Fibromyalgia articles

This wonderful article is written by the husband of a Fibro sufferer. In it he speaks of all the battles and experiences from the ‘other point of view’.

I’ve Heard a lot lately of people saying their wife/ husband/Family, Just DONT get or WANT to UNDERSTAND FIBROMYALGIA. This is a Mans point of view, as 80% more women get it than men, and yes I have it too ( but have a higher pain Threshold.) I understand Fibro, most partners do not, this is their story, NOT MINE ( hope that makes sense )

It all starts with a diagnosis. Odds are, since FMS is poorly researched and poorly understood that you will both doubt this diagnosis because, “It couldn’t happen to us.” You’ll both search the web for other explanations and you’ll find them. Viruses, bacteria, the wrong food, not enough vitamins, not enough exercise, being overweight, depression, anxiety, menopause, age… the list goes on. Eventually you and your spouse will have to come to terms with the fact that Fibromyalgia is real and that she has it and, worse yet, that it’s never going away.

I know that when I first started experiencing symptoms of FMS my Family’s first thought was, “Is this real?” It’s not something I fault them for. When someone complains of pain and fatigue so debilitating that they can’t get around their house or even dry themselves after a shower and yet they look completely healthy it’s hard to take in. You see the person you married, energetic and pain-free and yet they are claiming to experience pain that sounds…well, unbelievable.

Then there are doctor’s visits. As you sit next to your spouse you no doubt hear doctors telling her to lose some weight, start an exercise routine, take some anti-inflammatories and stop worrying. There may be a part of you that wonders why she can’t do just that. No matter how much you want to support your spouse you want so badly for her pain to be so easily solved. But then it’s not.

When she tried to exercise she claimed the pain only got worse. The pills did nothing, she’s trying to lose weight, maybe she even does, but it doesn’t seem to help. Then there are tests. Blood tests, scans, x-rays. The answer is always the same, “Everything looks good. You seem completely healthy.” So, why doesn’t she feel completely healthy?

Finally you find a doctor with an answer, with a diagnosis and although you’re so glad that the searching is finally over the diagnosis seems almost worse than the uncertainty. Your spouse has a chronic, incurable condition. She will be in terrible pain for the rest of her life; she will be tired and sore, confused and achy. There’s a huge list of symptoms that the doctor spins off. And there’s nothing you can do about it.

You want to protect her, fix her, care for her like you’ve always done. And when you can’t do that you can’t believe it’s real. If it can’t be fixed it can’t exist. Or if it exists it will certainly go away, if only you and your spouse try hard enough, it must certainly go away. But your denial and hers do nothing for the pain and eventually you have to face the diagnosis.

Your spouse has FMS and because you love her, so do you.

Trust

When a person is diagnosed with FMS it’s often hard for their spouse to believe. Can a person who looks completely healthy really be as sick as they claim? Could they possibly be feeling all that with no outward sign?

It’s in this paradox of the ‘invisible illness’ that your trust in your spouse becomes so important. Because you can’t see it, and in fact no test outside of brain imaging can see it, you have to trust her. When she tells you she’s in pain you have to silence that voice in your head that tells you she’s just being lazy, she doesn’t want to the laundry, she would rather lie in bed and read. As much as reading may be preferred to doing laundry believe me she would rather be healthy and do chores every minute of every day than lay in bed for all time reading her favourite books or watching her favourite movies and dealing with this pain.

The first and most important hurtle that you’ll have to get over is that of trusting your spouse when she tells you she can’t do something. She may be able to push beyond her pain and accomplish the one thing, but she’ll likely be paying for it for days afterward.

It’s not just you that needs to deal with issues of trust. Odds are your spouse was a self-sufficient woman before she got sick. If she wanted something done she could just jump up and do it. She probably had a job and a paycheque. Suddenly she has had the ability to take care of herself pulled out from under her and she is probably scared and confused.

She knows that she is no longer the woman that you fell in love with, that things have changed and she is probably afraid, on some level, that you don’t want a spouse who’s sick. That you will grow to (or already do) resent her and her illness. It’s important for you to help her understand that you still love her. If the tables were turned and you got sick wouldn’t she take care of you? My husband says this to me whenever I wonder if my FMS is too much for him. I answer with surprise, “Well, of course!” and he says, “Why should it be any different?”

