Dear Fibromyalgia

Tag: fibromyalgia symptoms

A detailed guide to understanding Fibromyalgia symptoms, early warning signs, and how they are diagnosed.

Do doctors often misdiagnose patients with Fibromyalgia instead of conducting further testing?

Unfortunately not only is Fibromyalgia comorbid with other conditions, but its symptoms can also mask other issues. There’s no definitive test as it doesn’t show up in blood work so it’s diagnosed by clinical evaluation.

When I was diagnosed with Fibromyalgia, I had been experiencing widespread pain (one of the symptoms/criteria) for years, but due to being a teenager, was told it was “growing pains”. It wasn’t. Other criteria they use are trigger points that, if pressed, cause intense pain.

I ‘scored’ on 14 out of 16 trigger points. The other common symptom is “fibro fog” where concentration is poor and cognition can be affected (especially during a flare–up).

I was relieved to finally have a diagnosis. I also have hypermobility which also causes pain, but a different kind of pain: fibro is more nerve pain and hypermobility is more joint pain (and frequent dislocations).

At the end of the day, you can see why people with certain conditions (such as Ehlers Danlos) refer to themselves as Zebras. Doctors are taught “when you hear hoofbeats, think horses, not zebras”. Aka, don’t go diagnosing ‘rare‘ conditions when it could be a simple thing. Except instead we get fobbed off, being told it’s just back pain and everyone gets that. Oh, you’re only young you’re probably still growing.

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Yes, some doctors misdiagnose it. And yes that can have a negative effect on people who do have it. But two people with the same condition can have wildly different experiences. I don’t have to use any mobility aids (i.e. walking stick or wheelchair) but many people with fibro do.

That doesn’t make me not have fibromyalgia anymore or make me better than them. Because I might suffer more with the other fibro symptoms. Plus I have another condition which, when I have flare-ups of both conditions at the same time, can make it impossible to get out of bed.

I’m 18 years old, I don’t want to have these conditions but I will live with them. I had to fight for 7 years to get a diagnosis. I can’t remember what it’s like to wake up and not be in some sort of pain. That doesn’t mean I’ll sit back complacent. It means I’ll go to physio and look after myself because I’ve got (hopefully) another 70-odd year with these conditions at least.

Just think, if someone’s been fighting for doctors to recognize something is actually wrong with them for, in most cases, a decade (average time from onset of symptoms to diagnosis) then maybe once they have an answer that fits, they don’t want to fight anymore.

Besides, it’s not even doctors that diagnose fibro most of the time, it’s rheumatologists (in the UK anyway) who you have to be referred to, which can take up to 6 months in some cases.

Doctors: It’s a difficult condition to diagnose but saying doctors misdiagnose it can be harmful to people who genuinely have it and struggle with it every single day. Sure, it could be an indicator of something else but that’s down to the doctor’s not being informed. Or old school doctor’s thinking they know best.

And lack of knowledge on treatment pathways…

I know people with Fibromyalgia who are on cocktails of painkillers so strong that they are dependent (not necessarily addicted although that happens too) and cannot come off them without massive withdrawal symptoms – because doctors just keep upping the dosage instead of trying something different.

Misdiagnosis is more often the doctor’s fault than anything else because it can only be diagnosed clinically rather than a definitive blood test.

That being said, blame culture in medicine is detrimental to all involved and should be avoided where possible.

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02/28/2022
If you have Fibromyalgia, do you remember having been ill with some manner of the virus within a few weeks of developing Fibro?

I have Fibromyalgia.

My father drank heavily in the 1960s and both my parents smoked tobacco when I was conceived. As a child, I frequently had strep throat, bronchitis, and even pneumonia. Even at 2 two years old I remember being inside the incubator seeing the outline of my Mom and my uncle who came in to visit.

My teeth are stained from taking the antibiotic, Tetracycline as a young child. As I understand it this particular antibiotic is no longer given to young children because of the dental staining.

