Each day I wake up wondering how I am going to make it through the day. And at night I wonder if it’s my last. The pain is excruciating and the guilt of what I’m putting my family through is overwhelming. But I continue to fight on. Trusting that this too will pass. I find myself reading Psalms 71 over and over again, for in my lifetime Yahuah my Elohim has proven to be my doctor when I am weak. I give my all over to Yahuah and ask for healing from this debilitating disease and ask that he guides those that I entrust for medical care.
I have to see a neurosurgeon in July about scheduling surgical procedures on both my C-spine and my L-spine. Both areas are affecting my nerves and spinal cord. Scared? Yes I am, because of the possibilities of paralysis. Right now I am truly dependent on my family support for what many might take for granted; and also a walker to get around. I am looking into acquiring help for my entrance to be made handicap accessible.
As always I ask for prayers and I will continue to pray for you.
Peace and blessings to you always and forever more,
Sex. A single syllable word that can evoke an array of emotions ranging from excitement to discontent or even hate. Three single letters coming together to form a word that has an unrelenting force strong enough to unite or destroy a relationship with virtually no assistance. The very word itself can stand on its own or be dissected and discussed for hours with varying conclusions as to what it means. What does it mean? Even that question can’t be answered without a debate or argument from differing perspectives.
How can an act between two people that has been around since the beginning of time have such an effect on the way we think, feel, and react to each other?
Simply put, why does the word ‘sex’ affect our emotions in different ways?
For many, sex is simply a pleasurable activity to pursue because of the feelings it arouses and, hopefully, to achieve orgasm. Surprisingly though, only 75% of men reach orgasm during sex and a staggeringly low 29% of women reach orgasm (“10 Most Surprising Sex Statistics,” n.d.). Even if orgasm isn’t achieved, however, this group of people do it because it feels good.
Often, significant others express their love for each other through sex because words can put restraints or boundaries on those feelings. Being intimate with a partner provides a way to connect, share, and grow together as a couple. It can be engaging, provocative, and alluring all at once. It’s no surprise sex is appealing to a large percentage of the population. In fact, the average man thinks about sex 19 times a day and the average woman thinks about sex 10 times a day (“Health Myth: Do Men Really Think About Sex Every 7 Seconds? | GQ,” n.d.).
Just as some are attracted and excited by the thought of sex, there are some that are turned off by it. Various reasons can cause these negative associations and, for those living with fibromyalgia the very mention of the word can stir up feelings of pain, discomfort, anger, or other negative thoughts. Why?
Why is sex painful for a fibro body?
Sex can be a pain – literally – for a person living with fibromyalgia. Allodynia is common when dealing with fibromyalgia: when a person experiences pain from something that shouldn’t normally cause pain such as clothes, bedsheets or even air moving across the skin. Living with a sensory sensitivity causes a touch from a person to be painful no matter how gentle or caressing it’s intended to be. Allodynia prevents a person from being too close to another person making it even more difficult to have a desire for intimacy.
Pain on the Brain
No matter where pain is felt on your body, it is transmitted from the nerves to the spinal cord which is then carried to your brain. Your brain then registers the pain and causes the body to react accordingly to the pain messages received. This can be seen by quickly jerking a hand from a heat source, yelling out in pain when you stub your toe, or crying when your feelings are hurt.
With a fibro body, the sensitivity of the nerves is turned up, causing them to continuously feel pain and sending those pain signals up to the brain. The brain, in turn, concentrates on that perceived pain and coordinates the body to react to it. Since the brain is the most sensitive sex organ in the body, it makes it hard to focus on sex if our brain is constantly focused on pain.
Loss of Libido
If the negative effects of fibromyalgia on our ability to enjoy sex weren’t enough, it seems like a cruel joke that the treatment could make it even worse! Currently, there are three prescribed medications approved by the Food and Drug Administration to treat fibromyalgia: Lyrica, Cymbalta, and Savella. Antidepressants, pain relievers, muscle relaxers, antiseizure medication, and benzodiazepines have been used to ease fibromyalgia symptoms, but they are not specifically approved by the FDA for fibromyalgia.
The effectiveness of the medications as well as their side effects vary from person to person, but one of the most common side effect is the loss of libido. The reason a person’s libido is affected is because of the medicine’s effect on the production of brain chemicals. To relieve fibromyalgia symptoms, certain chemicals must be raised, in turn, lowering libido. Some of your symptoms may be relieved, but the tradeoff is your desire to have sex decreases or goes away altogether.
