Morning hun, it too will pass like your relapse this having your posts reviewed.
The thing is with steroids, they dont always work straight away and really need to be started in a 14 day window to be affective from the start of a relapse. I know with my hubby he lived on them and it was usually towards the end of he course that suddenly they would kick off a week after he stopped them.
Before you started were you checked for any infections (uti etc) as even an infection can make your symptoms exacerbate. So steroids wouldn’t work anyway.
I read your post. SERIOUSLY, have you read it back to yourself?
You have been through loads of stuff which could have slowly triggered this off, then you kind of slip in you have just completed week 6 of the Couch to 5k programme. I mean really… that is HUGE and could have been the straw that finally kind of broke the camels back. for anyone who hasnt heard of this its here. Exercise - NHS Your body might not be in true relapse.
You say your symptoms started 3 weeks ago (3 weeks after starting this programme).
You could be simply exacerbating because you have overdone it. Pins and needles are classic. Fatigue too. It could be your body has just said enough is enough what you doing to me lol. You might have all these things pop up when you have never had them before. an exacerbation and a relapse can feel the same, just one is just a flare up of symptoms which will recede as the cause is removed, and the other takes a lot longer and may leave you with more residual stuff going on as the mylin repairs itself. BUT they can actually feel the same. this is a great bit of information explains it well.Managing relapses | MS Trust
Now heat for me sends me in spiral. I feel awful, can barely move, have terrible pins and needles and legs burning which can last a few days extra even a shower can wipe me out for 2 days. You have just completed week 6 of the Couch to 5k. Its a 9 week programme i believe. So basically the first week you are encouraged to walk and run 3 days a week, and by week 9 you complete 5k. So 3 days a week your body’s temperature has increased significantly, this alone can cause an exacerbation of MS symptoms which can leave you wiped out in pain, with pins and needles.
As you have had 9 years virtually fine, you may not realise that these things can be triggered by something like an exercise programme. Now it may not be that lets say you have had a relapse then the added extra of walking and running would not have helped. I think MS is so variable its really difficult to get to grips with it. I have met people with RRMS who will be fine one minute, then blam suddenly they are virtually bed ridden for weeks, then slowly they recover but are always left with something residual. Your stress over the last 9 years has been huge, moving, new house, death working kids the list is endless phew it fair took my breath away. Starting new symptoms is scary and adds stress so more stress makes more symptoms, and so the circle of MS rubbish starts. Its never ending.
I am amazed you are not on DMD to be honest.
Your husband really needs help, i would worry about him to be honest he isn’t handling this at all well. I think perhaps you might need counselling together to talk his worries through with someone there. Drinking will just make it worse. I really think he is a priority some partners just find it hard.
Once you parents are home, i wonder if you should organise a family lunch for ALL your family and this will give you the opportunity in one go to talk to everyone about how your feeling and that you need help. Never feel you are strong enough to deal with this on your own even the strongest MS Warrior needs fighting soldiers behind them to help win battles.
Get it all out in the open. Now is the time. I honestly think you will get through this, just your sheer determination will get you through this. But you need support at the moment. Dont be too hard on yourself. You need to just rest and let the drugs help you repair. You will get better but i do wonder like i say if some of it is down to all the walking, running and pushing yourself.
I think your amazing you have gone through so much in your life, like well its all normal deal with it, then decided to get healthy and take on the programme by the NHS Couch to 5k. Your obviously a very strong person, and dont like feeling vulnerable i get that hun, i think most of us will get that. It makes us feel useless and then we feel worse.
You really are entitled to self pity hun. But i honestly feel you will get through this and in a way I am kind of looking forward to the next few months to read posts from you where you have come out the other side and feeling more positive. But from an old lady on here, i really think its time you bit the bullet and got your family on board, and your sister needs to understand just how hard it is dealing with MS without support.
Good luck hun, but please from an oldie your husband really needs help right now. Big hugs. Let us hope your appointment on tuesday is productive for you. xxx
I’m going to have a lie down, I’m very tired today