Additionally, I am a “DES Baby”. My Mom had 2 miscarriages before I was born. When my mother got pregnant with me, her OB doc prescribed DES in hopes that she might carry me to full term. Well, I’m here, but I only weighed 4lbs at birth. Back in the 1960s, preemie clothes were unheard of, so I wore baby doll clothes. Being small made me vulnerable.

As a child, I had unexplained aches and pains, migraines, sleep disorders, sensitivity to noise, light, and smells, emotional sensitivity, and restless legs. I thought I was different than other people. I still have these gremlins making life annoying sometimes.

My point is that I can look back and recognize symptoms I had growing up and into adulthood, middle age, and now at 53.

My theory is that one or more of those viruses I had, one or more antibiotics or cough/stomach meds or even a vaccine may have all contributed to fibromyalgia and its buddies. I think our food is filled with all kinds of processed ingredients that aren’t really natural, but rather artificial. The air we breathe is polluted and our water is something that has to be “treated” before it comes thru our faucets in our kitchen.

I believe stress in a developing child can get so extreme that it affects our nerves and the processes of our brains.

I can’t point to one single thing and know for sure if that particular thing caused my fibromyalgia but medical science still doesn’t know the cause. There are some very fundamental shared commonalities we seem to share.

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02/28/2022
What percent of Fibromyalgia patients don’t respond to any of the commonly used Medicines?

You know this is the craziest thing I am going to talk about now…

I’m not sure what the percentage is, but I can tell you that I spent years taking Adderall for ADHD and then had to stop taking it when I got pregnant. During the hiatus from that medication, I was diagnosed with fibromyalgia.

After unsuccessful attempts at treating it with many of the same methods you mentioned, I decided that I was sick of being a test monkey and asked my doctor to put me back on the Adderall. This time around, not only did it manage my ADHD symptoms, but it also seemingly “cured” my fibro.

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Being a stimulant medication, its purpose is to counteract the area of an ADHD patient’s brain that makes them feel restless and unfocused by “tricking” the brain into believing it has produced too much of its own stimulant, therefore making it produce the chemicals that calm.

While it still does this for me, it also cleared up the brain fog and mental sluggishness that accompanies fibro, but the best thing it’s done is make the pain tolerable so I can normally physically function. As you certainly know, with fibro, some days are worse than others, and it’s not as though this medication blocks the pain as an opiate does, rather, it keeps me so focused on the task at hand that it also distracts me from the pain.

Upon realizing this, I started doing things to help further lessen the background pain, such as yoga and taking daily vitamin B12 and folic acid supplements, as they support nerve health.

Adderall is not recognized as a pain management drug, and only a small handful of doctors currently acknowledge it as a treatment for fibromyalgia. It is a controlled substance with a high potential for abuse, so, doctors won’t prescribe it without a perfectly valid reason, and they usually require a clear EKG prior to prescribing because the stimulant property is sometimes hard on the heart muscle.

BUT, Adderall IS recognized as a treatment for chronic fatigue, so, if you approach your doctor after having utilized so many other medications unsuccessfully and specifically address the concern that the fatigue which accompanies your fibro is debilitating in nature, and you propose the idea of trying a stimulant, he or she may agree to prescribe it at a low dose on a trial run.

Be prepared, however, as it is a common practice for doctors to perform drug tests before and during treatment with a controlled substance to ensure a patient is not abusing it or any other drugs.

I’m certain this is a treatment that will not be appropriate for every person with fibro or other chronic pain disorders, but it has worked in this way for me and a decent handful of other people in our shoes. That being said, for how significantly my quality of life has improved, I firmly believe that it is a treatment that deserves consideration by doctors and sufferers alike.

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02/28/2022
How would you decide if a diagnosis is Chronic Fatigue Syndrome or Fibromyalgia?

Get your genes mapped. If you have either fibromyalgia or chronic fatigue it is probably most likely due to “Soft Tissue Calcification” which is caused by the body not excreting enough sulfur and phosphorus, which is caused by having genetic mutations like CBS 699 and SUOX mutations.

