5 Common Myths and Facts about Physical Therapy: Ashley Smith

Chronic Illnesses, Guest Posts, Invisble Illnesses

Hi Guys,

I have been undergoing lots at  hospitals to do with Gastroenterology to update you on.I promise will be back soon writing once the University year is over!

However, today we are fortunate enough to have an informative guest post from Ashley Smith on physical therapy. So without further a do…

I will hand you over

Lots of Love,

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Most Common Myths And Facts About Physical Therapy

It is widely believed that physical therapy is the best medicine/ solution for treating any kind of a pain. Physical therapy does not have any negative side effects on your health in any way. Normally, most of us have experienced a physical therapy at some point in time. Mostly, we are recommended to a physical therapist in the case of an accidental injury or a surgery. Therefore, we believe that we can visit them only if and when our doctor prescribes it.

Any kind of a physical therapy effectively helps you in restoring the movement, increasing mobility and flexibility, and on the top of everything, it helps in relieving the pain caused by injuries and certain health conditions. Physical therapists are the experts in treating any sort of pain, including all injuries and most of the health conditions. There are various kinds of physical therapy treatments that effectively work on the specific or the affected areas of the body.

However, in spite of knowing most of the benefits of the physical therapy, many people have certain myths about it. Yes, you read that right.  People believe certain things about the physical therapy, which are not true. You will be happy to know these myths and facts, which are the actual eye-openers for many of us.


Myth: I Can Visit a Physical Therapist Only When I Am Recommended

Fact

According to American Physical Therapy Association (APTA), it is found that around 70% of the people believe that they can visit a physical therapist only if they have a referral from their doctors. But, the fact is you can visit a physical therapist even without a referral. Mostly, we all visit them only when we are recommended for an accidental injury or a surgery.

The good news is you can visit a physical therapist on your own, whenever you feel even a little twinge of pain in your back, shoulders or the neck. Moreover, it is to be noted that most of the athletes and sports people attend physical therapy sessions to improve their performance, increase strength, flexibility, and movement. Therefore, do not delay your visit and treat that little pain of yours right away.


Myth: You Can Take A Physical Therapy Treatment Only In Case Of Accidents And Injuries

Fact

As mentioned earlier, many of us must have visited a physical therapist only in the case of an injury or an accident. So, we are habituated to believing that we cannot visit them exceptionally in any other case, where we are not recommended.

The fact is that you can visit a physical therapist even if you are suffering from severe and frequent headaches, neck pain, shoulder pain, or a back pain. Patients with chronic pain have chronic connective tissue disorders and they tend to heal slower. Therefore, they need an extra care to help them progress at their tolerance to prevent setbacks and frustration. In such cases, the relevant physical therapy effectively helps the patient in relieving their chronic pain. It is essential that the patient should be given the most relevant and effective physical therapy to help them overcome their chronic pain and disorder.


Myth:Physical Therapy Comprises Only Exercises

Fact

A few people may believe that going to a physical therapist will only make you do some exercises. They may think that a physical therapist can only suggest doing exercises to treat the pain caused by musculoskeletal conditions.

But, the fact is physical therapy is much more than just performing exercises. It is true that a physical therapist uses a lot of exercises to help you restore the function and movement of the body. However, they also use a variety of techniques to help you relieve the pain. The concerned physical therapists closely work with you and examine your pain thoroughly. They determine the cause of the pain and prepare a treatment plan that uniquely meets your personal needs, along with treating the pain and injuries.


Myth: Any Healthcare Professional Can Offer Physical Therapy

Fact

A majority of the people know that physical therapy can be performed by a licensed physical therapist. Yet, a few of us still believe that it can be offered by any healthcare professional, which is not true. A licensed physical therapist only can perform physical therapy, which will be accurate and effective.

Today, you will find graduating physical therapists are doctors of physical therapy, attaining education of 6 to 7 years in the concerned universities. Lots of them go ahead to earn board certification in certain specific areas such as orthopaedics, sports, women’s health, neurology, or manual therapy. A licensed physical therapy assistant can perform physical therapy under the supervision of a licensed physical therapist or a doctor of physical therapy. Any healthcare professional, who does not have a license of a relevant physical therapy certification cannot offer physical therapy services. According to Peak Motion Physical Therapy, “Physical therapists should be highly trained in corrective exercises to guide healing and restore function.”


Myth: Insurance Plans Do Not Cover Physical Therapy

Fact

Most of the insurance plans cover physical therapy treatment. In fact, a majority of the insurance companies have a list of physical therapy providers in their network. So, it is advisable that you check with your insurance company if it offers a cover for a physical therapy treatment and if so, then inquire about the deductible amount and the relevant details. It is vital that you should know your financial liabilities before you begin your treatment.


Myth: Only A Surgery Can Heal My Pain Or Injury

Fact

In lots of the cases, physical therapy has proved to be very effective in treating injuries without having you to go under the knife. Physical therapy can effectively heal injuries and pain without needing a surgery in many cases. Physical therapists are the best people, who can accurately identify your pain and heal it effectively with the most relevant pain-relief therapies and rehab services. So, visit a physical therapist today itself if you are suffering from any such injury or a pain.

Thus, do not believe your myths and get your injuries and pain treated without further delay by a licensed physical therapist.


Sharing is Caring 

Please share to inform those suffering on these myths and facts to encourage physical therapy.


Have your Say

Have you experienced any myths discussed in this article or know of any other ones? – If so I would love to hear them below. 

