Please read this, I really need some reassurance that what I'm experiencing is normal.

New diagnosis and before diagnosis
1

I’m not yet diagnosed, still under investigation.

Symptoms (began nearly 3 years ago and have become progressively worse, some newer than others):

Fatigue, widespread muscle twitches, bowel urgency and urinary issues, tingling/unusual cold sensations which creep down my back and forearms, headaches/eye pain/blurring, tingling/intense burning on soles of feet.

Today my partner and I decided that after all the Christmas and New Year indulgence it would be a good idea to get some fresh air and go for a walk. We live on the east coast of Scotland only 100 metres from the beach so we walked along the coastal path and back again which was approx 4 miles. During the walk itself I was a bit out of breath but nothing unusual or worrying.

When we got home I sat down with a nice cuppa for about half an hour before going to make a start on tea. However, my muscles ached so badly I could barely stand. My movement was slow and even the muscles in my arms, hands, chest and face (yes, FACE!?) were aching. Now I know that you do use your arms when walking but not to the extent where they would ache so badly that you couldn’t lift an empty pot or chop vegetables without wincing. And I’m certain the muscles in your face wouldn’t be overly used either (although they were used quite a bit when my husband nearly fell flat on his face in the mud and I was doubled over laughing).

I’ve tried to get some sleep in the hope the rest would ease the aching but I can’t get to sleep because of the aching! GGRRR!!!

Is it common in MS or an MS like condition for the muscles to be affected in this way? The aching just seems too extreme for a light walk.

2

Hi there - no, I don’t think that’s normal but if you’re under investigation already you should add it to your list of symptoms to tell the neurologist next time - keep a bit of a diary of these things and summarise them when asked how you’ve been. How far along investigation are you? What’s been found/said so far? I’m afraid I don’t have very much advice but someone else may come along in a while and be more helpful!

Deb

3

I don’t think I’ve ever found a 4 mile walk “light”, even when I was very fit (I’ve never liked walking!), but the after effects you describe are certainly not normal in healthy people. What condition they point to I don’t know, but there is something at the back of my mind about exercise exacerbating fibromyalgia and that’s associated with a lot of pain so maybe???

I’ve got MS and when I overdo things, I get muscle fatigue and weakness, but I don’t get bad muscle pain. I have no idea if I am typical of people with MS though - it might be me that’s the odd one out!

As Deb says, add it to the list to discuss with the neuro. Hopefully he/she will know what it means.

Karen x