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Sunday, December 29, 2013

My skin hurts!!!!!! Allodynia!

"My skin hurts!" I say this often. It's hard to describe what I mean by this statement. I try to equate it to an open blister that gets brushed up against something. Yeah that feeling. A raw, irritated, open blister, sun burnt like a cheese grater just went across the skin feeling. Even with that being said, doesn't really fully explain the feeling.
Hurts to wear clothes. The slightest, sweetest touch from my husband can be excruciating. I can only tolerate a massage for about 15-20 minutes. Longer than that, it hurts like hell.
Well, there is actually a name for this. Allodyina. According to the Merriam-Webster defines it as:  pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain. Sweet! I am not crazy! This thing is real. Now of course there are different types. I am not going to go into that but if you are interested, check out this link on Wikipedia. Also, I found a great article on the differences between Hyperalgesia and Allodyina here...
Can I just say, my skin, at times, start to hurt with a roomful of people talking. The more noise, the worse I feel. I'm sure anxiety plays a big part but being in a roomful of people sometimes makes my skin ache and burn!

Jenn

Friday, December 27, 2013

Brain mistakes pain and pleasure messages....

Interesting study just released I. November . Fibromyalgia brains misreads pain and pleasure signals. Read here... You may need a Medscape  nurse account. It's free and easy to do. I get emails from Medscape Nurse containing great articles on Fibro, MS, Lupus and Depression. Check it out!

Wednesday, December 25, 2013

Merry Christmas!!!!

Hoping all for a pain free, fatigue free, weird sensation feeling free, vertigo free, diarrhea free, muscle ache/spasm free MERRY CHRISTMAS!!!

Monday, December 23, 2013

A difficult Christmas...

I love Christmas. It is my favorite time of year. But this year has been a difficult one. I lost my father on January 7 of this year. Truly a wonderful man. I miss him every day. He loved Christmas. I think that is why he waited until after the first of January to go to heaven. He didn't want to ruin the holidays.
He loved the fact that his girls and grandkids were celebrating together. He would just sit in his chair and smile. Loved to watch his grandkids open presents. He would also make stromboli every year. No one can make it like him. 
So, this Christmas is without him. I know that he will be with us in spirt but it is not the same. His chair will be empty. The wonderful smell of his stromboli will not be in the air. There will be an emptiness in our hearts. I miss my dad so.
I know he is in heaven looking down. I can hear him say "it's ok, I'm ok. Please don't cry for me. Enjoy your Christmas". 
Merry Christmas to all!!

Tuesday, December 3, 2013

Let's talk about sex and demyelinating disease!

**Please note that I will be honest about Sex and this is not intended to offend anyone but hopefully 
 may relate to what you experience**

SEX! Yes, I said it and I will say it again SEX!! This is such a hush hush topic. We tend to keep this to ourselves. Avoid talking about it to your partner or physician. But why?? This is a very important aspect of life, love and marriage. But when you have a demyelinating disease and severe fatigue, the conversation with your partner or physician gets even more quieter. Let me break it down for you...

  1. Fatigue: I have severe fatigue. I can barely have energy to wash dishes, how the hell am I going to have sex? I have to rest up. I cannot have sex in the morning because it would then zap all my energy I have for the rest of the day. By nighttime, I am too tired from the day that all I want to do is snuggle down in my bed. 
  2. Sensation: The sensation is not the same. I have numbness at my "lady parts". What used to turn me on, no longer works. Sometimes the touch of my husband's hand is painful or irritating. Orgasums are few and far between. I am left frustrated, annoyed and wondering what is the point of having sex.
  3. Incontinence: I'll say it...one time after sex, I stood up and urine just started streaming out. I had no idea, no feeling, nothing. The dogs were looking at me like "hey, we get into trouble for peeing on the carpet"!Also,  I am afraid that I will leak during sex. Which is so embarrassing! I have to make sure I empty my bladder before sex but that really doesn't mean anything because sometimes I cannot completely empty my bladder. 
  4. Muscle Spasms: Back, legs, arms, neck, feet! Gesh! I am feeling like crap because of the spasms so why would I want to have sex. And sometimes, I will get a spasm during sex. Here my husband is thinking he is doing a great job and I am saying "GET OFF OF ME! BACK SPASM!". 
  5. Joint Pain and Weakness: These 2 things make certain positions impossible. Being on top, nope, weakness in my arms and joint pain in my knees kick in. Then Tremors in my arms and legs worsen. Being on the bottom...well this may be better but my legs feel weighted after awhile. But then you have to worry about back spasms because you have extra weight from your spouse and you are moving around. 
  6. Uhthoff's Syndrome Worsens: Yep, it does! Residual optic neuritis symptoms come back. Tremors kick in. Body temp rises, so now you are hot. You can barely lift your arms and legs because they are so heavy. Feels like you are having an exacerbation! You have to lay there and wait until it passes.
  7. Vertigo: I have some vertigo. Not too bad. But sometimes during and after sex, the room feels like it is spinning. I just have to lay and pray that it passes!
  8. Humor: Keep in mind that you have to keep your sense of humor. You have too. Why be hard on yourself? Life with this disease is already difficult....laugh!
So, after all the aforementioned above, I do ask myself A LOT "really, what is the point of even having sex?" But then I think, I need affection, closeness and love. I need to know that my husband still wants me even though I am sick. I need to know that my husband still finds me attractive. I need to let my husband know that I still want him. 
On a positive note, sex releases endorphins that ease pain and depression! At least that is what my husband always tries to tell me!