MS Hug Struggles

As everyone reading this now and who has read some of my previous posts knows, I have had Multiple Sclerosis for over 20 years. This has been something I have lived with for almost half of my life, and I still find it extremely frustrating. Even after all these years, there are still things I do not understand or know about this disease. The one obvious thing is how unpredictable it can be. I do find it amazing how much we can adapt to and tolerate life when we have no other choice but to keep moving forward.

There are many things about Multiple Sclerosis and days living with this disease that can feel like things will never improve, which can make you feel hopeless. Even though I have days when I feel like this, I also believe that we are not forced to deal with anything we cannot handle! Of course, it takes a strength we never knew we had, but it is possible to keep moving forward.

I wish I knew the name of the person who thought they were being clever and humorous by naming something the “MS Hug” because this is the worst kind of hug I have ever heard of. It completely ignored the advice from the experts about social distancing and never considered getting approval before hugging someone. I have always thought that MS Hug was very disrespectful and invasive.

Even though I still do not know who came up with the name, I do know that MS Hug is very uncomfortable, but it is not life-threatening even though it feels like it is at times. The MS Hug is an uncomfortable, sometimes painful tightness or pressure around the abdomen or chest. This can last for seconds or minutes, which is the best-case scenario but can also last hours or longer.

There are two effects of Multiple Sclerosis that can trigger the MS hug to happen. One is muscle spasms in the small muscles between the ribs, known as the intercostal muscles. The second is changes in sensations known as dysesthesia, which while they can be, are not always painful.

Just like everything else regarding Multiple Sclerosis, everyone experiences the MS Hug differently. The ways that help one person may not help another in the same way. Various things can help or even eliminate the MS Hug sensation including the following:

Discover your triggers:

This could include fatigue, temperature changes, eating a large meal, feeling unwell, or being stressed. It may not always be easy to discover what triggers the MS hug, but once you do it may be a good plan to avoid or at least reduce the issues you know are your triggers. Keeping a journal with what the temperature was each day, stress level, feelings of fatigued, and what you eat each day may help to determine what your triggers are.

Loose vs Tight Clothing:

For many people tight clothing triggers, them to experience the MS hug and even makes the sensation worse. This may mean not wearing an underwired bra or removing it as soon as your situation allows. It will just seem logical to wear loose clothing if you know tight clothing causes problems. As with everything else, tight clothing helps some people to deal with the MS hug. For reasons not always understood, the grip of tighter clothing can distract the brain, making the MS hug sensation less noticeable.

Moving and or Stretching:

For some people staying mobile and stretching relieves the pain from the MS hug, but for some people laying down is the only thing that offers them any relief. This is all a matter of personal choice and what helps you the most!

The use of hot or cold compress:

Again, different things work better for each person, so you just need to play around with heat and cold compresses until you know what works best for you. Hot water bottles, warm towels, or a heating pad when applied to the affected area may offer relief. If this does not work, you can try a cold compress or an ice pack to the affected area. Please understand and be careful of both hot and cold as it is easy to cause further damage to the skin.

Physiotherapy or other physical treatments:

his can include TENS which is transcutaneous electrical nerve stimulation. I honestly do not know a lot about this because something about electrical nerve stimulation scares me, but I have heard it can be helpful!

Relaxation, Mindfulness, and CBT:

Relaxation and mindfulness exercises can be helpful for anyone, not just those dealing with MS and the MS hug. Things like self-hypnosis and hypnotherapy have been successful for many people around the world. Controlled breathing techniques can be found with a quick Google search and are inexpensive. 

Multiple Sclerosis has come along way with treatment since I was diagnosed, but for some reason there still is not a cure. I wish there was a magical medication that could make all the pain and issues I deal with daily go away, but until there is I will just continue to fight and not allow this unpredictable, frustrating, and ugly disease steal the light and fire I have inside me. As I am sure you can assume, I am dealing with the MS hug right now and it has been a struggle. I am SO thankful that I work from home because with the way I was feeling today, there is no way I could have driven to an office and dealt with being this uncomfortable for 8 very long hours.

Anyone that is reading this and has Multiple Sclerosis, have you dealt with this issue before and if so what helps you? The funny thing is, normally heat is my enemy, but for this issue and other types of pain, my heating pad is my best friend. The only way I can be comfortable is wearing loose clothing because I find that to be the most comfortable. The weather has been changing each week, so I can only assume that might be the reason the evil hug is back!

