What is Fibromyalgia?
Living with fibromyalgia is tough. It invades all parts of your body and affects your quality of life. The major symptom is pain, but dealing with fatigue and other symptoms becomes a normal part of every day.
Often there can be those around you who simply don’t understand what you live with as your symptoms are not visible to them. Fibromyalgia is often referred to as one of the invisible illnesses for this reason. Pain and ongoing fatigue are not something people can understand unless they live with it every day themselves.
But do not let this get you down as you know how you feel. Continue seeking help and different solutions until you find what works for you. Seek support from close friends and family who understand and do not be hard on yourself.
Remember to not do too much, overextending yourself will only lead to a flare of your symptoms. And, most importantly, you can find natural fibromyalgia fatigue treatment, natural pain management and ways to manage your other fibromyalgia symptoms so you can lead a normal life.
Fibromyalgia And How It Affects Your Life
Fibromyalgia, much like chronic fatigue syndrome is a set of symptoms that occur together. It causes aches and pains throughout your body, difficulty sleeping, depression and fatigue that is not relieved with a good night’s sleep or rest. In fact, the pain symptoms are like arthritis without the swelling and redness in your joints though it does not cause damage to your joints. The pain is usually in the soft tissues, nerves and muscles of your body.
You can be sensitive to bright lights, to temperature changes, noise and pressure. Pain is the most common symptom. Pain can be widespread throughout your body or be muscular in the areas of the body you use most such as your shoulders and the back of your legs. The pain can be more like a deep muscle ache or it can burn and throb and is often worse early in the day.
Causes Of Fibromyalgia
It is not really known what causes fibromyalgia. There is a school of thought that increased activity of the central nervous system is partly to blame. And this relates to how the brain processes information about pain.
There are risk factors to contracting fibromyalgia such as rheumatoid arthritis, a traumatic injury, genetic predisposal, and autoimmune disorders like rheumatoid arthritis and lupus, although fibromyalgia itself is not an autoimmune condition.
It is thought that some people are predisposed genetically to fibromyalgia and it is triggered by an illness, accident, stress or and infection.
Accidents And Trauma
If you have been involved in an accident or gone through severe emotional trauma this is a risk factor that can trigger fibromyalgia. It also has links to post traumatic stress as patients often present with both and they share similar symptoms.
Genetic Links
Genetically you can be predisposed to fibromyalgia so if someone in your family has the condition you have a higher risk of it affecting you. Research shows that up to 50% of people who develop some types of chronic pain is inheritable.
Effects Of Infections
Infections that cause pneumonia, the flu and bacterial infections like Salmonella, Epstein Barr and Shigella have been linked to possibly causing fibromyalgia or they can act as a trigger for your symptoms.
Stress Effects
Stress can cause all sorts of negative effects on your body. There are links between long-term stress that causes hormonal changes that can be responsible for triggering fibromyalgia. Pain can be worse than usual and you may have more headaches and pain throughout your body when there is a drop in hormone levels.
Even short-term stress like work stress and stressful events in your life can put you at greater risk of developing fibromyalgia.
Main Symptoms Of Fibromyalgia
Because of its difficulty to diagnose, some have even questioned whether fibromyalgia really exists. But for those suffering chronic pain which is the main symptom it is very real.
17 Common Symptoms Of Fibromyalgia Include:
- Feeling fatigued in the morning
- Trouble with memory and thinking often called fibro fog or brain fog
- Sleeplessness
- Fatigue that does not improve with sleep or rest
- Headaches
- Moodiness
- Hands and feet feeling numb or have a constant tingling feeling
- Anxiety
- Depression
- Menstruation periods that are more painful
- Sensitivity to changes in the temperature
- Cramping or twitching muscles
- Sensitivity to bright lights
- Restless legs syndrome
- Irritable bowel syndrome
- Trouble focusing and paying attention
- Fluctuating energy levels
Fibro fog
“Fibro fog” or brain fog is when your brain feels foggy and is a common symptom in fibromyalgia sufferers. Signs include the inability to think straight, loss of memory, confusion, difficulty focusing, mixing up your words and difficulty staying alert. Brain fog can be more upsetting than living with the pain for some people.
That’s why finding a way to manage “Fibro fog” is crucial, as the ability to think straight is essential for everyday life. There are natural ways to manage the symptoms, and using a product like Java Burn may be beneficial. Like coffee? If you drink coffee daily and would like an extra boost in your focus, try something with L-Theanine. Java Burn packets contain L-Theanine and other natural ingredients. The powder easily mixes in with your coffee so you can get a boost in focus and antioxidants.
Java Burn is tailored to fit various dietary patterns, whether you’re keto, vegan, or paleo. It seamlessly integrates into your daily routine, offering a natural boost to your day while aiding in symptom management.
With that said, it’s still important that you consult with a healthcare provider to ensure it aligns with your individual health needs. While Java Burn has shown promise for many, individual experiences may vary.
Types Of Fibromyalgia Pain
Pain characterizes fibromyalgia. It invades the soft tissues and muscles in your body and varies in intensity from a mild, dull ache to a severity that may almost be unbearable. How much pain you are in will affect how you cope each day.
What would not normally be painful can be unbearable for people with fibromyalgia as your nervous system does not react normally to pain levels. Even the touch of bedsheets on your body can cause enormous pain symptoms. And the pain can be in more than one part of your body. Many people with fibromyalgia find wearing clothing can cause skin pain and discomfort. Finding comfortable clothing for fibromyalgia can be a challenge.
Pain In Your Legs
You may have pain in the soft tissues and muscles of your legs that can feel like you pulled a muscle or leave your legs feeling stiff. The pain can feel like it is:
- Burning
- Throbbing
- Deep within your legs
- Cause numbness and a tingling.
