ChatMS 1/18/2016

Hello all!

I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California.  I don't have any issues with that, so I couldn't relate to any of the questions.

If you are affected by cold weather, please tell me your story!  In my case, I only notice issues when it gets above 95.

This week's ChatMS is another one on symptomology.  Please feel free to cut/paste the questions to put on your own blog.  Keep the conversation going!

Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?

Abso-freaking-lutely.  I can't even count on both hands the number of great nights of sleep I have had in the last few years.  Being pregnant compounds this, for sure!

Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?

Insomnia is the big one.  Mostly, when I wake during the night, I can't fall back asleep.  I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.

Q3: What symptoms do you experience that disrupt your sleeping habits?

See above - but I also have frequent urination, heartburn, nausea, dizziness.  Leg cramps!!!!  Not all the time, and thank goodness not all at once.  But these issues rear their ugly head on occasion and good luck sleeping through that.

Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?

Absolutely.  I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes.  I do not believe it contributes to my MS fatigue, which is a beast in and of itself.

Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?

Oh, the fatigue.  The fatigue, fatigue, fatigue.  Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.

I have had depression and anxiety for many years - since I was a pre-teen.  Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed.  It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up.  MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up."  It is a can NOT.  I can NOT get out of bed.  I can NOT get off the couch.  I am stuck right where I am.

I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed.  The next day I could not get out of bed.  I nearly wet the bed because of this fatigue.  I was sitting on my couch and felt what can only be described as a heaviness.  I couldn't get up to eat.  I couldn't pick up my computer or my phone.  I just sat there, at the mercy of my cats.  Exhausted, but not tired - I didn't sleep all day.  And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.

Q6: Have you talked to your neuro about your sleeping habits?

Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.

Q7: Are you on any meds to help you have a good nights rest? Which ones?

Nope.

Q8: If you have extreme insomnia what do you do to help you fall asleep?

Flip my pillow over.  Get up and go to the bathroom, roll my husband over so he'll stop snoring.  Read something very boring.  Climax.  Deep breathing, in through the nose and out through the mouth.  Clench all my muscles in systematic patterns and release.  I have yet to find the perfect cure to insomnia but I keep trying!

Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?

Keep a log of when you get up; maybe there is a cycle to it.  I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM.  If I get up at 3 AM, it's usually because of my cat because that's HIS cycle.  It might not help you fall back asleep right away but it's relatively amusing!  And know you aren't alone.  Keep a bottle of water by the bed and practice good breathing techniques.