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Is chronic pain affecting your relationship?

Family quarrelLiving with a chronic pain condition, such as fibromyalgia, can be difficult enough in itself but, when it comes to relationships, it can also cause additional complications. Aside from the pain associated with fibromyalgia, the illness often has a negative impact upon the patient’s emotional wellbeing.

The combination of these two elements alone can place an understandable strain upon both partners in a relationship. In fact, a study published by the US National Institute of Health concluded that:

“In addition to physical impairments that are well documented among individuals with fibromyalgia, fibromyalgia can result in a substantial negative impact on important relationships with family and close friends.”

Some of the relationship pressures described by those suffering from fibromyalgia include:

  • Feelings of marital instability
  • Marital anger
  • Feelings of withdrawal or hostility
  • Mood swings leading to ill feelings
  • Reduced libido

From the perspective of someone whose partner suffers with a chronic pain illness, the difficulty of watching a loved one go through pain and suffering (as well as feeling the impact of the associated negative emotions) can also be challenging: as a one partner of a fibromyalgia sufferer (known as ctc315 on the related fibromyalgia community chatroom) details:

“My wife is a wonderful, loving woman, but sometimes she just is angry, kind of like a PMS or Menopausal thing. It is a side effect of the Savella and I know this and I make allowances for her disposition. Of course she always apologizes afterwards, but it can be quite challenging.”

On an internet community discussion board relating to the subject of “living with someone with fibromyalgia”, the following fibromyalgia patients summed up a few of the difficulties involved in a relationship where chronic pain plays a factor:

#1 ISSUE: “It’s not that he doesn’t believe me (though that took years) but I still have to ask for each little thing, and that is very draining. It just doesn’t occur to him.”

#2 ISSUE: “With my gent, he sometimes wants to go, go, go, and doesn’t really understand when I say that I need to stop.”

#3 ISSUE: “I shut him out, I get paranoid he doesn’t believe me, I get upset because I want to do more, then I get angry that I can’t do more. I feel like I’m letting him down by not getting better faster.”

 In summary, two major factors that may place particular stress on a couple, where one partner suffers from fibromyalgia are:

#1 LACK OF SUPPORT: Fibromyalgia can be difficult to diagnose, potentially causing the strain of a lack of support being felt by the sufferer if they don’t feel that their partner is convinced by their symptoms

#2 UNPREDICTABLE SYMPTOMS: The symptoms of fibromyalgia may vary from day to day. This may add additional pressure on the relationship in terms of forward planning for shared time together, as well as the unpredictability of moods and pain levels

In 2010, research was undertaken by the University of Missouri, investigating: “the interactions of married couples that include one spouse who has been diagnosed with fibromyalgia or chronic widespread pain”. As Christine Proulx, Assistant Professor of Human Development and Family Studies explains: “fibromyalgia is very hard on both spouses because their lives are changed dramatically.”

So, if you are in a relationship and suffer from fibromyalgia, what steps can you take to help your partner to understand and support you more effectively?
 We’ve put together the following three tips to help you out:

#1 EDUCATE: Try to inform your partner as much as possible about the nature of your illness. Share relevant articles and websites about fibromyalgia with them, and describe how your own particular symptoms can effect your mood and pain levels

#2 COMMUNICATE: Let your partner know when you are having a particularly tough day and calmly explain why certain tasks may be more difficult/unachievable for you. Try to refrain from taking your pain/frustration out on your partner as we often, unfairly, take things out on those closest to us when we aren’t feeling out best

#3 THINK POSITIVELY: If unavoidable symptoms prevent you from undertaking daily tasks, or a planned day trip, try to remain positive and find a way to work around the issue. For example, calmly explain to your partner the reasons that you cannot keep to the existing plans, and work out if it possible to reschedule for a future date, once the flare has subsided 

It’s important to remember that living with fibromyalgia does not mean the kiss of death for your relationship by any means! Love, respect, patience and making time for fun are all key when it comes to any long-lasting and happy partnership.

Has fibromyalgia affected your relationship? Have you found ways to cope and mend bridges?  Do share your experiences and tips.

Keeping your relationship healthy when suffering from chronic pain

Elderly coupleThe stress and life-changes involved in coping with a chronic pain illness, such as Fibromyalgia, can take their toll on even the most solid relationships. In working through these difficulties it is important for you and your partner to communicate with each other and realise that, whilst chronic pain can magnify a relationship’s imperfections, working together can also make your relationship stronger.