You may even have a creepy crawly feeling and always need to move your legs. An uncontrollable urge to move your legs can also be a of sign of restless legs syndrome which can be a part of fibromyalgia. Having restless legs syndrome can also affect your sleep. Your legs can feel tired as if weighed down and feel overly tired.
Pain In The Chest
Chest pain caused by fibromyalgia can feel like the pain associated with a heart attack. But this is not the case. When you have this type of chest pain it is in the cartilage that connects your breastbone and ribs. The pain can emanate up into your shoulders and into your arms.
Chest pain from fibromyalgia can feel like it is a burning pain or be a stabbing or sharp pain.
Pain In The Back
Back pain is a common place to feel the pain of fibromyalgia. Most people have back pain of some sort at some time in their lives. So, having pain in your lower back may not mean you have fibromyalgia. It could be many other things such as a pulled muscle. Your doctor will ask you about other symptoms to help them work out if it is fibromyalgia or not. You can also have fibromyalgia along with arthritis.
Similar To Autoimmune Conditions
Autoimmune conditions such as multiple sclerosis attack the soft, healthy tissues in your body the same way they would normally attack bacteria and a virus. This is what makes fibromyalgia appear like an autoimmune disease. But fibromyalgia does not cause degenerative damage to your joints or inflammation and is therefore not considered to be an autoimmune disorder.
Fibromyalgia Risk Factors
In the past fibromyalgia was more common in women than men. But with new diagnostic techniques, it has become more common in men as they were often misdiagnosed. And, while it affects all age groups the most common age is between 35 and 50. It can also affect children who are commonly misdiagnosed with behavioral problems or growing pains.
Many people with fibromyalgia have other health problems that affect the immune system or their mental health. It is a complex condition and many things can trigger it. An injury, childbirth, a hysterectomy and even a viral illness. But there is ongoing research into fibromyalgia to learn more about this difficult, painful condition.
Getting A Diagnosis Of Fibromyalgia
Fibromyalgia is difficult to diagnose as it can mimic other illnesses. It can occur as part of another condition or alone. Also, fibromyalgia symptoms can come and go which makes it more difficult to get an accurate diagnosis.
There are no specific tests for fibromyalgia so it is not a simple process to diagnose. Experts link the condition to changes in the way your spine and brain process your pain signals. This means your GP needs to rely on the group of symptoms you present alone to make a diagnosis.
You need to experience widespread pain to all parts of your body for three months or more for your GP to consider fibromyalgia the cause.
In the past doctors also relied on tender points to specific parts of your body. For a fibromyalgia diagnosis there had to be 11 out of 18 points of tenderness.
Trigger points tested included the:
- Upper chest
- Back of the head
- Knees
- Outside of the elbows
- Hips
- Knees
- Top of the shoulders.
But it was found this was not the most accurate way to make a diagnosis. Also, it was difficult to know how much pressure to use in these areas to elicit a pain response. One day you may have only five tender points and two days later 11 or more.
Now doctors use a NEW SET of diagnostic guidelines including:
- Persistent widespread pain for three months or more.
- Eliminate other conditions that could be causing the symptoms.
- Whether you have other symptoms such as brain fog, fatigue and waking up tired even though you had a good night’s sleep.
Eliminating Other Possible Conditions
Because fibromyalgia has a set of symptoms similar to other conditions, your doctor will eliminate these as part of the diagnosis. These can include:
- Mental Health Disorders – Mental health disorders such as anxiety and depression can often cause general aches and pain throughout your body.
- Rheumatic Conditions – General aches and pains can be a sign of conditions like lupus, rheumatoid arthritis and Sjogren’s syndrome.
- Neurological Conditions – Often people with fibromyalgia can have numbness and tingling in their hands and feet which can be a sign of myasthenia gravis and multiple sclerosis.
Tests Your Doctor May Need
There are no specific tests to help diagnose fibromyalgia but you doctor will want to rule other conditions that present with the same symptoms. Tests can include:
- Testing the thyroid function.
- A complete blood count.
- Erythrocyte sedimentation rate
- Levels of vitamin D.
You will also undergo a physical examination of your joints and muscles as well as a neurological examination to rule out any other conditions. You may also go through a sleep study if your doctor suspects sleep apnea as the cause.
How Fibromyalgia Affects Your Daily Life
Fibromyalgia will creep in and affect every part of your life. Let’s start with work. Maybe you work in an office and after sitting for a while you have trouble getting up out of the chair. You can find it harder and harder to concentrate on the task at hand and have trouble remembering any changes made in processes or procedures. The effects will affect your productivity and you may soon be taking too much time off work in an effort to deal with your symptoms.
In fibromyalgia as in chronic fatigue syndrome, no longer will sleep be your friend. Even after a good night’s sleep you will not feel rested and wake up after a night of unrefreshing sleep still feeling fatigued. It may even be that you have trouble dragging yourself out of bed. At first you may like spending more time in bed but it can soon make you feel lazy and worthless.
The pain of fibromyalgia will mess with your social life. It will be difficult to spend time with friends, play sport, enjoy your hobbies or have a weekend away. Some friends will accept this change in you so treasure them but others can fall by the wayside.
It can be difficult to talk about the daily struggles of coping with fibromyalgia. You may feel embarrassed. Put that aside to let people know what you struggle with everyday. Those who are true friends will stick by you and the others do not really matter.
You may become a stranger to your family even though you live in the same house. Your bedroom will become your new best friend as you spend so much time in bed sleeping the hours away even though it does not help you feel better.
And when the weather changes with the seasons it can make the symptoms worse at times. This will impact your family so help them understand what you are going through.
