Dear Fibromyalgia

Tag: Fibromyalgia

An in-depth guide on Fibromyalgia, covering its symptoms, causes, treatments, and tips for managing this chronic condition effectively.

At what age did you 1st notice your Fibromyalgia Symptoms?

My Age is 43 years and suffer from Fibromyalgia since 2004

I was twenty-two when I noticed pain in both my wrists and forearms during typing on my laptop. I was initially diagnosed with carpal tunnel syndrome, a diagnosis that made sense at the time—it was my last quarter of college, I was typing a lot, I also had a job as a barista working an espresso machine—but which later, I think, turned out to be entirely inaccurate.

By the time the orthopedic surgeon was recommending carpal tunnel surgery, I was experiencing pain in my neck and shoulders that started one night when I was binding books for my creative writing degree and has never completely gone away since. Ditto for the pain radiating up from my right foot that I first noticed as I was stuck in traffic driving to one of my first job interviews.

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A few months had gone by and a trip to run errands with my roommate resulted in the first time I noticed pain in my low back, hips, knees, and feet after standing for longer than twenty minutes.

By this time I was seeing a rheumatologist who was advising against carpal tunnel surgery. Obviously, I had bigger problems than carpal tunnel syndrome, and a repeat nerve conduction study did not indicate that diagnosis.

Fast-forward two years later, and I woke up one morning with horrible migraine symptoms after surfing the Internet the night before. I’ve had headache symptoms arising with screen use ever since.

I’m thirty-seven at the time of this writing and as of last year, fifteen years after my initial symptoms, sitting upright in a chair has also become incredibly painful for my low back, hips, glutes, and thighs, to the point where I can’t maintain gainful employment with this new development on top of my other symptoms.

I feel rather dismissed when they say fibromyalgia is not a progressive disease. That is true, I think, in that it does not cause damage to tissues—at least not damage we are good at detecting—but it can get worse.

It got worse for me, even as I was exercising regularly, eating right, and taking care of my mental health with psychotherapy. These things are helpful with overall coping, but I don’t feel like they target specifically whatever started going wrong in me fifteen years ago.

The research exploring the idea of fibromyalgia as a disorder of the brain and/or central nervous system is interesting to me, but I find most of the new treatments being developed to be woefully ineffective. Here’s hoping for the future.

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03/01/2022
Why is Fibromyalgia so poorly understood by the Medical world?

IMHO, I blame two things. Misogyny, and a lack of high-tech diagnostic tools.

Misogyny: 95% of sufferers are women over “a certain age”! A lot of the medical cohort, particularly the senior ones were and still are male. Recent studies have shown that even today, a woman with chest pains, is more likely to be discharged than a man, and as a result, more are dying from heart attacks! Men don’t take women’s reports of pain as seriously as men.

Lack of diagnostic tools:

It was literally only a few years ago that actual neurological change in FM patients was proven using state-of-the-art MRI and similar tools. Until then there were literally no measurable symptoms, the only patient-reported ones.

The two together led to a disastrous mix of lack of belief. Then some idiot insurers decided, on very scant evidence that more exercise was what was needed for a cure. This made many FM sufferers even worse and was followed up by more misogyny– “you’re not trying hard enough” Of course in the US, you have crappy health care, so this was pushed down every doctor’s throats at every opportunity, and had a worldwide impact, even on countries with great healthcare like the NHS here.

However, the NHS finally listed it as a lifelong condition a few years ago, and more evidence is stacking up. Reduced blood flow, massively more capillaries, drugs that act on the affected pain sensors that are working incorrectly. Finally, it’s on the way to being understood.

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03/01/2022
How come the Doctors say that patients who claimed to have fibromyalgia were just unhappy in their lives?
Maybe the doctor you followed some patients with the presumptive diagnosis of fibromyalgia. And maybe after years of following them, and checking for objective signs of disease- lab abnormalities, physical changes, etc. your doctor never found anything to document a medical illness.

But the patients always had the same complaints, always complained of fatigue, not sleeping, muscle aches and not being able to work (I am not saying that this is a description of many patients with fibromyalgia).

So your physician decided that there was nothing to this diagnosis because he/she could find none of the traditional signs of a disease, it responded to no treatments, and there was no progression to a measurable pathological state.

Now there are diagnostic criteria for fibromyalgia. The latest I can find is from the American College of Rheumatology 2010.

