Chronicles of Life with Multiple Sclerosis
Right now, I am somewhere between 10 and 11.
Seriously screaming and crying right now.
Anyone with advice on muscle spasms? It’s both legs. Also hands, feet, back, neck, and throat. But the legs are what is really doing me in.
Seriously, any MSer with advice please comment or message me. I am desperate here and pot is not an option.
I am already maxed out on Baclofen, Valium, and tizandine.
I wish I had advice.. I’m maxed out on baclofen too..
oh man. that sucks! but hey, I know wanting to stop something so desperately that you just do it without thinking about anything but that. Glad you’re ok!
Sometimes I amaze myself at my own stupidity.
Boys and girls, don’t be stupid. Don’t do stupid things like smoke, or do drugs. Or worst yet, be like me and stop doing drugs.
No, it’s not what you think. I am referring to prescription drugs.
For a while now I have suspected my medication for my muscle spasms has only been making it worse. My new neuro, in an attempt to get them under control increased my dosage, which resulted in more pain.
So last night I decided to stop the medication. BIG MISTAKE! The thing is, I knew better. I am not a dumb person, just a stupid one when I am in pain. I have this drug in my body that I feel is poisoning me and I want it out. I know I should taper it down over a 3-4 week period, but to do that would mean continuing to put that poison into my body. I wanted it out and I wanted it out now, so I stopped cold turkey.
As I said. BIG MISTAKE!
Oh my, you look worried. No, no, don’t worry, I am ok. I did not die, I promise. But I did have more than my fair share of hallucinations. I accused everyone in my household of baking chocolate chip cookies. I was up looking for them, I could smell them baking. I later realized it was an hallucination based on the absence of said cookies and the presence to a lot of weird visual hallucinations.
Hallucinations are somewhat benign. At least in comparison to the other withdrawal symptoms, which include…
- High fever
- Increased, “rebound” spasticity
- Rapid breakdown of muscle tissue (which can be quite dangerous)
- Organ failure
- Low blood pressure
- Loss of life.
I kinda take issue with a few of these, including loss of life. Seems kinda permanent to me.
The thing that bother me is, what is the drug doing to my body that stopping it wreaks this much havoc?
I am not anti-medication. I believe they have a place. But I don’t trust drug companies and feel they hide information from us. I feel they keep medicine from us that might actually help more, but is less profitable. No, I do not trust drug companies.
But fact is we need them.
Fact is, we get sick, we get illnesses and we are required to take medicines to be able to function on a daily basis. Sometimes the side effects are very bad, but the effect of not taking it is even worse. And with muscle spasms from MS, we are limited in what we can take. We don’t get the feel good muscle relaxers. Nope we get the drugs that make you feel like crap.
So, here I am. Hallucinating, heart racing, and freezing to death. 3 of the withdrawal symptoms. The question is where would it stop?
So, I am back on the medication. I cannot risk organ failure, seizures, or that pesky loss of death thing.
So, I will continue putting this poison in my body.
I would like to state to those taking baclofen, if it works for you, great. DO NOT take my comments about it being poison seriously. This is just the ranting of a woman on the edge. A woman in so much pain she is losing her mind.
Fact is, it may be helping and I am just progressively getting worse. But I am finding my hands won’t shut and open properly and pain is wracking my body. Maybe the drug is helping me, maybe I would be worse off if I wasn’t on it.
My stopping the medication was merely a way to test my theory out. I just went about it wrong.
So, I am back on the medication. Considering tapering down. We will see. But it must be a slow process.
And now, I have taken my medicine, and I am going to go sleep a while. I am exhausted from searching the house last night for those fresh-baked, chocolate chip cookies.
Pain sucks. I don’t remember what pain free is. There is never a day I don’t have pain, never a moment I don’t have pain.
I do not want comments on how sorry you are or how strong I am. I am not strong, I am merely surviving. Well… not really true. I am not just surviving, I am fighting to not let the pain stop me from living, laughing, and loving. That is my goal.
What I would like you to do is to stop and look at your life and if you are not in pain, be thankful. If you are in constant pain, know you are not alone and fight to be happy, to live life to it’s fullest despite it all.
It’s a constant struggle.
I hate being asked if I am feeling bad. There is never any answer but one. So it makes me feel like I am constantly negative… unless I lie.
Many around me have learned to ask how my day is, or how bad is the pain today… and that I can answer positive at times. There are days where the pain is less than others, and those are the days I cherish.
For those with a chronic illness, strive to not let it define you. Use it to make you a better person. I think at times my pain has made me better appreciate the small things in life.
When I have a day with mild pain, it is euphoric. Almost like a drug. An amazing feeling.
When I am in extreme pain, and it is overwhelming, I soak in a hug from Hannah or a joke from Allison. I glean from anything that will make me smile.
No one can understand my pain unless they too suffer from chronic pain. No one. But I am lucky that while people may not understand, they are understanding. And I have those people in my life, and for that, I am grateful.
Yes, today is one of those really bad days. And I can’t tell myself, just hang on, soon it will be over and you’ll be pain free. I know that I will be in pain for the rest of my life.
But, just as I told those not in pain to be thankful, I am thankful it is not worse. I am thankful I have people in my life who care, who make me laugh. I am thankful I can walk. I am thankful I am loved. I am thankful the pain is not worse. I am thankful.