Anyone who has suffered from an extended flare or has been hit with back to back flares knows how bad fibromyalgia flare stank can be!
Hygiene is rarely discussed in the fibromyalgia community. It’s personal and embarrassing. I mean seriously, how many people, besides myself, wake up and think that today is a good day to announce my stench on social media?
Personal hygiene is a major issue for the chronically ill and is something that needs to be discussed without shame or humiliation.
Fatigue and pain are the cause of fibromyalgia flare stank. It is not that we are lazy, but that we have little to no physical strength. Pain makes what movements we can make even harder. The result is going much longer than we should between showers/baths.
I was recently hit with an unexpected back-to-back fibromyalgia weather flare. The first flare was expected. I began feeling the effects of the incoming extreme heatwave days before it hit. As usual, I began feeling better after it reached its peak. But then something unexpected occurred. A daytime high reduction of 35 degrees (115 on Sunday to 81 on Tuesday) in 48 hours was more than my body could tolerate.
When I awoke Wednesday morning, my flare had subsided, but my stank was in overdrive! Because of the first flare, I had already pushed the boundaries of my shower schedule. And thanks to the second flare, my stench was so bad that I considered having my husband douse me in liquid soap and spraying me down with a garden hose!
Although it has been quite some time since I have experienced a fibro flare of this magnitude, I set out to prepare for the next. Whether you experience severe and debilitating flares periodically or on a regular basis, my fibro hygiene shopping list will be of use.
Don’t get caught off guard! Have your products on hand and stored bedside or accessed easily. A tiered vanity for your nightstand would be ideal if you suffer from frequent flares. A travel toiletry bag filled with your fibromyalgia flare stank fighting products kept in an easy-to-reach storage cabinet can be used if your flares occur less often. You might even want to consider a hanging travel case to hang from your headboard or wall to make reaching the items easier.
Discussing fibromyalgia and mobility problems is apparently taboo.
Only one of my physicians have addressed the subject of mobility and it was only because I brought it up.
Then there are the opinions of the general public, and unfortunately, some fellow fibro warriors, who make those who need to use a mobility aid out to be weak or say we have given up. However, as I have stated time and time again, there is nothing wrong with a fibromyalgia patient utilizing various types of mobility aids.
The sad and funny thing about it is that nobody questions my use of mobility aids when I state it is for arthritis. But their eyes roll if I mention fibromyalgia. The worst part is that we are the only ones who suffer when we refuse assistance.
But what about your thoughts or needs? We need to stop feeling that mobility issues are only important if they are permanent or acknowledged first by others. Acknowledging areas where we are struggling helps to identify what needs to be modified.
I was diagnosed with fibromyalgia in 2003. Since then, I have made many mistakes. And not just little ones! Refusing to accept my physical limitations has landed me in the hospital. It has stolen precious time that could have been spent with family.
The good news is that I have also learned from those mistakes.
Today I am going to load you up with information about how fibromyalgia affects mobility, empower you with tips for sharing your needs, and encourage you to let go of destructive misconceptions.
Fibromyalgia is more than physical pain and fatigue. Muscle pain and weakness can make it difficult to walk and stand. Fatigue and nerve pain may affect balance.
Fibromyalgia symptoms cause physical stress. Our bodies have to work harder to do what used to come easy.
One mistake I made early on was pushing my body to do what I wanted instead of following its lead. My body completely freaked out and began mimicking stroke symptoms. After a week in the hospital, tests revealed nothing, and the incident was diagnosed as a severe flare.
Another mistake I made was walking and standing longer than my body was able to just to give friends and family the impression that I was just like them. This caused my back and neck muscles to seize and freeze. Had I obeyed my body, I wouldn’t have had to spend six months on my back. Six months of should have been spent enjoying time with friends and family were spent on the couch with heavy-duty muscle relaxers and heat/ice, and massage therapy.
Frozen muscles, dizziness, fatigue, and widespread pain limit mobility. If you are unable to walk as far as you used to, experience additional pain after walking or standing for an average amount of time, or fall often, it is safe to assume that fibromyalgia has affected your mobility.
My fibromyalgia issues with balance have led to a broken tailbone, toe, and many bruised bones. Each injury increased my medical expenses and decreased my productivity.
Before we begin, I want to make it clear that you do NOT have to discuss our mobility issues with anyone. Your health, abilities, and disabilities are nobody’s business. With that said, you should always discuss them with your physician.