Roles at home

Before she got sick you and your spouse had a system. Things got done around the house, dishes cleaned, laundry washed, children fed by some collaboration or other. Maybe she cooked and you did laundry. Maybe she vacuumed and you cleaned the bathroom. Whatever roles you have lived with throughout your life together it’s all changed now.

The pain makes her ability to help around the house inconsistent. Odds are she feels guilty about this and wants to push through her symptoms and get everything done that she once did but by now you’ve seen what that does to her. You’ve seen the terrible flare ups and debilitating fatigue that comes from pushing too far and the last thing you want is for her to go through that.

But, you have a full time job maybe even two if your spouse had to quit hers. Is it so terrible that you get frustrated when you come home from work and dishes aren’t done and dinner is not made and the dog hasn’t been walked and the kids need baths and…and…and…?

It’s not so terrible. It’s completely normal. It’s nothing to feel guilty about. If and when you face feelings of resentment and frustrations, probably followed by guilt try (with most sensitive wording) to express to your wife that things aren’t working for you this way. If the old system is impossible than you need a new one.

Guess what? She probably feels terrible about it too. She hates seeing chores go undone that used to take her a few quick minutes. She hates having to cut out luxuries that your two incomes once easily afforded. She hates seeing you so exhausted from trying to take care of everything. Just like you she misses being able to sit in a clean house every once in a while and relax.

Sharing responsibilities

At times when this frustration is effecting you both take a few deep breaths and back pedal. Remember that no one is getting what they want in this situation. Try to remember that everyone’s life is harder now, that no one is at fault. Try to put yourself in your spouse’s shoes.

There is a way to fix this problem.

No one wants to be the healthy spouse saying, “Well, couldn’t you at least have done a few dishes?” No one wants to be the sick spouse saying, “I really need you to vacuum, I just can’t do it anymore.”

So, discuss what you can do. If she can still work a part-time job but is debilitated the rest of her free time as a result see if you can cut down living expenses to a point where you both feel comfortable so that she can still have good days. What chores can she do? Dishes? Brooming? Dog walking? What chores are infinitely easier for you?

Vocalize the things that are a necessity for you, the things that must be taken care of. Maybe you can’t stand the sight of dirty dishes but dust and weeds don’t bother you so much? Maybe she can’t handle the sight of an unmade bed. Take stock of the things that must happen and work together on being more laidback about the rest. Both your lives are so much harder now. If she’s having a rare good day and you are not too tired after work maybe just ignore nagging chores and cuddle on the couch.

Simplify

Sit down together and discuss the things in your life that now cause more pain or frustration than they’re worth. For your sick spouse life has very little enjoyment left and the last things she wants is to spend her few good days exacerbating pain. You are under way more stress than you are used to with work, an ill spouse and all the extra responsibilities that entails. Where can you simplify?

– Maybe your high-maintenance yard can be replaced by no-maintenance shrubs and bark?

– Can a friend, family member or child help out occasionally with little things that would ease some of the weight in your mind?

– Can you afford a maid every week or two for heavy cleaning? Or a dog walker?

-Could you work together to prepare huge chillies or stews on your days off so that you don’t have to work too hard to have a hot, healthy dinner during the week?

– Could a friend pick up heavy groceries for you on their own shopping trips and drop them off on the way home?

There are many options for simplifying life that can lower your stress as a couple and make your lives easier.

Allowing your spouse to keep her dignity

There’s no way to get around it, being sick is an undignified way to be. The diagnosis and doctors visits are bad enough; with her blood being taken, her body being poked at and the constant barrage of invasive questions. The indignity of being sick will likely follow her everywhere.

She will sometimes feel guilty about her inability to help. She may feel unattractive and inadequate as a sexual partner when she has to stop or refuse intimacy because of her pain or fatigue. She may feel embarrassed about the high pain that requires her to be naked for hours at a time because she can’t handle the feel of her clothing on her skin. She may have times when she needs you to help her dry her hair after a shower because she can’t lift her arms.

Any combination of these things can leave your spouse feeling awkward, embarrassed, inadequate and undignified and though you won’t always be able to help her feel like the incredible woman you know she is there are many little things you can do that help her to deal with these changes in her life.

– Remember, and remind her, how much effort she puts into doing the things she does. It doesn’t matter that now ‘trying her hardest’ means doing only a fraction of what she could once do.