 

The Spoon Theory Explained

Invisble Illnesses, Physical Illnesses, Resources

Hi Guys,

I was contacted by Victoria at Burning Nights, who has produced a valuable infographic about the Spoon theory.

Victoria is the founder of Burning Nights is a small U.K charity dedicates to helping those battling  Complex Regional Pain Syndrome (CRPS).  CPRS is a chronic condition where someone usually experience chronic pain in one limb.  We would love if you shared this post to raise awareness of the condition and the work that the charity does.

You may also find my post 5 Ways to have a Productive Day with a Chronic Illness useful to manage your time  inspired by the Spoon theory)

Lots of Love,

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Anxiety and Depression: Adam Hughes

Guest Posts, Invisble Illnesses, Mental Illnesses, Peeping through the Keyhole, Uncategorized

Peeping through the Keyhole 

Hello Lovelies,

Today’s guest post  is by Adam Hughes who gives a brief insight and advice to those living or supporting someone with anxiety and depression.

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About the Author 

Hi, I am Adam I am 24 years old living in London. I love reading, Audio books, writing and going on long walks. To find out more about Adam click here


What are the main symptoms you suffer from?

Depressive moods

Mood swings

Lack on concentration


How was your journey to diagnosis of depression?

It took years to be able to speak to a doctor and when I did it felt a lot better, like I wasn’t battling on my own anymore.


What 5 things you have learnt about Depression and Anxiety since being diagnosed?

I am not alone

It can take over many aspects of life

It can affect others as well as yourself

Love is always a great component of healing

Strength can be found in the smallest things


In what way has the NHS supported you?

Giving me a ear to listen to my troubles through counselling


What do you find is the most challenging part about your mental health?

I find building up a happy lifestyle and keeping up with others difficult.


What emotional support do you have for your mental health?

I have many wonderful and kind friends who are always supportive


 What are 3 ways you manage your mental health on a day-to day basis?

Meditation

Walking

Relax remedy spray


What advice would you give to someone newly diagnosed with Depression or Anxiety?

Keep on fighting even if it feels like everything is ending


Has any perceptions changed since you’ve been diagnosed with Depression and anxiety?

I have found society perceptions on mental health has improved by being challenged.


Have you gain any new hobbies since been diagnosed with Depression and Anxiety?

A love of writing again


How has depression changed your life?

My illness took some of the most important things from me last year (2017) and it almost ruined my entire life


What information do you wish you was given when you was initially diagnosed? Counselling leaflets and advice


 What do you do for a living?

Freelance Teacher/Performer


What are your future plans in the next year?

Building up a successful teaching career

 

Common Types of Migraine Headaches and Symptoms in Children

Invisble Illnesses, Resources, Well-being

Hello Lovelies,

I was contacted on behalf of  Diamond Headache Clinic, the oldest and largest headache centre, who recently made a presentation about various types of migraine headaches and symptoms in children.The presentation focuses on children aged 5-9 years old who regularly experience abdominal headaches, which can develop into more severe headaches later in life. To help raise awareness  please share to those looking for information to have  migraine-free children, as it provides a valuable resource.

          Click the diagonal arrow to view full screen


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The Agonising Truth Exposed: Chronic Bladder Syndrome

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, Well-being

Interstitial-Cystitis-

Hey Guys,

I hope you all had a lovely Christmas and Happy New Year!

After being offline along time, here is the one post,  I was nervous to write about – fearing people would have the misconception, I am dirty.

I feel it’s time to share a condition that restricts my quality of life.  Interstitial cystitis (IC) also known as chronic bladder syndrome is NOT  a STI or a UTI.  However, bacteria has been linked to a cause of bladder inflammation.   Being the queenof UTIS and internal inflammation remained a mystery, until recently. Though, it  use to be predicted to be down to my bladder being about the size of a £2 coin.  If you have  never had long-term bladder pain, I sit here in envy. 

Now, I welcome you to my story – the girl who lives on antibiotics. 

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“Antibiotics, the best friend or fiend of an IC warrior?”

Some argue, antibiotics do not necessarily solve IC, which explains why I feel in high levels of pain every day. However, some GPS claim they are essential, to cure it or…. in my case even prevent UTI’S, that worsen it.   For many years I took Trimethoprim, Ampicillin and Nitrofurantoin with little or no relief, even when infections did not exist. Being told in so many words , to abuse antibiotics, it is no surprise I have a weaker bank balance and now  have now become immune to these types.  Typically, I can be on a course for 6-12 weeks at one time.  Recently, I have moved on to three new types of antibiotics on a 6 week course. The pain got so bad I missed my University exams, but now I am figuring out what I can do about this, battling on.

“I don’t give up that easily – with love your swollen bladder”.

I normally finish the first two-three weeks of antibiotics and don’t feel any better.  The first week, I will still be spending my life in bed, wondering if the pills will ever work or will I be dead by tomorrow.  I know this sounds dramatic. Although, the hospital keep ranting on how I could be well on my way, to developing kidney failure. IC and UTIS are persistent, especially if you have had them a long time – in my case 6 years of misery.  It can have as much persistence as a guy you have cut out your life and then drops you that text ‘Hey,bby girl how are you?’ and your like enough already, please.

“Chronic bladder syndrome plays trick on you like the house of horrors”.