  • Positive communication
    Suffering from a chronic pain illness can be overwhelming at times and you would be forgiven for feeling like a good whinge. Try to remain positive in your communications with your partner on this front.  Fibromyalgia can be a difficult disease for non-sufferers to understand as one day you might feel quite functional, whilst the next can be agonising. Try to share as much information about the illness as possible so that your partner has a clearer idea of what you might be going through.  Internet resources such as the National Fibromyalgia Association’s website can provide a helpful start.
  • Sharing the burden
    If your spouse is suddenly thrust into the role of caregiver, the additional household duties he/she takes on may be a cause for stress or irritation. Work with your partner to figure out a balance within the household that will work for both of you.  For example, are there some chores that you feel more easily able to manage than others, and can any tasks be dropped under the circumstances?
  • Let the good times roll
    Spend as much time as you can with your partner doing things that you both enjoy.  On a good day perhaps you could visit a museum, or take a walk in a nearby park. Maybe you could invite friends over for dinner or a movie night? Spending quality time together is an important aspect of maintaining any strong relationship; and sharing these happy memories can be a bonding experience too.
  • Demonstrate your love
    When you find that times are particularly tough there is nothing like a big hug to ease the worries away. If you are worried that a hug may cause pain, be creative and find another way to show how much you care.  A simple “I love you” might mean the world to your partner when tensions have been running high.
  • Keep fit
    If you were an active person before being diagnosed with a chronic pain illness and are now feeling frustrated by your body’s limitations, remember that measured exercise can be helpful in improving your condition.  Why not spend some time researching a suitable routine that your partner and you can do together.  Health.com have put together some useful ideas to get you started.
  • Get help
    Building up issues without talking them through can easily exacerbate a problem and, if you are finding it difficult to communicate with your partner, there is plenty of help out there. “There is nothing to be ashamed of if you decide you need marriage counselling, want to join a support group, or decide to meet with a therapist” advises communications expert Dr Dede Bonner. Maintaining a healthy relationship means riding out the bad times as well as the good and sometimes we all need a helping hand when the going gets particularly tough.
New Research Suggests a Connection between Chronic Pain Disorder and Post-Traumatic Stress Disorder

guy in painA recent study, published in the journal Biological Psychiatry, has provided more evidence for researchers’ long-held beliefs that there is a connection between post-traumatic stress disorder and chronic pain syndrome. The belief is that stress, especially stress experienced in childhood, may influence the likelihood of a person developing problems with chronic pain in later life. The new study explores the connection between sensitivity to pain as an adult on top of a stressful childhood, and shows that this second experiencing of stress can further increase that sensitivity to pain. This new research, which has been carried out by the University of California in San Fransisco, may help to explore new ways of treating chronic pain.

The research also highlights concerns that chronic pain syndromes in general could be a complication arising from post-traumatic stress disorder, also known as PTSD. This area of research is very difficult to study, as those suffering from PTSD have often undergone physical trauma of some kind already. The other concern highlighted was that studies do not normally take into account the early life stress experienced by participants.

Dr. John Levine, of the University of California, San Fransisco, believes that new treatment methods could be developed based on this new information. He said, “While it has been recognized for some time that early life events can shift homeostatic balance, predisposing adults to the development of chronic pain, that this could be mediated by a peripheral mechanism, involving the interaction between immune and neuroendocrine stress axes suggests novel approaches to detecting individuals at risk as well as to treatment of chronic pain.”

Chronic pain syndrome is notoriously challenging to health care providers, due to its complex nature and poor response to medication. It is categorised by constant pain of any kind that is endured for three months or more, and is normally controlled by opiates although they are often not sufficiently effective enough to relieve all of the symptoms. There is evidence to suggest that pain control works best when it is started early as it prevents the condition from worsening, but this study also highlights the clear link between stress and the severity of the condition.

Insurance company have turned down my income protection claim

Dear Brian

I have been turned down on my income protection claim because of a report commissioned by my insurance company from a company doing CPAD (chronic pain abilities determination). The tests were conducted by an osteopath who is also a functional capacity assessor. I have been unable to locate details of any clinical trials on CPAD, have found no evidence that the test has been medically proven nor that a CPAD assessment has been published in a peer reviewed medical journal. Is CPAD medically proven?

Regards

Tony

 

Dear Tony

I have not come across CPAD, but the clue to this is that the osteopath is a functional capacity assessor. The tests that you have had to undergo sound very much like functional capacity assessments.

