Dry Eyes and Mouth due to Fibromyalgia

Fibromyalgia is typically characterized by widespread pain, fatigue, headaches, irritable bowel syndrome, inability to get refreshing sleep, waking up tired and stiff and developing cognitive disturbances including lack of concentration and clumsiness, dizziness etc.

Fibromyalgia syndrome is a chronic and long term condition that has no cure. About 10 million people are currently diagnosed with this disorder. Although 9 out of 10 people diagnosed are women, men also get this disorder.

Fibromyalgia association with other conditions

Studies have shown that fibromyalgia is also associated with several other conditions. Typically some patients with fibromyalgia also experience dryness of the cornea or eyes and mouth.

Presence of ocular discomfort or eye dryness and grittiness is one of the more common complaints of fibromyalgia compared to oral or mouth dryness. Studies have shown that there may be alteration in formation of tears when compared to general population.

Sjogren’s syndrome

A syndrome condition called Sjogren’s syndrome is typically characterized by dry eyes and inability to form tears. It has been seen, however, that fibromyalgia patients with dry eyes and dry mouth do not satisfy criteria for diagnosis of Sjogren’s syndrome. They are commonly diagnosed with Dry eye and mouth syndrome (DEMS).

Corneal sensitivity and corneal changes

A study looking at corneal sensitivity and corneal changes among fibromyalgia patients shows that the sensitivity is same irrespective of age of the fibromyalgia patients. This could be due to the deterioration of the nerves and sensory systems of the eye.

Association between fibromyalgia, chronic fatigue and Sjogren’s syndrome

The study also finds association between fibromyalgia, chronic fatigue and Sjogren’s syndrome.

Tear secretion is markedly decreased in fibromyalgia but not to the extent of other dry eye conditions. Further the eye becomes more sensitive to high levels of carbon dioxide, heat, and cold compared to normal persons.

Normal tear formation

Normal tear formation is controlled by the lacrimal functional unit that includes cornea, conjunctiva, accessory lacrimal glands, and meibomian glands. These are all connected with a fine network of nerves.

If any portion of this nerve network is impaired, tear production may be hampered. This is something that occurs in fibromyalgia patients.

Dry mouth

Fibromyalgia is closely associated with irritable bowel syndrome and reduced salivary secretions leading to dry mouth. Dry mouth in itself is rarely present. It is more commonly associated with dry eyes in patients with fibromyalgia.

Abuse on the rise of prescription drug gabapentin, known as ‘Johnnys’

If you aren’t on this medication, chances are you know someone who is. It’s used to treat everything from pain to mood disorders and can be just what the doctor ordered for many.

But now, there is mounting research uncovering misuse of and even a black market for this popular prescription.

We’re talking about gabapentin. It’s approved for some types of seizures and nerve pain.

Doctors also use it off-label to treat everything from insomnia to migraines to anxiety. Sixty-four million prescriptions of it were sold in the U.S. in 2016, up more than 60% from four years earlier.

The thing is, experts say there is growing evidence it’s being abused, too. It’s even being sold on the streets under the name “Johnnys.”

Dr. Joseph Insler, an addiction psychiatrist, says he’s seeing it all too often.

“Sometimes, I’ve even experienced patients ask me for their “Johnnys” and then they’ll, maybe, catch themselves and say, ‘No, no, no. I mean gabapentin’,” he says.

Why is this prescription being misused?

“I think that some individuals may say that they use it to get high, and others may say they use it and get a drowsy effect. So, we’re talking about the euphoria versus sedation, “ says Rachel Vickers Smith, Ph.D.

Dr Vickers Smith wrote her dissertation on gabapentin abuse when studying drug abusers in Appalachia.

“We found a nearly 3000 percent increase from 2008 to about 2014 in individuals reporting gabapentin abuse for the purposes of getting high,” she says.

We wanted to see for ourselves, so we searched online. We easily found people talking about taking “Johnnys”, or gabapentin, to get high. There were also threads of people trying to spread awareness about the abuse.

Experts say gabapentin is typically misused by substance abusers who mix it with other dru

But, Dr. Insler says it’s also possible for people with legitimate prescriptions to misuse, too.

