Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
Happy Sunday, y’all! I hope you have been able to enjoy your weekend😊! It is so amazing how short the weekends are, but how quickly the months pass by. It feels like January just began and yet we are more than halfway through the month. Were you able to do anything you wanted to over the weekend? Honestly, I have tried spending the weekend doing nothing. Unfortunately, I have been experiencing the VERY unwelcome. MS Hug again. I am not sure why this MS Hug was not made aware of social distancing because it has gotten WAY too close for me. I have always been uncomfortable when people get too close to me because I appreciate my personal space. I know that it will pass, but it is not passing soon enough. A heating pad helps some and no number of tears make will it go away any faster☹.
Even though things did not go the way I would have hoped the first time I tried, I am considering doing another writing competition. The difference in the one I am thinking about doing is I have a choice to either do a personal essay or I can do an article based on something I have researched. I have always enjoyed researching and think this would be an exciting adventure. The bad part about trying this is that I have always questioned my abilities and never thought that I was good enough. Of course, I also think that if I do not at least try I will always wonder what could have been. Do any of you have any advice or suggestions?
For most people, Sunday is a day to rest and prepare for the week ahead of us. Normally, I try getting laundry done today and anything else I was not able to do during the week. Today, where I live is rainy with a slight chill in the air, but I will still finish the one load of laundry I did not get done yet and relax with the cats on the couch. I am also going to think about writing ideas for the competition that I may or may not participate in. Who am I kidding? I do fully plan to do the competition because if I do not, I will always wonder what might have happened.
What do you think about change? Do you think that in 2023, the world should be more accepting of others and the way they choose to live THEIR lives? Do you think we should have evolved much more than many have? I am not trying to push my views onto anyone else, but I do not think anything should trouble our lives unless it negatively affects our daily lives. It does not affect my life if two people get married out of love, even if they are of the same sex. Another thing that does not affect my daily life is transgender. The United States is SUPPOSED to be a free country and unless we have been lied to for decades, we can all live our lives the way we want, which means we are allowed to love who we love, be whoever we want to be, follow the religion we want and read the bible associated with that religion, and anything else as long as it does not harm another person!
Do you think that our governments tell us the truth? Would it be so hard to believe that we are not being told the truth about things in this world? Why are many of us not being treated fairly and able to have healthcare that is the best for us, which would be free or at least a lot more affordable? Why do so many have to suffer from an illness we are told there is no cure for? Would it be so hard to believe that there are cures for many of the diseases in the world, but only for an extremely HIGH amount? I do believe anything is possible!
Thank you for visiting my site today. I hope you enjoyed what I have shared and that you are having a good weekend. I know some of what I have written can be a little controversial and some of you may disagree with me, which is completely within your rights. I would love the chance to read 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!
We have survived the first part of the week with no problem, so hopefully, the second part of the week will be just as easy! Of course, I was still on “vacation” on Monday, so yesterday was my first day back at work. Thankfully, it was not too bad because my co-worker that was taking care of my work did a great job and now she is off for a few days and I am taking care of hers. Teamwork makes the dream work, right? My goodness, I never liked that saying because it is so clique and my old boss said it ALL the time! I suppose it is true though!
At the halfway part of the week, we know the weekend is near and we only have a couple of days to get through, but we could still use just a little inspiration, right? Maybe that is just me because I am still a little worn out from the mini vacation and the incredibly LONG drive. I am still hoping the quote that I am sharing with you will be inspiring and help you get through the rest of the week! Unfortunately, there is too much negativity and hate in the world where others are tearing people down and belittling others. The reason for this awful and mean behavior tends to be that someone is feeling bad about themselves and they just want others to feel just as bad as they do. This makes no sense to me because I feel we should only try to encourage, strengthen and help others. Why not try to build others up and make the world a better place?
How is your week going? Has anything exciting happened or are you just ready for the weekend? I am not sure why, but the darn MS hug has returned. The only reason I can think this is happening is due to stress and the LONG drive. Who knows why the mean and very unwelcomed MS hug comes to visit unexpectedly? I know that Multiple Sclerosis is unpredictable, but this is a very unpleasant thing to have to deal with. I would blame it on my tooth extraction, but I do not think that would be true. The only thing that I can blame on the tooth extraction is this very annoying static sound in my ears. I am hoping both of these things will go away sooner rather than later!
