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!
For many years now, one of the most consistent parts of my life has been the pain issues. Living with pain 24/7 is not easy but most pain I can deal with. I suppose I have learned how to continue living my life, despite the pain because I have realized it was not going anywhere. Over the years, there have been several frustrating things I have encountered when I would say, “If you can’t beat them, join them.” There are no ways to join the pain, so acceptance is the next best thing to do.
Regardless of how I have learned to live with pain, there is one type I am unable to tolerate. Everyone handles pain differently, but for me, head pain is the most unbearable. Unfortunately, headaches are something I have endured long before I was diagnosed with Multiple Sclerosis. One of my first memories of having a headache was as a child. A little girl in kindergarten getting off the school busy with so much head pain I was on the couch all night unable to move.
The painful truth about headaches is, they seem impossible to get used to. All I can do is lay down in a dark and quiet room with an ice pack on my head waiting for the pain to lessen. Every headache I get is a miserable experience that I would not wish on anyone, even my worst enemy.
Since Friday evening, I have been battling with a sinus/migraine. A normal sinus headache or migraine are bad enough on their own, but to gang up on me was just evil. Nothing was helping to ease my pain. I tried an ice pack on my head, but it continued to get too warm. I took Excedrin, Advil, and Sudafed, but it refused to ease up. This double hit of head pain caused me to feel nauseous and dizzy. After staying on the couch with my cats trying their best to make me feel better all day yesterday, I am finally somewhat better today. As I write this post, I am still dealing with the head pain, but I can tolerate it much better now.
Several years ago, when I was getting these nasty migraine/sinus headaches on a regular, I tried going off the Gilenya that I take for Multiple Sclerosis. I had known that sinus issues were a side effect of Gilenya and thought if I went off the source, the sinus headaches would stop. Of course, my doctor advised against this, but I was so sick and tired of the sinus pain, I was willing to do anything to put a stop to it. Unfortunately, going off the Gilenya for a short amount of time caused the MS to get worse and I ended up with additional lesions.
I made the decision years ago that I would rather endure the head pain rather than allow the MS to get worst. Gilenya has been a saving grace because it has slowed the progression of the MS and that means more to me than not having head pain. Yes, I do get sinus and or migraines weekly, but at least my MS is not progressing and putting me in a wheelchair. NO, being in a wheelchair is not the worst thing that could happen, but it is something that I have been terrified of since being diagnosed with MS when I was 19 years old. I will continue to fight the MS with everything I have and if that means dealing with the head pain, so be it!
Thank you for visiting my site today. I hope you are having a great and safe weekend. I am sure y’all have heard that COVID numbers are increasing again, so I hope you are either already vaccinated or plan to do so soon! I would love to read your comments on what I have shared today and 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!
I hope y’all have had a wonderful week and you are looking forward to the weekend. I managed to fall behind with my blog and still have a few comments to respond to. The past few days I have been consumed with either a migraine or back pain that was so awful I could hardly do anything. Wednesday morning, my back pain was in a different location than normal. On a typical day, it is my mid to lower back that is in pain, but Wednesday morning it was only in my lower back and it took me at least fifteen minutes to pull myself from the bed. This pain was like nothing I have experienced before and had me mildly concerned. I did not lift anything in the previous days, so it did not make sense and I detest when things do not make sense.
I started having another mean migraine on Wednesday that nothing would help it to ease up. Having a migraine and the unusual back pain was extremely frustrating and nothing was making any sense. I detest when things do not make sense because I am the type that needs logical answers. I guess with Multiple Sclerosis, answers are one thing I may never get.
I would assume I know why there were so many issues with pain and a migraine. I do believe I could make an educated guess because after dealing with this unpredictable and hateful illness and knowing my body better than anyone else. My assumption for these issues is none other than stress. I feel like I continue getting bad news daily almost like there is a sign on my head saying, “Please do something that is going to create more problems in life” on my forehead. I mean getting laid off on December 9th and two weeks later having my truck in the shop with an expensive repair, and then on Wednesday learning that my former company is not paying out for the PTO I did not use threw me into the worst stress tailspin.
I was counting on the PTO payout for bills, my husband’s birthday, and a few other things. I cannot say I am surprised that my former company was going to screw me over again. Apparently, my former company thinks it is perfectly acceptable to basically steal money from me and it seems they can do that legally.