Thank you for visiting my site today. I hope the information that I have shared was useful and interesting to you. I am looking forward to reading your comments because I am sure what you have to say will be helpful. I hope you had a good week and you have an amazing weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Never Give Up

At this point, I am not sure how we survived Monday. The day itself was not too bad, just another Monday and fighting against getting used to the time change. It really should not be too hard because we did gain an hour of sleep, but the change to sunlight is a little challenging. Of course, regardless of when the alarm clock is set to go off, I am always awake before it has the chance to make that awful and piercing sound. Needless to say, I was awake for more than an hour before my alarm was going to go off. Super annoying, but it will get better.

The strangest thing happened to me last night and I still do not understand it. It was close to 9:00 PM and suddenly, I had this intense pain in my lower back and abdomen. This pain was so awful I was on the floor unable to move and catch my breath. It felt similar to the MS Hug, but MUCH worst. I have dealt with the MS Hug many times before and it was never as bad as things got last night. My husband was so concerned he wanted to take me to the emergency room, but I refused because I was hoping it would get better. I felt so terrible, I hardly could eat dinner.

I guess the only good thing about living with Multiple Sclerosis is it pushes me to limits I never knew I had. I know this evil disease is not going away anytime soon, so the only choices I have is to fight hard or give up. The choice is clear because I refuse to surrender to this disease. It may win the battle at times, but I am going to win the nuclear war we are battling. I strongly believe that the only way I can fail with Multiple Sclerosis is to let it win and do whatever it wants. For as long as I am still able to breath, I will continue pushing my limits and prove that I am too strong to lose.

Thank you for visiting my site today. I hope you have enjoyed this post and it provided you with the determination and peace to keep pushing forward. Trust me, it is NOT easy to push your limits, but it may surprise you as to what you can accomplish in this life. I am looking forward to reading your comments and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Sunday Thoughts

Hello Sunday! I hope you have been enjoying the weekend and you are feeling well. Even though I knew we were supposed to turn the clocks back an hour before we went to bed last night, I completely forgot to do so. Of course, for some reason that is unknown to me, I did wake up every hour on the hour since 3 AM. Needless to say, I did not sleep well last night. Honestly, I think one reason I did not sleep well is that I was ridiculously HOT. It is early November and I do not think we should be experiencing warm temperatures, but it appears that until Tuesday it is going to be a little too warm. Tomorrow the high is going to be 80 degrees and then it will begin to get cooler again.

What do you think about the time changes? We do have to do this twice a year and I look forward to a day when we do not have to do this because it throws me off each time. I have never understood why most states in the US this does because there are a couple that does not participate in the time change. If I am not mistaken, most other countries do not participate in time change, which makes sense to me. I have heard this is going to be the last year of time change in the United States, but I guess we will see because things are always changing!

I had a doctor’s appointment last week with my pain management doctor, which always goes the same way. I did explain to the Nurse Practitioner something new that I have been feeling for the past few weeks because I wanted to know her opinion as to what could be going on. Every morning, for the past several weeks my feet and ankles have been so painful that it is hard to stand up. I did not want to let my MS specialist know about this issue because she would more than likely want me to have an MRI and she never has any good news. The Nurse Practitioner said that it sounded like arthritis, so that was not the best news, but she might not be correct, and it could be worst if I had told my specialist.

Thank you for visiting my site today and reading my Sunday thoughts. Anyone reading this that has MS, have you ever heard about a connection between MS and arthritis? If you have, what treatments have you read or heard will help this pain? I am looking forward to reading your comments and I will respond to all comments as quickly as possible. I hope you have a nice day, and you are preparing for the new week that will begin tomorrow. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

20 Plus Years….

For the past 20-plus years, I have been forced to live with an incurable illness, Multiple Sclerosis. There have been various challenges I have encountered during the years, but the most frustrating has been how extremely unpredictable this illness is. It does not seem to matter if I follow my doctor’s recommendations and take the necessary medication daily, things can still go wrong. I do realize that I am one of the lucky ones living with this illness as it has not caused me to be disabled and required to use a wheelchair or a cane, but it has caused me many issues.

