Last reply 6 years ago
What's happening to me?

Until I get to see a MS Nurse (I’ve slipped off the radar for 3 yrs and haven’t seen one yet)I wondered if you can advise me? For the last 3 days by the time it gets to 1.00pm I am shattered. I have to go to bed and sleep. I did today for an hour then went with husband and 8 yr old son to park. Found it so difficult to walk, could have wept with frustration/guilt at not being able to do the things I did when the 17 and 14 yr old were younger. I was only out for an hour and I feel shattered again.
I don’t know what a relapse entails, I have S.P, does it mean I have just progressed and I not going to go back to how I was last week? I would be grateful for any advice/explanations. x

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6 years ago

Min, pseudo-exacerbations can be caused by run-of-the-mill infections. Pick one up and your immune system goes into action, but interferes with your MS as well.
So, any temperature or other signs of infection? A UTI is a common culprit.
It would also be useful to catch up with your MS Nurse.

6 years ago

Thanks Stumbler 🙂 It was you wasn’t it who gave me the contact details of Stephanie Verry? I did e-mail last year but no response 🙁 So, I phoned Elm Grove 3 weeks ago. Spoke to a lovely nurse who said she would contact Lewes and get a nurse to see/phone me. She said I should have been referred on diagnosis 3 yrs ago. Meanwhile …..
Thanks for your help tho 🙂

6 years ago

min, i have managed a lot of my fatigue/confusion/depression with a very good glycemic diet. my mum was diabetic and suffered a lot of similar problems due to her blood sugar levels. our nervous system has been compromised by damage so will be even more sensitive to low blood sugar. try high protein low sugar snacks very regularly. it helps me. it usually takes me until 1 pm to come round usually after 3 small meals, until then i am weepy and shaky and tired. just a suggestion hope it might help. also re uti’s i’ve bought urine analysis strips off the internet so i can check regularly for leukocytes or blood in my urine as i can’t feel the warning signs, just feel ill

6 years ago

hi i have ppms it sucks big time not doing what did do my hands shacking legs jumping about face twitch not of it is good. you feel trapped inside your self we all have diffrent ways to get along with what we have been delt. what works for one does not work for another. i have found that workin out the best i can helps and when my legs go sit down for a bit and try again i dont do anything if i dont push my self you will know how much to push your self. hope it helps any way it can.

6 years ago

Thanks all of you for the advice, I will review my diet (have been vegetarian for 20yrs)but still eat a lot of rubbish. Also take more notice of the signs of when I am going to “crash” and don’t push myself. I think it may be a good idea to start saying no to people when they presume I will do something when they could do it themselves.

6 years ago

You have hit what is called FATIGUE… of the major symptoms of MS. What you feel is normal for folks on here. I do one big thing (and thats only from my point of view…going to town or going swimming for an hour) then I’m whacked. I am bushed by 2.00pm. Need to sleep every day in afternoon or whammo…..can’t finish my sentences and brain has gone bye-bye!
THIS IS NOT UNUSUAL. Frustrating yes, and annoying but you have to learn to live with your limits.
Having said that…….see your GP. NOW. Some of the symptoms are very similar to under-active thyroid. They can test for that with simple blood test and fix it with small tablet every day. Go to yr GP, get checked out. Ask to be referred to MS nurse. Don’t suffer alone.

6 years ago

I too have exactly the same fatigue symtons. They suck and its so much worse than just ‘feeling’ tired! My symptons seriously affects my ability to walk and talk. I sound and look drunk! I too hit about 3pm and I have to have a nap, even if its for 20 minutes, I can function again afterwards!

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