Last reply 2 years ago
Fatigue – What is your experience?

Hello MS community,

I’ve had my first relapse since diagnosis last September and was generally on the symptom Merry-Go-Around (numbness, tingling, balance, weakness, Lhermitte’s) over the last 6 weeks or so. As disheartening as these were, my main problem really were fatigue and the state of despair I was in. I wondered about two things:

1. Do any of you experience weeks and weeks of pretty much back to back tiredness that makes daily life almost impossible? My MS nurse said that rather than several weeks at the time most MSers experience extreme fatigue following exhaustion and/or at certain times of the day rather than my pattern above. Hence, I hope this may have been a case of ‘not coping’ with the still new-ish diagnosis and the first physical symptoms rather than the dreaded MS fatigue?

2. Relatedly, what are your experiences with mental health problems, particularly when you have relapse? My mood spiralled downhill very quickly but I put it down to the level of exhaustion I was experiencing. Coming out the other side of it, I am now wondering what is the hen and what is the egg – i.e. mental health dragged down by fatigue or fatigue a symptom/side effect of not coping?

Any pointers would be helpful 🙂

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2 years ago

I have never really read where fatigue is a certain time of day. MSer’s write about being fatigued for weeks or months at a time. How long has your MS nurse been a nurse, my doctor is always getting new help and they are usually a newly graduated nurse. They don’t know anything yet, every time I ask a question they have to ask someone else. You sound like you are depressed, are you on any DMT, a lot of DMT’s can cause depression. Every time I refilled my Rebif prescription they would go over depression symptoms with me to just make sure I wasn’t suffering from depression. Try to get a appointment to talk to your neuro. Potter

2 years ago

Dear @thoughtfultraveller

I am sorry to hear you feel so badly….I doubt even an MS nurse would be able to sort out which causes which i.e. it is indeed a chicken and egg situation. However, I think it is worth resting up if you are exhausted. It is probably hard to break the cycle, but a day in bed with a good video, lots of fresh food and hot drinks at this time of year can work wonders.

It is also possible our symptoms get worse during the winter season when sunlight is scarce. I am going through a phase of exhaustion/fatigue, whatever it is to be called(!), so I use earplugs at night and have moved into the spare room until it passes. It has gone on for so long, that I’m not sure if this is the new low, or a bad patch from which I will recover.

Mental-health wise, I am teary in the morning time, but loathe to go on anti-ds just yet. For me the situation needs to change, rather than me taking something like anti-ds…but if I followed this logic I would have to find a cure for MS, as I wouldn’t take any drugs (I would if offered them!).

Take care, lucyh xx

2 years ago

Hi @potter & @lucyh,

thanks both for your input. I’ve read a bit more on fatigue (sometimes so tired I can’t seem to think about suitable key words to search for information) and it seems much of the fatigue unfortunately is a sustained pattern and the main killer of MSers work and social life.

I seem to particularly have dips in mood a couple of times in the afternoon, always at the same time when also my tiredness kicks in particularly badly.

@potter, I’m not yet on DMTs but will probably be eligible after this current episode. Luckily my follow-up (2nd) MRI scan was only a couple of weeks ago, with a follow-up Neuro appointment later in January. So whatever damage happened recently should be caught there.

And yes, I guess I have depressive symptoms. I have the best GP ever and when I had a melt down in her office last week Monday she forced a 2 week sick note on me, which very quickly made a massive difference to my wellbeing. So am relaxing, playing with the cat and doing some bits and bobs along with seeing friends for coffee 🙂

My major worry really is whether and for how long and how much I will be able to work. And in that department, I can live with lots of the physical impairments but if my mind goes, then I’m kinda stuffed….

2 years ago

Relapses are ghastly not only because you feel awful but (certainly in my experience) soon have you in the pits of despair. I would say that it’s maybe not the time to be analysing this and that, because relapse symptoms and symptom recovery are not predictable. Better now to be focusing on getting over this flare up, but once you’ve recovered perhaps consider: a) asking the neuro/nurses if you should be changing treatment b) if the low mood continues once your body feels better, why not go on anti-depressants? Nothing to be ashamed of and if it gets you motivated to exercise and keep to a healthy regime, it could be the best thing for the MS – which, as we’re constantly told, needs us to live well. c) There are meds for fatigue. As long as I have equilibrium in my everyday life, my MS is quiet, but it doesn’t take much to set things off: late nights, colds, anxiety, insomnia, long flights and extremes of temperature are the main culprits for me. I’m sure you’ll come to identify what is and what is not good for your MS – but it can take quite a time. We’re complicated!

2 years ago

Dear @cameron, I don’t mean to take over the thread of this conversation, but would you really recommend anti-ds? I was on them before, when I was told the MS was actually depression and I was laughing hysterically all the time…I would like to feel more ‘up’, but I still want to be ‘me’ if you know what I mean.

Work is being, in my opinion, a little unsupportive and I am still busy, even when off sick from work. I feel this should be addressed rather than taking something so work can, for example, continue to be an a$$!!

Advice would be great (hilarious, as I came on line to support others, and it’s me looking for it!) Take care, lucyh xx

2 years ago

@lucyh, I don’t think anyone likes taking tablets but I’m on amitriptyline which is both an antidepressant and nerve pain drug, so a double whammy for MS! I have definite (mild) mental issues, all of which I am sure are a result of MS. Fine most of the time, then whenever I get a worry, it tends to eclipse everything else and becomes chronic anxiety. In this state, I lose rationality – I believe it’s called catastrophising. Unchecked, this would be a life-wrecker. My GP was great – she told me that everyone diagnosed with any long-term condition experiences a change in their mental state. In other words, I’m not unusual in any way! Just hearing this did me a lot of good and it helped me to accept that anti-d’s are – sadly – part of the course, for me at any rate. The standard dose for mild to medium depression is 5mg daily – I’m on 3mg, but I’ve been told I can up this to 5mg if necessary. Easy!

2 years ago

Thanks so much for that @cameron…it makes so much sense. The amount you are on is 10 to almost 20 times less than the amount I was initially prescribed when my MS symptoms were considered to be depression….I was taking Amitripyline, but it made me very tired. I might try again on that super-low dose (well, what I would view as a super-low dose :-)) Best wishes to you!

2 years ago

@lucyh The dose you quote seems ridiculously high! My GP told me that the 5mg dose is so widely prescribed that there’s a 5mg tablet – very convenient. My lower dose is in single 1mg tabs. She has assured me that it’s very safe long-term at this dosage. I had an episode of anxiety last year and the GP upped me to 5mg, telling me to experiment with dosage till my mood lifted. I started taking one extra, then two extra at night. After a couple of weeks I got the dose back to 3mg. So it’s quite versatile – provided you have a sympathetic GP! Best of luck. xx

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