It will take all your energy to keep up-to-date with chores around the house. Doing the dishes and laundry will become a major challenge let alone vacuuming the floors. And it may even become impossible to lift your arms up to put your clothes on the line to dry. Showering and washing your hair may become an impossible task without help. You will need to find different ways to accomplish the things you once accomplished with ease.
Fibromyalgia Fatigue Treatment
As if the main symptom of never ending body wide pain is not enough to deal with, fatigue can also become a constant companion when you have fibromyalgia, making it important to know how to deal with it. Using your available energy well can also help prevent a flare of your other symptoms too.
The causes of Fibromyalgia fatigue can be due to insomnia, poor quality sleep and due to dealing with chronic pain. Constantly reacting to nerve pain signals in your body can be completely exhausting.
Identify Triggers
Learning what triggers your fatigue symptoms can help you manage and reduce it. Your fatigue can be caused by several things such as:
- Poor diet
- High stress levels
- Poor quality sleep and sleep patterns
- Your mood
It is useful to keep a record of your fatigue level each day. By recording your activities your food and sleep patterns you may see a pattern emerge. Remember to keep this daily log for a couple of weeks can show you clearly why you might be fatigued on some days and OK on others.
For example, you may have skipped exercise or your regular yoga class, or eaten poorly on a specific day causing you to feel fatigued. Perhaps you stayed up later than usual working on your computer and this may be affecting your sleep quality.
By keeping a simple daily log, you will be able to identify triggers and can set about eliminating them.
Modify Your Diet
While there is no specific recommended diet for fibromyalgia, it is always good when dealing with any type of chronic illness to follow a healthy and balanced diet. Emphasize fresh vegetables, fruits, lean protein and healthy fats like olive oil, avocados and seafood. Avoid all processed, canned and sugar laden foods.
Many people with fibromyalgia are sensitive to the following food types:
- Gluten
- MSG
- FODMAPS
- Additives and chemicals such as artificial sweeteners.
Try eliminating those foods while keeping your log and check if your fatigue and other symptoms improve.
Try Pacing
When fatigue is particularly bad you may need to practise pacing to ensure you stay within your available energy envelope. Constantly pushing yourself to complete tasks with diminished energy will only result in worse fatigue.
Learning to use pacing correctly will result in less overall fatigue and will reduce other symptoms too.
Stress Reduction / Self Care
When you constantly battle pain it can place a lot of stress on your system. Finding easy ways to work stress relief into your day can make a big difference to your fatigue levels.
There are several mind/body activities such as tai chi, chi gong, meditation and relaxing yoga which help you breathe deeply and gently stretch your body while reducing stress.
A study using a sample of 53 women with Fibromyalgia on an 8 week program of gentle yoga poses, breathing exercises and meditation found significant improvements in fatigue, pain and mood. These improvements came from practising yoga between 5 and 7 days a week for as little as 20 minutes a session up to 40 minutes.
It seems to be a simple and relatively quick allotment of time each day to feel the benefits in symptom relief and improved quality of life.
Yoga is also something you can easily do from the comfort of your home, and very little equipment is required. In fact, you can buy an entire set with a thick mat, resistance bands, yoga blocks, and more for less than $100. That’s all you need to start practicing yoga!
Aerobic Exercise
Carrying out gentle aerobic exercise helps with the pain and fatigue of fibromyalgia. Whether you choose walking, cycling or swimming, they can all help with fibromyalgia fatigue symptoms. However, it is important to stay within your current level of fitness and not push too hard.
A study undertaken of over 400 women with fibromyalgia showed that gentle physical activity and less time spent immobile resulted in less fatigue and a reduction in overall symptoms in the participants.
At first you may find it painful to do much exercise, begin slowly with a few laps of the pool or a gentle walk. Carrying out this gentle exercise slowly will help your body become used to it and build up your strength and stamina over time.
Putting It All Together
So, if you have suffered unexplained pain throughout your body for three months or more, see you doctor for a diagnosis to help get your pain and life back under control. Using some of the pointers in this post can help with fibromyalgia fatigue treatment and overall symptom relief allowing you to start living a more normal life again.
Please Feel Free To Leave A Comment
I was diagnosed a decade ago after years of elimination testing and fibromyalgia is said not to be a killer…i disagree. It has killed my work, sex, social life, self esteem, body image….the list goes on. I have no choice but to continue to get through each day, but some days waking up is all i can accomplish and the fact that i am a type a personality makes this so much harder to live with.
Sorry to anyone living with this.
True
Hello all,
I’m Colin and yes a bloke, I have spent over 15years living with Fibromyalgia and it took near 8to10years at the start for my diagnosis. My soon tobe exwife just doesn’t understand it or me. I still work as 24hr lift engineer and run my own business, with my wife. With the depression and mental illness, it’s hard , as you know… I can’t cope with not being understood and simple comments from my wife, like “look at the positives” and “we’re trying to help you, but your negatively is hard for us to deal with” ,,,, we know other’s with Fibromyalgia and I feel as she has more compassion for them than me,,,,, everything is my fault and she blames my memory loss and confusion for everything I say or do wrong. Yes, I will apologise when it’s highlighted to me and I have a minute to sit and work it oug in my head…. I really don’t think she realises, I’m not doing it on purpose or maliciously.
I have bad days, really bad days and good days,,,, my depression isn’t like deciding what T shirt to wear in the morning,,, my depression decides for me and at what level of depression I will have.
I wish everyone with Fibromyalgia the best and I wish we all could have more good days than bad.
Love and light to you all.