Thank you for visiting my site today. I hope you enjoyed what I have shared and that you found the quote inspiring! I am looking forward to reading your comments and I will respond as quickly as I can. I know it might seem like there are too many days left in the week, but try to remember we have made it through the worst part! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
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!
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!
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!
Tuesday is an indicator we made it through one of the hardest days of the week, Monday. Yesterday was a challenging and frustrating day for me for a few reasons. Work is getting busier, and people are getting more demanding. There are a few people I work with that are helpful and I can communicate with, knowing they respect me because they never talk down to me. Another person I have a lot of respect for the way she views things, however, she does not always respect me when speaking to me I guess everyone handles stress and busy days differently. Regardless of, how people chose to talk to others, I am trying to not let things upset me because, at the end of the day, it is not worth it.
Another reason yesterday became challenging is because the MS hug is back. It has been happening on and off, but when it is in full force, it is awful. The MS hug is the kind of hug no one wants. I am sure it feels different to everyone, but for me it hurts and takes my breath away, making it hard to breathe at times. I have no plans on letting my specialist know because I do not like their ways of healing it. I hate steroids more than most anything else. Steroids make me miserable and cause my personality to be altered and not for the better.
On a positive note, on June 10th, one month from today, I get to meet my literary role model. I think of James Patterson as an icon with his writing. I view him as one of the best and most memorable authors of our time. His books are creative, engrossing, and captivating. Once I start one of his books, especially in The Women’s Murder Club series, it is nearly impossible to put down. I have thought a lot about what I will say to him during the brief encounter. I have decided to call him Mr. Patterson. He is an elder and deserves the utmost respect. I want to tell him how much I love his writing and how much I respect his abilities, and of course, I would love to know how he does what he does. Unfortunately, I also know my time will be limited.
Thank you for visiting my site today. I hope your week is going well so far and that it only gets better as the days pass us by. Thankfully, we have survived one day of the week and have four to go, but I think we can handle it. Yes, each day brings us new demands and it takes determination and a strong will to make it. The truth is, this is never easy, but we are all strong enough to handle anything thrown our way. I look forward to your comments and will respond to them as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I think y’all already know that I have had Multiple Sclerosis for over 20 years and for the most part I am still going strong. Honestly, some days are worse than others and most issues are triggered by either the weather or stress. I do not like having a pity party but wanted to quickly explain what I think are some of the most challenging aspects that come with this illness. Thankfully, over the years I have been able to get a much clearer understanding of what MS is and what it can do to a person. Crazy as this might sound, this has been good because when I was diagnosed, I was very ignorant to this illness and had an immature mind, but I was young and that is my excuse for my childlike thought process.
Of course, I do know it could always be worse and I am thankful it is not any worse than it is, but that does not mean it is not challenging and frustrating. The issues I am going to explain are not in order because I cannot say one is more challenging than the other, as they can all be grueling. No matter how challenging and or frustrating these issues are, most can be managed or at least I try to ignore them.
Multiple Sclerosis can be incredibly unpredictable, which can be burdensome. Never knowing what to expect or when it is going to strike is unnerving. It is embedded in my mind to have things planned but living with the unpredictability of MS can force plans to be altered or cancelled. Of course, with COVID there have not been many outings planned and I work from home, so life just keep moving along.
This illness is not something new and even though there have been vast amounts of research done, a cure has not been discovered. I dream that a day will come when I wake from the nightmare of Multiple Sclerosis and I will not have anymore pain, weakness, numbness in my legs and feet, dizzy spells, or any of the other awful symptoms caused by MS.
Another issue that can be exhausting is the constant pain I feel in my legs and mid to lower back. This has been something the MS caused since I was diagnosed, so I try to not allow it to impact my daily life too much, but it does still cause difficulties. I would say the leg pain is a lot harder to deal with than the back pain because leg pain makes moving around extremely laborious. The back pain is awful, but most of the time a heating pad helps relax the muscles.
I also experience neuropathy in my legs and feet, which causes an annoying tingling sensation. This issue is not easy to ignore because it is constant. It does not bother me as bad during the day but gets increasingly worse at night. The tingling feels like spiders crawling around my legs and feet and not too much decreases this issue. The neuropathy issue makes falling asleep and staying asleep very challenging.