Muscle Pain and Stiffness
One of the most common symptoms of fibromyalgia is muscle stiffness, tenderness, and pain. Dr. Ginevra Liptan, founder of The Frida Center for Fibromyalgia located in the United States, states in her book, The FibroManual: A Complete Treatment Guide for You and Your Doctor, that the fibromyalgia brain is stuck in a stress response (Liptan, 2016, p. 20). This stress response keeps the body in a continuous state of a ‘fight or flight’ status. The ‘fight or flight’ response has our brain and sympathetic nervous system thinking it’s under attack triggering many reactions in our bodies to happen or to prevent them from happening. One of the reactions that stays on is the tension of our muscles.
Constantly tensed muscles can leave a person feeling fatigued and stiff throughout the entire body. Sex is an active exercise that requires flexibility and the use of various muscle groups. The muscle pain and stiffness can prevent a person from enjoying sex or being able to move with ease and free of pain. The results of an intimate session in the days following sex is often an increase in symptoms, or flares.
Difficulty with Sexual Performance
All the reasons listed up to this point tell why people living with fibromyalgia have little to no desire to be intimate with another person, and will, have an impact on their sexual performance. A person can feel pressure to have sex from their partner, although many times that pressure is unintentional. Thinking about pleasing and not disappointing the other person on top of struggling with the pain of having intercourse during and the days following can impact sexual performance. It’s natural to have these feelings, and they shouldn’t discourage someone living with fibromyalgia, or his/her partner, from further attempts at enjoying sex.
What are the health benefits of sex?
Even though sex may cause you or your partner pain, there are reasons you should consider having a healthy sex life. And, yes, there are ways to have a sex life and ways to improve it such as eating hormone balance food, but let’s discuss why it’s important.
Strengthens Your Relationship
As stated in the introduction, sex is a means in which many couples can express their affection for one another. When words fall short of that expression of love, we turn to intimacy and the closeness it can bring. In many instances, sex takes the relationship to a new level of connection and understanding. Communication lines open and couples can better receive what their partner’s verbal and nonverbal cues. These benefits remain even after the sex is over.
Strengthens Your Body
Yes, you read that correctly. Sex is an exercise, and like all exercises you burn calories while doing it. Pun not intended. According to research done by the University of Montreal provided by Men’s Health, men burn 100 calories for an average sex session of 25 minutes while women burn 69 calories (“Sex Workout,” n.d.).And the longer the session, the more calories burned. Having sex also elevates your heart rate which keeps estrogen and testosterone levels in balance. Done regularly, it will decrease chances of heart disease and osteoporosis.
Endorphins are the body’s natural painkillers that decrease and increase a body’s overall well-being. These feel-good brain chemicals are released through various activities such as exercising and – yep, you got it – sex. Once endorphins are released to the pain receptors in the brain and spinal cord, they block pain signal transmissions. This lowers the perceived amount of pain for a given stimulus, and can prevent pain altogether. This is especially beneficial for someone living with fibromyalgia.
Orgasms can also relieve pain. When a body reaches its moment of climax, it releases a hormone called oxytocin which not only eases pain, but also lowers blood pressure, improves digestion, and makes us happy. Science has proven it – orgasms make a person happy!
Improves Your Sleep
In addition to the release of oxytocin, an orgasm also releases hormones called prolactin and vasopressin which are responsible for feelings of relaxation and sleepiness. With multiple hormones being released to relax the body, it’s no wonder we have the need to fall asleep after a good romp session.
Having a healthy sex life can help lower stress and improve overall well-being. Aside from the previously mentioned hormones that aid in lowering stress and improving relaxation, the physical closeness between partners during sex can also lower stress and anxiety. The welcome touching and caressing from your partner can release the body’s natural feel-good hormones which redirects your focus away from negativity and stress. This boosts self-esteem and can make a person happier.
Ways to improve sex
Even if sex is a painful experience for you, whether physically or emotionally, there are ways to make it better. There are also techniques to create a sex life if one is lacking. Sex can become a pleasurable experience that both partners look forward to.
Please join us in next month’s issue as we discuss the ways to turn painful sex into pleasurable sex in Fibromyalgia and Sex: Part 2: Turning the Pain into Pleasure.
To have the feeling of loneliness countered by a moment of feeling loved is awesome. In one moment a picture of my elementary school class picture was posted on FB with a message, “Marilyn, I thought you might like this,” Isn’t The Most High wonderful?! To be contacted at that moment of utter loneliness. All of a sudden my DM was hit up with all of my closest friends that I had lost touch with. Now a meeting has been set up for all of them to come visit me for the day. Isn’t that wonderful? Feeling so blessed. 😊😋😊
This is a follow-up to the Cinemark Christiana Movie Theatre debacle.