I have been constantly looking for another job and it has been beyond frustrating. Many places are hiring for remote positions, but it has been almost a month and I am still unemployed. Being unemployed is causing my personality to change and I do not like it. I feel like my anger about what has occurred and keeps happening is causing me to be a little hateful. I love my cats more than I can explain, but my mood even has me being angry with them and not wanting to be anywhere around them.
I am trying my best to stay positive, but it is becoming harder every day. I keep trying to tell myself that everything happens for a reason and the perfect job is out there for me and will surface when the time is right. I do not know what I did wrong in a previous life to have to continue dealing with challenges, but whatever it was I am so sorry. I just really need a break and have something, just one small thing happen work out.
I am working on another post and will hopefully have it completed tonight. I have also been working on a short story to help build on the creativity I know that I have inside. Writing has been an outlet for me and even though two of my cats are doing everything possible to not let me write because they want my attention, it is still the only thing that lets me escape from reality.
Thank you for visiting my site today. I appreciate your time and look forward to reading your comments. I will be responding to comments today and tomorrow, so I will be caught up soon. I hope you have a lovely and safe weekend. 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!
I think everyone knows that I have lived with Multiple Sclerosis for over 20 years now. Of course, this does cause me to experience pain daily, but I have come to expect it and it does not force me to stop living my life. However, something I have experienced since I was a child is headaches. For the most part, none of the pain caused by MS will keep me in bed for hours or days, but head pain whether it is a headache, or migraine will put me in the bed with an ice pack on my headache for at least hours and sometimes even a few days. These are not easy to handle, but it was a lot worse as a little girl because I would get off the school bus and not move from the couch until the following day.
This is the post that I started research on over a week ago and was not able to complete it until now due to a headache that lasted six days. It is a little ironic that I could not finish a post about headaches due to a headache, but I guess it is what it is. Please remember that I am not a doctor or medical professional in any way, but the information provided in this post is from both my personal experiences and extended research.
Unfortunately, I am sure everyone around the world is familiar with some type of throbbing, uncomfortable, excruciating, and or distracting pain caused by a headache. Even though many of us have experienced this at some point in our life, it can be difficult to understand and know what kind of headache we are enduring. Some people do not know there are several different types of headaches. Honestly, even after dealing with headaches since I was a child, I did not have the knowledge of the ten different forms of headaches. Through this post, I am going to explain each different type and even ways to reduce them from occurring.
According to The World Health Organization, nearly everyone experiences a headache occasionally. Headaches can be described as pain in any area of the head, but the causes, duration, and intensity of the pain can be different depending on what type of headache it is. Not all types of headaches will require immediate medical attention, however in the event, you experience any of the following along with the headache, you should not postpone medical attention: stiff neck, rash, vomiting, confusion, slurred speech, fever of 100.4° F (38° C) or higher, paralysis in any part of the body or vision loss.
Primary headaches are the most common type. This type of headache is not triggered by something your body is dealing with such as illness or allergies. There can be either episodic or chronic. An episodic headache might occur often or occasionally and may last anywhere between a half-hour to several hours. A chronic headache is more consistent, which occurs most days during the most and can last days at a time.
Tension headaches can be chronic and are also a common type of headache. These may cause mild, moderate, or intense pain behind the eyes, in the head, and neck. They can be described as a tight band feeling around the forehead as well. Most people who experience tension headaches have episodic headaches that occur on average one to two times per month. The causes of these headaches are due to muscle contractions in the head and neck regions, which may be from a variety of foods, activities, and or stressors.
Some people that endure tension headaches might experience them after staring at a computer screen for long periods or even after driving for extended periods. For other people, cold temperatures may trigger a tension headache. Other triggers for this type of headache include alcohol, eye strain, dry eyes, fatigue, smoking, a cold or flu, sinus infection, caffeine, poor posture, emotional stress, decrease in water consumption, inadequate amounts of sleep, or skipping meals.
Considering tension headaches are commonly caused by specific triggers, it is important to try identifying what is causes these headaches to prevent future episodes. Starting a headache journal may help to determine causes. Document daily meals, beverages, activities, and any circumstances triggering stress. Each time you have a tension headache, document this and after a few weeks or months, you should be able to notice a common denominator to determine what is triggering your tension headaches.
Cluster headaches are distinguished by an extreme burning and piercing pain, which typically occurs around or behind one eye or on one side of the face at a time. Swelling, redness, flushing, or sweating commonly occurs on the side that is affected by the headache. Sometimes nasal congestion and eye tearing will occur on the same side as the headache.