Another issue I battle with is fatigue. It does not matter how much sleep I get, which is never as much as it should be, I am always tired. I have noticed this gets worse towards the afternoon and I start losing my focus because I am exhausted. I arrange my work tasks, so the most in-depth things are handled in the morning when I am the most alert.
The hug I never want is called the MS hug. Thankfully, this is not something I deal with daily, but when I do it is miserable. It kind of feels like there is a snake wrapped around my abdomen and continues to squeeze. It is uncomfortable and painful. For the past few days, I have been battling with this and ignoring it is not making it stop. However, I do think my specialist is on a need to know and I do not think she needs to know about this because I do not want her trying to force steroids on me as that alone makes me feel terrible.
Although I have lived with this disease for over 20 years, some of the fears I had in the beginning do still haunt me. I wonder will there ever be a cure, how much longer will I be able to walk for until I am in a wheelchair, is this disease going to end my life someday, and many more questions run through my mind. Even with all the unanswered questions, I am still never going to give up and allow the MS to win the war we have been fighting.
Thank you for visiting my site today. I hope you have enjoyed your weekend and you were able to do what brings you the most joy. I hope what I have shared with you today will be give you some comfort and help you with something you are dealing with. I do not normally share posts that might come across as complaining, but I do want everyone reading to know that no matter what you might be struggling with, there is someone that understand. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Pain is not something anyone wants to deal with or finds easy to manage. Of course, there are many that battle with chronic pain due to an illness. It does not mean anyone experiencing pain 24 hours a day, 7 days a week, and 365 days a year any easier, but they may become used to it. Since my Multiple Sclerosis diagnosis 20 plus years ago, my days have been accompanied by pain. At the beginning of my MS journey, my pain was minimal in comparison to what it is now and mainly focuses on my legs. To be honest, the leg pain generated pain significant enough to make standing, let alone walking challenging and agonizing.
There is no denying that the leg pain I endure is a direct result of neuropathic pain due to my MS. Neuropathic pain is typically described as a burning sensation in the affected areas. This type of pain is caused by short-circuiting of nerves carrying signals from the brain to the body due to damage inflicted from MS. Not only does the painful sensation feel like burning, but also like a stabbing, sharp, and pressing sensation. For anyone that deals with this neuropathic pain, it can be acute or chronic, which I will explain further.
Acute Neuropathic Pain may be an initial symptom of MS or part of an MS relapse. This can be described as a rapid onset and is for a short duration. The four different types of Acute Neuropathic pain are:
Trigeminal Neuralgia is typically described as a sharp and or shooting pain in the face or jaw area. This pain may occur as an initial symptom of MS or as part of a relapse. Considering the location of this pain it has been misidentified as dental pain, but this is caused by damage to the trigeminal nerve. Like many other issues associated with MS, this pain is unpredictable and comes and goes as it pleases.
Lhermitte’s Sign is a sudden and momentary sensation like an electric shock traveling from the back of the head, down the spine, and often extending into the arms and legs. This issue is often due to bending the neck forward. The pain indicates there was damage in the cervical spine caused by MS, which could be the first sign of MS or a relapse.
MS Hug most commonly is due to damage to the spine due to MS. I do not like the name of this issue because it is a hug that no one in their right mind wants to have ever! The best way to explain how this feels is a tight squeezing sensation around the torso, almost feeling like the blood pressure cuff on your arm or possibly how it would feel if a snake wrapped itself tightly around the torso.
Paroxysmal Spasms can be described as a sporadic and painful tightening of muscles. This is commonly a brief twitching that comes on suddenly and disappears as quickly as it came on. Frequently, this is felt in the arm or leg and occurs several times throughout the day and or night.
Chronic Neuropathic Pain tends to be the continuance of acute neuropathic pain I previously explained. When MS is involved, the pain can be experienced daily or nearly daily but is often unpredictable. When someone endures acute neuropathic pain, the likelihood it will become chronic is significantly higher. Some specific issues can increase this type of pain, including higher levels of stress, fatigue, illnesses, and becoming overheated.
