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Fibromyalgia's Impact on Personal Relationships

  [ 56 votes ]   [ 6 Comments ]
By Karen Lee Richards • www.ProHealth.com • December 12, 2012


Fibromyalgia's Impact on Personal RelationshipsDawn Marcus, MD had been treating fibromyalgia patients for many years but it wasn't until someone close to her developed fibromyalgia that she began to really understand how much of an impact FM can have on a person's closest personal relationships.

Realizing that relationship problems can affect a patient's treatment progress, Dr. Marcus decided to find out just what kind of impact fibromyalgia has on patients' relationships with their family members and close friends.

Earlier this year, I was honored to have the opportunity to work with Dr. Marcus on a survey designed to explore this issue. We had an amazing response from the FM community! A total of 6,126 people who had been diagnosed with fibromyalgia completed the survey – 96% were women and 4% were men.

The results of that survey have now been published in the journal Musculoskeletal Care.

Relationships with Spouse/Partner

Three quarters of the survey participants were either married or in a committed relationship. When asked whether or not the spouse/partner understood the impact of FM and how they (the patient) felt about it:

  • 45% reported that their spouse/partner understood how FM affected them, but the patient felt they burdened him/her with their problems.

  • 27% felt their spouse/partner understood how FM affected them and they were glad that they did.

  • 22% felt their spouse/partner did not understand how FM affected them, which made them sad/upset.

  • 6% said their spouse/partner did not understand how FM affected them, but that was ok.

When assessing their satisfaction with their current relationship, there was close to a 50/50 split between those who were satisfied (49.5%) and those who were not satisfied (50.5%). A minority of participants had strongly negative perceptions about their relationships with their spouse/partner.

  • One third felt that their spouse/partner resented the patient's inability to do things with them.

  • 19% said their spouse/partner questioned the veracity of their FM.

  • 23% reported that their spouse/partner believed they exaggerated their pain.

  • 18% said their spouse/partner accused them of being lazy or selfish.

Half of the people with FM said fibromyalgia had damaged or contributed to the breakup of a current or previous relationship with a spouse/partner. On a more positive note, 15% said their relationship with a spouse/partner had become closer as a result of their FM.

Relationships with Children

Of the participants who had at least one child old enough to understand FM, approximately 20-25% said their child/children question whether their FM is real, think they exaggerate their pain and/or accuse them of being lazy or selfish. One third felt that their children resented their inability to participate in activities.

Relationships with Friends

Seventy-one percent of participants reported having close friends. Of those, 15% said their close friends question whether their FM is real and/or think they exaggerate their pain. Only 7% said that their close friends had accused them of being lazy or selfish. However, 22% felt their friends resent when they're unable to do things with them.

Free Response Question

At the end of the survey, participants were given the opportunity to “share additional concerns about how fibromyalgia may impact your important relationships.” More than half (59%) of those taking the survey responded to this open-ended question. While a few people talked about supportive relationships with family and friends, most focused on the negative effects FM had on their relationships. (Note: The negative focus may be, in part, due to the wording of the question, which said to “share additional concerns...”)

Typical themes mentioned in this question included:

  • Loneliness and isolation.

  • Self-doubt and guilt.

  • People who don't have FM can't appreciate how much the symptoms impact your life.

  • Relationships would be better if loved ones believed their FM symptoms were real.

  • Unpredictability of FM symptoms has a negative effect on relationships.

  • Fear that loved ones will leave due to their FM.

  • Impaired sex life.

A few people mentioned additional impaired relationships that had not been addressed in the survey, such as relationships with parents, siblings and grandchildren.

Although relationships with healthcare providers was not part of the survey, several people noted that a lack of understanding and respect from their healthcare providers increased the burden of FM.

Conclusion

This survey demonstrated “that interference with important relationships with family and close friends is not uncommon among individuals with fibromyalgia.”

“Although doctors usually ask about symptoms and effects on activities of daily living and work, they may not ask about these important effects on relationships. It's important to let your doctors know about these effects.” You may be able to get to work when you have fibro, but that doesn't mean your treatment's working great if your relationships are suffering,” said Dr. Marcus. “Hopefully this article will motivate doctors to include questions about relationships. Patients need to recognize relationship interference is common with fibro and important and something that needs to be brought to their doctor's attention.”

