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Feeling so Poorly :(

Hi all, I’m sorry to whinge but you’re the people who are most likely to ‘get’ this!

Further to my previous post of 28 Nov, am still diagnosed/not quite diagnosed and have next MRI for 2 January.

But I feel so poorly and have no-one to ask, as Neuro told me I can’t use MS centre/nurses yet but have to let my GP know of any new symptoms etc. so that GP can let him know. It’s so confusing!!

I rang Neuro’s secretary today to chase up MRI appt and she is lovely, told me to just phone her direct with any new symptoms as she knows how hard it is to get GP appts and anyway what can they do!! She said she’ll just add them to my notes.

But I honestly have not had a single day without symptoms now since July 2017 and I just feel more and more unwell :frowning:

I feel constantly travel sick/motion sick for the last 6-8 weeks and the burning in my legs is far more intense than ever before, and has been joined by the feeling of sand in my socks again and stabbing pains across toes.

My lady bits are sort of numb but burning at same time and I can’t go more than 30 mins without needing to wee (no uti according to my testing strips given to me by a nurse friend) - so my poor Border Collie who I love dearly is just not getting the kind of walks and rambles she needs and we love to do together, which is making me sad.

When I go shopping for food, after a while I lose balance probably due to exertion??

And I’ve got electric-y pulses in my head plus occasional double vision in one eye but that only lasts about half an hour each time.

I have had the first cold in years a couple of weeks ago so that may account for some of it but I had no raised temp.

I’m so very very tired but can’t sleep as I feel like my legs are burning from the inside out.

My husband is constantly shouting at my son who is autistic and is very passive/disruptive my daughter is undergoing assessment for autism at 14 and is cutting herself (superficially) again and everyone pushes me away every time I try to even pass the time of day with them, and I feel so lonely. I wake up every morning straight into a war zone, or so it feels - though in reality it’s probably normal but my defences are low.

Reading this back I sound so pathetic and this is NOT me!! I hate how I’m feeling, I hate not knowing for sure, I hate bloody neuro inflammation, I hate being over 50 and mostly I hate feeling such a wimp!!

So can someone please bash me over the head with something in the hope it’ll snap me out of it!! (aha a bit of my humour still lurks)

I feel tired, old and, for the first time since all this started, I feel scared and down - I’ve lost my positive attitude and don’t know how to get it back. I came off sertraline a few weeks ago and am wondering whether I was being too optimistic and should go back on it for a while longer.

I’m currently going through a feeling sorry for myself stage which I’m having a stiff drink to sort out! My mum always says get a bloody grip you’ve got other people to worry about. Whilst your feeling down and worried remember you won’t be feeling like that forgefrf it’s just a blip and it’s just our stupid brains making us feel shit about things! It’s nearly Christmas… focus on that for now and focus on having a great time and giving your family a great time

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I got towards the end of your post. OMG you have so much to deal with. One autistic child and possible another one is enough to make anyone feel sick.

Look its a long road to diagnose MS. If you get it believe me it changes NOTHING. I found if anything it kind of made me feel worse knowing lol.

when you get a label MS unless you are early onset RRMS there is very little meds. I found as i was older now 67 it took 10 full years to get diagnosed i was 57 then but it started before then i think when i was 50. when your older they dont seem to push a diagnosis.

10 years of pain and just like you burning like your on fire, eyes in trouble, fatigue, horrible just feeling like you have the worse flu ever with no temp etc.

It changes nothing. BUT you can start now. You need to forget the diagnosis, and concentrate on your inner wellbeing. You need to check your diet, and eat really healthy. Take some down time for yourself. stop going out shopping, shop on line. If you can afford it, buy yourself a little mobility scooter you can get them cheap enough second hand, and go out in the morning when you feel refresh and take your dog out they soon learn to walk by your side. DONT over exert yourself it just wipes you out. Learn meditation relaxation. I use music. I just sit and listen to it and it makes me feel calm. I dont do stress so i avoid any stressful times. You need to sort your hubby out as he sounds to me as though he is really stressed out. Have you taken both your blood pressures recently?

work out when your best time is and work around it.

You sound like you are just sitting and waiting to be told…your wasting your life doing that. Its XMAS. get excited sort out stuff make a lovely xmas for yourself and your family.

go out get a baby sitter whatever you have to and have some time with hubby sounds like he is stressed too.

online shopping saved me lol. i couldnt go into a supermarket it made me feel physically sick. I had a laugh one day this is before i even thought of MS, i was with my daughter and suddenly i lost how to walk forward i have no idea how to explain it, but i stepped up on a flat floor went flying and the freezer in front of me caught me and was left virtually falling into this big freezer with BIRDS EYE frozen food lol…talk about getting a BIRDS EYE VIEW he he. well i laughed and so did my daughter little did i know it was a symptom.

so take a deep breath. stop stressing it wont change a darn thing.

eat well as you can. cut out sugars and processed food, try and go gluten free as it helps inflammation. up her vitimin D and make sure you eat stuff with B12.

things will be ok, believe me. I am still here lol…You are frightened nothing to be ashamed of.

but no more stress over it. learn how to deal with the symptoms. best advice is REST and PACE and eat well.

big hugs. MERRY XMAS. rosie. xxxx

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Do you feel complete once you go for a wee? as you may have my problem I was i urinary retention and kept going as much as you did. They thought it was a kidney infection. I now self catheterise a couple times of day and he has made me feel so much better. I was like you feeling complete rubbish but it made such a difference. Like you I am still undiagnosed I have my scan on the 30th dec.

Its sounds like you have so much going on. My husband is the same he doesn’t see any reason to be worried but that is easy when your not going through it.

Hope you have a lovely Christmas

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