Cluster headaches are three times more common in men than in women. They generally occur in a series; each headache can last between 15 minutes and up to three hours. Many of those dealing with this type of headache experience one to four headaches a day, typically around the same time each day during a cluster. Once one of the headaches is resolved, another will follow soon afterward. The series of cluster headaches can be daily for months at a time. During the months between the clusters, the individual will be completely symptom-free. These are a lot more common during the spring and fall seasons.
The pain from a migraine is a serve pulsing from deep within the head that can last for days at a time. These headaches can dramatically impact and limit the ability to carry out normal daily routines and activities. The throbbing sensation from a migraine is usually on one side of the head at a time. Those that have migraines are normally sensitive to light and sound. Also, nausea and vomiting may accompany a migraine. Approximately one out of five people with migraines have something known as aura before a migraine starts. Aura can cause people to see flashing or shimmering lights, zig-zag lines, stars, and or blind spots. This can also include tingling on one side of the face or in one arm, and difficultly speaking.
Migraines can run in the family or be associated with other nervous system conditions. Unlike cluster headaches, women are three times more likely than men to experience migraines. Unfortunately, people with post-traumatic stress disorder have an increased risk for migraines. There are certain environmental factors, such as sleep disturbances, dehydration, missing meals, some foods, hormone fluctuations, and exposure to certain chemicals that are the most common migraine triggers.
The following are the most common and effective ways to reduce migraine attacks:
1. Getting sufficient amounts of sleep. According to the US Centers for Disease Control and Prevention, most adults need seven to nine hours of sleep each night. Sleep allows our brain to calm and reset. While we sleep, there are chemicals released causing cortisol and adrenaline to back down.
2. Eating regularly with small portions throughout the day acts as a hunger preventative.
3. Monitor your caffeine intake. Some people may experience rebound headaches, which will be explained further in this post, from too much caffeine or withdrawal from it.
4. Stress is one of the most substantial triggers for a migraine attack. Taking time to relax and unwind can be incredibly beneficial and stop a migraine before becoming unbearable.
Secondary headaches are headaches that are caused by underlying medical conditions, such as a neck injury or a sinus infection. These are ongoing and may become a chronic issue. By treating the main cause of the headache, people will typically have headache relief. The following are types of secondary headaches:
Allergy or sinus headaches are due to an allergic reaction to something. The pain these headaches cause tends to be focused in the sinus areas and the frontal areas of the head. Those that endure chronic seasonal allergies or sinusitis are prone to these headaches. At least 90% of sinus headaches are in fact migraines that are commonly misdiagnosed.
The way sinus headaches are treated is by thinning out the mucus that built up causing sinus pressure. There are nasal steroid sprays, over-the-counter decongestants, and antihistamines that can help clear up the issues. Some may require a visit to the doctor’s office to get an antibiotic to help clear the infection and alleviate the headache and any other symptoms that might be felt.
Hormone headaches are something that women commonly experience and are often due to hormonal fluctuations. Things like menstruation, birth control, and pregnancy can affect estrogen levels and cause headaches. These headaches may occur right before, during, or right after menses, as well as during ovulation. On average, about 60% of women experience this type of headache. There have are other types of remedies discovered that may help decrease the amount of these headaches each month, which may include relaxation techniques, yoga, acupuncture, and eating a different type of diet.
Caffeine headaches, whether it be too much or quitting cold turkey, caffeine can contribute to headaches. Caffeine affects the blood flow to the brain, which creates several problems besides a nasty headaches. Anyone that has frequent migraines is at risk of triggering headaches due to their caffeine intake. Many people are used to a certain amount of caffeine each day, which acts as a stimulant, caffeine, and or withdrawal from it can trigger headaches.
Exertion headaches occur quickly after times of intense physical activity. Some of the most common triggers for this type of headache are weightlifting, running, and sexual intercourse because they cause increased blood flow to the skull and can induce a throbbing headache on both sides of the head. These headaches do not typically last long like many others do and will improve between a few minutes to several hours.
Hypertension headaches are due to high blood pressure and may indicate an emergency if blood pressure becomes dangerously high. This type of headache tends to occur on both sides of the head and will get worse with any activity. Those experiencing this form of headache may have vision changes, numbness or tingling, nosebleeds, chest pain, or shortness of breath. Once the blood pressure is under better control, the headache will also go away.