Of course, I have learned to deal with the pain that I feel 24 hours a day, 7 days a week, 365 days a year as much as anyone can. Lately, the issue that has made me nervous is the increase in dizziness. This is an issue I have dealt with randomly before, but it has been way too frequently over the past few weeks. I have not let my doctor know about the increased dizziness and not sure that I am going to unless it gets worst. After all, I already know what this could mean and do not want her sending me for an MRI or pushing me to take steroids because both make me miserable.

In the past dizziness was a sign there were new or active lesions on my brain. I think to avoid increased levels of stress. I would rather not have a doctor tell me what I already feel like I know because all that would do is make my stress skyrocket and then cause even more issues. Considering I have lived with MS for so many years, I know the most important thing to do now is to, limit and reduce my stress levels, which will hopefully make things better with the dizziness.

I think taking the right steps to reduce stress is going to be the best course of action. I recently did a post about the benefits of journaling, so I am going to try doing this daily and still blog. Writing is a great way to reduce stress and express positive thoughts and vent negative emotions. Now that the temperatures are cooler, I am going to start crocheting again because this has always been relaxing for me. I would love to be able to donate the blankets I make to those who need them to stay warm.

Do you have any specific things you do to reduce stress and relax? We are all unique and have different ways to handle issues in life, but they are all important. No two people are the same, which is what makes the world so interesting. I believe if we were all the same, the world would be boring and not at all interesting. It would be great if we could all learn to accept our differences and still be kind and understanding to one another because this would make the world a better place.

Thank you for visiting my site today. I hope you enjoyed what I have shared, and you are enjoying your weekend. I am looking forward to reading your comments and I will respond as quickly as I possibly can. Thankfully, we do still have one day left to enjoy the weekend and I hope you can do so safely. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

The adjustments

Over the past couple of weeks, there have been numerous changes to the weather. While I am thrilled the temperatures have cooled, the changes have caused havoc on my body. The hot weather I had to deal with all summer long was miserable and I could not wait for fall to arrive😊! Now that the fall weather is here, it is taking me a longer time than I would have anticipated adjusting. I know I can adjust to cooler temperatures because I love hoodies and snuggling up in a warm blanket😊! The issue is the constant fluctuation. If only it could just remain constant, I would be able to adjust and not be in unbearable pain!

Last week felt like an incredibly long week that I did not believe was ever going to end. Monday always seems like the busiest and most aggravating day of the entire week, but they all ran together and were just as frustrating. Working from home has many amazing attributes, but it also makes me feel like I am always at work because my work laptop seems to sit there and mock me. Yes, I do understand a laptop cannot really mock someone, but it does constantly remind me about work and what has gone all during the week.

The good thing about my job is, I truly do appreciate my team and my supervisor. One of my teammates always knows how to make me laugh and my supervisor appears to think highly of me, and I trust that she will have my back if I ever need support. I do believe this is uncommon in the United States because it has been a LONG time since I had a supervisor that is supportive and caring. Living with Multiple Sclerosis and dealing with the challenges is not easy, so having a supportive team at work is helpful and makes the week not as bad as it could be.

I am thankful the weekend has finally arrived, and I do not have anything that is a must do. I was even able to sleep in this morning, which is VERY uncommon. Two of my cats did start trying to wake me up earlier, but I was able to ward them off because I was not ready to move yet and was WAY too cold! This morning the issues I have been having with my feet and ankles were much worse, which I assume was due to be EXTREMELY cold. It is amazing what a heating pad can do to help with my issues with MS.

After a long week, what do you feel is the best way to recuperate? Are you doing anything fun this weekend or are you planning to just rest up in preparation for next week? I have a book that I need to read because I feel like it is going to help me with a challenging issue I will be dealing with soon. I think it is best to over-prepare when you know something seems like it is going to be impossible to handle. Even in the most challenging situations in life, there should always be hope, right? Right now, I need all the hope and preparation I can have because things are going to be hard in the coming weeks.

Thank you for visiting my site today. I hope you enjoyed and found meaning in what I have shared today. If anyone has any advice for ways to deal with an impossible situation, I would love to know! I hope you have a great and safe weekend doing what YOU want and not what others think you should do. I am really looking forward to reading your comments and will respond as quickly as possible. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! 