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1. Widespread pain index score of 7 or more, and a symptom severity score of 5 or more. Or a different mix with lower WPI and higher SS score. So it’s kind of vague.
2. Similar symptoms for at least 3 months.
3. Other medical conditions that could cause your symptoms have been ruled out.
Previously a “tender point” system was used, but it didn’t work well and the new system was instituted.

Symptoms include, but are not limited to:
- pain or tenderness in muscles, joints, or skin from touch or pressure
- severe fatigue
- sleep difficulties
- memory difficulties
- foggy thinking
So let’s see if we can use these criteria to diagnose people with fibromyalgia.

So do you know of some people who complain about some of these things? I know… let’s see, pretty much everyone I know over the age of 40 has some of these complaints, and more of them the older they are. So these complaints are very common.

Are these complaints associated with other conditions? Poor circulation, obesity, osteoarthritis, rheumatoid arthritis, Lyme disease, AIDS, hypothyroidism, collagen vascular diseases, poor nutrition, sleep apnea syndrome, depression, cancer…etc. etc. So yes, these symptoms are very common in other diseases.

Are these symptoms subjective? Let’s say I have a viral illness and I’m out of work for a week, because I am too fatigued and “achy” to work. You have the same virus, but don’t miss a day. We both fall off our bikes. Our injuries look exactly the same.

You get up, go home, and put ice on it. I wait on the ground for an ambulance to take me to the ER. I miss working the next day. You show up. Did I “hurt” more than you did? So yes, all of these criteria are “subjective”. If you do the point tenderness test on me and every place you touch I say that pain is a “9”, is that real? How can you tell?

There is a blood test being evaluated for Fibromyalgia, the FM/a test. This tests for elevated cytokine levels in your blood. However, elevated cytokine levels can be found in everything from Autism to Zoster. They can be found in high levels in depressed and suicidal patients.

Any inflammatory disorder that activates the immune system will increase cytokine levels. If all other pathological conditions have been ruled out (could take years and 10s of thousands of dollars worth of tests) and this test shows that your cytokine levels are elevated, then your doctor can say you have an occult inflammatory condition in your body, Maybe it’s fibromyalgia. Maybe it’s a disease that will show up later.

I hope you can see why some doctors are skeptical of the diagnosis of fibromyalgia. Because the doctor can’t diagnose it. Only the patient can. And that can sometimes be misleading.

Disclaimer: This is not medical advice. This is a personal opinion based on the situation of a close one.

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03/01/2022
I’m 22 and considering getting a cane for days when my Fibromyalgia Flares up

How do I be confident using the cane in public when I look like an otherwise healthy, able-bodied person?

I can’t give you a direct definite answer to your question. But I will share a couple of things with you. When my oldest daughter was 13 she had surgery for scoliosis. She walked back to the surgery suite turning back, smiling and waving.

Totally secure in what she was doing. 13 1/2 hours later they came out and told me that she was paralyzed and would never walk again. Fortunately, God’s bigger than that. Three months later she was wheeled to the hospital doors and with the aid of some braces, she walked out to the car.

It took about two years of PT but she got to the point that she was able to put the wheelchair away and use two canes. Then later she went to one cane. She’s had 2 more major surgeries to stabilize her back and she now walks with a walker to help take some of the pressure torque off her spine. So never give up! Keep fighting!

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The second thing that I want to share with you is my disability. I have a lung disease that requires me to be on high flow oxygen. For several years after being put on oxygen random strangers would walk up to me in Walmart and ask me why was I on oxygen?

I didn’t look sick! I spent a lot of time trying to explain things to people but it was really almost offensive. I don’t offend easily. But it bothered me enough that I got to the point where I started looking at people and asking Really!?! And what exactly does sick look like! There are many times that I’ve caught myself watching someone park in a handicapped space and get out of the car looking perfectly able.

I often wondered why they seemed to need a handicap spot. At some point, I made the connection and reminded myself that I had NO IDEA what their health issues were, and frankly, it was none of my business and not mine to judge. I take care of my own issues and usually find that I’m left with little time to squander on placing judgment on other people. It’s not my place to judge.

So my point is this. Do what you need to do to take the best care of yourself that you can. Don’t even worry about what other people are going to think! You won’t be able to do anything to change it anyway. People that are that worried about your health, they’re going to find something to be critical of no matter what you do.

Don’t waste your energy on them. You do the best that you can do to take as good of care of yourself as you can. It will help you in the long run and will remove some of your burden in the short run. Take care!