Colin
Hi Colin,
Sorry you don’t have the support you need from your wife. It’s hard for people who don’t have fibro to understand how it feels. Some have it worse than others. My partner isn’t always understanding also. I’m came home one day and told him that I’m not going to apologise for not feeling well all the time. It’s not my job to make him feel good if he can’t deal with it then bad luck. Keep your chin up look after you apologise to no one and read ,talk and get as much info you can to help yourself. I’ve changed to plant base diet,and upped my intake of vit d3 it has helped a lot. Also keep on working but find time to do something Colin would like to do not what’s expected.
Take care mon😊
Karen. I agree . I’m a type a personality as well. Colin. God, I’m so sorry. I know how you feel. I’ve lost literally every person in my life. Thank God I’m ok with being alone but this is like being a leper. I could go on and on but you all know the details. I have other medical issues besides fibromyalgia. I just wish I wasn’t one of the many people fighting for disability. I think they put us in a lottery because there’s no rhyme or reason why some get it and some don’t. Others wait more than 10 years ( me 13 & only partial) and others get full disability in a year or 3. Something has to change because I’ve worked all my life & now I’m sinking into no life, headed for deplorable living conditions, no money and loneliness beyond belief. Good luck to all. I wish we had more support by family, friends, doctors., laws & insurance.
Hi Karen
Wow. I know you posted this awhile ago. How are you doing now? I have fibromyalgia too and I feel exactly like you do. Your post is exactly how I feel. It’s been the 7 hardest years of my life trying to live like this. I don’t even know what to do anymore. The pain and fatigue is relentless. I do not have a life at all anymore. I’m 52 and I’m scared beyond words. The days are turning into years and I’m missing out on all of it. Nobody understands and I’m tired of attempting to explain. This is not fair. Why did this happen to us? I hope they have an answer soon. I’m doubtful though.
Hi Karen
I was diagnosed back in 1995 and was pretty much confined to my bed
Two years ago I started using CBC oil and within a week I slept better and gradually was able to go off pain meds and several other meds as well
Brain fog is gone my energy is back I do get flare ups but overall am coping quite well
I seen a pain specialist for the oil
I hope this info will help you wishing you a pain free new year
I would like to know what type of oil your Pain Specialist is recommending. Thanks. I lost my life to Fibromyalgia 30 years ago. I’m 72 & just waiting to die. I’ll be relieved when this is over. So sad for all of us.
Please stop worrying…. Like you I am also having it from past 7 years… And I’m just 20 year old… There is nothing about age… Just think that its just a part of your life and keep on going.. Just do whatever you can do… Leave everything which you can’t do… A healthy person also can’t do everything… So understand its just a limitation… But you can do many things… Great things too… If you do this, then you can succeed.. It will be great… The things you do When you are in pain it makes you really different from other people… Other’s may not appreciate you but you are doing great… Trust me… I may not be great to tell all these but I really mean it… Stay happy… You are amazing
I have been sickness and having a hope trying workout everyday and eating well and manage my emotion.. but pain spreading whole body… I want to do accomplish many stuff I never done that but I cant see the hope anymore…
getting strong pill and no one can understanding my pain….
what shoud i do rather die ? …..
So unfair….
Hi Colin
Sorry to know that your soon to be ex wife is not empathetic in regards to having Fibromyalgia and cudos to you for running a business. You should be very proud of your self. Sending you a virtual hug 🫂
I feel you 💔
I’ve had F for close to 35 yrs. Before they were diagnosing it a lot. I was going down the rabbit hole of conventional medicine. I was to the point of looking into a wheelchair. It was BAD. I tried several chiropractors. Nothing worked. It wasn’t until I found THE right chiropractor, AND the right acupuncturist that helps me with supplements also. I feel better than I have felt in 35 yrs. My chiro only charges $38 a session and that includes ultrasound heat therapy. I will also say that I went to a chiro that did some of the Indianapolis Colts. $160 a session…….Never helped at all. My acupuncturist charges $90 a session. Seems like a lot to some people, but when I think what I’ve spent through the yrs, it’s cheap, cheap, cheap. Starches and a lot of carbs bother me also. Also refined sugar. My acupuncturist says that it’s the spleen and digestive system that causes a lot of symptoms diagnosed as F. The spleen also stores our emotions. All I know is I feel SOOOOOOO much better.
I just found this site. Yes I was diagnosed in 13 after my brother, sister and best friend all died terrible cancer deaths. I also had an absolutely evil boss. I was at nervous breakdown status. After becoming a test monkey for many years. I finally took my health in my own hands. I can’t disagree more about the aerobic exercise. Are you serious? I can barely walk some days. And you think I can jump? My feet hurt on the bottoms like they are on fire. I actually had a rheumatologist tell me I needed “to train my brain” not to feel these things!! So after my third rheumatologist and him ordering me 23 pills a day. I asked him wont that blow a hole in my stomach? His response was to asked me if I wanted to feel better now or worry about tomorrow???? So I left his office in tears. Went bought CBD oil. Still take Topimax not as much a prescribed and QUIT my job! I was under so much stress. I was only working to go to specialist! That was two years ago. I’ve never looked back. I don’t feel nearly as horrible as before. Stress was awful. I meditate. I pray. But I will not destroy what is left of my body with pills. I’d love to know the doctor you use Indy for $38. I do need him!