Always, Alyssa

Thoughts out of the blue

Out of the blue and for no reason at all, I started thinking about a life-altering event I went through. This is not something I dwell on because I have very little control over it and it would be a waste of time to overthink it. It has been more than 20 years since I heard my doctor tell me that I had Multiple Sclerosis. I was still so young, very ignorant of what this meant for my life, and fears of how many challenges I would be forced to endure. Of course, I did hear the words the doctor spoke to me on the day he broke the news to me, but it took me a while to accept what he said to me. I tried my best to fight him and tell him he was wrong, but that was fighting a battle I had no chance of winning. After several months, I chose to accept it, but also to never surrender because I do believe in the power of the mind and that positive thoughts produce positive outcomes.

All those years ago, I was terrified that I would not be able to live a normal life. Nowadays, I wonder what is normal because for me it is constant pain and frustration with a disease without a cure. I feared that I would lose the ability to walk and take care of myself, which would have been extremely hard for me because I am a very independent person and never want to rely on anyone for anything. It has been approximately 20 ½ years, 7,488 days, 179,703 hours, and 10,782,180 minutes (give or take) and I am still here. I am walking and taking care of myself and my husband, and my three cats. There have been many obstacles through the years, but I have always remained determined to not allow this illness to defeat me.

Over all the years, I have learned more than I ever wanted to about Multiple Sclerosis and as crazy as this sounds, it has taught me a lot. I have learned how to discover a strength that I never imagined having. I have learned how being determined can help me to survive the most challenging situations. I now understand how powerful resilience is and the many ways it can help us to persevere, even when we feel like hope is lost. I have learned just how a positive mind can make a HUGE difference in our daily life.

At the beginning of this post, I mentioned that I do not dwell on things I have little control over. I do understand that even though I have little control over Multiple Sclerosis, I can control how much I allow it to bring me down and to feel helpless. I do have control over my mind, and I can tell myself that I am stronger than this unpredictable illness. Most importantly, I can remind myself that I did nothing to cause this illness to continue to plague my life. I will continue to keep the promise I made to my late grandfather shortly after I was diagnosed to continue to fight the battle until I win the war against Multiple Sclerosis.

Unfortunately, we all have something we must live with, and we all have a choice in how we approach things. I am thankful the doctor caught the Multiple Sclerosis early because if he did not, I can only imagine how much worst things would be for me today. I will always have a special place in my heart for my first Neurologist and his Nurse Practitioner because they were an amazing team that never lost hope in me. I am thankful that I have learned to not feel any shame because of what I live with.

Thank you for visiting my site today. I hope you enjoyed what I have shared today and that in some way, it resonates with you and helps you to understand your strength. I hope you are enjoying your weekend and remaining as safe as possible. I am looking forward to reading your comments and I will respond as quickly as possible. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Let It Go Friday

I have always known that weather conditions, extreme temperatures, and stress can create issues with how Multiple Sclerosis behaves. If I am being honest, Multiple Sclerosis tends to misbehave frequently and have crazy toddler-like temper tantrums. I am not sure which issue causes more issues but do know that combination causes massive and miserable pain. I do not enjoy complaining about the pain and know that tears do not fix a thing, but yesterday my pain was at a high that makes me wonder how I managed to make it through my workday.

Of course, it has been rainy a lot lately with some wild storms. The power did go out while I was working yesterday, but only for about fifteen minutes. There was a part of me that hoped it did not come back on so fast because of how awful I was feeling. My poor cats hate when it storms because they seem to think the thunder is going to kill them and they all hide under the bed. I swear I often think where I am living is trying to be like Seattle where it rains most days☹.

What can you do when you are in so much pain and nothing helps? Right, there is nothing that you can do. I have heard so many times that stress is the silent killer, and I could not agree more with this. Stress can cause additional pain, headaches, loss of appetite, sleep disturbances, and invade your mind. Unfortunately, I have always worried about those I care about and worry about what they may be going through in life. The world is such a mess right now. We already went through years of COVID fears and now we need to worry about Monkeypox. I mean, when is it ever going to end? Right, no one knows, so all we can do is follow the experts’ advice.

We have finally made it to the end of this week and my goodness has it been a long week! The weekend is going to begin soon, and we need to let go of all the never emotions the week has caused. The weekends are so short, so we do not need to carry the negativity from the long week into the weekend! Friday is the perfect day to just let go and I hope the quote I am sharing with you today will help you do so. I hope your week went well and you did not have to endure any unnecessary stress and hardships.