The treatment for these mutations right now is to eat a diet that is very low in sulfur and phosphorus and calcium and vitamin D because these will all lead to pain or chronic fatigue.

Also, it is important to supplement daily with a well-absorbed brand of magnesium citrate like Solgar magnesium citrate tablets, or CALM magnesium citrate powder by Natural Vitality that you dissolve in water and drink, or CALM magnesium citrate gummies that you just chew up.

Pick one of the three, depending on which would work best for you. They are all very well absorbed.

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It is also very important to avoid vitamin D and calcium in both supplements and foods, so this also means to avoid multivitamins as they are all very high in calcium and vitamin D and only have unabsorbable magnesium in them (aka they usually contain magnesium oxide, which is only 4% bioavailable)

So ditch the D, calcium, and multi vibes, start taking magnesium citrate daily and avoid all foods high in sulfur, phosphorus, vitamin D, and calcium. And also avoid MSG and MSG chemicals like the plague.

Doing these things will help you to get rid of or lessen any fibromyalgia pain or chronic fatigue that you may have.

If you think I’m crazy, then all you have to do is try what I am saying for a couple of weeks (as it is not dangerous) and you should see your symptoms lessening.

And then to be absolutely sure, get your genes mapped to see if you have the CBS699 or SUOX (SUlfur OXidase) mutations.

See genetic genie dot org and 23andme dot com for more info. (It will cost about $250 to get this done or maybe less if 23andme is having a sale or if you buy more than one gene testing kit)

I had this done and it turns out that I have a lot of these mutations from both parents so my body cannot properly metabolize and excrete sulfur and phosphorus, and this causes excess sulfur and phosphorus in all my cells which causes both pain and fatigue in the cells and calcium and vitamin D make the pain worse.

So as long as I stay away from all foods high in sulfur and phosphorus and avoid calcium and vitamin D and all MSG chemicals, I am pain–free.

If I eat anything that is high in sulfur and phosphorus or high in calcium or vitamin D, I will get bad pain within half an hour of ingestion. Black pepper and foods high in oxalic acid will also cause pain, so I avoid those as well.

And I also avoid zinc supplements since zinc strengthens the glutamate response in the body.

At any rate, this is something for others to try and see if it works. It is cheap and easy and safe. And as they say, the proof is in the pudding.

I no longer have bad fibromyalgia pain and before, I had such bad pain that I couldn’t even sit down. So this just might work for others as well. I can’t be the only one with these mutations. And I know I’m not because both sides of my family carry them and have all sorts of medical issues.

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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02/28/2022
Why is there such a strong Stigma with Fibromyalgia patients?
Medical professionals roll their eyes at the thought of them. I am interested in opinions from both sides.

I think a big part of it is that the medical profession doesn’t want to admit how much they still don’t know, both in terms of treating illness or even identifying it in the first place. There is a perception that we are so advanced with science, we have all these amazing tests and treatments now.

So if it doesn’t come up on a test, does it even exist? Or even if we do acknowledge it exists, if we can’t treat it then isn’t it easier to ignore it?

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An example – I went to a rheumatologist for joint pain in my hands. After questioning me about other symptoms, he told me I definitely had fibromyalgia, no question about it. He then proceeded to give me no treatment or management options whatsoever and did not want me to come back for a follow-up appointment.

When I next went to my GP, I found out that he hadn’t even mentioned fibromyalgia in his report to her, just a bit of vague stuff about hypermobility. It was like, as soon as he realized I had fibromyalgia, he wanted nothing more to do with me or to even acknowledge my illness because it was inconvenient or embarrassing that he didn’t know what to do about it.

Then with the general public, I think you have two factors at work. Firstly, how are they meant to believe a person has an illness if it’s invisible to them and the medical profession won’t acknowledge it? If the person was really sick, surely it would show up on the fancy tests we have these days, right?