Regularly, when I am watching TV, a shooting strike of abdominal pain arrives. Once, this passes I get settled and comfortable and then I realise, I need the toilet. I take a wee, and that’s it I am gasping for air, like there is no tomorrow.Urinating has more sting than a bee. It is like pouring acid into an open wound. I get up struggling to waddle down stairs, to glug down water and send my mum off to buy pain relief…

For an hour or two, if I am lucky I may be numb… ONLY if that feeling could last forever.  I think a day, where I can relax.. Then the pain strikes again, and as I swell the pelvic pain becomes unbearable.  I try to take my mind off it and take a warm bath to sooth body. It does, until I get out.  I pull a funny expression, as if an object is stabbing my urethra, thinking – “why, why me?”

When the pain rife, I cannot sleep or function for many days”.

Awake most nights in throbbing pain, I hobble to the toilet with relief to empty my bladder whilst anticipating the agony to come.  I climb back into bed to realise I hardly emptied my bladder and I need the toilet again.   “I look down at my body with anger and think seriously? – Like it is going to respond to me and say sorry Morgan, you are just an easy target. Reluctantly, I get up once again squeezing my bladder like I would a fresh orange for fruit juice, which can occur up to 10 times in one night.

Finally, I fall asleep anxious the next day it will be worse. I wake up, debating if I have enough energy to go out. Normally the answer is no, my insides are on fire and more often than not I do not want to leave the house.  I am to  scared to go out – scared that if a toilet is not nearby I will wet myself or have to immerse myself in a bush.  I lay back down flat thinking OK, things will get better but –  deep down I know I am more complex case. I have multiple food allergies, which if I am not careful – encourage the mast cells to release histamine and mistakenly attack my bladder.   Eating and drinking like many others, put pressures on my bladder. Furthermore,  I never know if a UTI has returned or if it the IC symptoms. My dip tests always must be cultured before this can be determined.

“Cystoscopy Round Two”

I recently had a second Cystoscopy, whilst I underwent other procedures because I had been showing high levels of blood in my urine for many months. The first one, I had two years ago despite the pain, apparently was relatively normal. So, I had a bit of a shock when the Doctor spurted out  I have a defect in my bladder lining, irreversible damage, internal bleeding and scaring and that  I never have a normal bladder again. On another 6 week course, I also await bladder installations.  The biggest bombshell of them all, was, I must restrict my diet even further.   Ensuring, I am also on a diet that is low in histamine, acid, oxalate and potassium.  In that moment,   I felt like I was going to turn into a restricted herbivore – with my mother on guard, the 24.7 FOOD POLICE, as I call it.

“IC makes you feel like, you will never be happy again”.

As the symptoms are so similar to an infection and there pretty much 24.7, I always think how long to the next round of pain…. Worrying it will be back sooner than it should. I missed out going out on New year but I want to focus on a couple of helpful blog posts in the next few weeks to endeavour to inject positive vibes back in me.

Do you suffer from IC like symptoms?

If you had bladder symptoms lasting longer than 6 weeks, you may be suffering from IC and should see your GP.  I know its hard but you really need to try and stay hydrated to prevent migraines. Imperial Colleges’ guide is useful to help you manage IC like symptoms.

Have your Say?

Do you suffer with IC like symptoms and have good tips to manage it – if so, why not share them below?

Thanks for reading,

Lots of love,

my name

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5 Ways to have a Productive Day with a Chronic Illness

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses, University life

“Having a productive day is very subjective; what is productive for one person is not for another”.

Some days, I find waking up, washing and eating productive. Others assess,  I am being productive when I  do University work.  What I have noticed though – is we all have tasks that need to be completed and this can send us into panic mode. The vicious cycle, of where to start and where to finish has a ripple effect – like a child who got denied candy at the fun fair.

 If you are someone sat there reading this with a chronic illness, I am sure you have an inkling of the cycle I am talking about. If you don’t well… I sit here, in envy.   What I am going to call the ‘ torrential storm cycle’ makes you question which direction to go in first.   Anxiety and stress are no strangers, crawling around your body, taking its toll , physically and mentally.  This post is designed to stop you in your tracks, so you aren’t continuously interrogating yourself about ability and self-worth.

“I spend 90% of my time in bed, but a chronic illness does not mean accomplishing your goals are not possible”.

Achieving those goals may just take comprise, planning and longer than you anticipated.


5 Ways to have a Productive Day with a Chronic Illness

1. Evaluate tasks ft. the spoon theory

If you haven’t heard of Christine Miserandino’s Spoon theory , it is a great place to start to help you have a productive day.  The theory in a nutshell, is that anyone who is chronically ill has 12 spoons each day (each one resembling energy) and spoons are exchanged for tasks.  The amount of spoons exchanged will depend on factors such as the length of the task and how strenuous. The point here, is spoon must be used wisely so you don’t burn out. By ordering tasks by importance you can identify what needs to be done on what day and start to put a plan in motion.

spoon-theory-e1510325926400.jpg

 In reality, you may find executing a plan is not always possible. However, the spoon theory gives you a general consensus of how much you can get done in a day.

You may find – once you start having a productive day you are at the opposite end of the spectrum. At Uni, I get told a theory is just that a theory. I am taught to challenge theorists view. So it may not be a surprise to hear I wasn’t a firm believer of the Spoon theory at first.  I was so productive one day I felt on top of the world. I couldn’t believe my eyes. I had completed an exam, handed in an assignment, found a job, booked a flight, travelled home from Uni and packed for a holiday and cuddled my little bunny.