Never hesitate to discuss new or continuing mobility issues with your doctors. Doing so helps them understand how your chronic illness is affecting your body. It may also bring to light other health issues that may have been overshadowed by your fibromyalgia diagnosis. When talking with your physician, be sure to emphasize the impact your mobility issues are having on your life.
When it comes to friends and family, it is best to inform those you consider as part of your support team. This will help them know how to help you. To be honest, it is okay to share your frustration over what is happening with your body. Be real when discussing your mobility options.
As for the rest of the world, it is none of their business. With that said, should you use a mobility aid, be prepared to be asked. Because society makes people feel that mobility aids are only for those with an injury or disability that affects the legs, it is easy to feel like we need to defend ourselves. But you do not need to.
If you do choose to offer an explanation, keep your calm. Don’t tell people to f*c& off, talk in a relaxed manner. Give a simple explanation and move on.
Wheelchairs are the first thing people often think of when they hear the term mobility aid. But that is only one mobility option.
Options for balance issues include canes, walking sticks, and rollators. When my daughter was younger, her stroller served as my mobility aid. Pushing it helped with balance and the basket to put my bag’s intake pressure off of my shoulders and back. Dog strollers are another great tool.
One of my favorite mobility aids is my rollator/transport chair combo. It allows me to walk, provides a place to rest my feet and back, and gives my entire body a break when in transport chair mode. While my family feels it is not as easy to push as my manual wheelchair, we agree that when my need to be pushed is limited, it is the best tool to use.
Power chairs are a wonderful option for those who have had their mobility compromised yet want to remain independent.
The most important thing anyone with fibromyalgia can do to keep moving is to listen to their body. Pacing and not exceeding your body’s boundaries will allow you to do more regularly. Pushing hard and continually running yourself into the ground is guaranteed to decrease your productivity, plus time and ability to do the things you enjoy with the people you love.
***WARNING*** This installment is for readers 18 and over because it contains adult topics. Thank you for your understanding.
Though this article does not touch on fibromyalgia and love directly I think it is still a very important article to read because it discusses why we women sometimes are not open with our men when it comes to love .
Something I cannot stress enough, and I’ve stressed it in my books and articles on this subject religiously, is that you have to have open communication with your partner. Likes and dislikes can change over the years– or in a fibromite’s case– it can happen daily so never be afraid to speak up.
This OBGYN is spot on and she completely coincides with my views about men in relationships. Your man should be asking early and often in your Love relationship what you like. And yes, it’s even better if he asks you to show him. Men sometimes need– pardon the pun– hands-on experience to learn for next time.
Hey everyone! This is not going to be a normal post because I wanted to drop in and post an apology to Y’all! Last week I was involved with a Giving Thanks Romance promotion and some authors were really nice to let you all know about it via social media outlets. MANY of you have been following me on those sites for about a decade (Well… it’s going to be near two in a bit– but who’s counting 😉 LOL!) so I really want to make sure you see this apology. To make a long story short– I was GROSSLY misinformed by the coordinator how many books were involved and once I found out just how misleading the promotion had become, I pulled out my book. I am very sorry that I did that but I live by integrity as you die-hard fans of my writing know and I’d never, EVER want to mislead any reader. I am very grateful for all of the support, emails, PMs, likes, and shares by all of you! Having said that,
FF: Hi Ali! First off, welcome to Fibro and Fabulous! Please let the readers know a little bit about yourself and your company Norwex. AB: Hi everyone! My name is Alison Buonome but you can call me Ali. I live in Vernon, CT and I am a busy mom to 5-year-old twin boys. I have lots of messes to clean and love my Norwex products. I used to despise cleaning but Norwex makes it so easy and I don’t have to worry about my family being exposed to chemicals! Norwex’s mission statement is “Safe, Effective, Sustainable”. Yep, that’s it. Our commitment to a brighter future starts with our product mission. You shouldn’t have to sacrifice effectiveness or sustainability when you choose a safer product. So we won’t put the Norwex label on it unless it meets all three criteria. FF: What made you decide to get into the Norwex business? AB: As I said above, I am a mom to 5-year-old twins boys. My boys were born prematurely at 33 weeks. I would put my kids to bed, go straight to the bed.
Long before my official fibromyalgia diagnosis, I began experiencing unexplained leg muscle weakness. It’s hard to explain to someone who hasn’t experienced it themselves for many reasons. Sometimes it is painful and for others, it is not. There are levels of weakness ranging from making walking or standing difficult to impossible. It is unpredictable, unstoppable, and debilitating.