Secondly, there is a very powerful effect where people want to deny that bad things can randomly happen to innocent people. Because if they acknowledge that, they have to acknowledge it could just as easily happen to them. So either it is something the victim did wrong, or it doesn’t exist.

You see this all the time, a person gets a life-threatening disease or has something terrible happen, everyone will say how sad and tragic it is but then immediately start looking for what the person did ‘wrong’ that they don’t/would not do. Eg.
- people who get sick didn’t eat organic enough, take the right vitamins, think positive enough
- any parent who has something bad happen to their child is negligent, because everyone knows the job of a parent is to never let their child out of their sight for even a second, 24 hours a day until they turn 18.
Given this tendency, what is easier for people to believe? That there are mysterious diseases out there that strike people down for no reason we can determine, for which there is no agreed treatment and that you could be next? Or that people are faking it for welfare benefit and/or have psychological problems?

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02/26/2022
How much of the Psychological pain causes Physical pain and vice versa with Fibromyalgia?

I saw an answer from a physician, but mine comes from personal experience from fibro (8 years and counting). It’s not a simple answer, unfortunately.

Fibromyalgia, for me, is a reactive condition. What that means for me is that I have a constant level of pain that is my day-to-day pain level. It’s usually somewhere about a 4 or a 5. If it’s a little lower, that’s a fantastic day, but I can survive with a 4 or a 5. However, when I hit certain triggers, that pain level spikes up.

My biggest spike at the moment is stress – I have quite a stressful job – and it will trigger my fibromyalgia and cause it to flare. This may mean that my pain level shoots up to a 7 or an 8 or even a 9. I usually lose my weekends to self-care and recovery, to try to get back to my 4 or 5 levels.

My other trigger is over-exertion, which unfortunately at the moment, is pretty much any sustained activity for over 30 minutes. The physical effort pushes me into a flare. These again are probably about the 7 or 8 levels.

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In pain, I’ll notice that my blood pressure and heart rate rise and my resting heart rate will be at least 10 bpm higher than it usually is. My BP will be on the worryingly high side. I can take my painkillers, and rest and relax as much as I can, but I have difficulty doing things like holding my body upright, and everything takes so much more effort.

I also get more emotional during flares because I’m beating myself up for being useless, relying on my partner for everything including helping me to take off my bra. Pain has an effect on the body that people don’t appreciate until they experience it and it goes away. It’s tiring. It’s depressing.

It’s horrible. And because of that, it’s easier to overexert yourself because you have less energy to do the things you would regularly do, which puts you in a flare, which further depresses you… It’s a vicious circle.

I wish that there were more research on fibromyalgia, on the cause and treatments that aren’t huge doses of painkillers. I wish that the opioid epidemic wasn’t making it difficult for people who have a genuine need to get their medications. But it all adds up, unfortunately.

There are theories out there – and I’m basing this on some “opinions” that I’ve had from medical and alternate therapy practitioners, so your mileage may vary – to say that fibromyalgia is a reaction to trauma at some point in your life; physical or psychological.

I once attended a lecture where a woman claimed that it traced back in her life to her parent’s divorce at age 4 and the excessive shouting that took place then. I got told that it’s my body locking up and locking me in, and the only way to combat it was to spend £75 a week for a professional massage, by a doctor whose wife was a professional masseuse and would I like a card and a referral? I’ve been told it just happens.

I don’t have a truth to share on that. I don’t recall a specific trigger for myself. I know that the diagnostic pressure points have always hurt. I remember being surprised when I was told that normally, they don’t hurt people – it’s just pressure for normal people. It’s never been that way for me. I don’t remember a time when I wasn’t in some sort of pain, but it definitely got worse after the age of 25.

I thought I was broken until I got my diagnosis, but when we moved surgeries, I lost the doctor who was actively helping me to deal with it and started having to fight for my condition to be recognized and treated.