Unfortunately, pain plays a vital part in many illnesses. Most of these illnesses are lifelong because cures have not been discovered as of now. Pain is not easy to live with, which is why it is so important to continue searching for various ways to keep the pain as under control as possible. I do not plan on allowing the pain I experience to dictate my life but will use the pain to fuel my determination to find pain relief strategies. Throughout my 20 plus years of living with various severities of MS pain, I have learned ways to tolerate the pain better including but not limited to the following. I say not limited to because I am sure there are many other amazing ways to handle pain and if you have any ideas, please share!
Utilize your breathing:
Of course, when the pain becomes high it is common to become increasingly tense. During these times it is crucial to try attempting relaxing techniques in a quiet, comfortable body position, and block out any distractions. You can envision the area below the navel or the area your pain is in and breathe into that area calmly, filling your abdomen with air and slowly exhaling. Imaging a deflating balloon may help with this part.
Decrease stress in life:
Pessimistic emotions such as depression, anxiety, stress, and all other negative emotions can drastically increase our body’s response to pain. Once we learn how to overpower the nagging stresses we may feel, we are likely to feel less pain. I think we have all heard that stress is a silent killer and I do passionately believe this.
To be completely honest, stress has been the most common culprit when my pain becomes more intense. Many techniques can help reduce stress, but everyone is different with what will work best for them. Often soothing and calming music can create a relaxing environment, which may promote feelings of less stress. Truthfully, most types of music will relax me because I enjoy listening to the lyrics and feeling what the songwriter was feeling.
Natural Endorphins Through Exercise:
When we are experiencing constant pain, it is very understandable we do not feel like we can be active. We may think the activity will make the pain we already feel worse, but that is not always the situation. Often when we are challenging ourselves physically, it can be beneficial if it is not too hard, long, or too much exertion. It has been stated that exercise strengthens muscles, which can help to reduce additional pain or further injury. It is advised to discuss exercise regimens with a professional because they will have the most knowledge and be able to describe what the best possible exercises would be for everyone.
Understand that alcohol creates problems:
Pain and alcohol cause problems with sleep. With that being states, drinking less or none may improve the overall quality of life, decrease pain levels, and enhance sleeping quality.
Journal daily activities and pain:
To treat pain effectively, it is important to be able to explain how we are feeling to our specialists. It is easy to forget things during doctor’s appointments because we might feel flustered, which is why it is crucial to document daily pain levels and what activities may have caused them. We will be able to discover what we were doing before the times when pain is highest. It could also be beneficial to document daily meals because some foods can increase pain.
Beneficial to maintain a healthy diet:
There are several reasons a well-balanced diet is of vital importance to one’s overall health. Nourishing our body with this type of diet can assist the digestive process, decrease the risks of heart disease, provide weight control, and boost blood sugar levels. Deciding to follow a low-fat and low-sodium diet the options can include the following: fresh fruits and vegetables, cooked dried beans and peas, whole-grain bread and cereal, low-fat cheese, milk, yogurt, and lean meats. A few examples of lean meats are beef, lamb, veal, pork, chicken, turkey duck, fish, and seafood (fish, prawns, crab, lobster, mussels, clam, etc) I do not eat seafood so I am not 100% sure what somethings are, but you might enjoy seafood and know a lot more than I do about it.
Discover enjoyable distractions:
If we allow ourselves to focus solely on our pain, it will get worse before it gets better and consume our life. Activities that keep the mind busy and thinking about other things besides the pain can be a successful way to decrease pain. Even if this is only for a short time, I think it is worth trying, don’t you? Sudoku puzzles are thought-provoking and fun, or at least I think they are.
Life with a painful chronic illness can be incredibly challenging, but I think together as a community we can help one another through these times. I hope the information I have shared in this post will be helpful for you or someone you know. Please just remember that I am not a medical professional and everything I have written was based on research and personal experience.
While I have been dealing with pain for over 20 years, I have been able to expect it, but I do not enjoy it obviously. Some days are worse than others and on the truly miserable days, I will keep fighting my battle because I am not ready to surrender to it. I guess it is the same with anything, good and bad days come and go, but they do not need to restrain life!
