They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.
I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.
It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.
Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.
I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.
It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.
Here’s the thing, people are divided. It seems that all the same issues that have been going on for the last 60 plus years are still happening. We need to decide as a community what we are expecting the next generation of adults to be.
One person alone cannot make the changes needed, but each person working together as a group can. Do we want our children to be name calling, angry grown-ups? I don’t, I tell my kids to treat people how they want to be treated. Yet, you watch the news and people are trash talking politicians, celebrities, and people in general are doing the same thing on social media.
How can we as the parents of the next group of grown-ups expect them to be better than we show them. I try to keep the news off around my kids, yes I want them to be informed but they do not need to be subjected to constant negativity. In fact, I don’t either, I have numerous health issues that make staying positive hard enough without surrounding myself with all the negative talk.
Each person has basic human rights, they should be free to make choices for their own bodies and love who they want as long as those things are not hurting anyone. Nearly 100 years after women got the right to vote and we are still struggling for equality. Almost 60 years after Civil Rights marches and laws we still do not treat people of different races the same as everyone else. People are the SAME!
We are all made of the same parts, we all want the same things in life. Regardless of beliefs, gender, color and orientation. That is what I want my sons to know. I want them to be adults who fight for everyone’s rights to be loved and respected. I want them to treat all people they interact with how they want to be treated. I want them to be kind, understanding and compassionate. I want my sons to be men that can be looked up to. Alone we cannot change things, but together, as parents of the next generation we can shape who they will become and hopefully society in the process.
Back in my teens and early twenties noise did not bother me. I used to listen to loud music, have the TV on in the background while I studied or wrote it was fine. Now, it makes me crazy and not in the sense that it is just annoying because I am old.
I am in my thirties, I am not sure if it’s related to my MS, Meniere’s or both as people afflicted with either complain of sensory issues. When I am trying to focus on one thing and there is noise or talking or a loud TV, music anything, I get actual nerve pain. This week I was helping my youngest son with his reading homework, he was reading aloud to me as I listened; my oldest son was talking to my husband who then came out and started asking questions. I lost my shit a little, I didn’t realize I was yelling in response until my husband said something, all I knew was that I was trying to focus my attention on one thing and then I was overwhelmed with sound.
For people who don’t have this issue think nails grating on a chalkboard (though that sound doesn’t bother me, probably from nerve damage in my ears), in addition to the feeling of that sound think of something that gives you uncontrollable shivers down your spine and go ahead and throw in some heart racing chest pain inducing feeling. I can’t speak for all people with sensory issues, but that is what it feels like to me. It’s terrible, when it’s happening I just want it to stop, but you cannot control the sound of everything around you if there are other people involved.
My therapist is always telling me to take deep breaths, mostly when stress hits me or my PTSD kicks up. It is a hard thing to remember to do, especially when panic sets in because your body has decided to revolt its surroundings. This thing happens to me way more than I would like, well actually I would like it to never happen so I guess that I would like to be able to control when. If I go out to dinner with my husband, the sound can become too much, out with the kids, or play dates, social events. The problem is that it is not consistent, it’s not every single time there is sound or only when I am doing a certain thing.
If you know someone with sensory issues, take a beat, they may be snappy because their body just attacked them and they can’t handle anything else at the moment. Ask before touching, because I have even had to explain to my kids that “light” touches are actually painful to me as it sets my nerves on fire.