I agree wholeheartedly with you, my brain still expects my body to snap out of it hourly…daily. that alone is exhausting and makes facing the world unimaginable to me. I gained weight and feel awful about my body, sex is to painful to enjoy which deepens my sense of worthlessness…dead would be better sometimes to my mind
I highly recommend you test for antibodies to see if you have an Autoimmune disease…I had so many symptoms and no help from any drs. After my sister in law was diagnosed with Hashimotos, I was tested and had antibodies, pernicious anemia and hpylori…everything starts in the gut so you must heal your gut with an elimination diet..I do AIP..also, you need to be taking supplements like d3, magnesium, b12, zinc and selenium to name a few. Once I started Izabella Wentz’s book Hashimotos Protocol, ALL my symptoms were gone. If you do all this and don’t get 100% improvement, then look deeper like Lyme disease….eliminate products your using and chemicals your cleaning with..it sounds like a lot but the elimination diet and supplements alone changed my life…disease starts with food and healing comes from eating good clean healthy food. It’s work but I promise it will be the best thing you’ve ever done for yourself.
I live the same life of frustration, I have been having medication changes and life changes for years to no avail. I live for my kids and grandkids and the few good days I get! Someday there will be a way to stop this horrible ride we are on,and we must live on hope!
I hear you if it wasn’t for my beloved grandkids……🤦♀️ The only thing that helps me at all is gentle daily swimming. No weight on joints and muscles.
I completely understand what you’re saying. No, fibromyalgia won’t kill you but it steals away who you were before it moved in. We may look the same, but no one, even family will really understand we are not the same. It is a daily ordeal to be got through. It doesn’t help when you have people around you, even some doctors, who think we are just attention seeking. There is very little joy in the lives of fibromyalgia sufferers. I feel every day is a strain and wonder where my old life has gone.
Karen, you hit the nail on the head…I feel the exact same way! And no one understands what we deal with. Praying for us all.
I understand what you’re saying I go through a lot what you said in your post I have my good days and my bad days I do try to take the medicine most time I don’t help so I had to figure something else to do to make my pain go away
Karen, I cannot agree with you more. It too has turned my life sideways. I used to be an event planner for large events. These tasks are physically and mentally demanding. I find myself unable to get out of bed and walk after I have over-exerted myself. When the event is over I feel as if I have not conquered the world and let myself down. There are so many facets to this disease that we really need to find answers, share stories, and bond together as a FibroCommunity. To the people who know nothing about Fibro it sounds like a ‘lazy’ disease but I was once one of those people who had to be planning an event
I have been diagnosed over 20 years ago and it’s debilitating!!! I also, have lupus and osteoarthritis. Multiple surgeries, pregnancy and car wreck which all can lead to fibromyalgia!!
At first I thought I was crazy!! That no one could hurt that badly all over or be so tired!! I was told I was lucky a doctor believed me!!
It’s so devastating! It takes your life away from you!
I was first diagnosed with fibromyalgia 25 years ago. Back then it was still thought to be ‘all in your head’. I think the princess with the pea had fibromyalgia, and probably all the hypochondriacs over the centuries had it as well. Most people today are much more sympathetic, but still don’t understand when some days I act normal and other days I can hardly function. But I continue to push myself, and I continue to hope that some day some advance – if not a cure – will be found.
I think one of the most difficult things to deal with is how little people know about illnesses like fibromyalgia and chronic fatigue syndrome. As you say, sometimes you are pretty OK and other days your symptoms flair making normal activity impossible. My hope with starting this site was to raise understanding and awareness about these chronic illnesses. All the best.
KIRSTIN how are you doing these days. I read you message from 2019 and wanted to know if there has been any positive changes in your life regarding the monster who lives in us.
My name is Marcie and I have been a nurse for 47 years and during those years. Fibromyalgia never existed or at least I never heard about it. First time I came across this was 15 years ago. It was not full Fibromyalgia and the Doctor at the time put me on Savella. Life went on with spurst here and there. Four month ago I found myself in serious stress and the monster showed his teeth. My world collapsed . Now I understand what all of you are saying. You have to experienced it to know what this monster does to you. Your life will never be the same. Thank you, my sister for letting me share. I hope one day you wake up and think it was all a nightmare .
And you are back to being you.
Birmingham, Alabama.
Have you heard of the documentary film “Unrest” made by Jennifer Brea & her husband? The up to date medical term for our condition is ME. It combines fibro & chronic fatigue diagnoses as medical research now uncovered they are parts of same illness:myoencephalomeylitis. ME. If the doctor doesn’t know that, don’t waste your time.
Hi Ann. I too have fibromyalgia, the added expectations are hard to deal with. My kids tell me to stop complaining and my husband wants me to work. I took on a 16 hour a week job recently I thought 4 hours a day… Easy! I wish! I loved the job but would come home and fall asleep in my dinner @5 pm. Days off I would be dragging myself around expected to wash, cook, clean, shop etc. August I was diagnosed with a pulmonary embolism and this week I’ve been diagnosed with a haemaglobin level of 73 apparently 70 is the minimum for needing a blood transfusion!
Still I plod on at home being expected to do … You get the picture. Does anyone else have.all the extra complaints?
I also have toncils ectopia (brain) migraine which give me stroke symptoms, a bicornuate uterus (double womb) and hyperflexable mobility, my joints go 90 degrees the wrong way.
Id just like someone to be interested enough to look into it…
I appreciate you stopping by and leaving your comment. Sad to hear your difficulty with expectations that other people place on you. It IS difficult when others don’t recognize you have a real illness. I recovered a few years ago, but just recently I had a family member tell me she was sorry she didn’t take my illness more seriously and provide more support when I was ill.
All the best.
Please look into Ehlers Danlos Syndrome for the hypermobilty.
Eds. Another called Hatters(sp)? It mentions all auto immune issues along with fibromyalgia with a specificity of family genetics
Me,mom,sister (2 of them). RA,lupus ,sjrogens disease etc. oh and ms spasticity.
