Hi everyone
I’m looking for some advice or lived experience about what to expect recovery wise after a significant first flare.
Bit of specific info about me, as I know everyone is completely different: I have rheumatoid arthritis and was taking an anti-TNF drug called Cimzia. I woke one day with tingly hands which just spread and spread to chest, back, legs. I’m calling it ‘the numb’.
I just spent 11 days in hospital with some mega IV steroids. I have been ‘home’ (staying with family who can help me with my son!) for 4 days now.
The drs are saying the Cimzia has unmasked the MS but there were lots of lesions on the MRI so I’m guessing it’s been quietly doing its thing for a while.
I’m normally a very busy single mum. I know I need to rest, I feel wobbly and still uncomfortably numb. The ‘hug’ is unpleasant. Are my hands in a vice?
I don’t feel at all I can be at home independently with my son yet, even if we take work out of the equation. But I’m a huge planner, used to running 100mph and i am struggling with the unknown.
I’m feeling confused about what to expect over the next few weeks and months.
This wasn’t a slow process I was getting concerned about, just whacked with lots of sensory symptoms.
Have others been whacked by ‘the numb’ and have any personal wisdom about what to expect next?
Is it right to just lay at home and aggressively rest? Can I do myself harm if i try and do normal things?
This is very unlike me to feel so vulnerable and under confident.
Thanks so much all x
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hey there - you’re not alone with this. curiously, I have RA too and was taking amgevita which my neurologist felt had also unmasked the MS. I had one relapse nearly two years ago but have had several extremely unpleasant flares since (known as Uthoff’s Phenomenon) and, like you, I suspect I had MS for sometime before the relapse let me know less subtly..
while I am not in your position as a single mum, I am 32 and used to a busy, active life: travelling, hiking, going from city to city, and am struggling to come to terms and accept my new normal eight months after diagnosis. the mental struggle is as pronounced as the physical, in my experience.
I have had a range of sensory symptoms as well as difficulties walking and fatigue; I am also feeling vulnerable and lacking confidence - no longer quite feeling like yourself.
I would say rest as much as you are able: listen to the body’s limits and look after it with good food, rest, and exercise. try to pace it, stay hydrated, take regular breaks. perhaps do as normal, but try to be aware of what provokes symptoms.
have you spoken to a neurologist/MS nurse yet? they may be able to advise drugs, treatments, therapies or exercises, and could offer more specific aid for the symptoms and difficulties you have to manage.
what I would say is that, while it’s not easy or pleasant, it is a gradual learning curve that I am sure you will get the hang of. it’s all trial and error. wishing you all the best with it, and take care - give me a shout if you feel that could help
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