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FAMILY SUPPORT FOR PATIENTS WITH FIBROMYALGIA OR CHRONIC PAIN…

The effect on family support for patients who are suffering from fibromyalgia or chronic pain is an essential factor in the care of these conditions, especially during this epidemic. While only one person in a family may suffer from fibromyalgia or chronic pain. the entire family is affected by it.

 

Everyday Health says “If a person has a chronic condition, it’s going to affect the people who care about him or her as well,” says Phyllis Talarico, former patient services coordinator of the National Fibromyalgia Association and founder of the North Orange County Fibromyalgia Support Group in Yorba Linda, Calif. “Education is vital for you to understand the symptoms and help them find the right treatment.”

Some good sources include NHS choices and Fibromyalgia Action UK.

Effective strategies for supporting someone in chronic pain has to start from the one closest to the patient.  Part of accepting the situation is managing their expectations. Once the family has identified what is likely to change, allow the patient to grieve for the things that have to fall by the wayside (at least for now) and let them go. Then focus on the areas where you foresee big problems and work toward realistic solutions. There are many undiagnosed patients at the moment due to COVID-19 but that doesn’t mean they don’t need help.

Recently, my own condition reared it’s ugly head and although my husband is right by my side to help me, my daughter really wanted to help more but it’s just not possible at the moment. Many Fibromyalgia sufferers who have help from Fibromyalgia and Pain clinics will be getting no help at all at the moment with the only support through online groups and websites.

With most GP appointments either via telephone or online it’s essential that you keep a diary or ask a family member to write one for you of how and where your pain is on a daily basis.I have written before that I was diagnosed after my spinal consultant asked me to write down all my pain symptoms for two weeks. When he read my diary he immediately said he thought I was also suffering from Fibromyalgia and sent me to see a Rheumatologist.

 

 

Of course, it’s not an ideal situation for the family members either, they are not immune to depression. It is frustrating to watch people who are sick and in pain, and yet to have little control over their illness.

Fibro Treatment Group points out that ‘The symptoms may be invisible put the pain is real. If you have fibromyalgia you’ve likely been told “but you don’t look sick.” A common misconception among those without the condition is that because the symptoms aren’t outwardly manifest or visible, they are not real. This is why we sometimes call fibromyalgia an “invisible illness”. While the symptoms may not be obvious and we may not look sick – the illness is very real.’

Finally, there are now thankfully a number of support groups set up around the UK and indeed the world. I guess one of the best places to look other than Google is the NHS website which has a list of support groups in the UK.

 

 

 

#blog award, #Spoonie, Back Pain, Backcare, CHRONIC PAIN, FIBROMYALGIA, hand pain, HEALTH, low back pain, pain

DYSTONIA – PAIN IN YOUR HANDS OR WHEN WRITING?…

Do you experience pain in your hands or when writing? Dystonia is a condition whereby sometimes it becomes painful to write or play an instrument due to cramps in the hand or arm.

The Dystonia Society is the only national charity providing support, advocacy and information for anyone affected by the neurological movement condition known as dystonia.

If the doctor is not able to explain what is causing the cramps, one possible cause is a hand dystonia (otherwise known as Writer’s or Musician’s Cramp). The symptoms vary and may be one or more of the following:

  1. Twisting or curling up of the hands while writing or playing an instrument.
  2. Fingers move of their own accord to unusual positions while writing or playing an instrument.
  3. Writing or playing an instrument becomes painful.
  4. Symptoms usually disappear when the above activities stop.

Hand dystonia commonly appears in people between the ages of 30 and 50. It is one form of dystonia – a condition that causes uncontrollable and often painful muscle contractions believed to be as a result of incorrect messages from the brain to the muscles.

Dystonia is a neurological movement disorder and, if the symptoms listed above are severe or damaging to quality of life, the correct course of action is for a GP to make a referral to a neurologist specialising in movement disorders. There are treatments for hand dystonia that can significantly reduce the symptoms in many cases.  Only a specialist neurologist has the knowledge and skill to diagnose and treat dystonia.  If the patient and their GP agree that the symptoms might possibly indicate dystonia then the GP should refer the patient to such a specialist.

There are also other conditions that can cause similar symptoms, one of which is carpel or cubital tunnel syndrome. The carpal tunnel is a narrow
space in the wrist that contains the median nerve. It is surrounded by the bones of the wrist (carpals) and a thick tendon sheath. Friction will cause the tendon sheath to swell and enlarge limiting the space within the carpal tunnel. As a result, the median nerve becomes compressed leading to numbness and tingling within the wrist and hand. Symptoms can be treated conservatively, with night splinting, medications, and cortisone injections. However, carpal tunnel syndrome does not resolve on its own and worsens over time.

Cubital tunnel syndrome is caused by compression of your ulnar nerve at the elbow.  The ulnar nerve travels from neck down your arm through a tunnel at your elbow called the “cubital tunnel.” The nerve is especially vulnerable to compression because the cubital tunnel is very narrow and has very little soft tissue to protect it. This compression causes numbness and/or tingling pain in your elbow, hand, wrist, or fingers. This is commonly caused by leaning on your elbow for long periods of time or swelling caused by friction of your ulnar nerve rubbing along structures of the cubital tunnel.

Carpal Tunnel

Carpal tunnel and cubital tunnel syndrome are treated at first with conservative treatments like rest, changes in patterns of use, immobilizing the affected area with devices like splints or braces, physical therapy, medication and injections. If the symptoms do not improve after some time, your doctor may suggest a surgical procedure to relieve compression.

As you know I had cubital tunnel release surgery last year and my nerve conduction tests showed I also have carpal tunnel both of which are giving me a lot of pain at the moment. However, on the NHS list of symptoms of Fibromyalgia they do include tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paraesthesia)

The best way forward if you are suffering from any of these types of pain is to go and see your GP for him/her to decide your next move to finding out what the problem is.

Living Well with Dystonia is a great book on the subject written by by Daniel Truong;Mayank Pathak;Karen Frei (Author)  A Patient Guide provides comprehensive information on a wide array of Dystonias. It is intended for individuals with various forms of Dystonia who want to adjust lifestyle activities to accommodate this chronic condition, but do not want the disorder to define them. It is a resource and tool for both individuals with the disorder and their families to become better educated about the options available to them.