Having not heard of fibromyalgia until my diagnosis combined with it occurring randomly and infrequently, the idea that it was a symptom of any chronic illness never crossed my mind.
I look back now and wonder how the heck I thought it was normal. Then again, considering how busy, chaotic, and stressful life was during the episodes I remember occurring during my teens and twenties, it makes perfect sense why I would have never connected it to anything other than burnout.
I continued to struggle with how leg muscle weakness disrupted my life for a decade after receiving my fibromyalgia diagnosis. I was frustrated by not being able to prevent flare-ups and brokenhearted over the events I couldn’t attend because of them.
Finally fed up with missing out, I began searching for ways to continue living my life even when one or more parts of my body refused to cooperate. Keep reading to discover what I learned.
I am NOT a medical professional. Always consult with your doctor before making any changes to your health care plan.
The cause of weakness and pain differs between fibromyalgia patients. However, with most fibro patients there are mitochondrial1 changes (a change in the microcirculation and/or a change in muscle metabolism), that cause pain, fatigue, and muscle weakness by sensitizing muscle nociceptors.
The areas most affected are where the muscles attach to bones. While the pain and weakness feel like arthritis, fibromyalgia doesn’t damage joints or muscles2.
Related post – Is it Fibromyalgia or Something Else?
The pain and/or weakness may be widespread or felt in just one area. The severity of both can vary and are unpredictable. Your muscles may feel bruised, stiff, or lifeless.
In my own experience with leg muscle weakness, a flare could feel like my legs are heavy like I am walking in water or have sandbags tied to them. Sometimes they feel wobbly and wiggly, sort of like Jell-O. But the most common flare I experience is where they just feel lifeless. Sort of like being paralyzed without actually experiencing paralysis. They lack the strength to stand or walk for more than a few steps. Sometimes this form of flare is accompanied by widespread muscle fatigue that affects my entire body.
One thing that never varies is my inability to predict or feel a flare come on. They come out of the blue, without any warning, and are noticed upon waking up in the morning or after a heavy fatigue-driven nap.
I experienced more leg weakness flare-ups during the first decade after my diagnosis. I didn’t experience a decrease because I discovered a cure or used positive thinking to wish them away, because neither is possible. Instead, I got to know my body, began listening to it. and most importantly I learned to work with my fibromyalgia symptoms.
Whether you experience pain or not, muscle weakness in your legs may disrupt your daily life. It did mine!
Your doctor may prescribe medications like an anti-depressant (to block pain receptors) or muscle relaxers to help reduce muscle tension. They may also prescribe one of three fibromyalgia-approved medications.
I personally find relief each night before bed with a combination of cannabis and a magnesium-rich lotion. Running a few PEMF treatments at the base of my spine also helps reduce the pain I experience throughout my lower back and legs.
Quite often my fibro leg muscle weakness flares include my entire body, When this type of flare occurs, my only option is to rest. Days like this are spent in bed, lying on the sofa, or in my recliner.
These are the non-productive days that I have had to accept. I actually refer to them as my body’s recovery days. Because that is what feels like is happening. For what usually lasts for 24 hours, 48 at the most, my muscles feel like they are forcing me to rest to give them a chance to recover from the days, weeks, or months before.
One thing I truly believe led to the reduction of how often I experience extreme leg muscle weakness flares has been learning how to balance physical activity with my actual ability. By ability, I am referring to not pushing to or past the point of what keeps my pain level lower. This can be tricky and is something that I know I will never be able to do 100%. However, by staying within my body’s comfort bubble as much as possible, I can do more than when I was always pushing its limits.
Riding a roller coaster of super high and low muscle tension and pain levels is exhausting. It is not a sustainable way of living. But by attempting to flatten the track, at most I experience small hills and bumps. The result is taking longer to reach the point of exhaustion and less pain on a daily basis.
In between flares, I use a combination of muscle-strengthening exercises with resistance bands and aqua therapy. I miss walking in the pool and am impatiently waiting for my county to go up another tier on its phased reopening schedule so that my gym can reopen its indoor pool.
With my knee caps moving all over the place, walking on land for exercise is no longer an option, but I can tape my knees and get a great workout in water. Something I am looking into purchasing is a therapy pool for my home. I would love to hear from someone who has purchased one.