I don’t have any of the same illnesses, but we do have something in common,a demanding husband who doesn’t want to hear about your illness. Mine says I just need more exercise! And it’s from staying in bed!! I don’t “stay” in bed. I am in bed a lot more than I used to be. I was a workaholic for 35 yrs before this horrid illness grabbed my brain and squeezed and he knows this. I think these men are making our symptoms worse. I just can’t get him to listen. We are both retired,so he’s not to busy! Anyone with ideas,please we need them!
Anita, Just tell him his life is over also. Expect to take care of me for the rest of my life. Because that is what lies ahead. I am in retirement with a wife with Fib and severe osteoporosis she is wasting away, three bones in her feet broke when she dropped her phone, two bones in her hands broke when she bumped up next to a table. I have purchased her a scooter which she now uses to get around the house. She never leaves the house anymore. I know it is difficult on her, but between all the complaining every day all day, having to cook all the meals, lifting everything, she can only life plastic forks, knives etc. and cannot reach above her elbow level. But keep in mind it your pain your life just became your mates life. What I planned for in retirement has become hell on earth (mild form). Fib and osteoporosis not only affect you but all around you. Yes I understand but it does not change the situation. I am only 65 and have been in this new reality for five years. I have little to look forward to in my life nor does my wife.
Hi Beverley,
I am just in the process of elimination stages of a diagnosis. I have been rushed to the hospital 3 times now with a Hemiplegic migraine (stroke type). I am rattling with pills. Nothing getting any better. I’m exhausted all of the time. Along with pain and eye problems. I can’t remember 5 minutes ago!!! I’ve had to give up my career too. The chest pains come when I’ve been moving too much and random pains come and go constantly. I’ve had all the tests under the sun. My last specialist to see is coming up, a rheumatologist. I only got referred to them because of the pain and stiffness in a morning and evening. Not because of anything else. Wasn’t even referred to see if it was fibromyalgia or not! It’s such a long road to diagnosis. Just would like to feel ok at least, without the brain fog.
Amanda x
Hi Beverly,
I just learned about this site but I have been battling Fibromyalgia and chronic fatigue along with migraines for decades now. I guess my biggest question to you is, now that we are in 2021, are we getting any closer to a) considering this an autoimmune disease? Some doctors say it will is and some say it’s not! Your thoughts? And b) are we any closer to figuring out what type of doctor we should be seeing? Every one I see basically laughs at me and shoves me away.
Any information/help I would be grateful! I look forward to hearing from you in my email!
I have been diagnosed fibromyalgia 6 years ago and everybody said it’s all in my head and stop pretending especially my ex classmates, schoolmates, they said I m pretending and stop complaining…. since then my sickness becomes more and more intolerable … supposedly friends left me….however, to avoid commit suicide, I have to live day by day and struggling to live through the day… live one day is earning a day….TRUST me it is quite impossible to deal with if you discover at later stage like me…. people should not judge fibromyalgia patients and should stop busy body on us
I was diagnosed with fibromyalgia and myphycia pain the beginning of 2020. But I had a fractured back that brought alot of questions to my illness. I am very ill now to the point where I can’t hardly even walk. And my family said I was so full of drama…well my arms are brusised to the point of almost blackness and I have left my family behind and my husband has moved me to the country side of our state. I don’t get outside anymore hardly but I enjoy trying to stay awake and enjoy watching the birds outside. Anything to keep me awake. Thank you for your info. My husband and I will be following you. So keep up the good work. And hopefully this horrible illness will have an ending in site.
Thanks for your kind words, and I’m so sorry to hear about how this illness is affecting you. All the best on your journey.
I am exhausted I can barely function anymore as a human being I don’t think anybody really understands what I go through on a day-to-day basis how much more Can I Endure I don’t know
I was diagnosed with Lewy Body Dementia at 50. I also have been diagnosed with fibromyalgia. Many of the symptoms are the same. I maybe grasping for hope to not be terminally ill but I am beginning to think it might be possible i was misdiagnosed with Lewy Body when it’s really bad fibromyalgia. My pain is all over and constant. I’m stiff and weak. Very fatigued. Poor sleep and little sleep. Brain fog. My worst issue is nausea and vomiting for up to 12 days at a time landing in emergency room numerous times after for fluids and nausea medication intravenously. This has continued for 16 months.
My legs have twitching of muscles and and muscle spasms. No muscle relaxer can touch the pain.
Does anyone know of any thing to help any of this?
God bless & Have hope friends
Hi Michelle
I use cbd oil
Was diagnosed back in 95 and have so many symptoms and pain meds didn’t help
My son would send me articles on cbd and encouraged me to see a pain specialist which I did two years ago
It has made a world of difference to my life
I was pretty well ninety percent in bed where I am now only about ten percent when flare ups happen
I hope this helps wishing you a pain free new year
You should test to see if you have a vitamin deficiency like b12, iron, D, etc..a lot of issues are from having vitamin deficiencies but drs never test for that…I would see a naturopath dr…regular drs are mostly useless in my opinion.
Hi. I have fibromyalgia as well. I have my days where I drag myself from bedroom to living room. Can’t do much. Pain is so excruciating. Have little use of my right arm . I have the same issues as Michele, nauseous & vomiting. Times I cry no one to talk to. ????
I had back,knee and neck pain for years which chiropractor could usually fix with tens machine and acupuncture. Eventually over years it got worse and then the sessions no longer worked. I then tried spinal decompression 5days a week for 6 weeks witch helped for about a year but very costly. As all the symptoms worsened I was finally diagnosed with arthritis…IBS and fibromyalgia. After a heart attack in2017 that they believed was cause by stress and the prescription antinflamatories I was on for years iq can no longer take any form of the pain killers any more. They were the only ones that did anything for the pain and I have no other ones to try but ones that don’t work. The heart attack brought the fibro on with avengens. I have been in a “flare” ever since. I’ve read everywhere that this syndrome is not progressive or degenerating. That’s not the truth, I’m getting worse everyday to the point I have not pain free days and every day the pain gets worse. I think these authors must “live” this before they write articles or books
What if you have a dr that does nothing for you. And we can’t go to ER because of Cova 19. But pain is so severe I can hardly walk now.
