Hi everybody. Well, I’m 2 months in to this current ‘episode’. I’ve had my appointment through for head, neck and spine MRIs which will be later this month. I am due to have a lumber puncture soon too. The sensation in my lower body has improved but seems to have plateaued, but the biggest problem I am having is tiredness. I was determined to carry on as normal while awaiting diagnosis but just doing normal chores around the house leaves me exhausted and irritable. I used to manage perfectly well on 6 hours sleep. Now I turn in at 9,.read for a while and am asleep by 10. I usually wake around 7, still tired but unable to go back to sleep… Partly due to a wide awake three year old, but even if my partner gets up with her I find anxiety kicks in and my mind is all over the place and I have to get up. In spite of getting 9+ hours a night, I usually find I need another couple if hours in the afternoon. I have been signed off work for two months while under investigation. I work at a GP surgery and only work 2 days a week, but I found my concentration was poor and by lunchtime I was so tired I couldn’t focus and became very frustrated and irritable. My short term memory seems to be affected too. Will this tiredness improve?? Does everybody with MS get it? And if so how on earth do any of you keep working? Any advice, or shared experiences would be much appreciated xxx
Hi I am not dx yet either. MRIs have shown one lesion on spinal cord and I have a clear LP. I do suffer from tiredness too but I find the more I rest/sleep the worse I feel. I was finding that the mornings that I went to the gym I felt so much better for the rest of the day. So much so that I go to the gym every morning now. I do 20 minutes on the cross trainer, 10 minutes on the vibro plate. Then I do core stomach exercises and leg/arm weights. Also I think due to core work my bowels are so so much better.
A lie in just wrecks me !
Hi Moyna. Thanks for your reply I did wonder if I was oversleeping but just can’t stay awake in the evenings and am up by 7 in the mornings. I try and stay as active as I can but get worn out very quickly. Do you work? Kaz xx
Kaz I’m suffering with this too. Feel exhausted and the more tired I get the more the symptoms worsen. I slept from around 11pm last night til my alarm went off at 8 to take my 3 year old to nursery. Yet I feel like I’ve hardly slept and I keep making mistakes in my typing (thank god for predictive text!) and my brain feels sluggish x
Hi Kit. Thank you for replying I’m sorry you’re suffering too. I’ve never known tiredness like it. Have you been diagnosed yet? Kaz xx
Not yet no. This is my 3rd relapse but MRI with 1st 2 was clear. Waiting on neuro appointment and MRI right now. The last episode though they basically said if I had another relapse they would diagnose MS. I feel in my gut that’s what it is x
Hi kaz, i’m not dx yet either. the exaustion is one of things i have had struggled with the most and is something that started quite a while before there was any suggestion of a neuro problem. Mine is partly due to a disturbed sleep pattern, i only sleep fo a couple of hours at a time, mostly due to twwitching and tremors that wake me up. Like you i have to go to bed by about 9 as I just can’t stay awake any longer and then will usually be awake at 3 or 4 in the morning and can’t go back to sleep. I started back at work on reduced hours yesterday after 6 weeks sick leave and I have to say it has completely floored me, I can hardly move this afternoon and by the time I finished work today I could barely stand. The awful thing is the extreme tiredness just aggrevates all the other symptoms so it’s a visious cycle. My GP has prescribed sleeping tablets which do help but i don’t take them every night as I don’t want to be dependent on them. I’m hoping working will become easier in time and i’m just going to try and push through for the time being, jusy hoping I can get some kind of diagnosis soon so I can start having some kind of treatment. xx
Bunny that’s the most frustrating thing isn’t it? We know there’s something wrong but we can’t get any treatment until we have a confirmed diagnosis.
Hi Kaz, yes I do work (systems analyst for computer company) and there is a gym right beside the office so I go early do 45/60 mins and am at my desk at 9:15 ish. Miss rusg hour traffic too. Thankfully my kids are old enough to get bus to school now. x
Kit, how far apart have your relapses been, and how have you been in between? Bunny, how long have you had the tiredness? Does it come and go? Moyna, that’s handy I’m glad you’ve found something that helps. Kaz xx
Hi Kaz, I would say that the tiredness (to a lesser degree) started about 5 years ago, remained at a plateu and then suddenly became much more severe after “a funny turn” ( possibly MS attack) mid May this year. It;s remained pretty bad since then also unpredictable as it does tend to come and go and can hit me all of a sudden, Unfortunately I can’t excercise very much as I also have degenerative disc disease. Hey ho the joys of life!
