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Honestly so frustrated

Hi all

In need of some support from people who get it. Sorry for moan so please don’t judge.

I am still waiting on my mri 6 weeks away but doc thinks I have some sort of Ms or neuropathy. Still don’t understand everything. Some days I wake up and feel so weak emotionally and physically.

I don’t get this whole thing. It’s came out of the blue for me. I thought I took a stroke but cat scan proved no.

The fatigue is like no other. My heart races even when I load the washing machine. I struggle to get up for work every day. I can’t breathe and all my tests are taking so so long just now. My arms are so painful when holding my phone for work or just holding a tray up to eat my dinner. I have had enough.

I have always been such a positive person but now I just don’t see an end to this at all

Friends family don’t get it

Any advice x

not being funny or trying to down play this, but you have read up fibromyalgia which is a real thing. You sound just like my daughter when she first started with it. they did do all the tests for MS (because of my history) but she is clear. She also had post viral M.E. and was bed ridden for 2 years after a very bad bout of pneumonia. when she has a flare of fibro she cant take washing out of machine as her arms ache so much.

its just a thought.

Hey. Thanks. Yeah from what everyone say fibro is sore to touch. I am completely touchable. I have brain fog too where I forget words. I know they are there but can’t find the word.

Could you be paralysing yourself with fear of the unknown?

Don’t get me wrong, your pain and fatigue are real - this forum is full of folk just about coping, or worse. It’s just your use of language made me sense that you’re overthinking it?

Try to deal with the here & now. Pace yourself and stop punishing yourself for not having the health & energy you once had. Sure, fight it, but accept it too. If you have MS or another autoimmune disease, it won’t get better. That’s terribly unfair but it’s more a question of how slowly it will get worse, but that’s for another day. In the meantime, live for the present.

That’s all really.

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Yeah I overthink everything but losing my sight for 4 hours scared the life out me and nothing is moving fast just now. Lost my hearing in one ear for a week n half. Nothing wrong with my hearing found they will wait on my mri. It’s most frustrating that I am left hanging with you might have this or that. I am struggling to do my job and financially not stable thanks to the last year. Life just ain’t fair just now

when i first started on my journey to see the neuro took about 8 months upto a year, so i paid to see him, he has been with me since 2007.

It is a waiting game. heart racing doing the washing can be a sign of M.E. it isnt usually an MS symptom. MS is an odd disease, but it does have some sort of course which makes a little bit of sense lol.

Its quite odd as from the get go with my symptoms 2000 i never even thought of MS, in 2007 the only person i knew who had it i taught her I.T and she was in a wheelchair couldnt walk unaided. I never put 2 and 2 together as i was so different.

I said fibro as you said "My arns are so painful when holding the phone or holding a tray to eat your dinner, this is classic fibro where you are oversentive to things. You dont have touch your arm but obviously it is affected by doing things. My arms are not painful when i hold the phone, or a tray, i just have fatigue doing it, so i usually talk on speaker phone.

Try to carry on doing things it can be a long journey mine was 2000 (went blind temp) to 2016.