Massage is helpful when done regularly and not too intensely. I personally find that deep tissue massages often trigger a fibromyalgia muscle weakness flare. Whereas a regularly scheduled light massage relieves the tension without needing a day or two to recover. Talk to your doctor about what they think is best for you, give it try, and see if you experience the same results.
There are times when the lower half of my body feels weaker than the upper portion. When this occurs, I can usually use a mobility aid to help me keep up with any plans I have made. Which mobility aid I choose depends upon the level of weakness, whether I will have someone to assist me, and what a day out would demand my body to be capable of.
My rollator/transport chair combo is perfect when little walking is involved. A wheelchair is necessary and chosen when sitting up is my only option. This option also requires that I have someone to push the wheelchair. My final option is a power chair which will allow me to get around independently. I should have mine in a few weeks and am beyond excited to know that I will soon be able to do more with less pain.
Fibromyalgia leg muscle weakness doesn’t have to ruin your plans every time it flares. With alternative plans or modifications in place, there are many things that we can still do despite leg muscle weakness.
Learning how to live a life that doesn’t feel like a wild roller coaster may feel restricting at first. However, in time you will find that you will be capable of doing more than you were when you were going full speed ahead. Keep a journal of what you are able to accomplish and your pain levels. When you reach the point of your pain remaining at a low to moderate level, you should find the number of things you are able to accomplish growing.
What are your current leg muscle weakness coping skills and how are they working for you?
You’re not entirely wrong, but you’re definitely NOT right either.
It really drives me nuts the way doctors and the general population misunderstand fibromyalgia. Fibromyalgia literally means “muscle pain” in Latin. Of course, the muscle pain is real and it can hurt like hell, but it’s not a diagnosis. It’s like going to a doctor complaining that your head hurts, and having the doctor diagnose you with “a headache.”
You’re no closer to knowing the cause of your pain than when you walked in. Just as a headache can be due to any number of conditions, (head injury, sinus infection, dehydration, too little sleep, a stroke, a brain tumor, etc…) fibromyalgia is caused by a whole host of other conditions.
Doctors do a tremendous disservice to patients by throwing some Lyrica at them, telling them to exercise, and chalking it up to fibromyalgia. Fibromyalgia has become a catch-all for illnesses doctors don’t properly understand or are too lazy to test for.
It took me 10 years to find out my fibromyalgia was due to a connective tissue disease called Ehlers Danlos Syndrome. Meanwhile, my obsessive exercising to stop the pain of my fibromyalgia was just ripping my joints apart and forming scar tissue, because I actually had EDS and had no business running, jumping, and engaging in high-impact workouts.
I take the heat on here every time I write about fibromyalgia, but I’m sick and tired of doctors dismissing people in real, chronic pain with a fancy-sounding term that gets them no closer to discovering the root of their pain. Not determining the real root of their pain can put patients at risk for further damage, pain, and even death.
The causes of patients’ fibromyalgia are many and varied. What helps one patient may make another much worse. It’s dangerous to think every patient with fibromyalgia is the same.
But most importantly, of course, pain causes depression. I’ve had some really dark, despondent times when the pain is at its worst. Stop judging your friends!! Stop speculating on their mental health!! Just be a friend. Be supportive. Listen. Be present. Your friends have been through the wringer. It’s a horrific thing to have your life stolen by pain.
On a good day, my body aches as if I have the flu. That is my normal. That is how I have to go to work, take care of my family, keep my house in order and live life. On my worst days, I’m bedridden and unable to walk on my own.
Before getting an Ehlers Danlos diagnosis, I had been dismissed by several doctors as a fake or a pill seeker. I didn’t tolerate that from my doctors and I certainly won’t tolerate that attitude from my friends. Please, don’t pretend to be a doctor or a psychologist. Just be a friend. Pain can be lonely and isolating.
No one recovers from FMS. There is no cure. If someone tells you that they “used to have” FMS, they are mistaken. Their diagnosis was wrong.
You learn to cope with FMS. You learn what your limits are and how to protect your energy. You may have many comorbid conditions such as clinical depression, chronic headaches, irritable bowel syndrome, sleep disturbance, chronic fatigue syndrome, etc. You learn how to deal with each of these conditions. You learn what modalities help you feel better. You learn what drugs help you.
You exercise to the best of your ability without exhausting yourself or your energy. Walking and water exercises are the gentlest. You have a sleep study to determine if you have apnea or if you need sleep aids. You may need narcolepsy drugs to keep you alert at work.