– Remind her that if you were the sick one, and she was healthy she would certainly be there to help you through it all.

– If you can help it try not to respond to requests for help with looks of indignation, exasperation or incredulity.

-Try to remember that it’s probably not easy for her to ask for help with things she could once do on her own.

– If you can try to sometimes precipitate her needs so that she doesn’t always find herself asking and begins to feel like a nag.

– When it comes to problems with intimacy and inadequacy try to imagine how it might feel if you were suffering from pain or incompetence. Be respectful and compassionate when she’s not able to enjoy sex. She probably misses it just as much as you.

– Try not to think of her as a sick woman but as the woman you love, who happens to be sick.

– Believe her whenever she talks about her symptoms. This will mean so much to someone suffering from an invisible illness.

Dealing with guilt

Ah, guilt. Most of us are constantly bombarded by it. We don’t exercise enough, make enough money, eat the right food, spend enough time with our kids, call our mother-in-laws etc.

In a situation where one spouse get’s sick you are both likely to discover whole new worlds of guilt. You will likely feel bad about your occasional frustration that your spouse can’t do the things she once did. Or about the fact that you can’t fix her no matter what you do. I know that for my husband one of the hardest things about my having FM is having to see me have FM and being powerless to stop it.

She will likely feel guilty about the fact that she can’t do what she once could. She may feel bad about how much time she spends lying down or about exercising instead of cleaning. She’ll hate watching you get tired from working more, either at home or at your job (maybe both), and blame herself.

Is any of this guilt rational? Nope. Neither of you can help that she’s sick and odds are most of the time you both do everything you can to make your lives easier to live. That doesn’t change the fact that you’ll both probably experience this guilt at some point.

The best medicine here, as with so many other aspects of relationships, is open, honest, level-headed communication. When you’re feeling particularly guilty express it. Try language like, “It makes me feel guilty when…” instead of, “You make me feel guilty when…”. Knowing that your spouse is feeling this guilt too will go a long way in being able to accept it in yourself.

Another option, instead of expressing your guilt whenever you feel it is to remind your partner how grateful you are that they do the things they do. Say thank you when she does the dishes, because odds are it hurt.

If you’re feeling like your extra work is going unappreciated let your spouse know in the kindest way you can. If she’s being pushy about something that’s gone undone let her know that you’re trying your best to do what needs to be done, but you’ve taken on a lot more responsibilities than you once had.

Be aware that you are both suffering

It’s very important for both you and your spouse to understand that though she’s the one that’s sick both your lives are very affected by this illness. Yes, her daily life is extremely hard now. People who suffer from fibromyalgia are 9 times more likely to commit suicide than healthy people. This illness is it’s own little hell but your life is harder now too. By staying by her side you’ve agreed to deal with FMS every day to a lesser but still very real degree. It’s important that your spouse appreciates the challenges that her diagnosis causes you to face and appreciates all that extra work you’re doing.

Maintaining your relationship

So your spouse is sick, she’s still your spouse. Your partner in everything. You still want to feel like a person in love. You both want to be able to share the affection and romance that you had when she was healthy. FMS certainly doesn’t have to take that away, but it is going to change the ways you kindle that fire.

Dinner and a movie may no longer be a feasibility, sitting that long can be hard on her body, the sound and lights of a movie theatre may cause migraines but there are plenty of other options. Try:

– Renting a movie and cuddling on the couch.

– Take a bath together.

– Go to bed 30 minutes early so that you can snuggle and chat.

– Make a date out of take-out food by eating it in bed even when she’s feeling well enough to sit at the table.

– Try to avoid ice cream or coffee as sugar and caffeine can increase pain and end your date early.

– Formal clothing can be painful for your fibromite spouse. Casual dates where she can where jogging pants if she has to will make her pain more manageable.

– Used to go dancing? Dance in your living room in bare feet (heels hurt!). Hell, do it naked (clothing can hurt) and sit down after one song so she can rest.

– Read to each other out of great novels or books of poetry.

Be flexible about dates and plans as her pain is unpredictable. She may even need to rest for a day or two beforehand to make a date possible if your plans are more adventurous (for her dinner out may be plenty adventurous now).