Source: Marcus DA, Richards KL, et al. Fibromyalgia Family and Relationship Impact Exploratory Survey. Musculoskeletal Care. 2012 Nov 21. doi: 10.1002/msc.1039. [Epub ahead of print]



Please Discuss This Article:   Post a Comment 

More Complications
Posted by: smrash
Dec 12, 2012
One topic I have never seen anything written about is when the spouse with FMS is the caregiver to a spouse with chronic diseases. My husband suffers from MS and RA. I continue to work full time. It is very difficult to focus on my health issues given my situation. We do not have family nearby. All I can do is take one day at a time, but often I find myself dealing with significant pain.

My point is, with the aging population this type of situation will be more and more common. How can we, as a society, help others?
Reply Reply

Let your doctors know?
Posted by: DTomei
Dec 12, 2012
Maybe I"m in a cynical mood this morning, but what good would letting my doctors know about relationship problems do? There's nothing useful they can do about the obvious physical pain, nothing they can do about fatigue, what would they be able to do about relationship problems?
I went down with fibro 15 years ago, and most of my friends drifted away, there's only so many times you can tell people "I can't make it" before they quit calling to invite you. Only so many times you can realize you have nothing to say that they will understand before you quit trying. The men in my life found women who were able to do things, and they left too. My family thinks I'm making up stuff and am just lazy, I don't hear from them much either. Isolation is a MAJOR problem with fibro, from what I see of my life and other people's life, and there's not a prescription in the world that will change that. If there's a medical doctor out there that does anything other than write a prescription, I'd love to meet them.
I am currently off all my meds and doing lots of vitamins and fish oil etc, and doing FAR better than I ever did on the meds, but the damage of years of isolation is hard to fix. And I doubt my doctor would be of any use. The person who wrote these conclusions may have great intentions, but "Let your doctor know" is not useful advice. I wish I knew what would be.
Reply Reply

 
Let your Doc Know
Posted by: HoraceHarvey
Feb 27, 2013
My PCP referred me to a top knotch medical psycholigist. This person helped me through so many issues. So I contend it is important to inform you PCP of your concerns, together the two of you may come up workable solutions. Solutions that work for YOU.

 


FM's impact
Posted by: Robhab2
Dec 13, 2012
What I would really like to see is this same survey given to FM patients but the subject of the questions would be their doctors, rather family members.
Increasingly, I am finding the doctors in the large HMO I belong to think FM is all in the patients head and/or it's a psychiatric rather than a medical disorder. Equally frustrating is an increased reluctance to prescribe drugs for muscle tension/spasms, anxiety and worst of all, medication for pain!
A return to old assumptions/beliefs about narcotic pain medication are resurfacing. This is sad since so much progress had been made. I sense an atmosphere where some all powerful agency ( D.E.A.? ) is pressuring the health care community to knuckle under or pay the price of retribution.
Reply Reply

Both lucky and unlucky....
Posted by: Boodle
Dec 13, 2012
After reading about the support others get, I feel fortunate that I have a wonderfully supportive husband, great kids, an understanding family and good friends. And I was also lucky to find a Dr. 10 years ago who listens to me and spends all time I need to try whatever combinations come along.

But regardless, I have lost myself. Constant pain has taken away my extroverted, adventuresome spirit. I am still isolated, and saying "no" to invites is always emotionally painful. I agree that there isn't much a Dr. can do about that other than to explain it to someone we would happen to drag along to an appointment. This illness may not cut your life short, but sometimes it has you wishing it would.
Reply Reply