You continue working if at all possible. Studies have been done that show that those who continue working do the best in the long run. Effort on through and keep being active.
FMS does go into remission from time to time. Enjoy it while it lasts. Stress or injury can trigger flares. Retirement helped me a lot! Less stress and time to rest led to a reduction in pain and fatigue. I’m no longer plagued by chronic fatigue.
Constantly read about FMS and about strides being made in diagnosis and treatment. Stay up to date on the current FMS news. Also, read Lyme Disease materials. The symptoms are very similar.
Persevere! For another perspective on what we face, read about the “spoon theory”. The author of this piece has MS, not FMS, but her coping method works for us also.
Above is one theory for which people said fibromyalgia in not recoverable, Read the 2nd theory below for more information.
Defining Recovery in Fibromyalgia
Before addressing statistics, it is essential to define what recovery means in this context. Unlike acute illnesses that can completely resolve, fibromyalgia often follows a long-term course. For some, recovery may mean complete remission of symptoms. For others, it may refer to significant symptom reduction to the point where daily life is no longer disrupted.
Recovery can be classified into several categories: complete recovery, partial remission, and functional improvement. Complete recovery implies a return to pre-symptom health with no ongoing medication or therapies. Partial remission involves reduced symptom severity and improved quality of life, though some level of discomfort may remain. Functional improvement means individuals are able to resume work, maintain relationships, and engage in daily activities, even if some symptoms persist.
What the Statistics Show
Research suggests that complete recovery from fibromyalgia is relatively uncommon. Most studies estimate that between 5 to 10 percent of individuals may experience complete remission over time. This number varies based on the population studied, the definition of recovery used, and the type of treatment applied.
A larger portion of individuals—approximately 30 to 50 percent—experience substantial improvement in symptoms with consistent treatment and lifestyle adjustments. These individuals may not be fully cured but reach a point where fibromyalgia no longer dominates their lives.
Children and adolescents diagnosed with fibromyalgia tend to have higher recovery rates compared to adults. In some pediatric cases, up to 40 to 60 percent of individuals may experience complete or near-complete recovery. The reasons are believed to involve differences in neuroplasticity, stress resilience, and early intervention.
Factors That Influence Recovery Outcomes
Several variables affect the likelihood of recovery from fibromyalgia. Early diagnosis and prompt intervention play a significant role. Patients who receive a diagnosis early in their symptom progression and begin treatment quickly tend to have better long-term outcomes.
Psychological resilience and mental health also heavily influence recovery. Those who address co-existing issues such as anxiety, depression, and trauma through therapy often report more improvement in physical symptoms. Mental and emotional wellness creates a foundation for sustainable progress.
A multidisciplinary treatment approach, combining medication, physical therapy, cognitive behavioral therapy, and lifestyle changes, has been found to increase the chances of functional improvement. Physical activity, particularly low-impact aerobic exercise and stretching routines, has shown consistent benefits in symptom management.
Another critical factor is patient engagement. Individuals who actively participate in their treatment plan, maintain consistency, and make informed lifestyle changes are more likely to report improved health and reduced reliance on medication.
Socioeconomic status, access to healthcare, and support systems also influence recovery. Those with consistent access to medical care, strong family or community support, and stable life conditions often have better outcomes.
Why Complete Recovery Remains Rare
Fibromyalgia is still not fully understood. The condition involves central nervous system sensitization, abnormal pain processing, and sometimes co-existing conditions like irritable bowel syndrome, chronic fatigue syndrome, and autoimmune disorders. These interconnected issues make it difficult to achieve total resolution of symptoms.
Furthermore, because fibromyalgia does not present with visible physical changes or markers in diagnostic tests, it can be misunderstood or dismissed, leading to delayed treatment. This delay significantly reduces the chance of full recovery.
Another reason recovery percentages remain low is due to the chronic nature of pain processing disorders. Even when external stressors are removed and symptoms improve, the nervous system may retain a memory of pain that continues to produce discomfort without a physical cause.
Living Well Without Full Recovery
While the percentage of people who recover completely from fibromyalgia is limited, many individuals can live fulfilling lives through effective management. Acceptance of the condition, realistic expectations, and long-term coping strategies can empower individuals to reclaim control and improve their quality of life.
Modern treatment focuses less on a cure and more on self-efficacy, lifestyle modifications, and symptom management. Programs that teach pacing, stressreduction, nutrition, sleep hygiene, and physical activity have transformed how fibromyalgia is treated.