These assessments are notorious amongst fibromyalgia sufferers. They are often very technical, complex and detailed to the point where the reports are extremely hard to understand. The crucial point is that such assessments have very little relevance to fibromyalgia sufferers. They may well be extremely useful in evaluating functional impairment in those with structural musculo-skeletal damage, but fibromyalgia sufferers will generally have entirely normal musculo-skeletal structures. Their difficulties are the constant symptoms of pain, stiffness and feelings of weakness.

Therefore, fibromyalgia sufferers may well be able to carry out many of the tasks, slowly and in pain as a one-off activity, but that is very unlikely to translate into being able to do these normal daily tasks on a regular and sustained basis. In other words, these types of tests are not a fair reflection of the functional impairment of the fibromyalgia sufferer. It is also true to say that on the day of the assessment the fibromyalgia sufferer may have fewer symptoms than on other days.

My advice is to try to avoid undergoing these assessments wherever possible. Insurers should be told that they are simply not meaningful for fibromyalgia sufferers. If the insurer insists, however, the assessments may have to be done, but it is then always advisable to have a report from a consultant rheumatologist who would be able to comment on your ability to sustain activity and who is a “bigger hitter” than the osteopath or similar who carries out the functional capacity evaluations.

Regards

Brian Barr

Twitter, Facebook and Lawyers

These days, anybody who is anybody has a Twitter account or is a member of Facebook, LinkedIn or Youtube. Social network sites are very much in fashion and for many of you who are stuck at home more than you would like, they are a real boon. You can keep in contact with fellow sufferers and other members of the planet easily and they are a great fun, instant method of communication.

They are also a great way to wreck your accident or insurance claim or claim for DWP benefits. I have written and spoken on many occasions about how insurance companies are happy to pay the cost of a few days’ surveillance.  It is a modest amount to pay to challenge a significant claim for care, employment or accommodation.

Social network sites and film sites like YouTube make it easier and cheaper for the DWP and insurers. They just have to look up the claimant and see what an active and lively social life he or she says that they are leading. Why should insurers or the DWP believe that you need lots of care or are unable to work when you are telling the world on your Twitter page that you are happiest when you are living it up “wid the boyz!”?

The Daily Mirror carried an interesting story on 22 August 2010. It was about a claimant seeking massive damages after an incomplete spinal cord injury. The care regime alone was expected to run to fortunes, but photographs posted of the claimant enjoying a lively social scene on holiday combined with a tip off from a nasty neighbour resulted in literally millions of pounds being wiped off the value of the claim.

You must remember that any case where the symptoms appear disproportionate to the initial injury attracts attention. Chronic pain cases are the perfect example. Sceptical insurers and those protecting DWP purses just cannot believe that people are suffering as badly as they say they are. If those same people then boast of a busy social life and post photographs or films to prove it,  attitudes will inevitably harden, perhaps to the extent of criminal prosecutions.

Let us just imagine this piece of cross examination:-

Barrister – “Would you say that you are an honest person?”
Claimant – “Certainly I am”
Barrister – “Would you always give an accurate picture of your disabilities?”
Claimant – “Oh yes”
Barrister – “Are these extracts from your Facebook page?”
Claimant (sheepishly) – “Yes, they are”
Barrister – “Do you have a very busy social life then?”
Claimant – “No I do not – what I have put here is mostly not true”
Barrister – “But you have just told the Court that you are an honest person.”

Why give the Defendants “a free hit”? It may well be tempting to exaggerate or fantasize about a life that you wish you had, but it makes no sense at all to wreck your claim in the process. You need that money to support you. Please, do not toss it away. If you have put up anything on Facebook or similar which is indiscreet, please check over it immediately and take it down as fast as you can.

This will still not stop the Defendants obtaining their DVD footage, but we can generally tackle that and I would be happy to discuss it in a further article. The social network and film sites are another phenomenon again. We are not trying to protect fraudsters here, but we do want to ensure that naïve claimants (and that can include people claiming benefits from the DWP) are properly protected.

Smoking Linked with Chronic Pain

Smokers are far more likely to report problems with persistent musculoskeletal pain than non-smokers, according to a new study in the Journal of Pain, published by the American Pain Society, www.ampainsoc.org.

Researchers from the University of Kentucky School of Public Health questioned more than 6000 women. The study was intended to assess the association of smoking with the presence of different types of chronic musculoskeletal pain.

