Syringo my what?!?

So I have had this debate going on in my head today about whether or not one of my first posts should be about the other side of me. Considering that I am having a very “syringo” day, I decided that I might as well go ahead and tackle it.

I have a condition known as syringomyelia. Well, now, that’s a mouthful. It even gets a squiggly red line saying it is some spelling gone horribly wrong. It does…really…try it on your computer!  Anyway, It is pronounced (sear-IN-go-my-EEL-ya) and it sucks sour lemons. Except that I like lemons, so let’s say it is not a fun summer walk in the park.

According to the National Institute of Neurological Disorders and Stroke (NINDS) Syringomyelia is a disorder in which a cyst forms within the spinal cord.  This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward.  As a syrinx widens it compresses and injures nerve fibers that carry information from the brain to the extremities.  Damage to the spinal cord often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs, and chronic, severe pain.  Other symptoms may include headaches, a loss of the ability to feel extremes of hot or cold (especially in the hands), and loss of bladder and other functions.  Each individual experiences a different combination of symptoms depending on where in the spinal cord the syrinx forms and how far it extends.  Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining.

Mine is from an injury, but that is a long story. And, while the NINDS is a very smart group of folks, there are a few things they don’t tell you when you get this word handed to you with a shake of the head is that there are a symptoms that kick you on your butt. Regularly. With Passion.

So here is a list:

Progressive weakness and pain in back, shoulders, arms, or legs. Which is not so bad unless you want to lift more than say 10 pounds. That’s my limit. Do you know that many textbooks weigh more than that? Also, no repetitive motions. Gee, as a media specialist, I don’t do that at all when I check in/out books or shelve books.

Inability to feel hot or cold normally.  HA! This is a funny one. “Abnormally intense reaction to hot or cold” should be inserted here. You know how if you are actually ironing a shirt (instead of chunking it back in the dryer with a damp cloth and hoping for the best) and you swipe your hand over the area you just pressed. Yeah. Don’t. Ever. Do. That. Searing pain all the way to the middle of your back. Also, put a Koozie on that soft drink can. Yes, soft drink or water glass. *Alcohol is a no-no considering all the medications that I take. Not a problem for me, I didn’t imbibe anyway. Ironically, I don’t like the feeling of being out of control that alcohol gives you.

Difficulty in walking. Let’s just say that I have been presumed drunk on more than one occasion. (*See above) Standing can also be an issue. You know the DUI test walk? Yep, I’d fail big time! NO BALANCE! It is actually quite comical. Fortunately for me I have a really good sense of humor and laugh off the majority of the leanings, falls and sideways walks.

Yep

Yep

Vertigo. Add this one on a regular basis to the one before and you REALLY have everyone thinking you are a drunk!

Neck pain. Severe. However, I have grown accustomed to it, so for me it is just a part of waking up every day.

HOW DO I DEAL WITH THIS?

I go to the doctor. A LOT. I have a neurosurgeon, a pain specialist, an endocrinologist and a general practitioner. My pharmacist and pharmacy techs are on a first name basis. I take enough muscle relaxers (3 different types, 3 times a day, alternately) every day to stop a horse. However, for me, it is just what it takes to keep me upright. No, they don’t make me sleep all the time. Chronic pain apparently causes the body to react differently to medications. I also wear a pain patch that leeches an opioid into my body every hour.

WHAT ABOUT ADDICTION?

Nope. People who suffer from chronic pain don’t generally become addicted. Our bodies use the medications for purposes other than the euphoria that addicts hope for. Trust me, there’s no euphoria here! ;( If you don’t really believe me, check out this link for emedicine health

So today as I contemplated writing this post, I have a new issue. An electrical shock sensation emitting from my spine. Hmmm. Another call to the neurosurgeon. It could be an inflammatory issue somewhere, or it could be something “else.” Tomorrow I will call to check with her. I see another MRI in my future. This will be my 7th in four years. Oh, and did I mention I’m severely claustrophobic? Another post maybe…

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16 thoughts on “Syringo my what?!?

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  6. Patricia

    HI! I enjoyed your post and I too have been going to doctors and dealing with SM for several years now. Mine was caused by an injury and runs from the C1-T9 so you can understand the issues that I’ve had with trying to manage the pain and symptoms. I’m curious about your work situation and if your company is understanding if you need to take time off to see doctors and at times deal with the chronic pain. I’ve been with an organization for 27 years and I’ve recently had some issues with trying to manage my time off (and requested working from home at times) so I was wondering how others are dealing with this? Again, thanks for your post and I hope to hear back from you soon.