Rebound headaches can feel like a dull, tension-type headache, or be more extreme and intense pain, like that of a migraine. This type of headache is also referred to as medication overuse headache due to using over-the-counter pain relievers too frequently. Many people use over-the-counter medications such as acetaminophen, ibuprofen, aspirin, and naproxen believing they will help to decrease their headaches, but often end up creating more when using these medications for more than 15 days out of the month. Rebound headaches occur most commonly with OTC medications that contain caffeine. The best way to avoid these types of headaches is to discuss with your doctor medication that works as a preventative for headaches and does not cause rebound headaches.
A post-traumatic headache will evolve after any type of head injury. This type of headache may feel like a migraine or tension headache and will typically last 6-12 months after the injury happened. A few of the most common symptoms include dizziness, insomnia, difficulty concentrating, memory issues, sensitivity to light and sound, mood, and personality changes. Post-traumatic headaches may become chronic. Several treatments that may help to help this type of headache improve including physical therapy, occupational therapy, speech therapy, relaxation therapy, nerve stimulation, and cognitive behavioral therapy.
Thank you for visiting my site today. I hope the information I have shared with you was helpful for you or someone that you know. I know that dealing with headaches is not pleasant or easy, but we can find ways to get through them. If you have any other ways to deal with any type of headache, please share because I know it will help someone that is reading. I hope you have had a great and relaxing weekend and you are ready for the week to begin again tomorrow. I hope you never forget that I am always sending y’all LOT of love, comfort, support, and MANY positive vibes!
There have been many challenges we have faced during the past few years. All of this takes a lot of courage, perseverance, dedication, determination, and a great amount of internal strength. I completely understand how this can feel overwhelming and we might want to throw our hands up and give up on what we need and want. Sometimes it might feel like the battle within is too demanding, but if we do everything we possibly can and continue fighting we will eventually win the war.
For all of us that are living with a chronic and incurable illness, the obstacles may seem like they are endless and maybe they are. However, if we do not keep pushing through with all we can, we will never know what we are capable of. I have always believed that behind every door we close, something better is waiting around the next corner. We will not be able to know our full potential if we do not at least try.
All the small or large issues we deal with in life provide us with an opportunity and a learning experience. It might never seem like it at the time, but surviving these issues makes us the strong people we are today. It is crucial to view the struggles we face in life as a building block to the incredibly strong people we were meant to be instead of as an inconvenience.
If you take a few minutes to think about your life, would you be who you are today if it were not for what you have been through? Honestly, I do not know who I would be if I did not have the experiences I did have. Of course, not all our experiences have been pleasant and sometimes we do not want to remember them because they may have been awful. The hardest things we have gone through gave us the most valuable lessons.
You do not have to answer this question but at least think about these questions. What were a few of the most hellacious, painful, and complicated things you have gone through in life, and what did you learn from those experiences? I am not going to go into detail about one of my experiences that was like this, but I will tell you this ordeal taught me to be strong and to never allow anyone to mistreat me. For the most part, we can decide who we allow in our life.
It is extremely important to understand that trust is something that is earned and not given immediately. It is not easy, but we should try to at least give others the benefit of the doubt, but without putting too much trust into that person. The hard part about this is, we are all human and sometimes people will do something to betray our trust. Once trust is lost, it is not easy to get back because it takes a lot of work and healing from whatever hurt the betrayal caused. There is not a timeline to when we “should” heal from times when another’s deception because we are all different and heal in various ways.
It is a little ironic that I started a post about headaches and have been dealing with one ever since. I am hoping for the headache I have had for several days will get better soon, so I can finish the post to share with y’all. I think the information that I have so far will be beneficial to anyone that experiences headaches more than just occasionally. Considering I have been dealing with headaches most of my life, I would have thought I would be used to them by now, but unfortunately, I am not. Even though I deal with pain 24/7 the pain does not stop me from doing what I want in life, but a headache will stop me completely. I guess no one has or could get used to them though.
Thank you for visiting my site today. I am sorry that I have been a little absent lately, but hopefully that will change soon, and this headache will go away. I am looking forward to reading your comments, which I will respond to as quickly as I possibly can. Even though I know the COVID cases as decreased greatly, I hope you are all continuing to stay as safe as you can. Please remember that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
In previous posts, I have explained that Multiple Sclerosis is an autoimmune and neurologist illness. What this means is MS affects the nerves, but also the body’s defenses to fight disease fails and begins to attack the cells. The immune system attacks the body’s myelin when you have MS. Myelin is a protective substance covering the nerves, so when this happens it leaves the nerves unprotected. The nerves being unprotected makes them vulnerable to damage, which causes them to not function as they would if there was healthy myelin. The damaged nerves create a wide range of symptoms that vary in seriousness.
