Posts Tagged ‘Myth Debunked’

Myth Debunked VI of VI

June 6, 2021

FIBROMYALGIA DIAGNOSIS IS THE END OF THE ROAD

Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’.  This ties into the point of the trashcan / umbrella diagnosis.

Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.

Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.

Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.

While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them. 

My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.

What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..

Myth Debunked V of VI

May 30, 2021

IT IS A MIDDLE AGED WOMAN’S ILLNESS

Although more women than men are diagnosed with fibromyalgia, the condition can affect men, women and children. The condition doesn’t discriminate by age, race or gender.

Myself, my issues started at age 19-20 when I has mono during summer break

They have also found that with the new criteria, there are many more men who are getting accurately diagnosed with fibromyalgia.

Myth Debunked IV of VI

May 23, 2021

IT’S ‘JUST WIDESPREAD PAIN’

LOL! Aren’t you the funny one? If only….

Widespread pain is the common factor among those with fibromyalgia, though there are also particular points in the body more sensitive to pain (‘tender points’) that many experience and are often used in the diagnosis of the condition. Pain types also vary, from stabbing and burning, to aching and throbbing. There are also numerous other symptoms commonly found with fibromyalgia, from digestive troubles and fatigue, to stiffness and cognitive problems (aka ‘fibro fog’).

Symptoms not only vary between people. They can vary for the same person, minute by minute, day by day. It’s unpredictable and no two days are ever quite the same. There can be ‘flares’, where symptoms are considerably more severe compared to that person’s usual baseline; such flares can be unbearably exhausting and painful.

The extensive myriad of symptoms of fibromyalgia can’t simply be pushed through nor is it a case of mind over matter.

Myth Debunked III of VI

May 16, 2021

IT’S NOT A REAL CONDITION

What makes a disease, disorder or illness real? The terms used for any condition have been coined by someone for the first time and added to medical manuals to account for certain diagnostic markers or symptoms.

What makes that condition real? The lack of a specific test to definitively conclude the presence of fibromyalgia does not make it any less real than the many conditions that likewise lack a particular test for diagnosis. Diagnosis of fibromyalgia is challenging and often involves a process of elimination. Nonetheless, there are specific diagnostic criteria to be used in a diagnosis of fibromyalgia.

Fibromyalgia is also an invisible illness. Just because someone may look ‘fine’ does not mean that they are. Many Fibromites and those with chronic pain have become skilled at downplaying just how poorly they’re feeling and how bad their pain and other symptoms really are. “I’m fine” is probably our most common lie.

There are several different version of this all of which are accurate.

Just because a condition cannot be seen from simply looking at a person does not mean the illness does not exist.

Myth Debunked II of VI

May 9, 2021

IT’S AN UMBRELLA TERM

Yes and No.. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.

Yes

Fibromyalgia encompasses a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have CFS/ME, Osteoarthritis, Joint arthritis, Depression Hypothyroidism Endometriosis, IBS and Myofascial Pain Syndrome. and so on. I was diagnosed with fibromyalgia in 2006 by a rheumatologist who said I had “Symptoms consistent with Fibromyalgia” was further confirmed with the trigger point test. I even had to correct a doctor who didn’t know exactly when the points are. As a patient of Dr Bested at the Environment Health Clinic and eventually her private practice, she had me running tests out of the wazzo. The results just confirmed yes I have fibromyalgia. I was also ‘diagnosed’ with CFS at that point, but I know if been dealing with even longer than fibro.

No.

Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis for many doctors to accurately reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’rel presenting them with.

Although it can involve various symptoms, the current list I’m aware of for possible symptoms is over 300 long. Any of these can be experienced differently by each person.

Fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.

Myth Debunked I of VI

May 2, 2021

IT’S A PSYCHOLOGICAL PROBLEM

Fibromyalgia is a real condition affecting the physical body; it’s not “all in your head”. The notion that fibromyalgia is a psychological problem and not a ‘real’ physical condition is sadly still too common and can be incredibly insulting. While the cause is not truly known, some can pinpoint when it began or what they think may have triggered it. But many others can not. We *believe* my fibro started due to Mono in college.

There will be instances where the mental and physical correlate, where the mind-body connection is a two-way street. Some believe mental disorders may be precursors for fibromyalgia in some cases or that mental illness may make a person more exposed to developing such a condition.While yes, I do have mental health issues, they started long before I had fibro symptoms plus we do know the instigating factor that started my mental health issues.

Most people with fibromyalgia are experiencing physical illness with biological abnormalities, which may then negatively affect mental health as a result of the impact to their physical health, work, relationships, lifestyle and so on.

