Forum

So many questions

Hi

We all have so many questions and i suppose its because we have so many different (not normal) things happening…

I have been feeling good until i went on a day out with the family after walking some distance at my own pace i paid the price for at least two days after where i had pins and needles in my feet my legs felt numb and every time i get up to walk around its like a banding in my stomach nothing i havent already had before however when i go to bed and lie down where the tight band feeling has been around my torsso it feels itchy like something crawling on my skin but this only happens when trying to sleep, very starnge but does anyone else ever have this? or am i going mad ?

I have written it down as i have my appointment with the neuro next Friday

Mandy63

Hi Mandy, what I think you may be experiencing is called ‘hug’ or sometimes called ‘banding’. It really is a bug*er. I get it quite often so know exactly what you’re going through.

Very tight, yes itchy and tingly, sometimes feels hard to breathe, sometimes all around the area (so anywhere from very high on chest to stomach area and any area in between). Sometimes only on one side and not all around.

It’s a spasm of the small muscles between the ribs. Here are some tips that might help:

  • Much worse in heat… like right now!
  • Much worse when fatigued or stressed
  • Don’t wear a bra (it irritates the muscles)
  • Don’t wear tight clothing… the looser the better (this inc knickers… take em off!)
  • Avoid large meals… little and often is better
  • Lie down in/on bed if you can… and lying completely flat often helps
  • Take 2 Paracetamol… if you are not on other pain med’s
  • Try controlling your breathing… deep in through the nose and slowly blow out of mouth… and try and relax whole body while doing it
  • Stay as cool as you can but don’t have cold shower… luke warm is better
  • Rest, rest, rest and then get some more rest (if at all possible)
  • Gently rub the affected area. It might feel like it’s bruised… don’t worry, that’s normal

Hope this helps hon. Good luck with the neuro and yes tell him/her about it.

Pat x

Hi Mandy,

The MS hug is horrid but I found after the first time, when I thiught I was going to die!, I learnt to breath through it and to concentrate on the fact the feeling will pass.

With regard to your day out and walking, you will learn what your body can or cannot tolerate. I plan my days and weeks ahead. There is only so much I can do. If I over do things, I will suffer…

Google the spoon theory and share it with your loved ones.

Take care

Clare x

Hi Clare/Pat

I did reply to the post but its disappeared!!!

I was saying yeah it can start from just under my bra and can be down to just above my waist… On days when not 100% just walking about can cause this however its more uncomfortable than sore only once has it been bad that i ahd pain breathing and was put on co codamol,tramadol and diazepam think for a few days i was on another planet lol

I have started to take my bra off when in the house and wearing it when i go to work…As for my pants well my bridgets are lose LOL

I think once diagnosed my family will maybe understand more but because they cant see anything wrong they tend to think i am ok which when you are tired and constantly saying my legs dont work properly but i can walk they think i am ok …

I am hoping neuro will do second MRI as he said he did not feel that any other tests were required after my first one and with luck once the syptoms stop a chance they may not come back or i will be left with what i have and wait and see… so its a waiting game however in 8 mths symptoms still here and either get worse when i do to much or stay same but i can bear them …when i was given 500mgs a day of steroids it didnt help but made me worse so at min sitting in limbo …

anyway thank you for listening and advice it is appreciated

Mandy x

Hi Clare/Pat

I did reply to the post but its disappeared!!!

I was saying yeah it can start from just under my bra and can be down to just above my waist… On days when not 100% just walking about can cause this however its more uncomfortable than sore only once has it been bad that i ahd pain breathing and was put on co codamol,tramadol and diazepam think for a few days i was on another planet lol

I have started to take my bra off when in the house and wearing it when i go to work…As for my pants well my bridgets are lose LOL

I think once diagnosed my family will maybe understand more but because they cant see anything wrong they tend to think i am ok which when you are tired and constantly saying my legs dont work properly but i can walk they think i am ok …

I am hoping neuro will do second MRI as he said he did not feel that any other tests were required after my first one and with luck once the syptoms stop a chance they may not come back or i will be left with what i have and wait and see… so its a waiting game however in 8 mths symptoms still here and either get worse when i do to much or stay same but i can bear them …when i was given 500mgs a day of steroids it didnt help but made me worse so at min sitting in limbo …

anyway thank you for listening and advice it is appreciated

Mandy x

Hi Clare/Pat

I did reply to the post but its disappeared!!!

I was saying yeah it can start from just under my bra and can be down to just above my waist… On days when not 100% just walking about can cause this however its more uncomfortable than sore only once has it been bad that i ahd pain breathing and was put on co codamol,tramadol and diazepam think for a few days i was on another planet lol

I have started to take my bra off when in the house and wearing it when i go to work…As for my pants well my bridgets are lose LOL

I think once diagnosed my family will maybe understand more but because they cant see anything wrong they tend to think i am ok which when you are tired and constantly saying my legs dont work properly but i can walk they think i am ok …

I am hoping neuro will do second MRI as he said he did not feel that any other tests were required after my first one and with luck once the syptoms stop a chance they may not come back or i will be left with what i have and wait and see… so its a waiting game however in 8 mths symptoms still here and either get worse when i do to much or stay same but i can bear them …when i was given 500mgs a day of steroids it didnt help but made me worse so at min sitting in limbo …

anyway thank you for listening and advice it is appreciated

Mandy x