A few additional facts regarding MS to understand are:
1.Multiple Sclerosis is a chronic condition, which means it is a lifelong condition and it does not currently have a cure. It is important to understand that even though there is not a cure, it is not fatal. There are 2.3 million people worldwide living with MS and they all have the standard life expectancy. It is only in rare cases there might be complications severe enough to shorten the life of a person. Overall, with MS most symptoms can be regulated with medication, adjustment to lifestyle, or both.
2. Multiple Sclerosis affects younger adults, and often women. Although MS can be diagnosed in children and older adults, people are mainly diagnosed between the ages of 20 and 50. Women are two to three times more likely to develop MS than men. If the person is diagnosed is over the age of 50, this is normally called late-onset MS. It can be challenging for older adults to find a diagnosis of MS due to other age-related conditions having similar symptoms.
3. Multiple Sclerosis can be arduous to diagnose. Often symptoms and single tests are not enough to be able to make an accurate MS diagnosis. The challenges are due to the symptoms mirroring the symptoms of other conditions. Numerous tests that can be used to rule out other potential causes of the symptoms a person is experiencing, which include:
A. Blood tests to rule out Lyme disease, which can trigger the same symptoms of MS.
B Neurologist Exam
C. Magnetic resonance imaging (MRI)
D. Visual evoked potential (VEP) test, which looks for impaired transmission present along the optic nerve pathways.
E. Cerebral Spinal Fluid (CSF) Analysis is a way to look for conditions affecting the brain and spine. The CSF analysis is a series of laboratory tests performed on a sample of the CSF, which is a clear fluid that cushions and delivers nutrients to the CNS.
F. Optical coherence tomography (OCT)
4. The symptoms involved with Multiple Sclerosis vary and the list is long. The truth is, there is no such thing as typical symptoms because everyone that lives with this illness experiences it differently. Some symptoms may simply come and go, or some may regain a lost function, such as bladder control. A few possible symptoms include numbness and tingling, vision problems, balance and mobility issues, and slurred speech. The unforeseeable pattern of symptoms is due to whatever nerves are being attacked by the immune system at any given time. Most things are just unpredictable, and we must deal with the issues as they come up.
5. Multiple Sclerosis is comprised of relapses and remissions. Remission is the period of time when the symptoms have improved. Remission does not indicate the MS is gone, but these periods may last days, weeks, months, or in some cases years. Relapse or exacerbation is the incidence of a new symptom or worsening of an old symptom. This occurrence can be mild or severe enough to interfere with the ability to function. No two exacerbations are the same, so it is important to consult with your neurologist when you deal with one.
6. There is a cognitive part to Multiple Sclerosis. All the damage MS causes to the nerves can also impact critical thinking and other cognitive (mental) skills. It is not unheard of or abnormal for people with MS to have issues with memory and or finding the right words to convey what they are thinking. A few other cognitive effects may include:
*An inability to concentrate or pay attention
*Decreased problem-solving skills
*Difficulty with spatial relations, which means the ability to perceive two or more objects positioned in space relative to oneself and in relation to each other.
*It is normal for cognitive problems to create frustration, depression, and/or anger, but these are issues your doctor can help monitor and manage.
7. Multiple Sclerosis has been labeled as an “invisible illness” or “silent disease”, which makes sense because at face value people with MS look no different than those without MS. Symptoms such as blurred vision, sensory problems, and chronic pain cannot be seen by anyone else. However, some people that do require special accommodations, even though they do not have mobility issues and appear to be fine. One reason why MS has been labeled a “silent disease” is that even during remission, the disease is still, unfortunately, progressing, which has been referred to as “silent progression” of MS.
8. Staying cool whenever possible is greatly beneficial. Heat intolerance is another common issue that can cause an exacerbation of symptoms. People with MS may experience an increase of symptoms from hot weather or sun exposure, fever or illness, hot baths, or showers, and overheating from exercise.
It might be helpful to use fans and air conditioning, cool drinks, and/or icy compresses to stay cool. Wearing layers of lightweight clothing that is easy to remove may serve as a benefit as well. Also, utilizing a cooling vest that can be purchased online. Although people might experience a heat-related relapse, it is important to understand that heat does not cause MS to progress any faster.