He says, “If somebody’s taking excessively high doses or needing early refills” or if their mood changes, family members or clinicians should see these signs as red flags.

A growing body of research shows the problem of abuse, especially among substance abusers is clear.  But some experts also worry about the number of prescriptions being handed out.

A recent New England Journal of Medicine letter warned that “clinicians who are desperate for alternatives to opioids” are “increasingly prescribing gabapentin” and that “evidence suggests that some patients misuse, abuse or divert gabapentin.”

Dr Rachel Vickers Smith says, “ I think that’s why it’s really important to get out the message,” about abuse, in general.

Gabapentin is not a controlled substance or scheduled drug on the Federal level.

We reached out to several government agencies. There was little information on potential abuse although the National Institute on Drug Abuse pointed us to existing research and the DEA says it is beginning to receive calls.

Dr Vickers Smith says, “ I don’t think that gabapentin abuse is on the CDC, DEA’s, NIDA’s radar, in part because we had this opioid epidemic.”

All experts we talked to stress that this is NOT the next opioid epidemic, but they believe gabapentin abuse is something to watch closely and believe more research is needed.

We contacted two of the manufacturers of gabapentin, including Pfizer, which told us,  “Gabapentin is an important treatment option for their approved indications”.

The Part of Life With Fibromyalgia I Haven’t Told You About

I’m a fairly open person when it comes to physical and mental illness, but I can also be very reserved, especially about my chronic pain and fatigue. It’s not because I don’t want to share about what’s going on with me, but because I don’t want people to think I’m a “whiner” or “attention seeker.” I am neither of those things. In fact, I’m quite the opposite.

A lot of people know I have fibromyalgia. What they don’t know is the reality of what I deal with. They see a positive, silly, young 25-year-old woman on the outside, but they don’t realize how much pain I’m in, or how badly my anxiety is affecting me. I don’t think people really understand the intensity of my conditions. I’ll admit that part of it is my fault, for showing only the good parts of my life on social media, but showing the not so good parts can sometimes come off as attention seeking. I don’t want attention, I want my conditions to stop being stigmatized. I don’t want pity, I want people to understand these illnesses.

Here is the reality of someone with fibromyalgia:

1. Pain

When you tell someone you’re in pain, they don’t really take it very seriously. They usually think that you have a typical headache or back ache. They don’t realize that your whole body is experiencing aches, stabbing pain, needles, numbness, or often times a burning sensation. The also don’t realize that the clothing you’re wearing, or the cloth chair your sitting on could be causing you pain as well. People with fibromyalgia have sensitives to certain fabrics and materials. Some of us (including myself) feel pain in their organs. I’ve had ovarian pain for years, and didn’t know what it was until I was diagnosed with fibromyalgia.

Our pain is often unbearable, and can cause difficulties in every day situations. When I’m going through bad flare-ups, I am sometimes late to work. It seems like no matter how early I wake up, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are locked, and my hands ache. Carrying a grocery basket can cause my hands and elbows to tense up, opening jars is sometimes impossible, household chores can take everything out of you, and the list could go on.

2. Fatigue

Speaking of being late to work, fatigue is another reason it’s so difficult to get out of bed. I could have had the best sleep of my life, but it will feel like I didn’t sleep a wink. For me, chronic fatigue is one of the most difficult symptoms. There have been days I’m nervous to drive long distances because the sun causes really bad fatigue. I work a desk job, but by midday, I feel like I’ve been doing hard labor, and all I want to do is go home and sit on the couch. And good luck trying to schedule anything with me after work. I’ll just be too exhausted to do anything. If you’re able to get me to hang out with you on weekdays, it’s probably because no matter how tired I am, I really need your company.

3. Brain Fog

This is the last symptom I will touch on. Brain fog is a bitch to say the least. Completely forgetting a conversation you had yesterday, having to pause mid sentence because you forgot what you were saying, or stopping a conversation altogether because you can’t think of the right words to use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me because of this. I find at times, I can’t even remember how to spell a word when I’m typing. I proofread my text messages, emails, and social media posts multiple times before pressing the “send” or “submit” button. The embarrassment of brain fog causes me so much anxiety. I just want people to know can’t control the way my brain works sometimes.