Shortly, after this semester came to a close – I realised I used the reserve of spoons for months. I had to fly home 3 weeks early from working abroad, quit the job I found and was  behind in every subject at Uni. Barely, attending lectures and hospital appointments.  What I am trying to emphasise, is pushing yourself one day really can have a detrimental effect on your health.

“You need to work out what is realistic to get done in a day for YOU”.

 Which takes me to by next point…


 2. Break down tasks

 Breaking down tasks makes things more manageable.  Something,  I am training myself in like a disobedient dog. I am one of those people who seeks to think holistically to even do a task.  However, breaking down tasks can relieve stress, because you know you are achieving something – which has got to be better than nothing, right?

goal

I have found people have been more understanding about my illness when they can see that I am trying rather than wallowing in self-pity.  The amount you need to break-down a task will depend on its complexity. It may be a case of trial and error, but you know your body better than anyone in time you will have this down to a tee.

 If it’s something academic, you could try and break things down with titles and research areas and tie the ideas together later.  You may not get the best grades you are used to due to time constraints.  However, at least you will pass and can try and work harder when you are feeling a bit brighter on future work. If the task is practical, like cooking, you could do prep at a certain time and then cook later in the day.  Or if you’re a little bit cheeky – ask someone to help you to make the task manageable.


3. Follow your Body Clock

Most people would say, sort out your body clock first and foremost. It may work, but it is something I have been trying to do for over 10 years. My body just likes to be up during the night. The fatigue and pain is more manageable after I have digested by one meal per day.

“To have a productive day you must follow your natural body clock”.

You don’t want to set yourself up for failure by taking a U-turn and trying to achieve tasks when your energy levels and pain threshold is low.

body clock

“Remember you can always move tasks to another day as long as you’re motivated to accomplish them”.


4. Relax… just not too much

Whether you have a chronic illness or not, everyone should take time to wind down.  If you’re fortunate enough TAKE a bath, or go and visit someone who does! Watch a comedy, listen to music or sit in silence, do what works for YOU. I am not saying you are not going to wake up still feeling fatigued because you probably will BUT subconsciously your body and mind is still getting a valuable break and you get a hint of happiness.  I find relaxing whilst doing a task slowly usually gives me the right balance. However, this may not work for everyone.

“Just remember, don’t relax too much or you won’t get anything done”.

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5. Relieve stress with a pet

Patting pets are proven to having a calming effect on humans (Rodriguez, 2012), which may help you to think more clearly and be more productive! It is ideal if you own a pet and go and give them love when you are stressed and they are in a good mood. If your pet is moody, trust me try hugging your friends’ pet or the other four tips AND come back to this one later.  When my pets are hungry they treats me like food and it makes me feel rejected and has the opposite effect.  If you cannot keep an animal, I suggest you look out for the nearest dog on your walks or go visit an animal shelter. That way you can have your rare day out, killing two birds with one stone.

 


Thanks for visiting Brains & Bodies. I hope I have shed some positive vibes on how to have a productive day.


Sharing is Caring 

I would love if you shared this post to help others with chronic illnesses have a productive day – everyone deserves one! For some reason all my shares reset back 27 from 84 , but please keep sharing. 🙂


Have your Say

Do you have any tips how to have a productive day? – I would love to hear them below.


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Over and out,

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References 

Rodriguez, T. (2017). Pets Help Us Achieve Goals and Reduce Stress.

Spoon theory (2017). The Spoon Theory written by and spoken by Christine Miserandino. [online] Available at: https://www.youtube.com/watch?v=jn5IBsm49Rk [Accessed 10 Nov. 2017].

 

Through the Nutritionists’ Eyes: The Ehlers Danlos Series

Guest Posts, Invisble Illnesses, Peeping through the Keyhole, Physical Illnesses

Hola Amigos,

When I started Brains & Bodies,  I did not want to accept  guest posts from practitioners, mainly because of the challenges I had with them. Sara Russel is an exception, as she is a practitioner diagnosed wit HDS.  Sara shares my goal to raise awareness about Ehlers Danlos Sydrome/ HDS.   You can look forward to Sara and  I,   collaborating  on Nutrition in the Ehlers Danlos Series.

Sara post is not short, but is certainly a worthwhile read. Time to pass you over. . . See you soon

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Common Ethical Issues People with EDS/HSD Encounter in Healthcare

This guest post aims to provide a sort of exposé of some of the ethical issues (both deliberate and unintentional on the part of health care providers) that people with EDS/HSD and other chronic and complex conditions encounter. Additionally, it offers some reflections on how both patients and care providers can work towards an alternative paradigm and different strategies.

In a sense, because of the extraordinarily complex, multi-faceted and poorly understood etiology, symptomatology and complications inherent in the Ehlers-Danlos Syndromes (which I’ll refer to here collectively as “EDS”) and the relatively newly-coined Hypermobility Spectrum Disorder, the EDS/HSD population can serve as the ultimate example of how often-hidden flaws in the health care system can have an amplified effect on people with chronic and complex health conditions. This piece focuses on selected of ethical problems, while recognising that the impact of course is much more vast.

The information contained in this post results from extensive reading of the medical and scientific literature, personal experience as a patient diagnosed with Hypermobility Spectrum Disorder, clinical experience as a nutritional professional working with a diverse set of chronic and complex health conditions and interviews and conversations with patients with EDS as well as health care providers, both those that are specialised in the treatment of EDS and those who are not.