I have so far found one medication that helps, but my last doctor would not prescribe it because one of the side effects was weight gain. Lady, I’m already fat, but my fat a$$ can’t do anything about it if I cannot move because I am in levels of pain that you’ve never had to deal with.

So, for fibromyalgia, we live, we survive, we rest, we fight and we do what we can in a body that seems some days to actually hate us.

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02/26/2022
Is there a link between Fibromyalgia and Alien Abduction?
I was diagnosed with Fibromyalgia in 2015 and have been finding ways to keep going!

Well, let’s look at this logically.

When a person goes missing alien abduction is not on the police’s mind. At no point in their investigation does a detective state “should we not consider alien abduction.” When they have completely exhausted all areas of questioning they have to move on and they leave the case as an open “cold case.”

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Answers could include:
- The person has disappeared and they are actively choosing to remain so for whatever reason.
- The person has had an accident in a place where anybody can find them and sadly they die.
- Someone has abducted the person and either they have found no evidence or their inquiries did not look into this perpetrator.
At no point even then do the police consider alien abduction. This is something that others may consider on internet forums and chat rooms. It is outside of the general psyche.

Fibromyalgia is a syndrome that most up-to-date physicians are / or should know about.

There are no specific tests (at this point in time) to detect Fibromyalgia so the Doctor tests for other conditions that have similar symptoms to Fibromyalgia. When they have tested a patient for several other conditions and all the tests have come back clear and the symptoms have remained for six months or more a Doctor will give a diagnosis of Fibromyalgia.

Medical knowledge is not complete doctors are learning new things all the time. There may be several new conditions that come under the umbrella of Fibromyalgia at the moment. Even if doctors don’t agree with Fibromyalgia as a diagnosis, most of them understand how much their patients are suffering.

At one point they didn’t know or understand HIV or Aids, at one stage they didn’t understand or know how to treat cancer. As lifestyles change to adapt to the changes in how people live and work new medical conditions arise.

I have a feeling that the person who asked this question was trying to be funny, however, Fibromyalgia is very far from a joke. So I have given Fibro the respect it deserves and answered this question, as a byproduct of this I have treated the question with respect, that part is unfortunate and all I can hope for, is that the person asking this question never has to understand the reality of living with Fibromyalgia.

Karma may have other ideas and may make the question asker regret this.

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02/26/2022
Is there a correlation between Fibromyalgia and Recurrent Miscarriages?

Yes. The underlying disease process causing the symptoms known as “Fibromyalgia” can include an increase in anti-cardiolipin antibodies known to increase the risk of clotting and thus miscarriages.

For more information, Regarding “Chronic Fatigue Syndrome”, “Fibromyalgia”, “Chronic Lyme” & other chronic diseases in which the patient is frequently told by their doctors that; “you look fine, I can’t find anything wrong with you despite all of the labs that I’ve run”.

Chronic Inflammatory Response Syndrome (CIRS) refers to an immune system malfunction in which the immune system essentially has a broken “off” switch. Up to half of the general population appears to be genetically susceptible (shoulda’ picked better parents) to this disorder.

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“Genes load the gun, exposure pulls the trigger”, what does “exposure” mean? It can be one of many things–anything that promotes a pro-inflammatory cytokine “storm” including sepsis, Covid, mold-related illness, and other issues. Mycotoxins, poisons secreted into the local environment by certain molds/fungi, Lyme Disease, Pfiesteria, Ciguatoxin, even exposure to certain vaccines such as the Lyme & Gardisil vaccine can create the surge of inflammatory cytokines that trigger the onset of the illness.

The International Society of Environmentally Acquired Illness is a professional organization of practitioners experienced in treating this illness. Few physicians even recognize this illness other than calling it by the above names, much less have the awareness that it can be treated and reversed or the fact that while causing great suffering, it also frequently shortens lifespan.

If this doesn’t work, get a good medical evaluation

Lyme Disease, I am embarrassed to say that many of my colleagues “don’t believe” in certain diseases such as “Fibromyalgia” & “Chronic Lyme Disease” as if this was a theological or philosophical debate.