Here are some other common things fibro warriors struggle with:

1. Mental illness including, but not limited to, depression and anxiety.

2. Temperature sensitives. Summers, and especially Winters are often unbearable.

3. Irritable bowel syndrome (IBS).

4. Night sweats/hot and cold flashes.

5. Insomnia.

6. Painful and irregular menstrual cycles.

7. Problems with balance.

8. Tinnitus (ringing in ears).

9. Restless leg syndrome.

10. Rashes and skin disorders.

It’s very common that individuals with fibromyalgia will struggle with different symptoms than others. All symptoms are different for everyone, so it’s difficult to explain to doctors what your symptoms are. Chronically ill patients seem to know about their illness than professionals, and that can be hard when it comes to medications and treatments. We’re all in this together, and we need support and understanding from the people and loved ones in our lives.

I hope this sheds some light on this awful illness. If you know someone living with fibromyalgia, go give them a (gentle) hug and ask what you can do to help them. Just being there to listen could mean the world!

The Mask of Invisible Illness and Fibromyalgia

by Elizabeth (Hope in Pain)

I’ve been thinking a lot lately about the term ‘invisible illness.’ During a hospital stay last year I had a discussion with a few other chronic pain patients about the benefits and drawbacks of living with a visible illness compared to an invisible one. Oh yeah, those hospital stays get crazy!

With a visible illness one lady explained, you can never get away from it. As soon as anyone sees you, they see your illness. You’re immediately pigeonholed as the ‘disabled person.’ With an invisible illness on the other hand, you can choose who knows about your diagnoses.

While that’s true, the reality of living with an invisible illness means people assume you are just like everybody else and can, therefore, do everything just like everybody else. This means constantly having to explain why you can’t do something, why you get treated differently etc etc.

Every morning (okay, five mornings a week) my little companion and I go for a walk. We often pass a couple also walking their puppy, the husband is a colleague of mine. As I said good morning to them last week it dawned on me that, to the outside world, the couple and I look just the same. We all get up around the same time, take our dog for a walk, go home for breakfast and then head to work. The husband generally arrives at work before me and leaves after me but that could easily be explained by the fact that his position is senior to mine.

What nobody sees is the struggle it takes me to get out of bed each morning; that I’m not taking my dog for a walk, I’m walking because my knees and back demand it, it just so happens that I have a dog who also benefits from this routine. Nobody sees the exhaustion I face when I get home; the rest I have to take before, during and after I shower. Nobody knows that I used to be an early to arrive, late to leave worker but that my body simply won’t allow me to be that way anymore.

My point is, one of the reasons fibromyalgia is an invisible illness is because we try so hard to be healthy and do things just like everyone else that in doing so, we make our illness invisible. When my fibro was at its worst it was visible to the whole world. I couldn’t sit or stand up straight, my shoulders were permanently hunched over, my head hung low. My knees couldn’t bend so I shuffled along slower than a tortoise. My immunologist described it best “You looked as though every part of you was in agony.” Even now I might limp when my knees are having a particularly bad day, walk slower when I’m more tired than usual. At times you will see me with a heat pad stuck on the back of my shirt, or TENS machine wires sticking out of my top. It’s on these days that other people can see my pain. But it’s not only these days that I feel it.

If you can see my pain it’s because I’m in agony and no longer have the strength to hide it. If you see me and don’t see my pain, it’s still there, it hasn’t gone away, I’m just managing it better.

I constantly struggle with not wanting to be known as the ‘sick girl,’ but also not wanting to have to explain why I can’t do certain things. Being the ‘sick girl’ gives you an out. People might not know or understand the details, but they also don’t question when you turn down an invitation or say “that’s just too much for me right now.” Looking healthy and turning down invitations brings questions. Why do we find it so hard to say no?

This post was written by Elizabeth of Hope in Pain and is reposted here with permission. Elizabeth lives in Australia and has been living with chronic pain for 22 years.

Brain Scans Suggest Pain of Fibromyalgia Isn't Imaginary

"There's a heck of a lot of stigma associated with chronic pain conditions like fibromyalgia. I think it's going to make a lot of people feel much better to know that there are physiologic changes you can find."

"Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important," explained senior study author Marco Loggia. He is associate director of the Center for Integrative Pain Neuroimaging at Harvard Medical School.

The new research used an advanced imaging test called positron emission tomography (PET) and looked at 31 people with fibromyalgia and 27 healthy "controls" from Boston and Stockholm, Sweden.

Dr. Harry Gewanter, a master of the American College of Rheumatology, agreed the findings could bring comfort to patients.

"There's a heck of a lot of stigma associated with chronic pain conditions like fibromyalgia. I think it's going to make a lot of people feel much better to know that there are physiologic changes you can find," Gewanter said.

Fibromyalgia causes pain throughout the body, according to the U.S. Centers for Disease Control and Prevention. The condition also causes sleep problems, fatigue and difficulty with thinking and memory.

The disorder affects about 4 million Americans, the CDC reports. The exact cause of fibromyalgia is unknown, though the researchers said it's likely a disease of the central nervous system. Medications and lifestyle modifications can help manage the condition.

All of the volunteers in the study underwent PET scans. Fibromyalgia patients in Boston were heavier than the healthy controls in Boston, and those in Stockholm with fibromyalgia. The researchers said this was the only significantly different variable between the two groups.

When the researchers compared the scans of people with fibromyalgia to healthy controls, they saw more inflammation in the connective tissue in the brain (glia) in people with fibromyalgia.

Loggia said the findings might lead to better ways to test fibromyalgia treatments, to see if they reduce inflammation. It's also possible that this finding may eventually help researchers tease out the cause of the disorder.

Gewanter said this study gives scientists a number of possible directions to go. One is to be able to follow a treatment to see how well it works. Another is possibly developing ways to intervene with new treatments.

Now, treatment focuses on medication and lifestyle changes. According to the CDC, people with fibromyalgia are encouraged to try to exercise 30 minutes daily most days of the week. And establishing regular sleep habits can help, as can reducing stress as much as possible, perhaps using yoga or meditation.

The study was published recently in the journal Brain, Behavior, and Immunity.

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Here are some question-and-answer threads from MyFibroTeam:

• I have a friend who does not understand my fatigue level. The thing that upsets me is she says 'just drink an energy drink' on a consistent basis. I've tried to explain it is not the same thing as just being 'tired.' Does anyone have any suggestions on how to handle these scenarios?

• How do you explain how things affect you to others?

• Does anyone else feel that their fibro symptoms have gotten progressively worse over the years?

Here are some conversations from MyFibroTeam:

• "I have had many unpleasant experiences with doctors pre-post-diagnosis. I changed doctors after 5 years of complaining about recurring symptoms, one doctor implied I was moaning over imaginary symptoms." 

• "Tomorrow I will be back at work. I’ll make the best of it but I’ve decided not to fake being well. They want me back at work I’m letting them see what this looks like. No fake bounce in my step no forced smile no pretty face." 

• "I had to use my walking stick at work, which I felt embarrassed about. I’m worried people will think I’m faking it. No one helped me or asked me how I was."

10 Signs Of Fibromyalgia To Never Ignore

“Fibromyalgia, also known as fibromyalgia syndrome (FMS), is a chronic condition that characteristically causes pain all over the body, including muscle and joint pain, and fatigue as well as other symptoms. Fibromyalgia can lead to depression and social isolation.” – WebMD

Fibromyalgia is a particularly distressing condition that can affect someone both mentally and physically.Upon awakening, someone with fibromyalgia commonly experiences a rapid onset of fatigue when attempting to move their body.

The severe mental and physical complications of fibromyalgia can make one’s daily routine a difficult path to navigate. Before delving into the signs of fibromyalgia, here are some relevant facts about the condition:

– Women aged 25 to 60 comprise the majority of fibromyalgia patients.

– Women are 10 times more likely to develop the condition.

– Diagnosing fibromyalgia requires a comprehensive physical examination, as a physician must rule out any other similar conditions.

– A blood test, specifically a full blood count (FBC) and thyroid exam, is routinely undertaken to diagnose the condition.

– Upon a diagnosis of fibromyalgia, patients are often referred to a rheumatologist for proper treatment.

We sincerely hope that this article is insightful, and inspires those that may be stricken with fibromyalgia to seek medical guidance.