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03/01/2022
Declaring your Fibromyalgia, I hope no one you know ever has this awful syndrome.

Seem like? I hope no one you know ever has this awful syndrome. It affects your muscles, your nerves, and your brain. The pain is intense and fluctuates with the only blessing being there is no visible tissue damage.

The brain has much higher cortisone levels with less relief and the signals between neurotransmitters get glitchy increasing difficulties such as muscles losing reaction time or function but luckily these as temporary and intermittent. One minute you cannot feed yourself without dropping your spoon and an hour later you can make a puzzle.

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It makes you look crazy and like you are faking. It is inherited and managed with great difficulty. The “fibro fog” makes even the most intelligent of us unable to come up with the correct words at times. Funny as this can be, it is scary to not be able to trust your own brain.

Benefits include actually getting treatment, being given medication to help when the pain gets worse than childbirth and kidney stones (I have had both twice), and knowing that there really is some explanation for the difficulties faced on an hourly basis.

It affects sleep, waking hours, productivity, and energy and robs sufferers of being able to predict ahead. Cannot plan activities or having to cancel last minute gets very tiresome and devastating.

My great-grandmother lived to 99 with this wishing she could die every day. Nurses never believed her suffering. I have had symptoms starting mildly at 5 years old and progressively worsening over time. Now I cannot have more than a few minutes without some level of pain and other symptoms.

It is a horrible experience to live with. I used to dance for 4 hours and now can push through for a song with several minutes of rest before and after. I look vibrant but feel elderly. I often need a cane from falls and ankles giving out. Even just to help me get back up. Sleep isn’t restful and every action is followed by intense recovery periods. It is like a huge workout just from taking a shower.

But no scans or tests to prove anything… so of course, many Drs refuse to help.

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03/01/2022
Why isn’t Fibromyalgia taken more seriously?

It’s not taken seriously for many reasons. They’ve been doing more and more research on it but it’s very complex. Some of the medical community claims it’s a rheumatological issue like lupus or rheumatoid arthritis. Some claim it’s all in our brains and faulty nervous systems. Some claim it’s a virus like Epstein-Barr.

It’s usually the last thing you’re diagnosed with when they can’t seem to find out what’s wrong through many tests, X-rays, MRIs, etc. The symptoms, the other comorbid illnesses and syndromes, and the ever-changing way it affects each individual make it difficult to treat and deal with. They try all sorts of drugs and therapies but nothing fixes it forever.

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The symptoms of exhaustion, fatigue, pain aren’t something someone can see on the outside. We can get dressed and go somewhere and smile and be okay for a short time and so people think we’re just fine and that we’re not as sick as we say. They don’t know how hard it was to do that thing for a bit or how much it took out of us to do it.

We can do something “normal” one day and then spend a week in bed, exhausted and in pain. Depression and anxiety are common with fibro because it works with the same part of the brain and chemicals. It is exacerbated by stress and physical activity and we’re often told we aren’t trying hard enough, to push through it.

No one can empathize and so that adds to the stress and difficulties because we’re fighting this and no one believes what it is like for us. This is a big problem because we’re so sick we depend on others and sometimes can’t work and function like everyone wants us to, so we’re labeled as lazy or crazy.

I’ve had to go on medical leave twice. The last time was the worst. I could barely function for over a year. I had to move back in with my parents after raising my own family and teaching for 20 years. I was treated like I was a burden, that I didn’t try hard enough, and that I needed to try all these things that others had heard about. It’s different for each one of us, so what works for one won’t work for another.

Depression and anxiety add this other dimension to it and some would say the whole thing was just a mental disorder and that’s wrong. We’re battling lots of things at once. It’s true that a lot of us start unraveling mentally when we are so sick and especially when we aren’t treated with respect to knowing what our own reality is, and it becomes very isolating and scary.

It’s easy to lose hope with this illness and it’s very hard to get the meds and everything right, lots of appointments, and trial and error. It’s very hard to get on disability or to figure out how to afford all the medical bills and be too sick to work. Over 50% of people with fibromyalgia will try or will commit suicide. There needs to be more understanding out there, support. No one would wish this syndrome on anyone.

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03/01/2022
What does Fibro Fog feel like in Fibromyalgia?

Like you have the flu constantly. Affecting your concentration and memory. And the pain itself is very distracting and tiring. Generally just feeling physically tired all the time. Sometimes worse than others.

Numerous fibromyalgia symptoms come and go. From hour to hour your symptoms change. Often ith little reason. Other symptoms can last for years.