Previous studies have linked smoking and chronic pain, especially low back pain. The prevalent view following previous research was that smokers of both sexes are more likely than nonsmokers to report pain syndromes.

The Kentucky researchers categorised survey respondents according to age and smoking status, with smokers further classified according to their daily cigarette intake. Respondents also were asked about pain symptoms and if they had been diagnosed with musculoskeletal pain disorders, such as fibromyalgia and low-back pain. Pain variables selected for analysis were the presence / absence of low-back pain, neck pain, sciatica, nerve pain, fibromyalgia, joint pain and pain all over the body.

The study revealed that smokers are significantly more likely to report chronic pain than nonsmokers. Daily smokers were more than twice as likely to report pain than non smokers. Those who smoke over a pack a day were also most likely to report a high burden of chronic pain.

The authors noted that smoking-induced coughing increases abdominal pressure and back pain and nicotine may decrease pain thresholds by sensitising pain receptors. The study also showed a dose-dependent relationship between smoking frequency and having chronic pain syndrome. This may indicate that treatments for giving up smoking could be helpful for chronic pain management therapy.

I have been turned down on my income protection claim

Dear Brian

I have been turned down on my income protection claim because of a report commissioned by my insurance company from a company doing CPAD (chronic pain abilities determination). The tests were conducted by an osteopath who is also a functional capacity assessor. I have been unable to locate details of any clinical trials on CPAD, have found no evidence that the test has been medically proven nor that a CPAD assessment has been published in a peer reviewed medical journal. Is CPAD medically proven?

Regards

Elaine

 

Dear Elaine

I have not come across CPAD, but the clue to this is that the osteopath is a functional capacity assessor. The tests that you have had to undergo sound very much like functional capacity assessments.

These assessments are notorious amongst fibromyalgia sufferers. They are often very technical, complex and detailed to the point where the reports are extremely hard to understand. The crucial point is that such assessments have very little relevance to fibromyalgia sufferers. They may well be extremely useful in evaluating functional impairment in those with structural musculo-skeletal damage, but fibromyalgia sufferers will generally have entirely normal musculo-skeletal structures. Their difficulties are the constant symptoms of pain, stiffness and feelings of weakness.

Therefore, fibromyalgia sufferers may well be able to carry out many of the tasks, slowly and in pain as a one-off activity, but that is very unlikely to translate into being able to do these normal daily tasks on a regular and sustained basis. In other words, these types of tests are not a fair reflection of the functional impairment of the fibromyalgia sufferer. It is also true to say that on the day of the assessment the fibromyalgia sufferer may have fewer symptoms than on other days.

My advice is to try to avoid undergoing these assessments wherever possible. Insurers should be told that they are simply not meaningful for fibromyalgia sufferers. If the insurer insists, however, the assessments may have to be done, but it is then always advisable to have a report from a consultant rheumatologist who would be able to comment on your ability to sustain activity and who is a “bigger hitter” than the osteopath or similar who carries out the functional capacity evaluations.

Regards

Brian Barr

The question and answer originally appeared in Fibromyalgia Magazine

Practicing yoga reduces the symptoms of chronic pain and mental stress in women with fibromyalgia

A recent Canadian study has found that practicing yoga twice a week for eight weeks reduced the symptoms of chronic pain and mental stress in women with fibromyalgia.

Back painThe study the first to look at the effects of yoga on levels of the hormone cortisol in women suffering with fibromyalgia. Previous research has found that women with fibromyalgia have lower-than-average cortisol levels, which can contribute to pain, fatigue, and stress sensitivity, according to the researchers.

In the latest study, participants’ saliva revealed enhanced cortisol levels following a programme of 75 minutes of yoga twice a week eight weeks. Patients also reported significant reductions in their pain levels, as well as a mental boost from the yoga practice.

”Ideally, our cortisol levels peak about 30-40 minutes after we get up in the morning and decline throughout the day until we’re ready to go to sleep,” said the study’s lead author, Kathryn Curtis, a PhD student at York University in Canada. “The secretion of the hormone, cortisol, is dysregulated in women with fibromyalgia.”

The study, published in the Journal of Pain Research follows another published earlier in the year that found that patients with rheumatoid arthritis who practiced yoga showed significant improvements in their symptoms.

 

Current treatments for chronic pain are insufficient

Current treatments for chronic pain are insufficient, and more research needs to be conducted into combining treatments, a leading fibromyalgia researcher has concluded.
According to Dennis Turk from the University of Washington, Seattle, “currently available treatments provide modest improvements in pain and minimum improvements in physical and emotional functioning. The quality of evidence is mediocre and has not improved substantially during the past decade.”