Many patients report that while their symptoms remain, they become manageable. They learn to identify triggers, adapt their routines, and develop a sense of agency over their health. This transformation is not measured solely by medical standards but by the ability to live a purposeful, joyful life despite the condition.
Conclusion
The percentage of people who recover from fibromyalgia completely remains low, with estimates ranging from 5 to 10 percent. However, a much larger group achieves significant improvement and functional wellness through dedicated treatment and lifestyle changes. Fibromyalgia may not always be curable, but it is often livable.
Understanding recovery in fibromyalgia requires a shift in perspective—from expecting a complete resolution to aiming for meaningful progress. With the right tools, mindset, and support, many people do more than just cope; they thrive.
My 16 years of experience facing Fibromyalgia and 30 years of CFS
Pain medications taken too often can lead to a pain cycle, where every time you take an analgesic, the pain will come back sooner and stronger. Once you are there, you have to stop all painkillers completely. I just had my cycle restarted by a week in the hospital where they gave me Tylenol every 6 hours. That’s a whole bottle of Tylenol in a week, and it was completely unnecessary. Now I am suffering the consequences.
People with Fibromyalgia find relief with gentle exercise. If you have CFS with your Fibro, that’s a different story. But for “just” Fibro, go for low-impact activities. Swimming/aquafit is the best thing you can do for your body if you have any sort of joint, muscle, or soft tissue problems.
Fibromyalgia has a flare/remission pattern like many autoimmune diseases (although it is technically not one….yet), so when you are flared, do as little as possible. Don’t be afraid to ask people for help or even get community nurses to come to help you through the worst of it.
Other things that help:
Remove all toxic people from your life – also from social media
Reduce stress as much as humanly possible (I stopped watching the news long ago – especially political)
Don’t push yourself. If your body says it’s done, respect that and go lie down
You have a certain amount of energy each day. Plan accordingly by spreading your errands and chores out.
Don’t be afraid to nap. Our bodies heal when we sleep.
Get a TENS machine for those stubborn muscles in your shoulders. Just make sure to keep it on low, no matter how good it feels at the time. If you crank it up, your body will ding you for it the next day
Try not to rely on sugar or caffeine too much. These cause spikes and crashes in your energy levels, which actually reduce the amount of energy you can spend in a day. It’s hard though.
Do your research. Read scientific medical studies, research medications. Use logic. Avoid any website that uses the terms “leaky gut” or “homeopathic“, or claims to be able to cure Fibromyalgia. It is not cureable. It can, however, be sent into remission, where your symptoms will be minimal. This is done through stress and energy management.
Work with your doctor. There are many non-painkiller medications that can help, although most doctors wouldn’t think to use them for Fibro.
When I had a bad flare a year and a half ago, I asked my doctor about something to turn my immune system down, so I wouldn’t be so reactive (I have an undiagnosed autoimmune/autoinflammatory condition as well, which has caused a lot of allergies on top of the Fibro / CFS).
This question made her remember something from another patient. As a result, I got prescribed Doxepin, which suppresses the immune system and is also the strongest antihistamine known (bonus). I haven’t had a serious Fibro flare since I went on it. Everyone’s Fibro is different so this may or may not work for you. But it is always worth asking.
Someone suggested CoEnzyme Q10 which has helped a lot with my pain. It doesn’t help everyone. Other supplements are similar.
You need to find what works for you, but please do not take any supplements without speaking to your doctor first. They can screw you up as easily as they can help. Your doctor will probably want to monitor your bloodwork to make sure you don’t develop any imbalances due to supplements, and some of them may not be suitable for your particular form of Fibro.
I have had fibromyalgia for 14 years now. It has a permanent effect on my cognitive attention, memory, focus, and movements.
I struggle almost every day to do simple things as I get exhausted after movement of any kind. In addition, I suffer this chronic at random pain from severe to awkward to annoying to bearable, it varies so much it should have driven me crazy.
It has taken away bits of my personality and especially my sense of humor (as no one would find much joy in constant mysterious sensations however light or intense for a long period of time).
I used to feel like a tortured body/soul. Without sympathy and understanding from other people, I’ve had to learn to accept this existence still with frustrations.
I can find relief very short-lived from any therapies(+altenative) so I tend to ignore what my body tells me in order to actually do some of the normal everyday living activities.
I used illegal drugs but didn’t want to be addicted so I stopped. Prescribed drugs didn’t help. I would do anything to heal from this nightmare.