Common complaints I hear from people with EDS/HSD about their past or present care

“The doctor couldn’t account for my physical symptoms and wrote them off as nonexistent or psychological”.

Depression, anxiety and related disorders, while not specific to EDS/HSD, are more common in these groups than in the general population (Bulbena et al. 2017). The reasons are complex and are likely a combination of co-causative factors (hypermobility is postulated to have effects on the nervous system and the gut-brain axis that profoundly affect emotions), effects of symptoms (pain and fatigue can definitely cause anxiety and depression) and perpetuating/aggravating factors (depression and anxiety increase pain).

Iatrogenic factors, including over- and under-medication, delay in diagnosis, inappropriate medications and more, can cause varying degrees of anxiety, depression and other symptoms, including post-traumatic stress disorder.


“I was denied pain medication when in excruciating pain and was treated like a drug addict”.

EDS and HSD patients often suffer from a high degree of pain which may not be easily recognised or validated. EDS patients frequently report going to the emergency room for a painful dislocation or subluxation and being denied pain medication even after describing debilitating pain. Uncontrolled pain, especially frequent or chronic, can have a profoundly negative impact on quality of life and can cause severe emotional and psychological distress.

“I was over-medicated with pain medications that didn’t lower my pain but only gave me side effects, and my doctor refused to consider any alternatives”.

As the president of a non-profit that connects EDS patients with EDS-focused medical providers noted in a personal conversation, a large percentage of patients with EDS lack the receptors to make opioid pain medications effective, yet these remain widely prescribed for pain management, and often patients become addicted to the medication while continuing to live in pain.

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She described to me her experience of supporting EDS patients who experienced opioid addiction and uncomfortable side effects, including exacerbation in digestive symptoms (poor intestinal motility, constipation, gastroparesis, etc.), personality changes, reduced judgement and reduced cognitive functioning (increased “brain-fog” – which is already a concern for many hypermobile individuals in the first place). Some of these patients, she told me, have gone through painful withdrawal symptoms and required a lot of medical and emotional support to overcome their addiction. It is impossible to estimate how vast this problem is, considering that many people with EDS/HSD struggle with severe pain yet do not have a diagnosis.


“One or more health care providers exploited me financially on the basis of my poor health and desperation for relief”.

Unmanaged or poorly managed symptoms can make people with EDS/HSD the target for deliberate or unintentional exploitation by health care providers promising or implying all kinds of miracles, and even suggesting that EDS is caused not by genetics but by other factors that can be “cured” easily (of course, with the specific product that the company or individual is trying to sell, or a specific treatment modality the person or company offers. Exploitation of people with EDS may take the form of “friends” pushing the latest cure-all essential oils, proprietary supplements, detoxification or cleansing programs, etc.).

business-money-pink-coins

I’m not saying by any means that people with EDS/HSD can’t benefit from the product and service categories listed above. However, I advise people suffering from EDS/HSD to be wary of any health care practitioner, product or program that offers an easy or miraculous “solution” or a one-size fits-all approach. It is in fact very important for practitioners to approach every hyper-mobile individual as a unique person who requires an individualised plan to manage symptoms and improve or maintain their quality of life, and of course, who can help set realistic goals based on the person’s unique and changing conditions.


Solutions: What Practitioners and Patients Can Do

Why Health Care Providers Must Take a Complete Health History

A patient-centred, multi-disciplinary approach to care is critical. The health care provider must understand their patients’ health history and family history, and this involves careful listening, research and often a referral to an experienced specialist if the hyper-mobile patient is still undiagnosed.

Understanding that physical health problems cause emotional distress

Those who suffer from chronic physical symptoms that impact quality of life significantly may also have some anxiety and/or depression. Often, however, this is the only diagnosis they have, as if nothing else were wrong. Unfortunately, this implies that the physical symptoms don’t really exist. The patient knows better. Patients who are in pain and are told that she suffers exclusively from a mental illness will neither be fooled nor trust the physician.

Yet having physical pain and debilitating fatigue that others don’t see or understand is enough to trigger anxiety or depression in an otherwise well-adjusted person. As many hyper-mobile individuals describe, each in their own way, the true problem is very clear to them in their bodies,but nobody sees or understands it. Labelling a complex set of physical and emotional symptoms with a psychiatric diagnosis will only further the mutual reinforcement of physical and emotional symptoms.

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Ultimately, being treated this way over and over again leads to a general mistrust of healthcare, which may in turn increase one’s vulnerability to exploitation by predatory marketing, which often does invest resources in making patients feel understood, not with the aim of solving a problem, but of selling a product or service regardless of its efficacy. The only real way to counteract this is for allopathic and holistic health care practitioners to listen to the patient and to collaborate with each other.


High Ethical Standards and an Individualised Approach

High ethical standards and a bio-individual approach to health must go hand in hand. If your practitioner doesn’t have high ethical standards, you may find yourself buying large packages in a moment of weakness, or arrive home from each visit with loads of supplements that don’t make much of a dent.

If this has ever happened to you, it doesn’t mean that your practitioner intentionally exploited you. It’s more likely that he applied common marketing techniques that brought him money without improving your health. The money-centred model of care doesn’t work well with complex health cases. Nonetheless, most practitioners really believe in their process, in their protocols and in the products they sell.

Practitioners working or wishing to work with people who are hyper-mobile should bear the following in mind. Hyper-mobility is a multi-factor problem with complex etiologies and consequences, and exists on a very broad spectrum, and oversimplifying it is both disingenuous on the part of the person doing so and stigmatising for people who are affected by a complex and non-fully-remitting hyper-mobility.