Fibromyalgia's Impact on Personal Relationships
Posted by: rspdude2
Jan 4, 2013
I was diagnosed with Fibromyalgia after I returned from Desert Storm in 1991 from exposure to chemicals and months of sinusitis from exposure to chemicals and a unit PA who insisted my symptoms were mental. I was with the Coast Guard (who doesn't dedicate much to their medical resources when deployed simply because they don't have the money or resources.) Please hold on this may seem like a prolonged war story but you will see it clearly by the time I finish. We were performing counter terrorism patrols of the largest port in the area and the primary off and on loading point during that war. All of the oil from the burning oil fires drifted down the coast from Iraq to where we were. Our boat operators could literally squeeze their shirts and oil would just stream out of it. At night it was so thick that we had to use radar to find our way around. The Unit PA thought fibromyalgia was a mental disease and didn't really even know what it was. His misdiagnoses of my sinus condition caused me an entire year with that pain and suffering and I came home already having almost no feelings for sex. I finally told CG PA that I was going above him before we left and walked over to an Army clinic nearby where an real MD immediately identified my sinus problem and that I was developing walking pneumonia, I was immediately put into a tent hospital and started receiving intravenous antibiotics to beat it off. Too late for me the damage was done. A medical specialist in Portland, Or, not with the CG later identified the Fibromyalgia and stated that it probably came from the prolong stress and exposure to the chemical exposure and subsequent disease I suffered while in the gulf. Though it was clearly identified by a young female resident in training with the Portland, Oregon VA Hospital who work in coordination with the Oregon Health and Science University Hospital. As the state's only health and research university, (OHSU) brings together education, research, patient care and community service with the state's largest VA hospital. She was able to make a tentative diagnoses based on reduced feeling in my feet and other pain signs that are standard for the identification of fibromyalgia even then. It took 6 more years of claims and examinations by the VA of my vague symptoms until I finally received an award of 60% compensation for a reserve's pay, not the pay a regular GI would get doing the same job. Especially not 60% of my civilian income at the time. All that time I was getting worse and developing more symptoms. I finally had to retire from my job with the Police Department where I was a Lieutenant making over six figures. I lost at least another 7 years of retirement income. I also lost the ability to work and teach in the job I did there as a bomb squad commander. I got to the point that I was constantly asking my peers to slow down while walking because I could not keep up. My life at home was a living hell because I had become totally impotent, despite other test, injections that only got me to a 50% erection. I tried all of the prescribed medications and I had the same experiences. My wife was convinced, first that I had a sexual disease because she didn't believe in fibro, then she thought I was having an affair with another woman or she even mentioned the insult that maybe it was a man. We had been married over 25 years when I was first diagnosed. I finally gave up and just took the abuse, getting counseling through the VA and taking medications they gave me which she claimed was because I was crazy. I contemplated suicide constantly. So here I am now at 23 years with this living hell. I feel sorry for her, she found an article that medically documented that her life was shortened by at least 12 years because she was doing without sex. I offered divorce but I had no where to go and I actually still love her. I have a BS degree and worked on a Masters after I had to retire thinking I might be able to consult for law enforcement. I stopped school when I couldn't hold my bladder and wet myself while giving a presentation in front of a full class. I sincerely wanted to just end my life after that. I am constantly taking medications that don't work very well, my wife still thinks I am crazy and I have not been able to find a decent physician who would advise anything but that I should divorce my wife while the VA doc gave her a stern lecture on what it was like to live with PTSD, which I was also diagnosed with after they discovered that many of my symptoms were similar to PTSD. 27 years of military couldn't help but take a toll on anyone, especially when it is combined with the stress of a civilian police career, with the added responsibility of the bomb squad commander in an active area with over 100 calls a year. All those responsibilities were combined with my military responsibility. I take METHYLPHENIDATE S.T. 10 MG morning and noon to shake off the effects of the other drugs. That's Ritalin for those who recognize it from the kids using it. I've got news for you, it doesn't work the same on older adults. It helps but only slightly. The VA likes to diagnose GI's with it so they can say they had it before they ever joined the military. Makes for a good argument so they can reduce compensation. Now after all of the testing and drugs and counselling I am totally unable to do anything. I can barely sleep without drugs and a couple mgs of clonazepam and pain killers with a 75 MCG/HR Patch once every three
days skin patches and Oxycodone to overcome what the patch can't get. On top of this is the Citalophram for my so called depression and PTSD. This cocktail that should have killed me long ago includes drugs for reckless legs,Carbidopa 25 / Levodopa 100 mg so I can sleep. Dexilant from the VA for the Gerd I have from taking all these meds. I also take Famotidine twice a day to keep my gut from bleeding. Losartan, 100 mg from the VA to keep my blood pressure down. I also take a drug for mild cholesterol problem, and SINGULAR 10mg for Asthma that fires up on occasion. The VA is big on the cheapest drugs they can find so that even the doctors have to look them up most of the time to recognize what they are for.

So this comment started out about sex, SEX, WHAT IS THAT??? I look at my wife and just wish I could at the drop of a hat like I use to and I admit I look at other pretty ladies just hoping something would get me going. I truly wish I could end this. But long ago I said that there will always be something good come around the corner tomorrow or the next day if I just keep trying. Somehow this will get better, my penis will get hard again and I will be able to perform like I should before I totally lost her. I know she is seeing someone else and I am actually going through the pain of trying to not catch her. Every day I ask God to help me somehow.

My entire life has been given for the well being of others... Now,What about me?
Reply Reply


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