Thank you for visiting my site today. I hope the quote I shared helps you to learn to let go of negativity and enjoy your weekend. I know I have asked y’all before to stay safe and do what is necessary with vaccines, but it is looking like Monkeypox can be extremely dangerous. I am looking forward to reading your comments and I promise to respond as quickly as I can. I will be playing catch up this weekend with comments as I do not have anything else planned. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Heat, Headaches, and MS Hug

For the past several days I forced myself through my workday and the things that I had to do. Unfortunately, I was unable to do any posts, work on my essay for the writing competition, or read because I have been battling a headache that seemed to be never-ending. Anytime I thought it was improving, I was proven to be incorrect when the massive pounding in my head returned with a vengeance.

Many of you reading this post today and may have visited my site before are already aware that I have Multiple Sclerosis. Anyone new to my site, thank you for taking the time to visit and I hope you will return. I enjoy writing about various topics and hope you will enjoy what I write about as well.

I have lived with Multiple Sclerosis for over 20 years, so basically more than half of my life. Over all these years, I have had numerous challenges, setbacks, disappointments, frustrations which fueled stress, and enough tears to fill the ocean. The one thing I have not experienced is giving up and letting MS control my life.

One of the main reasons why I refuse to give up is I made a promise to my late grandfather shortly after my diagnosis that I would always continue to try to move forward, and I would never surrender to MS. Although he has been gone for almost 9 years, I will continue to keep the promise I made to him. It might help that I am also extremely stubborn and obviously a born fighter, just not the violent type of fighter😊!

During the 20-plus years of living with MS, I have dealt with vision impairments, numbness, various forms of pain, stress from the harshness of symptoms, fears from potential disease progression, changing and deciding the right medications, relapse, neuropathy, doctor’s appointments, dizziness, and much more. Most of my pain does not prevent me from living my life and I just push through it and try my best to ignore it. After all the years of experiencing head pain, I am still unable to tolerate it. Unfortunately, it does not matter how many headaches I have already had in my life or how often I battle with them in any given week, the headache always wins our war.

There once was a time when I had a headache, I could take Advil and lay down with an ice pack for an hour or so and the headache would be gone. I wish I could explain how much I miss those days! Unfortunately, over the past few years, nothing provides me with any relief. Although I had many reservations, I ended up trying everything my doctors recommended, but they were all a complete waste of time and money because they did not help. I have tried combinations of over-the-counter medications, such as Advil, Excedrin, and Sudafed, which have helped more than anything else.

Over the past several days, not only was I dealing with the headache straight from hell but the invasive tight band feeling also known as the “MS Hug” visited me. The only good thing about COVID was social distancing, but I guess the MS Hug did not get the memo. I am just speculating, but I think I am experiencing the tight band feeling because of stress, the insane heat, or a nasty combination of the two.

This outrageous and uncontrollable heat is my enemy because it always causes me to feel awful. Over the weekend, I had to run out to two different stores and when I finally made it back home, I told my husband I am not leaving the house again during the day until at least November. I am pretty sure if the temperatures get any hotter, it will be the death of me. I do understand that this massive heat is being felt all around the world, and I do not think anyone can say global warming is not real anymore.

How are y’all handling the incredibly dangerous heat? One thing that I believe helps is to stay hydrated. I have four different stainless steel insulated water bottles. I fill the bottles about a quarter of the way with water and put them in the freezer. This makes it so I always have ice-cold water handy! I strongly recommend them, especially during the summer months. These stainless-steel insulated water bottles are very affordable on Amazon and there are any colors you can think of😊!

Another thing I recommend during these HOT summer months is if you must leave the house, start your car, and let the A/C run for a few minutes. It is never a good idea to try driving when you are hot because you could get overheated, which can cause you to feel dizzy and faint. The heat can do some terrible things to our bodies and minds, so it is best to do everything we can to stay as cool as possible.