People with hyper-mobility should be wary of statements such as:

“I am better (or healed) because I did X, so you can get all better too if you’d only stop doing Y and do X like I do”

“I have (or had) a patient (or client or customer) with Ehlers-Danlos Syndrome who went through my program (took X supplement or medication or essential oil or protocol, etc.) and is now fine, so what are you waiting for?”

“All symptoms of Ehlers-Danlos Syndrome match perfectly with Lyme disease (or mold illness or mercury poisoning or copper dysregulation, MTHFR, etc.), so your diagnosis must be wrong, and I can fix it with X.”

redYou get the idea, right? This may not be a comprehensive list of red flags to look out for, but it’s a start. You may even have heard variations on several. I’m not saying that a person with Ehlers-Danlos Syndrome can’t be incorrectly diagnosed, or is exempt from also having another condition with similar symptoms.

In fact, hyper-mobile people sometimes do get Lyme disease or have mercury poisoning or dysregulated copper, but implying that EDS isn’t a distinct medical entity is ignorant and dismissive at best, predatory at worst, but probably most often some combination of the two.


A Paradigm of Service

Both allopathic and holistic health care providers should approach their work from the standpoint of service to the patient or client. All too often, allopathic medical care feels rushed and non-empathic, while holistic care can feel to salesy or gimmicky. Neither of these approaches works well for the patient.

Ultimately, patients with complex illnesses, including EDS/HSD, do best in a multi-disciplinary situation where there is a patient-centred approach to care and an attention to the individual history, symptom picture and the elements that bring relief or trigger discomfort. The constellation of dysfunction in the body can vary from patient to patient, but clearly, an attention to each patient’s unique situation can help determine which practitioners are best suited to be part of the care team, so that the best possible support is offered to the patient.

About the Author

Optimized-Sara Russell

Sara Russell is a Nutritional Therapy Practitioner who works remotely with clients worldwide, specialising in complex cases. Sara comes from a family with a high prevalence of joint hyper-mobility and related medical conditions. She resides in the Tuscan countryside with her husband and six-year-old son. To learn more about Sara’s work and read her blog click here.


Related Post on Brains & Bodies 

My Invisible Illness ft Tramadol: The Ehlers Danlos Series


Selected Bibliography

Bulbena A, Baeza-Velasco C, Bulbena-Cabré A, Pailhez G, Critchley H, Chopra P, Malloquì-Bagué N, Frank C, Porges S. 2017. Psychiatric and psychological aspects in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:237-245.

Castori M. Ehlers-Danlos Syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular and systemic manifestations. ISRN Dermatology Vol 2012. Article ID 751768, 22 pp. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Tinkle B, Levy H Grahame R, Malfait F, Hakim A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin Med Genet 175C:148-157.

Celletti C, Camerota F, Castori M, Censi F, Gioffrè L, Calcagnini G, Strano S. Orthostatic intolerance and postural orthostatic tachycardia syndrome in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type: neurovegetative dysregulation or autonomic failure? 2017. Biomed research international. https://www.hindawi.com/journals/bmri/2017/9161865/. Accessed May 9, 2017.

Chopra P, Tinkle B, Hamonet C, Gompel A, Bulbena A, Francomano C. 2017. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:212-219.

Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. 2017. Gastrointestinal involvement in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:181-187.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Chronic fatigue in Ehlers-Danlos syndrome–hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:175–180.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:168-174.

Hamonet, C. Maladie ou syndrome d’Ehlers-Danlos: une entité clinique, d’origine génétique, malconnue, dont la rareté doit être remise en question. http://claude.hamonet.free.fr/fr/art_sed.htm.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org.

Henderson Sr. FC, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano CA, Ireton C, Klinge P, Koby M, Long D, Patel S, Singman EL, Voermans NC. 2017. Neurological and spinal manifestations of the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:195-211.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org. Accessed Dec. 28th, 2016.

Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, Fournel-Gigleux S, Frank M, Ghali N, Giunta C, Grahame R, Hakim A, Jeunemaitre X, Johnson D, Juul-Kristensen B,Kapferer-Seebacher I, Kazkaz H, Kosho T, Lavallee ME, Levi H, Mendoza-Londono R, Pepin R, Pope FM, Reinstein E, Robert L, Rohrbach M, Sanders L, Sobey GJ, Van Damme T, Vandersteen A, van Mourik C, Voermans M, Wheeldon N, Zschocke J, Tinkle B. 2017. The 2017 international classification of the Ehlers-Danlos Syndromes. Am J Med Genet part C Semin Med Genet 175C:8-26.

Seneviratne SI, Maitland A, Afrin L.2017. Mast cell disorders in Ehlers-Danlos syndrome. Am J Med Genet Part C Semin Med Genet 175C:226–236.

 

5 Challenges Blogging with a Chronic Illness…

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses

 with a sprinkle of advice.

Hello, there 🙂

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If you haven’t read my other posts, welcome. It’s not a secret anymore I am a spoonie. I am Morgan Isabella Shaw, a 24 years old that suffers from Ehlers Danlos Sydrome. However, recently when I was procrastinating, I remembered I haven’t confessed how challenging it is to blog when you have a chronic illness.