9. Vitamin D plays a vital role in Multiple Sclerosis. Research has indicated a link between Vitamin D and MS, which showed the nutrient can function as a protector against MS and possibly lead to fewer relapses. Sunlight triggers the production of Vitamin D in the body, but that sun exposure can also lead to heat-induced symptoms. There are plenty of ways to increase Vitamin D without sun exposure which include fortified milk, orange juice, cod liver oil, salmon, tuna, and eggs or there are also Vitamin D supplements available.
I hope you found this information useful for yourself or someone you know. Please just keep in mind that I am not a doctor or medical professional, I am just someone that has lived with MS for over 20 years. I have experienced most of what is in this post, but that one thing I did not do when I was diagnosed was have the CSF Analysis. I have heard it is not pleasant, but people do live through it. There are still a few days left in the month of March and I do plan on doing a few more posts for Multiple Sclerosis Awareness. I do feel like there is a lot of information available and it needs to be shared with as many people as possible!
Thank you for visiting my site today. I always appreciate your continued support and truly love reading your comments. I hope you are having a good week and you are staying safe because COVID is still a threat. 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!
Hello Tuesday, my friends! I was not able to do my typical Motivational Monday post because I have been dealing with a nasty migraine for over two days now. The worst of this evil migraine was Sunday evening into Monday, but it is trying to let up a little now. Work yesterday was awful because looking at a computer screen only increased the pain I was having in my head, but I still did the best I could. I was supposed to have a meeting yesterday afternoon, but thankfully the meeting was postponed until this afternoon, I am not sure how well I could have dealt with a meeting with the migraine.
Of course, I endure pain every day of my life and the only pain I am not able to handle well is head pain. My husband was SO attentive and kept getting me fresh ice packs to put on my head and was willing to do anything else I needed. An ice pack typically helps relieve my head pain, but it was hardly touching the pain. When I say nothing provided any relief from the pain, I really do mean NOTHING at all even lessened the pain!
Considering it is still Multiple Sclerosis Awareness month and I have lived with this illness for over 20 years, I am planning to do a few more posts about MS. I know I have mentioned my first neurologist to y’all before. Dr. Kaufman was the first doctor I saw for this unpredictable and irritating disease. No matter how much I fought him and/or gave him a hard time, he never gave up on me. The man had the patience of steel and a heart of gold. His Nurse Practitioner was also a gem and was very compassionate. The two of them as a team were one of a kind and I will never forget either of them.
I did learn some sad news about my previous neurologist over the weekend. Overall, he is fine and healthy but lost his wife to cancer. This nice, loving, compassionate, trustworthy, and amazing man is one of the BEST and I hate to know he has gone through another tragedy in his life. It does not seem like the man cannot catch a break. I sent him a message with my condolences on Facebook, not that he checks those messages, but I did ask the former NP that does stay in touch with him to let him know he is in my thoughts and that I miss him. Then to give him a laugh, I asked the NP to tell him if he moves to the city I live in I will pay for his house, if he will treat me!
Once my evil migraine finally started to settle down and I thought I would be able to finish the post I was working on, my legs, feet, and hands started to misbehave! They decided to work together to create the annoying tingling feeling, with a touch of pain! When this happens, there does not seem to be anything that will relieve the problems. I guess I should be used to this by now, but unfortunately, I am not!
Yesterday was busy at work, which must have been a fluke because today is not at all busy. I am going to try finishing one of the posts about Multiple Sclerosis that I started and will hopefully finish it today, but we will see! To be honest with y’all, I do have a slight and manageable headache, which I think is a result of stress. My legs, feet, and hands are still misbehaving, but it is not as bad as it was last night, and I think is because of the rain we are having today.
Thank you so much for visiting my site today. I hope you are having a good week, feeling the best you can, and staying safe! I do look forward to reading your comments and 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!
There is so much focus on getting at least 8 hours of sleep each night to be more productive and feel most energized. This tends to make people center their attention only on the night but is just as important to consider what we can do during the day to help us get a good and restful night’s sleep.
One common mistake people make after a bad night’s sleep is to take it easy or rest up. Often our energy level feels like it is a limited resource, and we try to reserve it, but this is not the best idea. We can increase our energy and reduce fatigue by doing more, instead of less. Now allow me to explain further with 4 simple key areas.
