I’m fairly new to all this, I’ve only been diagnosed since June 2022 and this is my first time here.
The support I’ve had from the MS team and my family has been beyond wonderful and I’m grateful to have so many people around me trying to support me but I think I needed to speak to other people living with it
The thing I’m struggling most with is pain, ongoing pretty much my entire body is hurting almost constantly at the moment. I don’t think the cold weather is helping as it’s got worse since the temperature dropped but its so exhausting! Painkillers don’t do anything, yoga helps me take the edge off but it doesn’t go away. I have some adaptations at work but I cant seem to sit or stand comfortably in any position - does anyone know any other ways I can try manage it?
It’s not to the point I’m immobile again thankfully so I can still move about but it’s starting to get me quite down that even with all these things in place I can’t seem to shake the constant aching. My limbs feel like they’re made of lead.
I’ve accepted that I need to stop running at 300mph like I usually do and rest often which in itself is a struggle for me but this pain just seems to linger, I guess I’m hoping all the experience in the room may have some better ideas than mine!
Sorry for the essay but I needed to get it off my chest!x
Everyone’s experience of pain is different and that goes for MS-related pain too, but I have to say that the whole-body, chronic pain you describe is quite unlike my experience of 20+ years of RRMS. I have had acute relapses causing particular local pain,and damage from old relapses that cause residual, local and specific pain either constant or from time to time when I’m overheated or over-tired or whatever. But I’m talking a patch on my neck, a patch on my torso, both legs, worse lower down - that sort of thing. Not general and generalised pain.
How sure are you that it the MS causing it? Other ailments are available, and having MS does make us immune to any of them, alas.
Hi Alison,
Thanks so much for replying, I really appreciate someone else’s input on it!
To be honest I had considered that myself, the pain has been going on since before my diagnosis so when they told me about the fatigue and pain as possible symptoms I kind of just attributed it to that? It comes and goes but this week its come back with a vengeance!
I wonder if it is something else though, it’s a sort of aching pain so sometimes wonder if it’s just from over exerting myself?
Hi I get terrible nerve pain which is sometimes my whole body, certain foods make my symptoms worse like sugar, food additives, I know everyone is different but might be worth cutting certain foods out your diet, hope you manage to find something to help you
Hi, I was diagnosed November '22 and have similar questions. I don’t have any answers but you are not alone. We all seem to be different but I’ve been told the feeling of ants crawling on you, pins and needles and a burning sensation are likely to be nerve pain. I feel achy a lot too but not sure is that’s MS or my body reacting to it.
Hi all
Thanks again for responding. I get the nerve pain on and off in various places mostly pins and needles or numbess but this is more of an ache - like I’ve run a marathon or been hit by a car. What’s odd is that it’s not consistent, I can do virtually the same day twice in a row (in terms of business and movement etc) and one day ill be fine the next not! Can’t seem to gauge a pattern to it…
I think I know what you mean, I’ve often described my aches as “I feel like I’ve run a marathon” haha. Like you, one day I can do something and another day I can’t, and the not finding any position consistently comfortable etc definitely!
For me it’s an overwhelming tiredness and aching everywhere that hits in waves but is always somewhat present, and sudden random pains anywhere on the body that flash and fade.
Nerve pain feels different is all I can say
My Dr is considering fibromyalgia now… maybe raise that with your Dr? One of the drs I spoke to said not all drs believe in it so don’t think of it as a possibility.
Sorry you are having a hard time
you’re not alone your pain family understands xx