    Liked by 1 person

    Reply
    1. Propensity to discuss Post author

      I work for a school system and have administrators who are VERY understanding of what I go through on a daily basis. Because we have sick days built in that go into a “bank” my time off comes from that. I work as much as possible and rest as much as I can. To be honest, my late afternoons are spent on the couch. I take a nap from the time I get home until about 6:30 every day. I also get a lot of relief from dry needling. I try to have that done every 2-3 weeks. It is the best instant relief I get. Get documentation from your doctors. This is a medical condition so you are afforded rights through the Americans with Disabilities Act. I cannot imagine. I am not an attorney and this is NOT legal advice, just free advice. However, I have been in a couple of situations where I was not being allowed something that I needed because of my condition and I simply stated that I am a handicapped person and that under the ADA law, they did not have a choice. That being said, I legally have a handicapped parking tag, paperwork legally completed by one of my doctors. If you do not have one of those, get one. If the government agrees that you are disabled and gives you the tag, they are accepting that you are covered by the ADA. One government cannot disregard the acknowledgement of another government agency. This sort of sounds vengeful, but I promise I am not. I just fully believe that we should not be considered less handicapped because our issues are “invisible.” Hope this helps.

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      1. Patricia

        Thanks so much for your response and yes it helps! I did not realize that this condition would afford me rights under the ADA. I’ll need to research because when I’ve looked for that type of information I have not been able to find it (meaning, syringomyelia listed as a disability). I’ve been to many doctors and recently moved so I’m starting all over again. Unfortunately, my work situation is not as flexible as I’d like to to be so that I can get things under control. I’ve also never heard of dry needling (thought it might be a craft.. I loom knit LOL) and will need to check that out as well.

        Liked by 1 person

  7. Propensity to discuss Post author

    Thank you, Sue. The MRIs are a blast! 😦 I don’t know how to answer the “are you felling better” question. I hate to be a “Debbie Downer” but I am not feeling better. I have started saying “It is what it is. I am living with it and mentally more accepting of it. That makes it better.” Doesn’t say I feel better, but doesn’t bring out the “oh poor you” response either. Those who want to really know generally ask deeper questions and those who don’t accept that. 🙂 It is what it is.

    I hope for a better understanding soon, too. Thanks for reading and for commenting!

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  8. L Harden

    Hi,

    I really enjoyed this blog post. It is really clear and “user friendly”, it provides a lot of great info. I hardly ever meet a person who knows what Syringomyelia. I really hate the word, hate saying it well ya know, it just gets old trying to explain so I usually just don’t talk about it.
    I also wanted to agree and disagree with your point about pain medications. People who need opioids on a long term basis for a serious disease are not likely to be addicted to them in the traditional way that people think of addiction. Right! Because if they were, the medicine would stop working for them far, far too fast. It just doesn’t work out for kicks when you have real pain. But the body does become “addicted” but only in the way that a dose of medication should only be changed or discontinued under a doctors care. Once the body becomes accustomed, it’s not pretty when it’s taken away and that’s purely physiological.
    I feel very luck that I have no required any type of pain medication on a regular basis for several years now but my disease has luckily been somewhat stable and I have lost pain perception in many areas of my body which has been a blessing in disguise.
    Thank you for writing this wonderful post!

    Liked by 1 person

    Reply
    1. Propensity to discuss Post author

      I do agree completely with what you said about coming off of long-term medications! Absolutely!! If I were to clarify this part of this post, it is just about the comments of so many people that I am going to get addicted to all of this stuff. So many have no idea that this is required just for me to stand up straight during the day, however unstable that “straight” may be.

      Even coming off of one to change to another of the same type is tough, so I can only imagine what it is to come off altogether. My SM is not stable, and I am so thankful for you that your is! I hope for that one day!! Thank you so much for reading and for clarifying this. We are a long way from having others understand our condition. I hope that we can one day tell people what we have and have them understand at least a little without a long explanation!

      Thank you for taking the time to respond. It means so much to me!

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      1. Sue Buffington

        I love your blog post! My SM is a result of a tumor in my cervical spine 17 years ago. Up until now, I was fortunate to have numbness and tingling in my right hand due to nerve damage from my surgery to remove the tumor. Now, I have nerve issues in my limbs…. I have been “MRIed” literally from head to toe, and been put through tests to try to understand why changes have occurred without any success. The answer to my frustration is to medicate. My other pet peeve is friends and relatives -who mean well – ask if I “am feeling better.” SM affects everyone differently, but I am glad to know there are people like you who understand this condition is not easy to live with. I hope that one day in the near future, doctors will understand SM and have a “cure.”

        Liked by 1 person

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