Continue with your full schedule
Whether you have work, school, or both do not call in sick and/or cancel appointments. Maintaining the same schedule, you had planned when you anticipated sleeping well can serve as a benefit. Your typical schedule might keep you busy enough so you do not have time to think about how tired you are. Another benefit is the next time you lay your head down to fall asleep, you will not have to stress about how you are going to deal with a bad night of sleep because you know you can deal with it the best way possible by staying busy.
Avoid low energy people
When it comes to other people, your first thought might be avoiding high-energy people because you are feeling so low energy. Of course, I know right now with COVID we are not around many people, but it is possible that spending time with others that make you feel more energized and alive will increase your energy. Whether it is due to COVID or you are more introverted, find just one friend or family member you enjoy spending time with, but do this safely. This might assist you in reducing moodiness and make your mood better.
Maintain confidence in your body and relax your mind
Throughout the day, do not dwell on how you are going to catch up on sleep. Understanding that our body can adjust to most situations and will help us sleep more soundly and restful when necessary. Our body is more resilient than we give it credit for and it knows how to take care of itself. Going to bed earlier than normal or taking naps will create problems with our internal clock and we will have more issues in the long run, which is why it is crucial to maintain our normal schedule. We need to trust our body to get the sleep we required and wasting time watching the clock and calculating the amount of sleep we will get only generates stress and irritation, which will make sleep nearly impossible.
Do not rely on caffeine or coffee
Natural methods for increasing energy are much better for our body. We should always try to avoid caffeine pills and energy drinks because they are only a short-term fix, but the crash and/or other negative side effects can be awful, and we will wish we did not consume anything. The benefits you can get from sunlight, talking with friends, or exercise, even just a short walk may be a lot more powerful for the long-term.
Over the years, I have dealt with sleep problems and mainly because my mind is always on overdrive. The nights that I struggled with sleep and then the next day felt exhausted with hardly any energy, but I did always push through the day. Normally, I can handle a lack of sleep well for a couple of days because I do trust that my body knows when it has had enough.
Something I have done without for over one year is caffeine. In the past when I was low energy due to a bad night’s sleep, I would consume a great amount of caffeine. Honestly, to me, the crash from caffeine is worst than the tired feeling because it can produce awful headaches and I already endure these so I do not need any additional headaches.
I hope you found the information I have provided helpful! I would, of course, love to know what you thought or if this was how you normally handle a bad night’s sleep. I hope you had a lovely, relaxing, and safe weekend! Daylight savings tends to throw my internal clock off, so I am still awfully tired today. I guess it is a good thing I have a day to get used to the time change before another week begins tomorrow or it would be a long week! Thank you for taking the time to read this post! I hope the rest of your weekend goes well! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
As you read this post, please be advised that I am not a medical professional. The information in this post is based on the research I have done since being diagnosed with this disease 20 years ago. The one thing about this disease that is important to understand is, it is extremely unpredictable and everyone, no matter what type of MS they have experiences it different. It does not matter if two people have the same type of MS, everyone experiences and deals with it differently.
Multiple Sclerosis (MS) is an autoimmune disease that means that the body’s immune system attacks its tissues. This is a very unpredictable disease, and everyone experiences it differently. In this post, I am going to explain the four different types of MS and the distinctive characteristics of each type.
Radiologically Isolated Syndrome (RIS), is not considered part of the MS path, but has been utilized to categorize those with abnormalities on the brain and/or spinal cord that are consistent with a lesion of MS, and do not have any current or previous neurological symptoms or abnormalities discovered on a neurological exam. Many individuals had an MRI due to symptoms, such as headache, and revealed lesions appearing similar to those found in MS. During a study in 2020, it was uncovered that more than half of individuals with RIS will develop MS within 10 years.
Clinically Isolated Syndrome (CIS) is a path of MS. CIS is referred to as the first occurrence of neurologic symptoms, which last at least 24 hours. This occurrence is caused by inflammation OR demyelination in the Central Nervous System (CNS). CIS can be classified as monofocal OR multifocal. Monofocal is when a person experiences a single neurologic sign or symptom that is caused by a single lesion. An example of this is an optic neuritis attack. Multifocal occurs when a person endures more than one sign or symptom caused by lesions in more than one area. An example of this is an optic neuritis attack and tingling in the feet. An important thing to be aware of is, just because an individual experiences CIS, it does not mean they will develop MS. The healthcare provider faces two challenges with diagnosing CIS:
1. Determining if the person is experiencing a neurologic episode caused by damage to the CNS.
2. Determine the chance from the damage the person is experiencing is a form of demyelination that will develop into MS.
Relapsing-remitting MS (RRMS) is the most common and the type I was diagnosed with 20 years ago. Approximately, 85% of individuals with MS are originally diagnosed with RRMS. This type of MS has evidently defined the attack of new or increasing neurologic symptoms. The attacks are also referred to as relapse or exacerbations and are followed by periods of partial or complete recovery, which is also known as remissions. While there is not any obvious progression of the disease during a remission, symptoms may disappear or some of the symptoms may continue and become permanent.