It’s not, It’s “applied biology”, AKA “Medicine” just as “applied physics” is called “Engineering”.

Sir. William Osler MD once said that “to know Syphilis is to know medicine” because syphilis (a disease that is caused by a spirochete–same family as Borrelia that causes Lyme) can affect so many different organ systems, causing great suffering and shortening lifespan with many types of clinical manifestations/malfunctions of virtually every organ system.

The fact that with both diseases there’s a long “latent” (asymptomatic/relatively asymptomatic, or with such a bizarre assortment of intermittent, nonconstant symptoms) doesn’t help.

Add to that the fact that most current lab technology has a false negative rate greater than 50% (over half of the folks with the disease test negative–as if they don’t have the disease).

In most infections, there’s a clear presence of “cure”. Chest X-rays after pneumonia clear up after infection resolves, blood counts return to normal, blood cultures become negative–the patient is “cured”.

Not so with Lyme; with most/many labs and imaging reports being normal with the disease–how do we know for certain when “cure” has happened.

Furthermore, there are two major professional organizations that weigh in on Lyme. The Infectious Disease Society of America (IDSA) is very stringent with its diagnostic criteria and when to use antibiotics to treat.

The International Society of Lyme-Associated Diseases (ILADs) has much more “liberal” criteria regarding when to “call” the diagnosis as positive and for how long to treat with antibiotics.

State Medical Boards have also been known to persecute (yeah, not prosecute, persecute) practitioners who recognize the serious nature of Lyme and treat it aggressively.

It’s a confusing illness, hard to diagnose, IMHO very undiagnosed with a H U G E portion of our population suffering due to it. There’s also strong evidence that it was genetically altered by the Dept of Defense to increase its virulence as a biological weapon with research done on Plum Island CT.

That’s the “short take” on “What’s the deal with Lyme disease”.

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02/26/2022
What is the best support that I could offer someone with Fibromyalgia?

Support someone with Fibromyalgia

Honestly just understanding, no suck it up, it can’t be that bad, get out and do something, it’s an illness that we never know how bad we’re gonna be so plans are pointless, invite but don’t get upset if they bail, etc, when we do get good days you can guarantee we will do all we can then have a crash for 2 weeks as did way too much, a job looks simple to you not so much to us.

I get bad paraesthesia just typing imagine having to scrub the shower I look and know in 1/2 minutes I’m going to have crippled hands so why bother to start, or we can start a job then gets too hard so we move on to another simple thing and repeat till everything is a bit done, etc, most people with fibro are just angered by assumptions like we love being “lazy”.

We enjoy bailing on plans or eating toast as haven’t the energy to go shop or even not eating as can’t even manage that, seriously I have eaten one mouthful, and like nope I can’t even lift a spoon or have the energy to chew my food, we’re tired all the time except for like 2 hours when it’s midnight, oh then is 50/50 if we can sleep and even if we do sleep we do not hit deep sleep so always tired which causes more pain.

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Which causes worse sleep issues which causes more pain…. round and round it goes, so we have to have an order I need to do x.y z they are a must so we do those and anything else is a bonus, look up “spoon theory” this may give you more of an idea, or for example, let’s say you have a phone the charging is unpredictable you plugin for the night and is a surprise what % you may get so you wake up.

It’s at 50% everyone else is 100% I have the same things to do as you but on 50% battery so have to optimize, leave out some things that take me down to 0 plug phone in the next day because I had to squish stuff in and that messed up my “battery” more today I have 40%, 3 days later I’m only getting to 5% so I need to do nothing to try let battery recover to a better amount.

Also as my battery is “weak” what takes your battery 1% to do takes mine 4%, so for you having a shower jump in scrub feel refreshed, etc, for me a shower actually takes energy away from me, a walk to the corner shop for you nothing for me like walking the marathon with a limp, we also are VERY good at faking being fine, as we can’t just lie on floor screaming due to the pain all day.