Allergies can be very problematic. Sometimes with chronic inflammation.

And chronic pain can lead to clinical depression. The symptom of Fibromyalgia includes many symptoms that are common with depression. Sometimes being difficult to separate the symptoms of fibromyalgia and the symptoms of clinical depression.

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For me, it makes work very difficult and many people are unable to work. Due to the physical symptoms and clouding of the mind. All the symptoms distract from activities.

Exercise needs to be limited and slowly increased as can be tolerated. Overexertion leads to significant increases in pain and physical and mental exhaustion.

Using medications can add to the confusion. It may be difficult to find the best balance of medications.

Most people with Fibromyalgia have a hard time getting a diagnosis and getting effective support from doctors. GPs will often misunderstand the symptoms. Usually, a diagnosis of arthritis or depression is made. And most of the correct diagnosis comes from rheumatologists.

They are the doctors that are likely to make the diagnosis. And in the case of a diagnosis of depression, a psychiatrist may be able to provide a better diagnosis. The GPs are improving and can now diagnose fibromyalgia better. Or refer a person to a rheumatologist or psychiatrist for a clear diagnosis.

Support groups are great. That is where people can better understand your situation. Even with very strange symptoms. It may be hard to explain to a doctor the feeling of ice or electricity running up and down your limb bones. But most people with fibromyalgia will recognize the terrible sensations.

The shooting pain in your bones, usually limbs, with the sensations of chills or electricity can be one of the most painful symptoms. Usually when your fibromyalgia is really bad.

Depression that may be caused by fibromyalgia also has bad effects on your thinking and concentration. If the mental symptoms are very bad a psychologist could be able to assess your level of functioning.

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03/01/2022
Do you find it difficult to solve problems when your Fibromyalgia Flares up?

I have lived with Fibromyalgia for 30 years.

The answers to this question are true and help to explain some of the new symptoms I’m experiencing. For example, when I stand up, I’m dizzy and have to be very careful or I walk into walls or furniture or trip and fall down.

Everyone has been blaming this on the medication I take for depression and pain but when I look them up, dizziness is not a side effect. I’ve taken some of them for years before the dizziness started.

I used to be smart. This is perhaps the worst thing that has happened.

Before FM, I started a home business, raised our two children, one of whom has significant mental health issues, never gave up on my marriage, and volunteered in our community.

Now I sit at home all day and write – until the fibro fog gets so bad that I can’t read the words on the screen. They aren’t blurry, they jump around and one line will appear on top of another, or the letters are offset enough that it feels like my brain is failing.

Around 3:00 every afternoon I can feel myself get dumber. I can’t remember words or have a conversation with someone because I can’t remember what was said three seconds ago.

So, I have learned to adjust. The best time of the day for me is 10:00 – 3:00. I use that time wisely. That is when I do my writing (and editing) or read something important that I need to understand.

I always have a notebook with me to write down ideas for my next novel, when I’m supposed to meet someone, or which book I’m reading next. This really helps because once I have it written it down, I don’t need to remember it anymore. It frees up space in my brain. I know to check my notebook frequently.

I am planning to write a book about fibromyalgia in the fall (2019). It will be filled with people’s experiences and input, and all of the things I have learned in 30 years. If you would like to fill out a short survey or be interviewed about your experience with fibromyalgia,

Email us at: healthizes@gmail.com

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03/01/2022
Is Central Sensitization the same as Fibromyalgia?

Let’s remember that despite all of our great science, we don’t fully understand either central sensitization or fibromyalgia. So the question is cute but unanswerable.

Central sensitization means that there is altered processing of sensation in the spinal cord and brain. Imagine you have an mp3 player and you plug it into an amplifier and then to some speakers. The mp3 player is like the tiny signals coming **constantly** from the nerves that touch all of your body. Central sensitization is when the amplifier is turned up. So various aspects of sensation are turned on high.

People with fibromyalgia have central sensitization. Their pain processing is amplified.

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But central sensitization is just one kind of physiologic imbalance that shows up in fibromyalgia. People with fibromyalgia can also have a variety of other physiologic imbalances, depending on the person.

That includes immune system dysregulation, activation of inflammatory cells in the brain, dysregulation of hormones like cortisol or thyroid, irritable bowel syndrome, nutritional deficiencies, impaired energy production by mitochondria. Based on physiologic principles and some research, these imbalances are related to interlocking vicious cycles. Positive feedback loops that drive the physiology forward.

