I have been on rebif 22 for 5 months without many issues. I have tried v v hard to carry on normal life after huge relapse in oct last year. I have recently found myself struggling massively with heat and lack of sleep so much so I have come back from holiday early as felt so rubbish. I have had huge pain in feet and legs. Feel like in bath that too hot but can’t get rid of feeling. Have doubled my amitrypyline (can’t spell). Spoken to my ms nurse who is saying see how you are rest etc etc. boring boring. Finding it really frustrating as all professionals telling you to live life but can’t as struggling with everyday things. Do I push myself and go back on holiday and man up or stay at home getting very anxious so much so now got beta blockers to stop that. I am trying to be logical and not get upset by situation. Has anyone else had probs like this. Just feeling very down as it seems everything I enjoyed is slipping away ie sunbathing, holidays etc it might just be a blip I am really hoping that is the case just really bad timing. I have a family to consider and think I am feeling guilty as should be looking after them.
I’m only recently diagnosed and probably have ppms BUT my feet/ankles have been something else in this heat! I turned down going to a nice pub for lunch on Thurs as I couldn’t face getting in a hot car unless it was hometime.
I really hope it’s just the heat, I quit having a bath after the neuro told me about Uthoffs - I didn’t have pain from a hot bath though but could barely stand up afterwards!
It’s horrible giving up the things you love, I totally get that one at the mo.
Fingers crossed you are suffering from the heat the way so many of us are, there’s a couple of threads on here already about it.
Take care and don’t be so hard on yourself
Sonia x