Just picking up a cup can make it feel like a bone has broken in my hand but I can’t scream every time, we can “continue” with pain most people rush to er for, but in the confines of our homes we’re in pajamas easy clothes, pottering when we can resting and chomping meds that don’t help much, so basically anyone you know with FMS feels shit enough as is w/o people who cannot know what it is actually like judging.

“Just exercise” “you need change diet” ya de ya trigger phrases do NOT use them, and in my experience most of US with FMS just want people to grasp what we are dealing with and not brush it off, believe me, most of us at Doctors begging for any fucking help so we’re not this pointless waste of flesh but there’s not even a definitive way to diagnose it let alone treat it.

I am using FMS as fibromyalgia syndrome as it is NOT one problem it is up to 200 symptoms so do you think we’re having fun? headaches lasting weeks? bruising easily, IBS, brain fog, short term memory fucked to shit, I’m at can forget what doing while I am doing it, paresthesia, vertigo, dizziness, eye muscle weakness, just to list a few symptoms bar the “pain”

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References:

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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02/25/2022
When did you realize that your symptoms were all due to Fibromyalgia?

In addition to chronic pain throughout my body, I am always tired. Sometimes I am so tired that my husband has to help me up the stairs and into bed.

Then, every day around 3:00 – give or take a half an hour – I have to try to live with fibro fog. It’s actually what it sounds like. In the late afternoons, it feels like someone has pulled a gauze bag over my head. I can still see out and I can hear voices, but everything is muted and fuzzy.

I can pay attention to what someone is saying, but don’t quite understand it. And within minutes I’d forgotten what we talked about. I feel confused and “out of it.”

One of the worst changes I have gone through with fibromyalgia is becoming less intelligent. No one seems to talk about this but it’s true. I used to be really smart. I was the major caregiver of our two children ages 5 and 2 with one of them already exhibiting signs of mental illness.

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I started a business with no college degree or money and grew it until it was quite successful. I volunteered in our community acting as an election official in various elections. I was the executive director of a community-wide outdoor celebration that attracted about 20,000 people each year.

Today, I would not be able to keep track of all the details, and I would not have the energy to juggle all the people, business needs, and community expectations that surrounded me.

As far as recognizing I had FM – I didn’t. I got sick in 1989 and although I saw numerous doctors – some of whom were specialists – no one could find anything specifically wrong.

Remember, even though FM had been written about in the medical literature for centuries, it was a new medical disorder in 1980. And for that decade, and even longer, it was not accepted as a “true” disorder. Because 98% of FM sufferers are women, many patients were referred to mental health professionals.

Finally, in 1996, I went to see a new rheumatologist. He spent a long time examining me and asking questions. When he finished he said, “You have fibromyalgia.” I had never heard of it. He gave me a brochure and said,

“The good news is, it won’t kill you.”

Wait, what?

No, it won’t kill you; it’s a life sentence with no chance of parole.

I’ve had 30 years to make my peace with fibromyalgia, and I don’t let the various symptoms upset me or cause depression. I don’t talk about it very much anymore. I’ve come to the conclusion that this pain and fatigue aren’t a symptom of something wrong with me that needs to be fixed. The pain and fatigue have shaped the person I am. They are as much a part of me as my heart and lungs are.

The short-term memory loss, insomnia, lack of appetite, Irritable Bowel Syndrome, and whatever else I can’t think of at this minute (it’s 3:03 pm and soon the fibro fog will come) define me as much as the color of my eyes and my smile.

I don’t complain about FM symptoms anymore. My husband is doing his best to take care of me and he doesn’t need to put up with a bunch of complaining and whining. If I need to cry about a missed opportunity, I do it when I’m alone.

Fibromyalgia is not only affecting me. My husband, family, and friends are experiencing it second hand through how I act and what I say. Fibromyalgia is miserable. The people around me have their own problems; they don’t need to take on any of mine.

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02/25/2022