It made the Em worse and the raynauds.I was taking it to see if it helped my Em so I just stopped it of course, I believe that there are alternatives to beta blockers so probably worth talking to to your doctor - you really don't want to take something that makes Em worse. I would ask my cardiologist, but I am NOT seeing him anymore!!!!
/>
Nel said:I just spotted what you said about taking propranolol Tizzy. Ever since my big operation I have been taking Bisoprolol and if I don't keep moving I am all day freezing, until going into sudden and really bad flares so that I am tearing shoes and socks off, no easy matter when my right leg still has very little flex and getting shoes on and off is a pantomime. Then I am back to freezing. There is nothing in between. . Do all beta blockers have this effect on people with Raynauds do you think? I have overdone it today and am on the bed now, freezing down to my ankles and with wildly flaring feet which burn from the inside and chill from the outside.
I have started swimming again but the leg won't let me go more often than two or three times a week as it swells up so when I exercise. It's all so frustrating.
Alina Delp said:THank you Tizzy for the wonderful suggestions! I wrote in your yoga post about how I have started in the pool and it feels great! My sores are all cleared up at this time but it did take a good month of barely being able to walk. The massage and ankle movements help when walking isn't much of an option.
Thank you Mads. I posted on your discussion on EM and Ray with the best advise I have to offer. Thank you for getting that started. It is definitely something I think a lot of us can use a few tips on.
Take care,
Alina
Tizzy said:Can you try gentle massage of feet with some sort of cream? Can you try to bend toes up and down and massage under the balls of your feet as even that kind of manual manipulation helps circulation.Keeping doing foot and ankle exercises in sitting when your feet are elevated is great as moving feet up and down activates the calf pump. Trust a physio to never let anyone rest,in the midst of my most difficult times I have had friends who insist on making me move. Even tiny bits help. The pool is fantastic as walking in water is good for circulatory return. As you walk the greatest water pressure is at your ankles and decreases at knees etc- like compression stockings ,but better,and reduces swelling like nothing else. Water temp of pool has to feel slightly cool so the rest of you doesn't flare ,while your feet should get a workout.
My toes get icy if I don't move them- really white,but vascular studies are fine,don't know how ? My fingers tend to do the same.At one stage I tried propanalol and that was a disaster ,should have taken a photo for medical journal - forefoot white as marble and almost at a neat junction from middle of foot to heel swollen huge bright red. Looked like two mismatched feet
joined to make Frankenfoot.
I know the keep moving , even in sitting can be difficult but a patient in hospital is never left still for long as that brings its own problems. Long term intubated patients have regular passive movement sessions to keep range/circulation and spinal patients are tilt tabled for circulation and autonomic function . So to all that read this please wriggle ,stand as much as you can - its not a sexy topic like SCB ,but it is so important.
Sorry , kind of ran away with enthusiasm - metaphorically,of course ! Hope you can do some bits for your toes,to get the blood flowing. I have been seen in my recliner with liner socks perched over my toes.
have you tried Effexor at all ? Tizzy