Day to day coping

[Kal07]

Does anyone have any specific suggestions for dealing with the pain and parathesias? Rest, don;t exert yourself too much, etc are pretty nonspecific. Are there suggestions for how to find comfy clothes? Do tight garments work better than loose? Is there a good way to pace your day? Do we really have to just live with this discomfort and get on with it?

[Udkas]

Hi there,

I think everybody has given you fantastic advice.  The biggest life change I have done is not to be so fussy around the house.  I am thinking of adopting the motto "A clean house is the sign of a wasted life".  My house is clean but I am not as fussy as I used to be, I try and pace myself and not do everything on the one day, I am sure if my house is a bit of mess is not going to hurt anyone, I am trying now to delegate some work to my teenagers as well but my teenagers are typical teenagers and not so helpful!   I try and do my work in the mornings I seem to get tired by afternoon, especially if it's hot.

Pain is one of my primary symptoms and  I use Gabapentin (Neurontin) for that and find it helps.  If the clothing and the Gabapentin doesn't work I try diversion tactics and treat myself to some "me time" and indulge in something I love doing like brushing the horse, even riding the horse but sometimes this makes my sx worse, listening to some music and curling up with a good book, visiting friends, it seems to help, I think it takes the focus off the pain.  I am trying Lulu suggestion of massage next week as I feel that stiff at the moment I thought it might help me walk better...

Pain can be so debilitating and often it is what a call a silent symptom as pain and burning, pins and needles etc. can not often be seen by anyone else but it is a real symptom and problem.

Best wishes, I do hope you get some relief.

Cheers Udkas.

[Sailorsong]

I have been dealing with these issues for over 20 years now. Like other have said it is a matter of figuring out what works for you.

For me some days I just can't stand the touch of clothing on some parts of my body (usually my legs). On those days I make sure I don't wear clothes that will touch those parts of my body. Other days just very loose clothing witll do the trick. I have also found over the years that I need to do things that require clearity of my mind are best done in the morning. So I pay my bills and schedule doctor appointment for mornings.

For pain I have found that if I concentrate on the pain I can to an extent minimize how much pain I feel. I think this works by overloading my mind with the pain so that it blocks it out. This doesn't always work but most of the time it does.

I usually have to lay down for a while every afternoon so I schedule my shopping for right afterwards as I am more rested then so can handle the walking required during that time.

Dennis

[sllowe]

Hi Kal,

Adding on a welcome!

How long you been dealing with this?  I've only been dx'd since 07, but have been through a lot in the past couple yrs.  I've found that time itself has given me my best coping techniques.  Meaning, as time goes on, I just keep trying something else to see if it works. Gosh, I'm still being vague, so I'll try an example...

During my 1st attack I found through time I had to stay away from stimuli, which included people, places and conversations and caffeine,etc.  I only had 2 cups a day, but everything tweaked out my nervous system and made me worse.  So, time taught me to steer clear.  

Everything aggrevated my parathesias when it was at it's worse.  Sitting positions, the bed, clothes, you name it. So, over time I learned I couldn't sit in one spot, or stand for long.  Had to keep moving.

I gradually was able to incorporate some things back into my life, thank goodness.  That's just one example.  But, sharing it with you and hope it helps you to keep trying different things until you find some relief.  And, like said above, there are some meds to help with the biggest issues  - ones coping mechanisms just won't touch!

Thank you for joining us.

-see you around,
shell

[essdipity]

I agree with Lulu that the best treatment is whatever works for you. This requires lots of experimentation, as she says.

Painful paresthesias, though, can be medicated, and many of us here are helped by Neurontin or Lyrica. Please talk to your doctor about this. Why suffer unnecessarily?

Best wishes,

es

[Lulu54]

Hi Kal,
Welcome to the MS forum here at MedHelp - I don't think we have crossed paths yet.  This is a great place to hang out and ask questions, vent and even laugh on ocassion.  I hope you will find something here useful for you.

Its been a very quiet week around here - I suspect because of the holidays.  So let me give a shot at answering your question -

I would begin by making a mental note or even writing down your day's schedule.  When you experience fatigue, when you are mentally zapped, and even when you experience pain and the parathesias may fit into an obvious pattern.  If there is a pattern that is apparent, you can then try to structure your day's activities around that.  If you know you are tired in the afternoon, for example, schedule less strenuous things or even a rest time for then.

I personally have found that exercise through Tai Chi has been very beneficial - this is a gentle stretching exercise that helps to channel my energy.  If you are able , I would heartily recommend a class.  Same with swimming- it is great for the body and helps to quiet those noisy connections in our muscles and nerves.  

If you are able financially, you may want to cultivate a good relationship with a massage therapist or accupuncturist.  Both of these complimentary alternative medicines are excellent for us MS patients.  Unfortunately most insurance companies don't cover the cost.  

Some people cannot stand to have any clothes around them andthe touch of the clothe irritates their nerves.  Other people have no problem at all, so I think there is no single answer to your question about clothhing.

No, you should not have to live with the discomfort.  Please discuss your pain and parathesias with your neurologist.  If necessary, request a referral to a pain specialist doctor.  Don't accept that you have to live with pain until you have exhausted all possibilities, ok?

Yes, we do have to get on with it, but we want to do it in the best ways possible.  

Again, welcome to our special community.  I hope to see you around.

my best,
Lulu