I called the theatre the next morning after being humiliated the night before and spoke to a representative who intern stated that I would be receiving a call from their manager (Stephanie) on Monday. Well that didn’t happen. I called this evening around 4:30 pm and actually spoke to Stephanie herself. After explaining to her how I was treated, she told me “where I was wrong.” She said that I, indeed was sitting in someone else’s seat.? Wrong! I understood the meaning of reserved handicapped seating and I was indeed sitting in a seat that I had reserved. Stephanie also stated that they sat those that was supposed to sit in our seats elsewhere, and that the usher was supposed to tell us this. NOT! LIES BEGAT LIES BEGAT LIES! Stephanie then went on to say that I had no right to raise my voice to her. I rebutted with, why Not? You are not listening to what I am trying to explain to you about what actually happened. She then apologized for her staff not alerting me to reassigning the other moviegoers Stephanie promised me a refund, in which I was prepared to give her my confirmation number so that it could be reimbursed to my card. Stephanie said that was not possible and that I had to come back to the movie theater and show her my digital receipt. Again reiterating that it would be hard for me to do so tonight because of my disability, so may I email it to her. Of course she said no. Stating that I must present the ticket in person in order to receive my refund out of their petty cash fund due to the ticket being purchased via Fandango. She said that it would be okay to send a copy of the ticket with my husband. Stephanie stated, “that if she was not there, then she would leave word with the other managers to refund my money. Hubby went there and the staff denied our refund. A manager named Carlos specifically, spoke very negatively to hubby.
I am venting this because I already deal with being handicapped because of Sarcoidosis and what it has done to my life, but to be humiliated when I was in the right for sitting in a seat designated for the handicapped. Especially, when being asked to move for those who were not. #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SarcoidosisAwareness #LivingWithChronicPain #TheRightsOfTheHandicap #Fighting4OurRights #MistreatmentOfTheHandicapped
Theatre: CINEMA CHRISTIANA XD at the Christiana Mall in New Castle County Delaware.
This being the first and the last time I come to this theatre. I am legally handicapped and I purchased four tickets to see the new “Thor” movie. I purchased two seats in the handicapped section, seats C13 and C14, as well as two more seats in row B. There was no other handicapped person in the theatre this night. All present were younger children ages 26 on down. But why was I harassed over and over again about the seat I reserved. Ushers stating that I was in another person’s seat and had to move. Showing my digital receipt over and over again. What did they do, they brought a hard, uncomfortable chair out and asked me to sit in it because I “should have been in a wheelchair.” I use a walker. Why was I singled out. Next to me on my right, a young couple lounged and talked throughout the whole movie. Never was they asked to move. Also, no handicap there unless it was their inability to SHUT UP!!! To my left, a young man sat very comfortably alone. Mind you, no one ever came to sit next to me. I am a married mother treating her husband and the boyfriend of my daughter to a movie of their choosing for their birthday. I hope they enjoy it because I will never do this again. Back to the safety of my home to wait for the movies to become available on cable. This place SUCKS!!!
Cinemark Christiana Mall gets barely 1 star. I will stick to Regal Cinemas at Peoples Plaza.
In reading this article I hear my children Karl McNeill Jr. and Ka’miko McNeill screaming at me to stop waiting to take my pain medication. I also have heard the labels that are given to those who seek to relieve their pain in the E.R. and before I became a patient I contributed to the ignorance. The truth is, I as a chronic pain sufferer have difficulty taking my pain medication because I do not want to be a statistic. I need my pain meds because I suffer from not just one chronic illness, but three that are very debilitating. I would not function each day if not for the opiods prescribed for me. So to my children, I say thank you for being such wonderful caretakers. But also for just loving me.
Here it is 16 years after my diagnosis and the knowledge of what Sarcoidosis is or where its origin began is still a mystery. Why is this? I know for a fact that we Warriors are still fighting for our lives. We are still spreading Sarcoidosis awareness throughout our communities and on social media. We are still wearing our purple and holding our events. We are still obtaining proclamations from our governors of state. So what is the hold up? Why aren’t there more specialists out there to treat the many symptoms and problems caused by the disease and the medicines used to treat it? Why are we still not being treated in the emergency rooms across the country properly? Why isn’t there funding to find a cure? The answer is simple. They don’t care because it is not happening to them. At least that is my opinion. They are not suffering from the debilitating pain. They are not feeling their lives slip away. They are not dealing with the financial strains that the disease brings on the family. They are not dealing with the lengthy and costly misdiagnosis processes. They are not being looked at like they are crazy.
No energy. Tired of being tired. Pain beyond comprehension. Frustration and loss of self. Financial strain. Loss of friends and family who do not get what Sarcoidosis is or what it does to you.
If anyone else has an answer, please tell me.
Peace and blessings,
United front against Sarcoidosis. We’re fighting for a cure!