These are underlying physiologic issues that probably result in the syndrome of symptoms that we call fibromyalgia. In other words: brain fog, abdominal pain, constipation/diarrhea, painful muscles with minimal activity, fatigue, insomnia, and so on.

In my judgment, the complexity of fibromyalgia is the reason why there is so much difficulty with diagnosis and treatment. In conventional medicine, we get trained to look for one cause and one treatment for a problem.

Fibromyalgia appears to be a different thing. There are many different triggers that can start to shift physiology. And many different perpetuating factors that can permit or drive the cycle of imbalances.

In the meantime, people with fibromyalgia get to decide whether they want to be conservative and go with the conventional approach or to be more open-minded and go with an integrative approach. That means

1. A strictly conventional medicine approach, which says ‘you have central sensitization, we don’t know what causes it, do therapy and exercise and try Lyrica, Cymbalta, gabapentin, and so on. or

2. An integrative approach says, ‘there are a number of physiologic imbalances that are probably driving the symptoms. We can try the meds if you want. And for sure address mind-body variables and movement.

But also let’s help you shift your diet, heal your gastrointestinal barrier and biome, use botanicals and supplements to help sleep, balance your hormones, nourish your mitochondria, reduce stress, and so on’.

In my experience, the second one gets real results for more people.

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03/01/2022
Why is it that every sufferer that I’ve met that has fibromyalgia also has a controlling personality or bipolar problem, including me?

Multiple doctors have told me I very likely have fibromyalgia (but my mother never took me to a rheumatologist), and I would say that I only am controlling to protect myself from being harmed…

So I am not officially diagnosed, but doctors have told me I likely have it, as in a neurologist, psychiatrist, and a family practitioner. A physical therapist named Marcos who is not an MD, but knows my family, also told me he thinks I have it, and he’s worked with a lot of fibromyalgia patients.

I am highly moody and irritable, though.

Fibromyalgia is oftentimes caused by Trauma

Most people who have CPTSD, have some chronic pain disorder… Depression (which almost always occurs with anxiety) and forms of PTSD is the most common psychiatric associations to fibromyalgia… The Link Between Fibromyalgia and PTSD

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Those of us abused will be controlling as to protect ourselves from further harm, and when you’re always fatigued and achy, it makes it easy to be controlled, so that you avoid feeling worse and more drained. I 80% of the time always feel lethargic and energy-depleted, and when under stress, I get aches and pains in various places of my body, icepick headaches, and muscles spasms.

My hands and feet intensely throb the fronts that are not directly my shoulder, but more the muscle in front of the shoulder blades that maybe are like in the center of them ache badly. I get shocks of pain to my head, which are known as icepick/suicide headaches, but I only get those when I am under very, very severe stress.

I have gotten vertigo when I came out of a psychiatric hospital from attempting suicide, and I don’t know if that’s fibromyalgia-related or not, but I felt nonstop dizzy for two days and a very scary type of dizzy. That makes it pretty hard to always be happy, and atop that, I am dealing with CPTSD, my childhood abuse, borderline PD, and major depressive disorder.

I have THE WORST periods, and it feels like a knife is being stabbed into my ovaries. Makes it even harder to be nice, and not as controlling. The day child protective services came to investigate my mom and dad is the first day my period cramps have been as horrible as they now are, but I was having issues five years ago, and this only was three years ago.

My period came a week early and it came that night instead. It’s only the first day they’re unbearably bad to where I am crying and sometimes, screaming, and the second day, they lessen but are somewhat bad. I wonder if it’s post-traumatic-related, and is only bad just like how they were bad the day cps came.

Depression almost always occurs with fibro, and actually treatment most times involves an antidepressant, so the moodiness can be depression-related, or it can be something to do with our gut, as 90% of neurotransmitters formulate within our gut. It is so, so important to healthful wat when you have fibromyalgia. Study shows how serotonin and a popular anti-depressant affect the gut’s microbiota

I never once said I was not diagnosed with my psychiatric conditions. I said I was not officially diagnosed with fibromyalgia. I am officially diagnosed with complex post-traumatic stress disorder, borderline personality disorder, major depressive disorder, and as I specified in my bio because my credentials ran out of space, a schizotypal personality disorder is an armchair by my psychiatrist.

She didn’t want to diagnose me with two personality disorders whilst I was a minor. Aspergers isn’t in my bio or credentials, but I’ve been diagnosed with that, too.

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References:

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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03/01/2022