Hi. I’m a surgeon and do lots of training of junior doctors. This has hit me hard! The fatigue, pain all over my body and brain fog has affected my career.
I was very active before the FM hit me.
Very sad.
I started having pain all over my body after I had back surgery two and a half years ago, it got worse after I had a hysterectomy a year and a half ago. I had myalgia, arthralgia, and neuralgia. After testing me for inflammatory markers and autoimmune diseases, which were all normal my doctor said he thought I had fibromyalgia since the other conditions were ruled out and my pain started after the stress of surgeries. He put me on low-dose Naltrexone and within 2 days my life changed drastically for the better. My pain levels were reduced by 90%, and I can do normal activities again like work a normal 6-8 hour day without being a 7-8/10 level pain (my job is not strenuous at all). Now I can work that kind of day, go home and enjoy making dinner, then do some gardening – all of this activity, or any of it really, was not possible before I was put on the low-dose Naltrexone. I’m so thankful my doctor keeps up on the literature and started me on this treatment.
I have heard about Naltrexone. Right now l am taking cymbals. It completely depletes my sex drive. I was told by my pharmacist to look into naltrexone. Excuse me for asking, but does it have a negative affect on your libido?
There is one aspect of fibro that I have never seen covered in any article anywhere: fibro can impact your capacity such that you are unable to take steps to fix yourself.
Yes, I know sugar is bad for me. But I have been so miserable for so long that I don’t care anymore. The pleasure that this ice cream will give me is the only thing I am able to process at the moment.
Yes. I have benefited from Reiki and accupuncture before my hip surgery 9 months ago. But I am unable to get it together to make the appointments and get myself there.
Yes. I understand the impact fibro is having on me physically and mentally. But I am unable to ask for help because somehow, in my fog, I think I am going to get better and do these things myself, things I realistically have not been able to do for the last 3 years.
I looked up myoenceph – whatever on Google and it says “no match. If you’re looking for ‘recipes for cakes,’ try looking for ‘cake recipes’ instead.”
I don’t know whether to laugh or cry. I am laughing from what sheer determination I can muster at the moment.
I won’t give up. I won’t give up. I’m telling you, I will not lose my joy and enthusiasm for life because of this f*****g disease! Syndrome! Whatever the f*** this is!
I won’t give up.
Don’t you give up, either.
Blessings and prayers for us all.
Thanks for being here.
I was diagnosed in 2014, but had years of symptoms before my diagnosis. Along with the Fibromyalgia, came the diagnoses of Rheumatoid Arthritis, Hypothyroid, Sjogren’s Syndrome and Scleroderma. I don’t sleep, I am in constant pain which causes me to have extreme nausea and loss of appetite. Because of the stress on my joints from the RA, as there places in my body where the synovia and joint tissue are completely gone and it is bone on bone. so I have to sleep in an upright sitting position. My eyes and skin are so dry that my eyelids stick to my eyeballs and the blisters from the Scleroderma are worse because of my skins extreme dryness. I can barely walk three-fourths of the time and I drop everything I pick up because my hands no longer have the strength to hold onto objects. None of the medications I have had to take for my RA (9) or the Fibro (4) has either put me in remission for the autoimmune illnesses or helped with the pain and nerve issues from all of the illnesses I acquired in one flail swoop. This is not including the mental health diagnoses that I struggle with each day too. I can’t imagine “not living” like this for the rest of my life, I say “not living” because the suffering we go through every single day is not what anyone could call living. If it weren’t for my unwaiverable faith, love and trust I have in God, I would have removed myself from the horrible existence long ago. Please, no matter how hard it is and how much you want to give up, remember that there is still a promise of tomorrow where none of this will exist. In reality, it is because of that promise that I am still here. Love, light and prayers going out to and for all of you who have been stricken with this heinous and unforgiving illness.
I have Fibromyalgia, Interstitial Cystitis, Migraines(Headache daily if not controlled it will turn into a full blown migraine, somedays I can’t get the headache to ease up). I have Narcolepsy with cataplexy, Depression, Severe Anxiety, PTSD, Back and neck pain. I lost my only child my son 7 1/2 years ago in a vehicle accident on his way to school when he was 17. I’m single after being divorced twice and have to work to provide for myself. I’m like all of you that struggle with getting up every day like a normal person, I don’t sleep well and when I do I’m still so tired. My body hurts all the time. I struggle at work keeping up with small tasks and it effects my work to the point to where my job has been on the line several times. I guess it’s somethings at work and the atmosphere that triggers the more stress and tiredness to deal with things. Daily I feel like I may be a little less stressed if I didn’t have to go into a job somewhere and deal with others that have no clue with what I struggle with. If there was a great job that I could find to work from home with insurance benefits that would be ok. I have no clue about how disability works, but from so much of what I’ve heard is sometimes it could take a long time as in years to get on disability. I’m about to be 46 and can’t go without income due to being dependent on myself only. I feel like it’s a no win situation and feel like I have no life at all. I just want to be able to feel ok and live life day to day enjoying it more trying to find myself as much as possible again.
Question! Since these symptoms are so similar to rheumatoid arthritis and lupus, and hydroxychloroquine is used to treat this diseases. Has anyone tried “hydroxychloroquine” and have you had any success.