His paper was published in The Lancet in June 2011 as part of a three-part series on pain management.

Turk, the former director of the University of Washington’s now defunct Fibromyalgia Research Program, wrote that over the past decade, there have been improvements in the way we understand the mechanisms underlying pain, and in the availability of advanced diagnostic procedures. However, most of the changes in treatment have involved new ways of working with existing drugs and interventions, rather than new treatments based on evidence.

He called for more research into combination treatments, indicators of how the patient is responding to treatment, and working out which treatments are suitable for which patients depending on their individual circumstances.

How Fibromyalgia and chronic pain sufferers can benefit from social media

When you suffer from chronic pain, it can be difficult to find people who really understand what you are going through, and who can offer you support and advice.  Groups like the Fibromyalgia Association offer invaluable benefits, for which there is no substitute. But in recent years, many thousands have also found help through the internet – and specifically, through what is known as “social media”, that is, sites like Facebook and Twitter that help you connect to others.

Facebook is a social networking site, with more than 600 million active users. Anyone can sign up, creating their own profile, and then connecting to and exchanging messages with their friends and acquaintances. But you can also use it to learn about your medical condition, share information with your friends, and keep them updated about your situation.

Once you have an account, you can set up a page (or “group”) about your condition, which you can invite all your friends to join. They can see any messages you post, and can leave messages of their own. You could use it, for example, to post links to articles about your illness, so that they can better understand what you are going through, or to alert friends to relevant events or fundraisers. If you were going through a really hard time, they could post messages of support, or use the page to coordinate visits or help.

If you are looking for a wider circle of support, you can allow anyone to join your group, not just friends.  This would allow fellow sufferers to get in touch, to exchange tips, information and encouragement, and to have discussions. Before Facebook, this could only be done by setting up a forum, which meant hiring a programmer – a costly and time-consuming process. Now anyone with a computer can set up a discussion page, in minutes, and for free.

And don’t forget that there are already many existing groups for people with chronic pain, some run by official organisations and others by individuals. The friends and information you are looking for might already exist!

Another useful site is twitter.com. This social networking site allows you to send short messages – up to 140 characters long – to people who sign up to receive them – your  “followers”. Again, you could use it to connect to people in a similar medical situation.

You can start by sending out links to any articles relevant to your condition, or mentioning that you are a sufferer. Before long, people with similar interests will decide to follow your “tweets”, and hopefully, start conversations with you online.

How do they find you? You can search Twitter for all mentions of a certain word. Say, for example, that you are interested in fibromyalgia. A quick search will show who has discussed this recently – instantly showing you thousands of people with a common interest. Once you are in contact, support is not far behind.

Say, for example, that you mention on Twitter that your pain has stopped you from being able to work. Inevitably, one of your followers – probably a fellow sufferer — will reply with advice on how to manage the pain. Perhaps someone else will have some practical advice about how to manage your work situation. Other followers, who are perhaps not in pain themselves but who might simply be interested in learning about your experience, might offer words of support and encouragement. As a result of this online interaction, you could end up receiving helpful advice, and also making friends you would never otherwise have met. You might also offer others the benefit of your own experience – an empowering feeling in itself.

Two other online tools can be enormously useful. On YouTube, you can post videos which you can share with your group. These might be footage from events or fundraisers, or perhaps just a video of yourself documenting or discussing your situation. The videos can be taken with a video camera, or a mobile phone and uploaded; or recorded directly to YouTube with a webcam. Similarly, you can use Flickr to share photos of events and activities (this can also be done on your Facebook group).

Please note, however, that if you have an ongoing legal case regarding your fybromyalgia, you must be extremely careful about any video, pictures and
information about your activities; this could be harmful to your case.

You do not have to be a technological maven for any of this; a few minutes on the computer with a good guide can open up a whole new world. Social media enables you to stay in touch with like minded people and also to meet people you might have otherwise never met. What are you waiting for?

Article by Danny Bermant and Brian Barr

Danny Bermant is director of Brainstorm Design, an internet agency that helps businesses and charities to promote themselves online, including through social media.

Brian Barr is a solicitor with over 30 years experience.  He and his firm specialise in representing Fibromyalgia and other chronic pain sufferers.  He and the firm have successfully settled many cases with compensation ranging from several thousand pounds up to over £1,000,000.