Between the 1st and 2nd was around 4 years. Between the 2nd and this one 2 years. In between I suffer with migraines. The pins and needles started about a month ago but the relapse in full started around 3 weeks ago.
Thank you both. The information all helps. I’ve been getting numbness, tingling and ‘buzzing’ episodes for about 7 years but they’ve never lasted long until now. This time it’s been two months so far. just over a year ago I had optic neuritis. Tiredness has been an issue for years. I always assumed it was depression. But the kind of weariness I’ve been experiencing for the last few months is the worst I’ve known. Kaz xxx
During a relapse, my fatigue is always at its worst. The only thing I can do is rest as much as possible and have a little rest after each task. My worst relapse was the one which led to diagnosis and I did need a sleep after my morning shower, again 2 hours later, again after lunch, etc etc.
There is no magic wand I’m afraid. If the fatigue is that bad, then in my opinion it’s because your body needs that rest to try and repair the damage. I’ve tried pushing through it and it just makes recovery take much longer.
My current relapse wasn’t so bad but I still find that every time I think I am getting over it and start to do a bit more then I will have a few bad days. I’m now starting to do some gentle exercise to stretch my legs and build up some stamina in them but I know it’s going to take several more weeks, possibly months, before I’m back to what is normal for me. I find yoga the most beneficial as I can go at my own pace and the relaxation techniques can be used at anytime if I am getting stressed.
Everyone’s MS is different and all you can do is listen to your body and through trial and error find what works for you. Once you have found something that works, then stick with it.
I had optic neuritis in my left eye with my 1st episode. It would appear I have had it in my right eye at some point since my last episode as I now have pale discs in both eyes. Feels like its still active now cos the right eye is painful x
Hi Kaz, I’m waiting for my first appt with the neuro. I started to suffer with the exhaustion about 2 1/2 years ago. It lasted about 7 months and I then had a break of about 4 months. It came back again for about 3 months. The next episode a few months later lasted about 5 months and this time it has lasted about 3 months so far. I’m not sure whether it has been a case of it has completely passed each time or just lessened enough that the tiredness becomes more manageable. Because no one else can see it you try to carry on as normal. All the other symptoms I have have sort of fitted in around the fatigue in various stages. This time has been the worst so far though. Thankfully it seems to be easing off for now. I am learning what my limits are and trying not to overdo it all. Just listen to your body. That was what I was advised and I would agree with it. It’s not always easy with children around but you find the easier way in the end.
Again, thank you all. Your input and advice is invaluable. Bunny, Tracey and Sharon, do you work? Xxxx
I haven’t worked for the last 2 years as my mum was diagnosed with bowel cancer and she had always been my childcare. I have 4 kids and we are in a very rural area, so it meant alot of cutbacks but alot of sense to give it up. In hindsight I think if I had still been working I would have found it very difficult as my balance and grip has become alot worse. Not good working in a kitchen!
Hi Kaz, yes I do. I am a manager of pension admin team and also do a lot of trainig presentations and recruitment and medical underwriting. Over the last 2 1/2 years I have had an awful lot of time off sick, 2 spinal operations in 2 years and now this. I am very lucky to have amazing employers who are supportive and understanding. I really love my job but have had to take the realistic view that certainly in the short term I can’t do my job properly anf long term, depending on dx outcomes etc I amy not be able to work at all. The things that affect my work most are the fatigue, balance and dizzyness problems and confusion and memoty loss. I came up with a list of alternative tasks I can do in the meantime and talked these through with my manager and HR rep. They were very happy for me to do thses in the meantime (mostly project work) and have delegated my staff to other managers for the time being. I simply cannot afford to lose my salary so a bit scared about the future but have to be optimistic that I will get some sort of diagnosis soon and that my company will continue to support me. I hate the fact that i’m kije this now though, i amjust not the same energetic and enthusiastic person i was a couple of years ago and i know my staff and colleagues can see this in me.
Thank you both so much for sharing. My employers have been amazingly supportive and in fact it was their alice that I take a couple of mont off. My concentrtion and memory Aww poor and the tiredness debilitating. If and when I get a diagnosis I have some big decisions to make. Kaz xx