I was dx with fibro in 2000 and it took over 10 years for my dr. and I to put all the pieces (different complaints and tests) together so that would mean I have had it for 30 years. It basically caused the end of my marriage, almost ended my career and almost took my life. I read so many of your comments and felt all of your pain and frustrations. It doesn’t go away and I don’t think it ever gets better. I believe I had just accepted what it does to me and I do my best to handle it with grace. I’ve learned to be more patient with myself, and to to no longer expect perfection from myself or those around me that I love and care about. I carry Vicodin with me at all times, but it get better pain relief from taking Excedrin for Migraines. I don’t know why it works for me but it does and for that I thank God. Just don’t take more then two pills in 24 hours. It’s hard on your liver, but what isn’t. I’m now up to 14 pills a day.
I wish you all the very best and I pray for you to feel better when you can but mostly I pray to God to direct someone to find a cure for this disease.
I have not been diagnosed yet but I am in and out of my doctors office with the same symptoms im reading yall are having. I am so drained all the time and move from my bed to another area to lay cause I am so tired all the time. My doctor as gotten to where he looks at me as she’s back whats wrong now. My family doesn’t seem to care that I’m slowly fading out of our gatherings. My husband will ask are you ok i will try to tell him what how im feeling his response ok i will do my own stuff. I hate this i have always been a very energetic person and I feel like im just not cut out for this thing called life at times. But my kids and grandchildren keep me going. I just want so ideas answers on what I can do. I get to work every morning and im so tired im ready to go home. And im not even 5 mins into a shift. Some ideas or thoughts would be greatly appreciated
I highly recommend an elimination diet like AIP..it’s vital to heal your gut and that can only happen through an elimination diet..my guess is you also have vitamin deficiencies such as iron, b12, magnesium, zinc, and D3…vitamin deficiencies cause lots of issues and drs never test for these…cut out gluten, dairy, sugar, soy, nightshades, high sugar fruits, processed foods, sodas, lots of spices, only drink one cup of organic free trade coffee a day if you drink coffee…it’s work but I promise it will be the best thing you’ve ever done for yourself! The AIP elimination diet changed my life.
Such a wonderful write up..I have suffered with fibro for years and yet I try to tell myself no it’s not Fibro because I think I don’t want to face that I really do suffer with it..I’m on the understanding note at the moment accepting that yes I do suffer it..I really do hate it ..it has so many draw backs for me but I will have to accept it as a new life and do what I can..🤦🏼♀️😫🙋🏼♀️♈️xXx
Please stop worrying…. Like you I am also having it from past 7 years… And I’m just 20 year old… There is nothing about age… Just think that its just a part of your life and keep on going.. Just do whatever you can do… Leave everything which you can’t do… A healthy person also can’t do everything… So understand its just a limitation… But you can do many things… Great things too… If you do this, then you can succeed.. It will be great… The things you do When you are in pain it makes you really different from other people… Other’s may not appreciate you but you are doing great… Trust me… I may not be great to tell all these but I really mean it… Stay happy… You are amazing
I was diagnosed with fibromyalga 6 yrs ago after I suffered 3yrs of my body declined after having a baby and the death of my mother. I was on 6 different medication to figure out what was wrong with me. In 2017 I went to a chiropractor wellness doctor whom also specialized in acupuncture. I tried acupuncture for a 2 month trial that my husband gave me. It was the best gift I’ve ever recieved. The acupuncture was the best form of pain treatment I have ever had. I’m now on a 12 day cycle of pain manageable relief for the past 3 yrs now. No more medication. I highly recommend for all fibromyalga suffers. Hope this is helpful.
To all Fibromyalgia sufferers. We are a re strong bunch who all were very active, hard working and caring before that one final thing happened to us (different for each) that had our bodies and brain finally stop us. Roughly 10 years for me. Many days bedridden, unable to lift plastic utensils without pain or even simple things like teeth brushing or putting on clothes hurt extremely. It has taken about 4 years to finally see some improvements for me. I can now work for about 3-4hrs a day max. not everyday, but up to 3 days on the the good weeks in addition to doing housework. Some of the comments have let me see how good I have it. I too have people around me who are intolerant, however I strongly recommend an alternative doctor. I have an MD who specialises in nutrition and besides cyclo-benzaprine Reduced from many other drugs) once in a while,adding the following has helped: Magnesium 400mg 2x a day, gingko biloba, vitamin D – 10,000 iu, Vitamin B complex, Collegen and for sleep help, melatonin with 5-Htp and L-Theanine. Takes a few months to see results but works. Stretch daily no matter the pain, drink and eat as clean as you can afford. I am getting some normal life back. Be kind to yourself as you would to your best friend. Our social life goes to non-existent so we must be our own friend and speak love and worth to yourself for every little good thought and deed.
Wow! Such an amazing article! Everything was to a “T” I wish people would take the time to read and educate themselves on exactly what Fibromyalgia is! Also how it affects the body! I loved it! Thank you so much for all the fine details.
I read most of your comments but found it too heart-breaking to read them all. I have had fibro for six and a half years after a bad accident. I, too, was put on a variety of medications that didn’t help and left me with unpleasant side-effects. What I have found most helpful was CBD oil. I took it for 4 years. I have been off of it for a year now as I felt it had done all it was going to do for me. Along with a few supplements I strongly recommend warm/hot baths with Epsom salts a couple hours before bed every night. Take magnesium and cut out all gluten. Excercise is still difficult for me but I’m working on it.
I hope this helps someone. Don’t give up. It’s tough but things can improve.
It started this year for me. Try kundalini yoga, you won’t believe the difference. You can do kundalini even in a chair or lying in bed!
No meds work for me, not even painkilling shots, except opium patches.