Thank you for visiting my site today. I hope what I have shared was helpful for you. If you have any other suggestions regarding staying cool with these drastic temperatures, please share. Also, if you have experienced the evil MS hug, is there anything you do that helps? I am looking forward to reading your comments and I will respond as soon as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Just another day in paradise

Despite having lived with Multiple Sclerosis for 20-plus years and understanding it more than I wished, there are still times I get discouraged and frustrated. Of course, I understand that most of the symptoms that make me feel this way will subsite in time, they can be difficult to tolerate. Something worse than normal, and I have been forced to endure for the past several days is the neuropathy in my legs. I should be used to dealing with this because it is not new, but it does not get easier. Lately, it has been painful to walk and even sit down the sensation of tingly, pain, and the “spider dance party” on my legs have been almost unbearable. Considering I have been dealing with this for years, I can almost guarantee the reason for the increased issues is due to heat and stress.

Another issue that is not new but has been returning frequently is dizziness. It used to happen more later at night, but for the past few days it comes on suddenly at random times throughout the day. The only way I learned how to deal with this is to sit down immediately (to avoid falling), never lay my head backward, and or force on a still object. I already know I will get extremely dizzy if I lay my head backward, so I try to never do this. Heck, I also know when I go to the neurologist, they always have me do this, even though I explain what happens. It seems many doctors do not listen to their patients; you know the one that knows more about their body than any medical school can teach?

Many things can make Multiple Sclerosis symptoms flare up and we need to learn how to avoid these issues as much as possible. Summer in the south makes avoiding the heat pretty much impossible. Anytime I must leave my house and get in the car, I make sure to never drive until the air conditioning has been on long enough for it to not be too hot. How do you avoid heat when there are more hot months than cool months?

Stress is also a HUGE factor. Stress can make old symptoms return and create new evil symptoms. I am still learning how to avoid stress, but for me it is impossible. Everyone already knows that stress is a silent killer, but what it can do to Multiple Sclerosis is miserable. I know many of the reasons I have had awful relapses previously were because I was stressed about work, life, medication, money, and many other issues we all face.

Something else I have always had a hard time with is fatigue. It is hard for me to sleep most of the time and even more so during the insanely HOT summer months. I do try getting enough sleep, but it hardly ever happens, which more than likely has something to do with the inability to turn my mind off. Unfortunately, my mind is always racing, and I have not figured out how to stop this. It does not matter what day it is or what time I go to bed, I am awake at the same time every single day. If I am not awake at a certain time, the cats will play their part and force me to wake up. The truth is, I tend to wake up early anyway because of the pain I experience.

Finally, pain is a major burden in my life. I deal with pain in multiple parts of my body 24 hours a day, 7 days a week, and with no breaks. The crazy thing is, that I would not feel normal if I did not have pain. Of course, I would love to have one day or even one hour when I was not in pain, but it is not in the cards for me. I try to embrace the pain and just ignore it the best I can. My logic is, why focus my attention on something that is not going to change and use up the energy I do not have I have for something cannot control when many other things need my energy and focus? Great way to think, right?

Thank you for visiting my site today. I hope you are having a wonderful and safe long weekend, so far. I would love to read your comments and any advice you have regarding what I have shared today. I promise to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Pain

Each person that lives with Multiple Sclerosis will have a unique journey, as this illness impacts everyone differently. I believe this is one reason why it is often referred to as the “snowflake” disease. The symptoms are vastly different from person to person, and we all handle the symptoms in our way. Of course, each symptom is frustrating, but some can be much easier to tolerate or even get used to. 

For over twenty years, I have battled with Multiple Sclerosis. When I was diagnosed, I was young and did not have extensive knowledge regarding the disease I would be forced to live with for the rest of my life. I was terrified, angry, sad, confused, and everything in between with the diagnosis because of what I did know about MS. I knew MS did not have a cure and it could be extremely unpredictable and there was a possibility to become disabled. Given my age, I was naïve and could not see any hope for my future, which made acceptance almost impossible.

Over the last two decades, I have experienced many different symptoms that had a variety of challenges. For instance, the first and only symptom I had was optic neuritis. This is commonly one of the first symptoms of MS. Optic Neuritis is a temporary problem. When the optic nerve is inflamed it can cause pain and partial or complete vision loss. Typically, this issue gets better on its own, but some cases require steroid medication to reduce the inflammation. 

During the early years after being diagnosed, I went through several frustrating days. Accepting the doctor’s diagnosis was painful and emotionally draining. Every appointment would start with me being argumentative and dismissive of anything the doctor said but would then end in tears. I could not fathom why I had this condition or why my life had to be altered so drastically and at a very young age. The truth is, I have always been a strong-willed person who could take care of herself without any help! I’ve never wanted to rely on anyone for help and was scared I would have to at some point in my life. 