I will admit I find multiple things an uphill battle. Cooking, washing myself, walking, relationships and blogging is no different. Actually, it doesn’t happen – unless I am blogging from bed. Even then, five minutes into starting a post I tend to experience a  flare up and struggle to finish writing it that day.  As, I throw my laptop down, I feel disappointed in myself I have not met the strict self-inflicted deadline.

If you land on my homepage you will notice I endeavour to publish one post week.

One post a week – is that it?

Many fire back at me with an eye roll or one raised eyebrow. This made realise how many people do not understand how many challenges are behind the scenes for me to keep on generating posts.This post will let you walk into another part of my mind and reveal 5 challenges a chronically ill person may face when they decide to become a blogger…


5 Challenges of Blogging with a Chronic Illness

1. Blogging is Addicting

 I don’t know if blogging is addicting for everyone or if it just applies to me because of my addictive personality.  I use blogging as a natural remedy for my clinical depression so I try to do it as much as possible to release emotions.

The problem with this is, I have found is I end up not getting other important things done. For example,  I sit very confused looking at University briefs, because I can’t find a private tutor this year –  so I turn my mind to blogging instead.

blogging-for-business

If you find yourself in this position you need to like me – try and snap out of it and  make a loose time management schedule, so you can do everything.  As I move through the academic year I am aware that my blog is going to have to take a backseat if I am to pass it, not because I am abandoning you! I also have to admit the more I want to blog the more I shut myself away from my friends. However, I don’t want to give up blogging.  For once I am starting to enjoy one thing again, which in turn makes me feel less suicidal on the whole.


2. Limited Energy

With most chronic illness comes chronic pain, fatigue and brain fog which makes it difficult to concentrate.  I spend every spare second I have whether that be on the toilet or public transport thinking of new blog ideas and content. The issue associated with this is, my brain goes into overdrive – I  now don’t know how not to think.I am awake until the early hours of the morning. I can’t blame blogging entirely for this – I have always been known as a lady of the night up with pain. However, before my mind got a longer rest.

When my I-phone is ringing in my ear  I know the next day  has hit.  I then *sigh* reaching for the closest can of coca-cola to be able to manoeuvre up right and override the extreme tiredness for a short period of time.  Due to my levels of tiredness I get fed up very easily…

sleep

So, even if I have the best idea for a blog – I lack motivation  to actually blog as even the computer screen stares back at me like a fiend.  A part of this is attributed that with a chronic illness, you never know when bad patches will attack you.  This means it is also difficult to plan a content and schedule and actually STICK to it.


3. Anxiety and Negativity

 I can be a very negative person. To date, I will be honest I only have 66 followers.   I become anxious that no one will like or share my posts and that even sharing my reflections will be worthless.  I panic that the more I write the worse my academic writing for University will become and I am convinced I am going to fail there too.

The reason behind this is, blogging is very descriptive writing and University expects a much more critical standpoint for assessments.  I then wonder if I am being too ‘open’ with the public in what I am sharing and worry that it will affect future opportunities. For example – I need to pull my finger out my arse and start applying for 12 month placements for my degree.

anxiety

I frequently question, if having a blog will be a hindrance and shed light that I used drugs in my past, have clinical depression and that I am disabled. I don’t want special treatment but I know I need to disclose my disabilities on a job application form because my pain affects me on a day-to-day basis.  Whilst, this is all spinning around in my small brain,  I then worry about when I take a back seat from blogging –  if I can ever get the passion back because for other hobbies when I lost them, it was lost forever…


4. Being a Citizen of the Blogosphere

It is also no secret I struggle with Dyslexia and Dyspraxia. I find that when I read someone else’s blog to try and learn about other illnesses I don’t always understand what I am reading initially. Everything just gets lost in translation.

How do I overcome this?

I spend a lot of time on Google to understand what the illness is first and then go back to the individuals’ blog.  All of this is interesting but very time consuming.  You may be thinking – well just skip this part, but that would be a vital mistake.  Commenting on posts is essential to improve your writing skills and how you engage with other people.

dots


5. Gaining Traffic and Post Engagement

In October, I received just over 3,000 unique visitors. Although, I am not sure I really did receive this many as it is likely  some of these visitors were in fact me stalking myself using my friends’ phones as I was without one for a while.

I am unlucky with any electrical product! ( I  was definitely was born in the wrong century)..

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Additionally, I don’t have a strong social media following across many platforms.  I spend the most time on the one where I do have a following – Facebook, to try to gain traffic for my blog.  I am also putting ‘all my eggs in one basket’ and hoping when I finally set up a YouTube channel this will improve my traffic and engagement… as I try to figure out how to increase my Twitter and  Pinterest following.

On Facebook I post my blog posts on my wall, into a couple blogging groups and into chronic illness support groups when I have permission to do so.

 


That Sprinkle of Advice 

4

Do you have a chronic illness and are thinking about becoming a blogger?

 DO IT!

Just remember don’t punish yourself for not being able to post as much as you would like to gain a following.  Fellow bloggers divulged that blogging consistently is very important, where I have fallen short a little bit as the times and days I post content really does vary. This is something I am going to work to improve as I become more experienced and I hope my readers understand that this is not always be possible.

On groups, ensure you always read the pinned posts in groups or you can find yourself getting an inbox of angry admin messages and deleted out of groups.  I find the most effective way to promote your blog on Facebook is through Facebook pages BUT be careful you will be blocked by Facebook if you are a repeat offender.

I think if you post a series on one theme, you may gain more followers. However, I don’t do this because my mind is scatty and like to think of lots of different topics at the same time!


