angieh 02/12/17
Last reply 4 months ago
Getting tired fast

Hi all! So I had a flare up (first major one in 20 years) this past summer. Mainly consisted of fatigue like I had never known! I did not bounce back quick it took about 12 weeks or so. Dr at Johns Hopkins said it’s as close to ‘benign ms’ as can be and at this time didn’t recommend medication. I’m struggling ever since. I can’t do anything for more than two hours without needing to lay down. I know when it’s coming because I start getting dizzy and everything feels heavy.i just turned 50 but c’mon I feel I should have more stamina. Does anyone have any recommendations for improving my energy, this is not how I want to be I work full time and it is a struggle I want to make it to retirement and still have some energy.

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vixen
4 months ago

Hello there! Speaking as somebody the same age, I had my first ever episode Summer 2016. Got diagnosed with RRMS this Spring. I would say it probably took my body four months to recover from this episode and then probably another three or four months recovery. In all that time I managed to keep Woking, just. But the quality of life was pretty low; exhausted all the time, the entire weekend spent resting. It was such a shock. One thing I had to accept though, is that no matter how fit I though I was, there is a difference between having an episode I your twenties, and one at the age of 50. Our bodies accommodate things differently when we are younger. It sound harsh, but the best thing is to take each day at a time and work on little things without looking at how you want to be in say a month or two. You know that old saying ‘a thousand mile journey starts with just one step’ and that’s true. One year on, I accept I’m not, and am not going to be, what I used to be. but, my husband is 52, his hearing is going in one ear and heel problems mean he struggles to walk long distances. Both of us spend time talking and thinking not so much about what retirement might look like, but what we want the next 5 years to look like. Retirement will come, as might great treatments and medications, but we just don’t know. You will feel better, and hopefully recover as fully as possible. It’s just that it might take a little while. I’m still working full time, but having gone through so much of a process in the last year, I’ve decided I don’t really want to work full time much longer. Not that I can’t, but that I choose to make life a little easier. Keep your spirits up, there’s lots of support here, so keep posting! X


stumbler
4 months ago

@angieh , were you given another MRI scan to confirm any new MS activity and this view of “benign MS”?

Also, have you be checked for any other infections, e.g. a UTI, which can cause a “pseudo-exacerbation”?


angieh
4 months ago

At the time of the flare up about 5 months ago I had MRI of head which showed active lesion. I also had MRI of CSP which showed lesions non active though. The agreement was to have MRI annually.
Other infections I don’t know. I was afraid to get a flu shot but I did. I wondered if that caused anything. Also I must say I like wine and have at least a glass daily but it wipes me out any more. I want to exercise but that wipes me out too. My husband is 10 years younger than me, very active and fit and he needs some education on this, sometimes I don’t think he really gets it.


stumbler
4 months ago

@angieh , the MRI would seem to be a bit conclusive that your MS has progressed a bit. So, this fatigue could be a new symptom for you.

There may be something in this publication that may help:-

https://support.mstrust.org.uk/file/living-with-fatigue.pdf

It would be wise to check with your Doctor that you’re clear of other infections, e.g. bloods and urine. Any infection can make our MS symptoms be exaggerated.

The flu jab should not cause any problems. It’s offered to too many people to be a potential problem.

Hmmm, a spouse that doesn’t get MS! There’s a lot of them about!


rachaellouise
4 months ago

@angieh

I know the fatigue it’s feeling exhausted constantly it’s another level to tiredness . And I get the dizziness a lot and need to sit down , sometimes I push through it and I always feel more dizzy . So probably not a good move . Listen to your body I’m told ! I Don’t always listen to it😚
I sometimes feel like why am I feeling so crap , dizzy and exhausted at 35 . I think surely it’s just not right . Anyway it is what it is .. It’s not fair . Hopefully it will improve for both us and others .

Also @stumbler just want to say that how can our other halves understand , they don’t know what it’s like .. And I understand that because they haven’t got ms but at the same time it can get frustrating . I think they can be more empathic but that’s not always forthcoming … ! And sometimes I feel they have a sensitivity chip missing … But then their not in our position and at times I know I’m descriptive but I feel I’m in hell ! Lol❤️

I’m on iPhone a lot so hard to write loads . Not at pc a lot .

Rachael xx😊


stumbler
4 months ago

@rachaellouise and others, the following post will allow your partners to understand the symptoms that you experience:-

Describing your MS Symptoms


edmontonalberta
4 months ago

@angieh

20 years with MS; you raised a daughter & lived life. Congratulations!

Life is a journey & we all know the destination. Have fun no matter how many more years we have… 😉


angieh
4 months ago

Ok, I am dizzy. I did not sleep very good and this may be why I feel so tired and dizzy today. Anyway, I have called and I have lab orders for blood work and urinalysis just to check for infection….I am working full time and it is a struggle each hour to decide on whether or not to go home. I just feel I need to lay down, this is the only thing that helps. I have try to save some energy for driving. Anyway, this was just an update. I really feel that maybe at this point, I need to make more accommodations for myself, I feel this symptom will never go away. Not sure if this means adjusting sleep hours, work hours (these aren’t up to me), sleep environment. I don’t know how to deal with this, I have never been robbed of energy like this, I’m starting to get depressed. I’m venting. Any advise or support helps! Stay tuned.


stumbler
4 months ago

@angieh , let’s hope the blood tests and urine analysis show up something to address.

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