Thank you for taking the time to read this post. I know it was a little longer than my normal posts, but there was a lot of valuable information to share. I am looking forward to reading your comments and I will respond to all comments as quickly as I can. I hope your week is going well and you are staying as safe as you can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
~Terms to know when living with Multiple Sclerosis~
Whether you are newly diagnosed with Multiple Sclerosis or you have been living with MS for many years, you already know it is hard enough living with MS. Then adding learning and remembering an entirely new vocabulary makes things even more challenging, and confusing. I know there are times I still get a little flustered when talking to my neurologist or try explaining to someone the way I am feeling. I am going to share some useful terms to try to help make things somewhat easier to understand. Please keep in mind that I am not a doctor or medical professional, just a person that has lived with MS for more than twenty years.
Fatigue is one term we are probably all too aware of. This is one of the most common and important symptoms relating to MS. It has been suggested by the National Multiple Sclerosis Society, that this affects about 80% of all people living with MS.
Vision problems tend to be the first sign of MS for many people. This was the way the doctors discovered that I had MS. I think I have told y’all before, I had gone to the eye doctor thinking I was going blind in one eye, but the doctor said as gently as he could that he thought I had MS. I was terrified and only 19 years old, so I was still a child with a naïve mind. Inflammation of the optic nerves is knowns as optic neuritis. This can cause several problems, such as blurred vision, eye pain, and/or blind spots.
Brain fog is not a medical condition, but a term that is used to explain certain symptoms affecting the ability to think. Brain fog can make thoughts seem cloudy and you are not able to think clearly. This might cause you to feel confused, disorganized, and/or find it difficult to focus or put thoughts into words. This is also sometimes referred to as MS brain, cog fog, or cotton brain.
Slurred speech is often due to the loss of coordination of the tongue, lip, cheek, and mouth muscles. This loss of coordination may also result in trouble swallowing.
Loopy, which can be best described as feeling tired and/or almost like you are drunk.
Jelly leg, which may be referred to as jell0o legs or noodle legs. When experiencing jelly legs, you are legs will not work correctly.
Hallway pinball is when your walk is weaving from side to side. With MS, your legs may sometimes feel wobbling, weak, and tired. You might lose some control of your legs and when walking down a hallway, forcing you to bounce back and forth from side to side like something you would see on a pinball machine, hence the name.
Wooden leg or legs is a phrase that is used to describe the stiffness in the legs.
Foot drop is a term used to explain weak muscles that make it difficult to lift the front part of your foot or feet as you walk.
One major symptom of MS is chronic or acute pain. Shooting pains are typically acute, which means they come on suddenly, intensely, and then disappear. Pain is something I have battled with for the past 20 years and it does not get easier with each year that passes. However, I will not allow the pain that my life is plagued with bring me down and will always try to continue pushing through it, no matter how awful it gets. Truthfully, the pain does get worse when it rains or I am stressed. Lhermitte’s sign is a type of shooting pain. This is a sudden sensation that mirrors an electric shock passing down the back and into the spine and might radiate out into your arms and legs. This is usually triggered by bending your head forward towards your chest.
MS hug is a type of hug I never want. This term describes a constricting pressure surrounding the chest or waist area. It feels like there is a snake around you and just continues to squeeze or at least that is how it feels to me. The pain involved with the MS hug can range anywhere from mildly annoying to extremely annoying and tends to come along with a burning sensation. An MS hug is caused by spasms of the muscles between the ribs.
Spasticity, also referred to as spazzy. This is a common symptom of MS and can occur in any area of the body, but most commonly is in the legs. With this, the muscles might feel simply tight or can be extremely painful. There are two types of spasticity:
1. Flexor affects the back of the leg and upper thigh.
2. Extensor which affects the front of the upper thigh and inside of the upper leg.
Twitchy means you are experiencing twitching from spasticity.
Considering MS affects the central nervous system, the pins and needles sensation is common and most often felt in the limbs. This has been something I have dealt with for years and it is not easy to deal with. Even though I am on a high amount of Gabapentin, I do still feel this every day of my life.
Thank you for visiting my site today. I hope you found this information helpful or at least made things a little clearer. Believe me when I say, I understand how hard it is to remember every term used in the medical field and I have learned more by sharing this information with y’all. I think we can all continue to learn more, and we can help one another with this learning curve. I would love to read your comments on this post, 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!