The other frustrating part was deciding on a medication to slow down the progression of the disease. Back then my choices were limited to injections. I have never had an issue with needles but did not think there would be a way to give myself a shot. Even though I hated the options offered, I decided to try one that was three times a day. Unfortunately, after successfully giving myself a shot Monday, Wednesday, and Friday for a few months, the miserable side effects became too much for me to handle and I started slacking the medication, which made things worst. My first Neurologist was a sweet elderly man who has patience for days. He knew my fears, so to convince me to decide on another medication, he used my fears against me. It was a ruthless way of forcing someone to decide, but it did work. 

Of the various symptoms involved with MS, I did not suffer from pain in my early years. Unfortunately, during the past ten or so years, my pain issues have become increasingly more problematic. There has not been even a second, I have not experienced at least one form of pain. Considering it has been going on for so many years, there is a HUGE part of me that expects it and I can manage. Before I had MS, there were many types of pain I did not know existed. 

Through the rest of this post I am going to explain the different types of pain I deal with 24 hours a day, 7 days a week without a break in between. The reason I am doing this today is that my pain levels have become more intense and now in addition to all the other pains, my right shoulder and arm hurt so bad I can barely move my arm. I know my pain has become worst because of the incredible amount of stress I am under, which I am assuming is why my right shoulder hurts too. 

Although everyone has a different experience with MS, pain is a common symptom. Pain affects approximately two-thirds of people with MS worldwide and can impact their daily activities such as work and recreation, moods, and the ability to enjoy life. Most pain is a direct result of MS and is caused by damage to the nerves in the central nervous system. There are other forms of pain due to changes in the body due to MS, which could include experiencing weakness in your arms and legs, which forces you to walk differently causing pain in the back and hips. 

Neuropathic pain stems directly from damage to the nerves in MS. Pain from weakness, stiffness, or other mobility challenges is thought to be Musculoskeletal pain. Neuropathic and musculoskeletal pain can be acute with a rapid onset and short duration or chronic, which starts gradually and stays persistent. 

Neuropathic pain is miserable and, in my experience, not much helps ease the pain. This occurs due to “short-circuiting” of the nerves which carry signals from the brain to the body because of damage from MS. The pain sensation feels like burning, stabbing, sharp, and squeezing. The best way for me to describe this is, that it feels like spiders are having a constant dance party on my legs and feet. Neuropathic pain can be acute and chronic. 

FOUR TYPES OF ACUTE NEUROPATHIC PAIN

Trigeminal Neuralgia- stabbing pain in the face or jaw area. This can be misinterpreted as dental pain. Most often it is unpredictable, so we do not know when it will occur, but it does come and go.

Lhermitte’s Sign- is a brief stabling, electric-shock sensation that runs from the back of the head down the spine and possibly into the arms and legs. This can manifest by bending the neck forward. It typically means there is or has been damaged to the cervical spine from MS.

MS Hug- is a squeezing sensation around the torse. This feels like a snake is wrapped around your body and refuses to let go until it takes the breath out of you. An MS hug is the kind of hug no one wants and is an invasion of personal space!

Paroxysmal Spasms- is a periodic and painful tightening of muscles. For instance, this can happen in your arm or leg several times throughout the day and night.

Chronic neuropathic pain is normally the continuance of acute pain. This is unpredictable and may be experienced daily. Several issues can increase the likelihood to experience this pain, such as stress, fatigue, illnesses, and becoming overheated. 

Musculoskeletal pain with MS occurs because of weakness, stiffness or coordination struggles that change your walking or other mobility. This is often seen in the hips, legs, arms, and normally when muscles, tendons, and ligaments are immobile for a long period of time. 

Headaches and migraines are other common symptoms of MS. Although I deal with numerous other forms of pain daily, I am unable to tolerate migraines. These put me in the bed with an ice pack for hours and often even when I try to sleep them away, they are still present when I wake up. I have dealt with pain for many years and it never gets easier, but I also know crying or giving up does not fix the issues. I just try to keep pushing forward the best I can. 

Thank you for visiting my site today. I hope you found what I have shared interesting and that it helps you with anything you are experiencing. I hope you have had a safe and relaxing weekend. I am looking forward to reading your comments, which I will respond to as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa