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Why Is It So Difficult To Diagnose and Treat Fibromyalgia?

Why Is It So Difficult To Diagnose and Treat Fibromyalgia?

Fibromyalgia which is also known as fibromyalgia syndrome (FMS), is a long-term illness that causes the sufferer pain throughout their entire body. The symptoms of fibromyalgia are wide ranging, and this can mean it is extremely difficult to diagnose. The difficulty in concluding on a definitive diagnosis can mean that the fibromyalgia sufferer has to undergo numerous tests and can even have to see several doctors before the issues can be pinpointed.

What are the Symptoms of Fibromyalgia? 

The primary symptom of fibromyalgia is widespread pain throughout the entire body, this can be debilitating and extremely difficult to live with. Other symptoms of fibromyalgia include:  

  • Muscle stiffness
  • Sleep issues
  • Extreme fatigue
  • Fibro
  • Migraines and headaches
  • Irritable bowel syndrome
  • Increased sensitivity to pain

If the symptoms sound familiar it is always best to consult your GP. However, many people encounter difficulties with their GP when been assessed for fibromyalgia and it can even take years before a definitive diagnosis is made.

How to treat Fibromyalgia?

There is currently no cure for fibromyalgia but there are treatments that help to relieve symptoms of the condition and make it easier to live with fibromyalgia. It really depends on what symptoms the patient has. The symptoms that the patient is suffering will dictate what treatment a doctor elects to pursue.

Treatments include medication such as painkillers and antidepressants. However, these medications can have undesirable side effects and may not be advisable in the long-run. In August 2020, The National Institute for Health and Care Excellence (NICE) published a statement disclosing that commonly used treatments for chronic pain can do more harm than good. This is a serious matter to consider when a patient will likely have to deal with chronic pain for the rest of their life, using medication that can have long-term ramifications may not be the best course of action. Opiates especially can have a devastating effect on the user, leading to possible addiction and the destruction of personal relationships.

Another treatment option is talking therapies like counselling or psychiatric sessions. Cognitive behavioural therapy (CBT) could also be an option for those dealing with the excruciating side effects of fibromyalgia. 

Lifestyle changes such as diet and exercise regimes can also be prescribed. However, this can often seem patronising at the time of diagnosis. Vague statements about improving the diet that is consumed can often cause more confusion. While diet is crucial to being healthy, even in totally healthy people. It is particularly pertinent for those who suffer from fibromyalgia. Exercise has been found to have some really positive effects for people with fibromyalgia, including a reduction in pain.

What is the cause of Fibromyalgia?

The true cause of fibromyalgia remains unknown and has yet to be defined. Fibromyalgia is thought to be related to abnormal levels of certain chemicals in the brain which in turn alters the way in which the central nervous system processes pain signals and how these pain signals are sent around the body.  The central nervous system is made up of the brain, spinal cord and nerves, the central nervous system is integral in almost all bodily functions.

Genetics are also believed to be a factor in those who develop fibromyalgia. Genes that are inherited from parents seem to be a factor in those who unfortunately develop fibromyalgia.

Fibromyalgia in many instances, can be triggered by an emotionally or physically stressful event like:

  • Pregnancy and giving birth
  • The death of a partner, family member or close friend
  • Major surgery
  • Injury
  • A severe infection
  • Breakdown in a romantic relationship

The brutal thing about fibromyalgia is that it is not just the physical pain that sufferers have to endure. The toll fibromyalgia has on sufferers’ mental health can be equally debilitating. Depression and anxiety can grow to become a crippling illness in their own right, the antidepressants that are often prescribed to deal with the emotional fallout of a fibromyalgia diagnosis can be detrimental to the user’s long-term mental and physical health. 

Those who have fibromyalgia can find it hard to accept that the true cause of fibromyalgia remains unknown. It is much easier to deal with a condition you are diagnosed with once you are aware of the cause of the problem. Many people who have fibromyalgia have said that the fibromyalgia diagnosis process takes far too long and there is a distinct lack of understanding about the condition within the medical community with many GPs not appreciating the severity of the condition. 

Who is Affected by Fibromyalgia? 

Nobody is immune from developing fibromyalgia and it can be developed in adolescence or much later in life, it is dependent on the individual. Fibromyalgia does however affect 7 times more women than it does men. Fibromyalgia typically develops between the ages of 30 and 50.

There is no definitive data on how many people in the UK suffer with fibromyalgia but it is considered to be a common condition. It is estimated that between 1.5 million and 2 million people have fibromyalgia in the UK. While there are some estimations that the condition is prevalent in 1 in 20 people in the UK. The primary reason why there is no definitive data about how many people are affected by fibromyalgia is because it is such a difficult condition to diagnose. There is no specific diagnosis for the condition and the symptoms of fibromyalgia can be similar to many other diseases and conditions.

No fibro is the same. This means that it is absolutely imperative that physicians treat every patient to suit their own needs and listen to how the patient is truly feeling to decipher what the best course of action is. Fibromyalgia is not a condition that can be prescribed for from a textbook.

Diagnosing Fibromyalgia

Many people discover that when fibromyalgia symptoms materialise and are presented to a GP, it takes a significant period of time before a diagnosis. There are many people who are misdiagnosed because fibromyalgia is not well understood by doctors compared to other conditions. Fibromyalgia was only identified, defined and labelled in the 1990s.

The problem is that if a GP suspects that the cause of the symptoms is fibromyalgia, there is no test that can be carried out to definitively confirm whether a patient has fibromyalgia. Scans, blood tests and other investigative tests cannot definitively prove whether someone has fibromyalgia or not. This can mean that a GP can carry out a painful number of tests and it can lead to someone being referred to various different GPs and even specialists. GPs often want to rule out the symptoms being caused by arthritis, multiple sclerosis or chronic fatigue syndrome (CFS/ME).

If a GP is unable to come to a formal conclusion, they may resort to diagnosing fibromyalgia as the cause of the symptoms.

Being diagnosed with fibromyalgia can be extremely difficult to take and there are so many questions that run through your mind. It can really help to talk to people in a similar position through support groups, online chatrooms or the Fibromyalgia Facebook Group

What is Fibro Fog?

Fibromyalgia is a chronic pain condition that can cause pain throughout the body and symptoms such as memory loss. This problem is commonly referred to as fibro fog, within the fibromyalgia community. 

Fibro fog which is also known as fibromyalgia fog or brain fog, is a common way of referring to the brain related problems that occur when fibromyalgia sets in. Doctors have yet to decipher the cause of fibro fog, but the resulting effects include sleeping issues, depression and fatigue.

The loss of mental clarity is a key aspect of fibro fog. Over 50% of fibromyalgia sufferers report issues concerning mental clarity and it is twice as prevalent in fibromyalgia than most other rheumatoid conditions according to the report by the Clinical and Experimental Rheumatology published in 2016. 

The most common fibro fog complaints are: 

  • Difficulty conversing and the ability to process information efficiently
  • Reduced thinking ability, slowed thought
  • Forgetfulness
  • Low levels of concentration 

Researchers remain unsure about how much fibro fog is caused by the distraction of pain and sleep deprivation. There have been studies into the attention span, memory and thinking problems in people with fibromyalgia, but the results have been mixed and by no means definitive.

A controlled trial that took place in 2018 compared the working memory in people who had been diagnosed with fibromyalgia and with those of healthy participants. No major difference was found. Those with fibromyalgia felt strongly that they had significant problems with memory and thinking in their day to day life. The researchers thought that one reason for the disconnect is that thinking and memory tests under controlled conditions without the distraction of daily life, means that the real-world function is not truly reflected.

The true cause of fibro fog remains up for debate. Many scientists and doctors believe that fibro fog could be related to poor sleep. A 2018 study compared people with fibromyalgia, depressed people and healthy individuals found that most cognitive problems reported by those with fibromyalgia were related to poor sleep which was reported by 99% of the fibromyalgia sufferers who participated.  

How does Sleep effect those with Fibromyalgia?

A lack of sleep can cause health problems in the healthiest of individuals. So, for those who live with fibromyalgia the lack of a good night’s sleep can have a detrimental effect on their health and mental state. Waking up constantly throughout the night or lying awake for hours are not uncommon effects of fibromyalgia. A good sleep can prepare sufferers to wake up well prepared mentally and physically to deal with the daily battle against fibro.

Exercise can induce sleep and make it easier to fall asleep as your body is more tired. More alternative solutions such as meditation and yoga could also be tried to see if it enables a good night’s sleep.

CBD has been proven to help induce sleep and help people with insomnia. This could be an option that is worth trying for those who struggle to sleep or to stay asleep, ending up staring at the ceiling all night.

Melatonin could also be a more extreme option if sleep deprivation is beginning to have a serious negative impact on someone’s life to the point where they can barely function anymore.

Exercise for Fibromyalgia

A study that was undertaken in 2018 discovered that people with fibromyalgia who did resistance exercise twice a week for 4 months were able to process data and information quicker than before they started exercising. Exercise was also found to improve sleep in people with fibromyalgia. It is a common theme throughout studies that have taken place, that sleep disturbances during the night decrease after 8 weeks of a consistent exercise regime.

UK Fibromyalgia have published an Exercise Guide for Fibromyalgia. This exercise guide is a brilliant tool for anyone with fibromyalgia. It has an array of exercises that can help build strength and flexibility. The exercise guide also has guidance about warm downs and post workout massages.

Exercise is a pivotal part of everybody’s life, being diagnosed with fibromyalgia should not discourage regular exercise. While it can be painful to begin with, overtime strength will build, and the exercise routine will become less taxing.

Fibromyalgia Diet Tips

Eating a balanced diet is probably a good idea for everyone, regardless of fibromyalgia. A healthy diet should include fresh fruits, vegetables, whole grains, lean protein and healthy fats. It is best to avoid unhealthy foods such as processed or fried food, excessive amounts of saturated fats can also cause harm in the long-term. Salt and sugar should both be limited within your diet. 

Fibromyalgia can cause severe tiredness and it can really tire those with the condition out. Eating specific foods can help to provide extra energy. It is important to avoid sweets and chocolate as a quick sugar rush is not a good solution to tiredness and only lasts for a brief period of time. Consuming foods that provide enough energy to get you through the day is important. The combination of fats and proteins with carbohydrates to slow down the absorption of the food. Fresh, whole foods that are high in fibre and low in sugars are ideal. Good examples are: 

  • Beans
  • Broccoli
  • Oats
  • Avocado
  • Tofu
  • Dark leafy green vegetables like spinach and kale 

There is no single fibromyalgia diet but there is evidence that suggests that particular foods can be problematic to those with fibromyalgia. These foods include:

  • Gluten containing foods
  • Food additives or chemicals
  • Excitotoxins like MSG
  • FODMAPs – This stands for Fermentable oligosaccharide, disaccharide, monosaccharide and polyols are certain carbohydrates that are fermented by gut bacteria when being digested.

How Could Cannabis Treat Fibromyalgia? 

While the definitive cause of fibromyalgia is not yet known, it is widely thought that the cause involves the central nervous system. Cannabis creates its effects by interacting with the endocannabinoid system, which is linked to the central nervous system, this is why there is great hope that cannabis could help many people with fibromyalgia to manage their pain more effectively.

There are over 150 cannabinoids in the cannabis plant, CBD and THC are the two most commonly known cannabinoids. There are naturally occurring cannabinoids within your body meaning there are cannabinoid receptors in the brain. Interacting with these receptors is how CBD, THC and other cannabinoids take their effect.

All human beings have an endocannabinoid system. It is believed that CBD and other cannabinoids interact with the endocannabinoid receptors in the brain and immune system. Receptors are minute proteins attached to cells. The receptors receive signals, often chemical signals from different stimuli and help your cells respond in the appropriate manner. This response instigates an anti-inflammatory and pain-relieving effect that is pivotal in helping to deal with pain. This is why CBD and other cannabis derived products may benefit people with chronic pain conditions like fibromyalgia.

A study that took place 2018 assessed how well CBD worked to relieve chronic pain. Based on this study, researchers concluded that CBD was effective in overall pain management and had no negative side effects.

In the UK CBD is widely available as a food supplement and is available in various delivery methods. CBD patches, CBD oils and CBD sprays seem to be the most popular products.

Can CBD or Medical Cannabis Help You Sleep?

Sleep is a major issue for the vast majority of people with fibromyalgia. Sleep is vital for maintaining mental and physical health.

Cannabis may be an effective sleep aid as it restores a person’s natural sleeping pattern, which often is disrupted within people with fibromyalgia. The analgesic properties of cannabis may provide relief to the chronic pain and offer a good night’s sleep.

CBD is 100% non-psychoactive meaning that it does not get you high. It is THC that causes the user to get high. THC is only available in the UK legally through a prescription from a specialist doctor.

CBD has been proven to help improve the quality of sleep.

Why isn’t Medical Cannabis available on the NHS?                                                                                            

There is a huge demand for medical cannabis to be available on the NHS for people with fibromyalgia as many people believe it could be of tremendous benefit.

Currently to obtain a prescription for medical cannabis all other treatment options must have been tried with unsuccessful results. A GP must then refer a patient to a specialist within the NHS or at a private clinic.

If the patient is deemed to be eligible by the specialist, they will be referred to a specialist cannabis clinic that will prescribe the patient their medicine.

At the moment the patient has to cover the cost of the eligibility consultation, the consultation with the doctor and the cost of the cannabis-based medication. Just to obtain the medical cannabis prescription for the first month of treatment is likely to cost around £500.

This is simply unaffordable for most of the population and it is extremely unfair that affluent and wealthy people can access medicine for their condition while people whose circumstances are not ideal cannot. This two-tiered system is obviously unfair and needs to be addressed quickly. 

Medical insurance does not cover cannabis, meaning that all prescriptions are paid for by the patient. 

Randomised clinical trials need to take place to gather compelling evidence to prove the efficacy and safety of medical cannabis treating pain. A large clinical trial must take place with thousands of participants to prove that medical cannabis could be a medication that can change people’s lives for the better. Once there is undisputable evidence, the NHS can assess the viability of making medical cannabis available in the NHS

Currently, medical cannabis is only available on the NHS for rare forms of epilepsy, multiple sclerosis and some cancer diagnoses.  

Fibromyalgia Support Groups

Within the fibromyalgia community there is a vast network of support groups throughout the UK. Fibromyalgia is an extremely common condition but there are many people who do not know what the condition is and how it affects people who have fibromyalgia. This is why the support group network is such a great thing for people, especially those who have been recently diagnosed. A diagnosis of an illness that has no cure and will plague you for the rest of your life can be extremely scary and lonely. Having a community who you can turn to for advice and education on the condition can be a lifesaver and it can make the condition less intimidating. 

UK Fibromyalgia lists all of the active support groups from around the UK on its website. Using this website, recently diagnosed or long-term fibro warriors can find out where the nearest support group to them is and can get in contact to find out about meeting and arrange calls with fellow members to discuss their condition to share secrets about how they deal with the illness. 

Conclusion

While there is currently no cure for fibromyalgia, and it remains uncertain what actually causes the disease there are things people with fibromyalgia can do to make living with the condition easier. Diet and regular exercise can have a profound impact, leading to life being more pleasant and an improvement in both mental and physical health. 

Fibromyalgia is difficult to diagnose, and patients can become very frustrated with the medical system when awaiting a diagnosis. Awareness of fibromyalgia is growing but it is still a condition that not many people are aware of, making it difficult for people with fibromyalgia to explain to their family and co-workers.

The most important thing is to stay positive, never give in and control the things within your power to ensure that healthy choices are made and a solid daily routine is implemented.

3 comments

  • I was diagnosed with multiple sclerosis 1 month after I turned 50. My grandma is 96 and had it since she was in her 20s. I have been on WORLD HERBS CLINIC MS HERBAL FORMULA (ww w worldherbsclinic c om), the first TWO MONTHS was daily and now I am on 3 times a week. It has made a tremendous difference for me. The fatigue never gets to me again. When I do too much, I don’t feel weak anymore..

    STACEY BELLIS
  • I hear you i really do!!! If you have fibromyalgia you will also have other conditions as well, this can vary from person to person. There is not one treatment plan that fits all, thats why its so frustrating, challenging and down right hard to cope with.

    With what you have going on especially the degenerative disc disease ( My mum has that) i really feel for you and i understand your comments.
    Some days i have a positive attitude, but lately these are few and far between!! I have four other conditions as well as fibro, one other pending to be diagnosed, back to the hospital for a consultation and scan and a six monthly check up for something else….Oh the anxiety!!! We dont have the luxury of having a normal day that we can just get up and go out, for me and you as well i imagine its a bit like a milatary operation, what do i eat today? Will that effect my tummy and i will be on the loo again. If i do a bit of housework, will i get a flare 2 hours later…. you do it anyway and yes theres the flare… just to bend down for 10 seconds to dust the table is agony!!! And it goes on. This is just a snippet of what life is like living with fibromyalgia!!!!

    I have tried the cannabis patches and they helped my fibromyalgia pain about 20%, which is something!!!! However they didnt help with my bladder pain and other things but i will keep using them if funds allow. Initially they itched and gave me a nasty rash but i am waiting for some new ones so fingers crossed… i have noticed by not having any to use at the moment that my fibro pain is worse!!!

    I have found this company to be very helpful and knowledgeable, it would appear that they actually care about their customers and where their CBD is sourced from.

    I am sending you a huge gentle hug. Snuggle up!!

    Alison
  • Here we go again, something else they say that may help with the condition. Which ever reason you have become to be diagnosed with this condition nothing is going to cure it. The fact being that you have been in a stressful situation and your body is unable to deal with it. Hence the symptoms you are having, what drugs do is just try and cover everything up, almost like putting a sticky plaster on it. My body has been stressed for years, and i just cant shift what was, mental scars, memories, just life. What no one tells you is that this condition evolves into other conditions, due to being over stressed. Like a tree or a seed that is planted it grows and grows forming branch after branch, sometimes tho it is in the genetics so it may not neccesserily be due to stress. Either way it is an athritis of our system. no i didnt say athritis that effects the joints , its one of the muscles. Every joint is going to be effected. I have osteoathritis, fibromyalgia and degeneration of the spine, i am also in the process of having sjogrens syndrome to be diagnosed. I also have raynaud’s syndrome undiagnosed at present. I have tried everything on the market to try and help but it doesnt and neither will what is advertised here. It may work for some but not for me. Plus this condition has many attributes to other conditions. Good luck with finding something to ease the pains.

    demonica

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