Symptoms Diagnosis And Fibromyalgia Fatigue Treatment

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

fibromyalgia fatigue treatment - woman with headache

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.

 

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 fatigue worse than pain

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

how to beat fibromyalgia fatigue

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

how to get energy with fibromyalgia

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.

 

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

34 Comments

  • Karen November 19, 2019 at 5:52 pm

    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.

    • Jeffrey Quah February 4, 2020 at 7:10 am

      True

    • Laurie March 7, 2020 at 11:49 am

      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.

    • Terrie April 29, 2020 at 1:11 am

      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.

      • Lona July 1, 2020 at 11:09 pm

        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!

    • Karen May 4, 2020 at 12:26 am

      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

    • Anita Witherell May 26, 2020 at 10:36 am

      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!

      • Sheree September 12, 2020 at 10:08 am

        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.

    • Sarah October 4, 2020 at 9:53 am

      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.

  • Kerstin November 25, 2019 at 5:31 am

    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.

    • Ann November 25, 2019 at 9:23 am

      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.

    • Judy July 25, 2020 at 8:58 am

      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.

  • Beverley Lemee January 10, 2020 at 4:25 pm

    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…

    • Ann January 11, 2020 at 9:43 am

      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.

    • Kat May 4, 2020 at 7:55 pm

      Please look into Ehlers Danlos Syndrome for the hypermobilty.

    • Anita May 26, 2020 at 10:51 am

      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!

      • Jack Commonsense September 8, 2020 at 11:59 pm

        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.

    • Amanda September 30, 2020 at 4:06 am

      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

  • Jeffrey Quah February 4, 2020 at 12:50 pm

    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

  • Dee Whiteley April 10, 2020 at 1:29 pm

    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.

    • Ann April 12, 2020 at 1:23 pm

      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.

      • Tammy Formen April 28, 2020 at 8:35 am

        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

  • Michele May 30, 2020 at 4:50 pm

    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

  • Karla June 4, 2020 at 1:26 pm

    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. ????

  • Kim June 5, 2020 at 9:24 am

    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

  • Shelley June 21, 2020 at 10:58 am

    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.

  • Blue June 23, 2020 at 1:14 am

    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.

  • Cheryl Van Esch July 1, 2020 at 2:00 pm

    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.

    • Millicent July 8, 2020 at 4:07 am

      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?

  • Abby Smas August 28, 2020 at 1:42 am

    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.

  • Stephanie M. September 4, 2020 at 1:33 pm

    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.

  • Dana September 7, 2020 at 5:30 am

    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.

  • Jack Commonsense September 9, 2020 at 12:10 am

    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.

  • Jan T October 19, 2020 at 2:39 pm

    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.

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