So, guys there are the challenges I have faced blogging with a chronic illness. Next, you can expect to find 5 more general challenges I found since becoming a blogger and what I’ve learnt about myself since becoming a chronic illness blogger.


Sharing is Caring

I would love if you shared this post to raise awareness of some of the challenges a chronic illness blogger faces!


Have your Say

If you a blogger what are some challenges you face?

If you’re a chronic illness blogger do you face similar or different challenges to me?


 Like what you see? 

Join me on my journey on social media;

Facebook page

WordPress

Twitter 

Instagram

Pinterest

Thanks for staying tuned in bed with me and I hope to see you back soon.

Lots of Love,

my name

Popular Related Post

My Invisible Illness ft Tramadol

PoTs – The Invisible Demon.

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, POTS

PoTs Explained and my Symptoms

Postural Orthostatic Tachycardia Syndrome also known as Dysautonomia (PoTs). That’s one a hell of mouthful, right? A condition I might have, that I can’t even pronounce properly. picture for blog

Before I start, I am not going to pretend I am a medical professional or a scientist. I do not have extensive knowledge on the Autonomic Nervous System or PoTs. This blog purpose is to give you an insight into the chronic illness.

 

I believe the best video to explain the condition is What is PoTs? (YouTube, 2017)

 

A brief explanation of the condition here based on reading (NHS-U.K, 2017) is; PoTs occurs when the autonomic nervous system which cannot function properly. 

Autonomic nervous system?

” If this is the first time you’ve heard that, you are probably thinking what the hell is that”.

Let me break it down for you. The Autonomic nervous system controls everything your body is suppose to do without having to think about the action.  For example, breathing, sweating, digesting food and drink etc.  

When someone with PoTs sits or stands their heart rate increases to abnormal levels because the blood to their heart and brain decreases. Subsequently, this is likely to cause them faint or feel dizzy amongst other symptoms. Not everyone shares the same symptoms, and someone does not need every symptom to have PoTs.

“There are different types of PoTs, just to make things more confusing”.

 There are Hypo PoTs and Hyper PoTs,  which apparently even have their own sub-categories. I  will admit, I still know very little about the different types but I will try to give you a very brief overview.

Hypo means something in the body is running low. For example, someone has low blood pressure or not enough blood or enough oxygen.Hyper on the other hand is the opposite and everything is rocking high in the body.  For example,  high blood potassium or sodium.

pots

“The problem with PoTs, is you cannot see it – Around 85% of PoTs patients have been told their symptoms are only in their head (Dysautonomia International, 2014).

That is why it is not uncommon with invisible illnesses to live for years in pain undiagnosed or misdiagnosed.  Even when patients symptoms are taken seriously, they are  frequently misdiagnosed.  Misdiagnoses occur because of  a lack of awareness surrounding the condition – it was only officially recognised in 1993 (Stream,N.D).

PoTs is a bit like snapchat, both include filters. A Snapchat filter masks what someone truly looks like on the exterior. Meanwhile, in PoTS, skin is the filter that hides what is really going on in internally.

“I worry if I have PoTs – not about the illness itself, but how others will perceive it”.

I think it is cruel that skin can make someone appear perfectly healthy, when they are really fighting an uphill battle.   I have already experienced discrimination due to my EDS and I fear this could happened again if I become diagnosed with PoTs.

“My journey for a PoTs investigation began when I was diagnosed with Ehlers- Danlos syndrome III (EDS)”.

 

I was asked that famous question, “What symptoms do you have?” I took a deep breath and reeled of my list of symptoms. I stated in the past the following had happened;

  • I can’t bear standing up without being in pain
  • Chronic fatigue – I am always tired despite how long I sleep
  • I had episodes of fainting and a history of low blood pressure
  • I felt better laying down in dark rooms
  • Palpitations
  • I experience regular headaches and stomach pains and…
  • I can hear sounds others can’t.

 Ear-PNG-HD

Hearing things others can’t…

I feared being honest would sound like Harry in the Chamber of Secrets when he was told to follow the spiders and I would be rapidly carted off to a mental hospital. I didn’t know which was more alarming.

The fact I had been honest or that the doctor look back at me like this was normal. I quickly realised to her this was normal for an EDS or PoTs patient. The doctor explained to me that people with PoTs are more sensitive to sounds and experience the other symptoms I listed.

The rheumatologist explained what PoTs was, stated that it is common for people with EDS to have it and recommended I went for an investigation. I agreed and the process was underway.

 

To find out what happened next…

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COMING SOON: POTS: Part 2 -Referral to Investigation


Over to You

I would love to hear from you!

Whether you have found this post useful, know someone who has experienced PoTs like symptoms or has a diagnosis.

I hope you have a good day,

Morgan x



References

Dysautonomia International (2014). Dysautonomia International: 10 Facts Doctors Should Know About POTS. [Online] Available at: http://www.dysautonomiainternational.org/page.php?ID=180 [Accessed 22 Aug. 2017].

 NHS-U.K. (2017). Postural tachycardia syndrome (PoTs) – NHS Choices. [Online] Available at: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx [Accessed 22 Aug. 2017].

Stream, C. (N.D). [Online] PoTS UK. Available at: http://www.potsuk.org/gp_guide [Accessed 22 Aug. 2017].

What is PoTs? – YouTube. (2017). Dysautonomia International 2016. [Online] Available at: https://www.youtube.com/watch?v=ch6ipV3M4yo [Accessed 22 Aug. 2017].