Bad Fatigue getting worse

Symptoms and treatments
1

Hi, I’ve been having really bad fatigue of late. Like usually I’ll have one day like this once every 3-6 months when I have to take the day off work and just lay in bed and do nothing (I can’t sleep because I’m in too much pain and it affects my breathing). But since the start of March, around 50% of days have been like this. I’m going round the twist. I don’t know whether I’m coming or going or what I can do about it. I’ve just stopped my neuropathic pain killers (Pregabalin) and wondered whether that had anything to do with it, but from what I’ve read online, if anything, being off them should make it better not worse (unless other people have had a different experience?). I don’t know how long I’m going to be able to keep working for being like this. I’m only managing to keep going atm because I’m working from home and the job is really not very demanding, but I cannot rely on that. What are people’s experiences / suggestions? Thanks,

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Hi @Comet

I think if I was you I would flag this up with my MS nurse. It sounds debilitating.

My MS nurse referred me to the occupational therapist for fatigue management. I haven’t had the appointment yet but hopefully it will help. There’s also a free fatigue management course on the MS Society website I think.

Wishing you well,

Alison

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Hey Comet, really sorry you’re dealing with this—it sounds exhausting and frustrating, especially with how much it’s increased recently.

From what you described, it could be linked to stopping Pregabalin. Even though some people feel better off it, others do report a sort of rebound effect—like increased pain, poor sleep, and fatigue—while their body adjusts. That adjustment period can last a few weeks (sometimes longer), so it might be worth considering the timing of when your symptoms worsened.

A few things that might help or are worth discussing with your doctor:

  • Medication changes – even if stopping was the right call, sometimes tapering more slowly or switching meds helps.

  • Sleep quality – even if you’re lying down, pain can stop proper rest, which makes fatigue spiral.

  • Breathing issues – since you mentioned it affects your breathing, definitely flag that specifically to a doctor.

  • Blood work – checking things like iron levels, B12, thyroid, etc., can rule out other causes.

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Most importantly, don’t just push through this—if it’s affecting your ability to function and work, that’s a sign something needs proper medical attention. You’re not overreacting.

Hope things ease up for you soon—keep us posted.

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Thanks Alison,

I’m currently being assessed for cancer as well, so it’s possible it’s not even down to the MS. But I’ll definitely flag it to the MS nurses, see what they say.

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Thanks Maureen,

I tried coming off the Pregabalin previously unsuccessfully and then I tried again tapering off more slowly this time, at just 25mg drops every 2 weeks. So I’d hope that was slow enough. I’ve had a load of blood tests to see if there’s any other causes like thyroid or diabetes but they’re all normal. My GP wants me to wait until I’ve seen the specialist about the possible cancer dx incase it’s related to that before rushing back on to the Pregabalin. I’m just so exhausted and struggling to function though.

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Oh blimey, that’s a lot to cope with. I hope you get the all clear.

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Thanks Inp8acr,

I have a haematology and a Medical Oncology appointment this coming Monday so we’ll see what they say. My neurologist has also ordered an MRI to see if there’s anything going on from the MS perspective that may be causing the increase in fatigue. So it’s tests tests tests atm.