RRMS can be further described by inflammatory attacks on myelin, which is the layers insulating membranes surrounding nerve fibers in the central nervous system (CNS) and the nerve fibers. Throughout the inflammatory attacks, activated immune cells cause small, restricted areas of damage that create the symptoms of MS. Considering the areas of the damage varies, no two people will experience the same symptoms at any given time.
Those who have RRMS tend to have more brain lesions and more inflammatory lesions that appear on the MRI scans. Individuals are often diagnosed with RRMS in their 20’s and 30’s but can also occur in both childhood and later adulthood. Women are diagnosed 2-3 times more often than men.
The symptoms of RRMS can and normally are different for each person, but there are some common issues. The most common symptoms for RRMS are fatigue, numbness, vision problems, spasticity or stiffness, bowel and bladder problems, and issues with cognition. It has been suggested that a transition from RRMS to years SPMS typically will take place in people who have lived with RRMS for at least 10, but this does not always happen.
Secondary Progressive MS (SPMS) is another type of MS. This type of MS usually follows a period of the relapsing-remitting disease, the levels of disability gradually increase with or without evidence of disease activity.
SPMS is basically a second phase of the disease. Individuals with this type of MS may or may not ensure relapses caused by inflammation. However, the disease slowly changes from the inflammatory process like seen with RRMS to a consistent phase classified by nerve damage or loss.
Before the availability of disease-modifying therapies, some studies suggested that 50% of those diagnosed with RRMS would shift to SPMS within 10 years, and 90% would change within 25 years. The many different medications that are available in 2021 have provided a positive impact on disease progression. However, experts say it is still too soon to know the extent to which these disease-modifying treatments will change or slow the transition to SPMS.
Considering the transition from RRMS to SPMS is a gradual process, the healthcare provider will not know when exactly it occurs. The challenges the healthcare provider faces is establishing if:
1. The worsening is permanent, but some damage remains after the inflammatory attack ended, meaning the individual is experiencing an RRMS disease course.
2. OR the disease continues to get worse, but the individual is no longer enduring an inflammatory relapse, which would indicate the person has transitioned to an SPMS disease course.
The fourth type of Multiple Sclerosis is Primary Progressive MS (PPMS). This type is classified by worsening neurologic function from the onset of symptoms without early relapses or remissions.
Each person that lives with PPMS will experience this disease differently. Commonly, PPMS may have short intervals when the disease is stable, with or without a relapse or any MRI activity, as well as duration when there is increasing disability occurring with or without new relapses or lesions on an MRI.
PPMS is different from RRMS and SPMS because it does not include the same issues with inflammation. Although people with PPMS have fewer brain lesions than those with RRMS and SPMS, they do tend to have more lesions on their spinal cord. Typically, people with PPMS experience more problems with walking and may require more assistance with everyday activities.
From my own experience with Multiple Sclerosis, I was a terrified child when I was diagnosed. I was only 18 years old and did not know much about the disease. In my naïve childlike mind, I was going from being diagnosed to a wheelchair and then death. Yes, I was diagnosed, but did not end up in a wheelchair yet. I think it is extremely important for anyone newly diagnosed to do research, build a strong and honest relationship with a neurologist, and have a strong support system. It can be a scary and terrifying diagnosis, but a normal life can still be lived, especially one the right disease-modifying treatment is found!
Thank you for visiting my site today. This is my first post about Multiple Sclerosis for MS Awareness Month. There is so much information out there about this disease and I only wish I had this when I was diagnosed all those years ago. I can remember how I felt because I was alone in the exam room when I heard the news and it felt like the room was spinning out of control. I did not want anyone to know I had MS, but that was rather silly. Now days, I am open about it and want to help others that are dealing with this disease. I want y’all to know, no matter how alone you feel, you are never alone! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! I also want you to feel free reaching out to me any time if you ever need any extra support and help!