HERE ARE TEN POTENTIAL SIGNS OF FIBROMYALGIA TO NEVER IGNORE:

1. HEAD-TO-TOE PAIN

The majority of those who visit their doctor – and ultimately diagnosed with fibromyalgia – complain of proliferating body pain. According to WebMD, approximately 97 percent of those with fibromyalgia experience pain across the body.

Fibromyalgia pain is often described as “deep, sharp, throbbing or aching,” and can affect ligaments, muscles, and tendons. The pain associated with fibromyalgia is often consistent and unresponsive to typical over the counter (OTC) pain medications.

2. PERSISTENT FATIGUE, OR EXHAUSTION

Fatigue is the second most common complaint of people diagnosed with fibromyalgia. The primary difference between someone experiencing “tiredness” and extreme fatigue (i.e., exhaustion) is the duration of associated symptoms.

Those with fibromyalgia frequently associate their sense of fatigue as being stricken with the flu. They are simply unable to perform at a normal level. This feeling of exhaustion applies to simple tasks, exercise, and even waking up.

3. BODY STIFFNESS

More than 75 percent of those with the condition experience bodily stiffness, particularly during morning hours. This physical sense of rigidity is similar to those diagnosed with arthritis, especially inflammatory or rheumatoid arthritis.

In some cases, these symptoms fade within 10 to 15 minutes; in others, they’ll last the majority of the day, if not all waking hours.

4. POOR QUALITY SLEEP

Due to their physical and mental states, those with fibromyalgia find it difficult to get quality sleep. One reason for this is the erratic brain activity experienced in fibromyalgia patients during rest. This uneasiness in falling asleep is followed by interruptions caused by irregular brain activity.

5. “TRIGGER POINTS” THAT EVOKE PAIN OR TENDERNESS

Similar to arthritis patients, those with fibromyalgia usually have “trigger points,” or areas of the body that produce painful sensations in disproportionate frequency.

Sadly, when pressure is applied, these “trigger points” are extremely painful. Fortunately, if and when fibromyalgia is diagnosed, a specialist can provide valuable insights into managing them. Readily available anti-inflammatory OTC’s, such as Aleve and Naprosyn, can alleviate some of this pain.

6. ABNORMAL DIGESTION

Constipation, diarrhea and bloating are all potential symptoms of fibromyalgia. According to WebMD, approximately 40 to 70 percent of patients experience symptoms similar to Irritable Bowel Syndrome, or IBS.

Acid reflux and gastroesophageal reflux disease (GERD) are reported at a similar rate.

7. NUMBNESS, SWELLING OR TINGLING

About half of those with fibromyalgia experience a “pins and needles” sensation in their arms, feet, hands and legs – a condition known as paraesthesia. For some, these sensations may last no longer a few minutes; for others, they can be quite consistent.

Related article: 8 Ways to Relax Your Muscles and Relieve Pain

Similar to many fibromyalgia-related symptoms, paresthesia is often barely noticeable. It is important, however, for those experiencing frequent numbness, swelling or tingling in the arms, feet, hands or legs to seek medical advice.

8. SPASMS OF THE FINGERS AND TOES

Said to be present in 25 to 50 percent of fibromyalgia patients are arterial spasms of the hands or toes. This symptom occurs as a result of exposure to either cold or stress. Importantly, affected areas will often take on a bluish or pale coloration and also accompanied by pain.

Known as Raynaud’s syndrome, or Raynaud’s phenomenon, the aforementioned symptoms often dissipate when heat is applied.

9. SENSITIVITY TO TEMPERATURE

Because of their bodily state, it is quite difficult for those with fibromyalgia to regulate their body temperature. As you’ve likely noticed by now, some of the above-mentioned symptoms are strikingly similar to arthritis.

It is common for any fluctuations in temperature to be ill-received by those with fibromyalgia. At times, afflicted patients complain that the environment is too cold or hot to their liking – a symptom that makes it difficult for them to be productive or properly rest.

10. ‘FIBRO FOG’

Similar to ‘brain fog,’ fibromyalgia may manifest into concentration problems. Also, people with the condition may experience short-term memory difficulties. They may also have general feelings of confusion, forgetfulness, and lack of mental clarity.