Fibromyalgia is a real physical condition, not an imagined one, with real physical consequences. It has been acknowledged for centuries but was first classed as a mental disorder, before becoming viewed as a rheumatic disorder by the early 1800s. It was given the name ‘fibromyalgia’ in 1976, derived from the Latin “fibro” (relating to fibrosis tissue) and the Greek “myo” (for muscle) with “algia” (pain). By 1990, diagnostic guidelines were implemented by the American College of Rheumatology and the first prescribed medication was made available by 2007.

Recent research has been increasingly revealing of physical markers of fibromyalgia, such as increased blood flow among certain regions of the brain, low levels of the hormone somatomedin C, low levels of the muscle-cell chemicals adenosine and phosphocreatine, high levels of the neurotransmitter ‘substance P’, and dysregulated blood blood cytokine and chemokine patterns.

Myths of Fibromyalgia – Myth 6/6

May 12, 2020

While Pain is the top symptom follow by debilitating fatigue, there is a list of over 200 possible symptoms of Fibromyalgia. Note, you can have two different symptoms that show up at different times.

Myths of Fibromyalgia – Myth 5/6

May 12, 2020

 

 

Different people react differently. There is a post I did somewhere titled  My Fibro is Not your Fibro. While 2 people may both have the same condition, their pain & other symptoms can be on opposite ends of the spectrum.

Myths of Fibromyalgia – Myth 4/6

May 12, 2020

This is so wrong. While there is no cure, this can be managed.

Pharmaceutical options include Lyrica, Gabapentin, Savella ( US), Cymbalta, SSRI anti-depressants such as Paxil or Prozac, trycyclics anti-depressants like Amitriptyline, muscle relaxants like Flexeril or Baclofen, sedatives for sleep such as Imovane, pain medications from Tylenol to Tramadol to Fentanyl (not my recommendation) or Medical Marijuana in its synthetic & natural forms where available. Also available at many pain clinics are injectable pain treatments. These include trigger point & nerve injections, lidocaine infusion and epidural for accompanying issues. 

Other non-prescription medical practitioners that may help include osteopathy, physiotherapy, occupational therapy, chiropractic, acupuncture, RMT, as well as those who practice Biofeedback therapy and CBT.

Vitamin supplements have been recommended. While a daily vitamin is good for almost everyone, there are many others that are suggested to help Fibromyalgia. Depending on who you talk to, these include vitamins A, B, C, D, & E, zinc, magnesium, calcium, 5-HTP, SAMe, fish oil/Omega 3s, Saint John’s Wart, and melatonin. Additionally a healthy diet is always optimum. Include  fruits, vegetables, whole grains and low-fat dairy if you’re not sensitive to them, healthy oils, legumes, and low-fat protein, like fish and chicken. Try to limit alcohol, sugar, caffeine & processed foods, and remove MSG &: Aspartame. It is also recommended to reduce or remove heavy foods such as dairy because of possible links to serotonin. Please talk to a doctor before making any significant diet changes.

Exercise such as mild stretching, walking, yoga (there is chair yoga & even a video of yoga for fibro floating around), tai chi and water aerobics can be helpful. For those in betters shape, try aquafit classes, jogging/running, swimming and hot or power yoga. Again, please speak to your doctor before making significant changes to your fitness routine.

Meditation & mildfulness have also helped many. 

Home treatments include cold such as ice packs,  heat such as heating pads, hot baths or a hot tub, muscle rubs like A535.

Most importantly is self-care. This includes reducing stress, getting sufficient healthy sleep, regular exercise, ensuring your home environment is safe comfortable & healthy and pacing one’s self as per your current abilities.

– – – – – 

My personal regime? It’s changed over time & sine is currently on hold due to COVID19. I currently take a muscle relaxants, a sedative when needed, synthetic & natural CBD/THC, an an-inflammatory but that’s not really for the fibro), and Tylenol 3’s. I take melatonin most nights & have sedatives for when needed. I also get trigger & nerve point injections. In the winter, I also get an epidural or 2 for the OA in my lower back.

I try to watch my diet, but I love sugar & dairy. I also forget to eat sometimes.  I also take Vitamin D supplements.

I have multiple muscle rubs depending on what the pain is as well as both a heating pad & heating blanket. I also find, for me, orgasms help me relax.

Once COVID19 clears I will again have access to osteopathy, physiotherapy, massage, and my gym for the hot tub, yoga, aquafit and eventually back to Arriba.   In the mean time I am trying to get out for walks, jogs, or do the online classes from my gym but lack of motivation is getting to me. 

Admittedly, what I’m missing most is the hot tub.  And the social aspect with the other “Y” ladies.

Myths of Fibromyalgia – Myth 3/6

May 12, 2020

 

 

While Fibromyalgia does impact women twice as much as men, anyone of any race, age or gender can have the condition.