OK I feel crap today. I woke3/4 times in night with horrific pains in arms and splitting headache. The headaches I’ve had on and off all week ever since the brain scan. My face is absolutely burning up, I don’t know if that’s the headache or the Methylprednisolone tablets I’ve been put on for 5 days. Was told they would make me bounce off walls. Really weepy but I think that’s more the fact things are sinking in. Ok whinge over. Sarah xx
I am sorry your feeeling so low,many of us have many of those days and some plod along fine.
The headaches from hell many of us have them,it could be the meds or its a very painfull headache due to MS.The change in weather also gives me the headaches.I often cry they are so bad.
The waking up at night and spasms/pain/ridgidness many of us suffer from it.
Maybe speak to your GP and see what can be done to help you further.
I understand having MS is a struggle and you are not alone and go ahead and moan all you like we are here for you.
Sometimes the medications need to be looked at and take time to get the right dose,so speak to your GP…
Yes maybe it is just stress headaches and as things sink in they play on your mind and cause you anger or weep.
I’ve been on oral steroids but not had the effects that you’re currently having - the burning face etc. I did when I had iv steroids though…I was burning up, my face was bright red and I was very hyper - racing around like a demented banshee! Bouncing off walls is a good description.
Keep an eye on it - steroids don’t agree with everyone.
Listen to your body - if you need to rest or sleep, then do so.
As Charlie said, we have up and down days. Once you start to feel a little better things won’t seem so cr*p.
Look after you Sarah and remember we’re here when you need us
Dear Charlie Thank you so much. waking up should be used to but after having 3/4 nights of it not happening you get lulled into a false sense of hope!!! Yes headaches are a killer and when you have 2 boys of 10/11 who don’t really understand it really doesn’t help. I have double GP appointment on Tuesday so will muddle through to then, as hate going on the triage list and getting someone who you have to re explain everything too!! I knew it would hit as I took it so calmly as I think I was relieved for them to actually confirm it I am really glad my GP recommended this site!! Sarah xx
Hi Debbie Got you hugs, thank you. Yes my face is absolutely like a tomato and my chest is as well, I look a right site. Have got a recipe out to make some biscuits for boys. I feel full of energy but my body doesn’t seem to want to release it, if that makes sense. Yes these are a high dose of steroids, got to take 5 at a time of 100mg each. GP said that normally that dosage would be done in hospital but they were giving to me orally to see how got on. Have enough to last til see her Tuesday. Sarah xx
Sarah I have a 10 yearold at home who is a wonderfull child but I fear I have started to make her and my six yearold nephew into my carers.Contact Banardos as they strive to give children days out and many other things like confidence and come to terms with a parents illness.
I dont think we will ever get used to it,we know it is coming just when is a waiting game.So make the most of your good days,enjoy your children and your husband.Even if you are so tiered after a trip out it is well worth it for everyone to enjoy themselves and of course yourself.I no longer plan a day out as I do not know how I will feel each waking morning,I am now a get up and go person.I had my wheelchair donated to me on Tuesday and it has given me part of my life back.
I get full body stiffness during the night and have to be carefull as one time I was faced down in the pillow being smothered unable to breath.Yes it is scairy and yes we get up in pain and stiff,but again ask your GP what can be done to help you.This then makes the fatigue worse.
You need time to come to terms with this.You will have your highs and lows and family and friends can help you.Explain to your boys the basics but choose your words carefully they do not want to be worried all the time.Ask for help when you need it.
I am glad you have joined the site,read some of the threads posted here and it has lots of information,another site I use is the MS Trust site,they again have lots of information and sugestions on how to beat this horrid illnes…
Yes maybe your thinking at the moment when will I feel normal,my life feels rubbish,but I am sure in time and the right medication you will start to feel you again.Maybe get a councilor who you can chat with untill you feel a little more ready to fight back at MS.Get Social Services adult section to advise you.I got myself a Support Worker from Gwalia Support and care in the community and she is worth her weight in gold.
OT and physio can get you FREE aides to help you around the home and even outside,the MS Society can also help you with things you may need.Bath lift,bed risers,adjustable stools and so on.A district nurse can help also and if you need fenamin items they can supply them free.
You need now to get all those free support of diffrent kinds now this will ease things for you and your family.Do not just sit and think nothing can be done,I am struggling time to start asking for the help you need and set up a good support basics.
My heat and cold preception is terrinlbe I cannot tell hot from cold so I will be buying thermometers for the bath and kitchen sink,small things like these can make a great diffrence.Its just finding out what you will need and getting it.
If your grip is weak then thick elastic bands work wonders on door handles and say knives for better grip.
You can lead a more normal life and yes you will get those bad days and nights,your tired and feel weak and in pain of course you will cry and get angry but time will help you with support from others.
Maybe you dont feel you need aides around the home but MS messes with us so they will be there when we need them so we do not struggle.
Your not alone you now have a new bigger family to help you along.
The brain scan can’t have done anything to you to cause your new symptoms, so please don’t worry that something terrible has happened because of it. (I’m saying this because it’s precisely the sort of thing I would be worrying about if I didn’t know much about MRI!)
Steroids are HORRIBLE things!!! (I’m biased btw; I hate them!) They may be causing all sorts of side effects so hopefully everything will get better once you are off the meds. I’ve not heard of them causing arm pain before mind you (but I could easily be wrong). I’d probably go and see my GP if I were you - perhaps he/she can prescribe some pain meds?
I hope things get better soon.
Aw bless you Sarah - I can offer no advice but come with plenty of hugs and good wishes xx
Hi Sarah, thanks for helping me out, I’m sorry your feeling down and I hopee the meds kick in and get you on your feet. The reason I said thanks w was that your topic answered a lot of questions about my own condition from the responces from your replies. Im not dx yet but had symptoms and signs for many years I ingnored now recently they are more intense freqent Ithought I was going nuts… specially about night cramps and total rigidity . Thankyou and your correspondants . xxx F.
I don’t have any advice either Sarah but just wanted to send you ((((HUGS)))) Take care Xx
Thank you all soooo much and I’ve received all the hugs!!! Feel a bit more myself today, energy levels are up except body not doing what I want it to!! Not so much a tomato today but more beet root. Changed the top I put on as I clashed with it. LOL We want to see a show last night in Christchurch which was the children’s version of We Will Rock You, except Nigel’s mum got tickets in the balcony, JOY Stairs, they don’t have a lift as its such an old theatre. She just hadn’t thought. Callum (my 10 year old) and I made biscuits yesterday with me supervising sitting down. They are lovely!!! Will say I’m slightly still recovering from all the excitement. Nigs mum coming round to cook dinner today and my mum will be back from hols today. Once again thank you soooo much Sarah xx
We are ALL glad you are feeling better Sarah, we ALL have them real down days and we struggle to get through them.
Never think you are alone we are here for YOU to.
I’m so pleased you are feeling better now. We worry about our kids but they will grow up to be far more understanding about disability than other kids. Yours sound great. Take care Xx