Pain starts at the back of my head when I wake up lying flat, then starts spreading throughout different parts of the body. Throughout the day, the pain will decrease and increase for no obvious reason I used the think each time weather would vary I would be affected by it. (I live in England).
You become desperate to know why you have been triggered by pain sensations. It has generated anxiety and depression as a result. This condition seems to occur to a positive person with a long experience of stress. I would be willing to participate in any health research on the planet to know more.
Although fibromyalgia symptoms are often written off as being sleepy, it’s really a much more serious disorder than it seems. With over 5 million Americans over the age of 18 diagnosed with Fibromyalgia, fibromyalgia requires more treatment than just taking a nap. Finding the right treatment depends on the individual, but the risks of not treating Fibromyalgia at all can be devastating and more dangerous.
A major risk of leaving fibromyalgia untreated is that symptoms such as chronic pain, fatigue, headaches, and depression can worsen over time. Anxiety and mood disorders can also worsen if you don’t treat fibromyalgia. The chances of all or any of these symptoms disappearing or improving on their own, with no treatment or medication, are very slim. In fact, these symptoms can also lead to permanent changes in your body.
It isn’t just the symptoms themselves that can worsen. If left untreated, the chronic pain associated with fibromyalgia can lead to permanent changes in the way your body perceives pain resulting in increased sensitivity to stimuli and abnormal pain sensitivity. To prevent further disruptions in the way your body’s pain-signaling system works, it’s crucial that you seek treatment for fibromyalgia immediately.
The longer you wait to treat your fibromyalgia, the harder it will be to get relief from the symptoms. Research has shown that those who treat pain associated with fibromyalgia earlier react the best to certain drugs and treatments. In fact, waiting too long to treat fibromyalgia can make it more difficult to heal or experience any relief from the pain, no matter which treatments or medications you try. Alone, it’s best to develop a plan for treating and managing the symptoms you are experiencing as soon as possible.
Because the symptoms of fibromyalgia can become debilitating and worsen over time, especially if left untreated, you risk permanent lifestyle changes. The pain, headaches, and depression likely won’t allow you to stay used or take part in day-to-day activities. These types of changes also affect your family members and relationships. When dealing with fibromyalgia, the worst thing you can do is ignore it and hope it goes away.
Fibromyalgia is a difficult and complicated disorder to live with and is even harder to explain to friends and family, or those without fibromyalgia. It’s important that you remember you aren’t alone and are diligent in taking every step possible to treat the symptoms the best way you can. Waiting and leaving it untreated can only lead to negative results.
There’s only one thing you can do: educate, educate, and educate. Show him websites about it, tell him about it, explain to him how it influences your life.
There’s only one thing you can do if he refuses to listen: just leave him.
I’ve got an invisible and untraceable illness too. Mine is called Ehlers Danlos and due to firstly the limited amount they know about it, secondly the fact that they decided to diagnose it on basis of 7 symptoms, and thirdly the absence of most of those symptoms in me, I don’t have the official diagnosis.
My wife had a lot of trouble accepting it too. And I’ve got to admit: it is hard to accept. I am a very vivacious and lively woman, I move with purpose, I talk with purpose, come across as very lively, loud talker, loud laugher, when the music is playing I sit here swinging on my chair. So suddenly when household stuff comes up I’m sick? Hm-hm.
So yes, explaining explaining explaining
Explaining that one test said I only have 15 % of the normal amount of energy. And anything under 70 is problematic.
Explaining that I worked very hard to get out of borderline so I could live my life. And I did not do all that to waste the rest of my life laying on the couch as I am doing now.
Explaining that not having the diagnosis does not mean that I don’t have it, because of the two things I mentioned above.
Explaining that I am sick, regardless of whether the scientists are able to pinpoint WHY I am sick.
And then she’d ostensibly be satisfied and the subject would be settled for a while and then it would come back up. The last time I told her that she’d have to accept it or I’d have to go. Because I can’t live with someone who can’t accept this. And we talked and talked until every little detail was clear to her. And now she accepts it. But it took over a year.
Some relationships are worth that effort, some are not. You are the only one who can say if that’s worth it. Because you can’t get a guarantee that you can get him to understand it, or accept it even if he DOES understand it.
Don’t hesitate to contact me if you want to rant or want to talk some more in detail, or if you think your husband would benefit from talking with someone else with a chronic invisible illness about this.
