As the post states I have not been diagnosed with MS and obviously some of the symptoms I have may be nothing to do with it.
Of course nobody can diagnose me here but I’m just feeling very lost and confused and isolated with it all.
I have other long-term health problems (regarding mental health) and am currently unable to work due to these and because of terrible mental health treatment in my area and almost no support network. But for ages there’s been so much more going on that I just can’t really explain and all of this together is completely debilitating me. I don’t know whether they are psychosomatic, or why they’re happening. Bear with me that it’s hard to separate some of the symptoms of my mental health condition and this other ‘thing’ – but I’ll do my best.
The biggest problem I’m having is extreme fatigue. I am not getting a lot of restorative sleep and am not able to be as active during the day as I’d like so this may well contribute. But even just getting 7 instead of 8 hours per night makes me non-functional for the day. It’s very extreme. I can barely move, I’m fighting against everything just to do simple tasks, and my brain feels like it’s filled with cotton wool. I feel exhausted yet wired, and unfit to even step out the door because I’m so on edge.
I can’t focus my eyes properly and feel totally detached (although this may be dissociation that I am experiencing). I just feel so much less capable in general. I feel like I’m becoming stupid and I have no original thoughts left – I can barely construct a sentence sometimes. I use words and phrases that are ‘kind of appropriate’ because I can think of the right ones. This may be because of isolation and mental health problems, as I said, but it doesn’t seem to exactly fit.
All this means that a lot of the time I just feel completely useless – even tiny things take forever to do and I can’t deal with any complex ideas, or follow conversations.
I have cold hands and feet, but I always have done. My circulation doesn’t seem great but I don’t know if this is relevant at all. Parts of my body seem to go numb very easily but it’s usually related to my body position in some way – they don’t just go numb completely randomly when there is no pressure on them. I often wake up because of numbness and tingling – my feet especially get very tingly/I get a crawling feeling. I feel clumsy and wobbly and crash into things and drop things a bit more than I used to – but again I don’t know if this is relevant or not or if it’s because of MS. I’m not getting any extreme pain, or muscle stiffness or anything that screams serious physical illness in that sense, it’s just that so much is obviously wrong and I’m debilitated and stuck and feel powerless. I just feel like I’ve lost all autonomy and lost myself.
The main aspect of your post is how clearly you describe your feelings.
I get it that you feel agitated and restless but with no sense of purpose or direction. You’ve got an energy but with no way of channelling it.
Why do you feel isolated? Is it a emotional or geographical loneliness? You say you can’t deal with any complex ideas but what you are describing is a very complicated concept. Although I understand what you are saying I can’t put it into words either.
What made you ask about your problems on this MS Forum? Like Carole I don’t see any typical signs of MS but you must have had a reason. Separating your mental health issues from your physical ones seems to be your priority.
Wow, you’ve got a hell of a job, sorting out mental health issues from neurological ones.
And your GP will probably have similar difficulties.
But, as Carole said, your first step is to see the GP, try to get a longer than usual appointment, so you have the time to go through everything.
If you can write a brief list of all your current symptoms that you think either are, or might be, connected and ask for help in sorting them out.
You could ask the GP whether they think referral to a neurologist might be useful. I wouldn’t say that you suspect it could be MS or anything else specific. But just that you feel some of the problems might have a neurological cause rather than all being the result of mental health.
Thank you everyone for being so patient and supportive.
I guess it was the extreme fatigue that made me wonder about MS. I’ve feel like I’ve barely been able to move for the past fortnight. This stuff is turning me into a bit of a hypochondriac though, looking for other answers, I guess! When you have so many questions that are unanswered you do get a bit like that.
Maybe it’s more about the fact that I’m desperately trying to find a label that will help me get taken seriously because I can’t function and I hate feeling useless, letting everyone down, being judged and not being able to live my life, and in a backwards kind of way I’m subconsciously hoping it’s something physical so there’s less discrimination and more treatment options!
I did try and get referred to a neurologist but even getting out is so hard on my own, and I was basically turned away on the spot because I have mental health problems (which according to one specific locum GP appeared to mean nothing I say is to be believed). I should have complained, but I just feel so fed up and trodden down with it all.