Or a date may need to be cut short. That doesn’t necessarily mean the romance has to end. If you go out for dinner and her pain causes you to go home don’t flip on the TV. Turn down the lights (easier on her eyes and more romantic) light a candle and whisper about your past and your future. Make her laugh, it will help her pain.

Getting time for yourself

Now, more then ever, you and your spouse need to come together and work as a team and working effectively together can sometimes mean spending a little time apart. Both of you need some time to relax and refresh by doing something alone. For you that doesn’t mean mowing the lawn while she’s inside and for her it doesn’t mean dealing with a flare-up alone. Take some time when you’re not completely exhausted to do something you enjoy. Take an hour to play video games, surf your favourite message boards, work out, cook, hike, have some drinks with your friends; whatever helps you de-stress. Encourage her to use some of her higher-functioning time to do something she enjoys as well. For her something this simple may even help to reduce her pain.

When your spouse has fibromyalgia your life and hers have changed forever. In many (okay most) ways these changes are challenging but you still have your whole lives together and there are many simple changes you can make and simple things to keep in mind that will keep your relationship solid and fun through this adversity. This hub is a start, and not everything will apply. You and your spouse should commit to finding personal ways to make your life better. You don’t have to fight against her illness, it’s not going away, so instead work with it and make sure you find ways to still enjoy the life you have, even if it’s not the one you were expecting.

 

[Website Administrator Note: Sadly I don’t have a source or any data about the origin of this article. I’m grateful to the author, and would like to be able to credit this article properly. So if you know or can verify the source then please let me know]

How is it possible for sufferers to wake up in the morning feeling more tired than when they went to bed the night before? Some sufferers do not realise that this problem is recognised as one of the major symptoms of Fibromyalgia.

Many people with FMS do not progress through the five stages of sleep. They may go to sleep easily, but wake up early in the morning (3 to 5am) unable to go back to sleep, or to go back into deep sleep. Others may have difficulty getting to sleep and then have interruptions during the night. 

Some even sleep through the night unaware of any difficulties, but may not be experiencing a deep restorative sleep. Other similar sleep scenarios are experienced by many people with Fibromyalgia.


Alpha-Delta Sleep Anomaly

This sleep disturbance in Fibromyalgia occurs in stage 4 of the sleep cycle. A disturbance in the brains’ electrical activity occurs, resulting in arousal, preventing the normal progression through the sleep cycle.

The sleep disturbance is referred to by researchers as the Alpha-Delta sleep anomaly, a condition in which brief periods of awake-like brainwaves (alpha waves) interfere with deep level (delta wave) sleep. It can be described as a state of partial wakefulness within sleep itself.

When this disruption occurs in stage 4 of the sleep cycle the body is not restored during sleep, this non restorative sleep is believed to be associated with the pain, fatigue and other symptoms of Fibromyalgia.

While the Alpha-Delta Sleep Anomaly is the most common sleep disorder found in Fibromyalgia patients, it is not the only one. John Russell MD. Studied 44 Fibromyalgia patient and discovered the following sleep disorders: Alpha- Delta sleep anomaly (43%), Sleep Apnea (25%), Sleep Myoclonus (16%)(involuntary arm and leg jerking during the night) and Teeth Grinding (14%).

The Link Between Serotonin, Sleep and FMS

Serotonin is a major neurotransmitter (a chemical that helps nerves transmit their messages) which is essential for the induction of deep level, slow wave sleep. An important component of the sleep disturbance in Fibromyalgia involves serotonin.

People with Fibromyalgia have been found to have low levels of serotonin in their blood and spinal fluid. At this time doctors are prescribing medications that increase the availability of serotonin in the body, with the ultimate goal being an improvement in the patient’s quality of sleep (more time in delta sleep) and reduced pain sensitivity.

More research must be done on the relationship between prescribed medications and the alpha-delta sleep anomaly. While these medications do influence the availability of serotonin the exact mechanism by which they operate is still not understood. There are still many questions to be answered.

How To Improve The Quality Of Your Sleep

  • Consult with your Doctor about the necessity of taking a medication to improve your sleep quality
  • If you are experiencing morning grogginess while taking a medication to improve sleep quality, take the medication as early as 6 pm
  • Allow time to wind down before bed
  • Follow a bedtime ritual (i.e. a warm bath, relaxing music, reading)
  • Eliminate caffeine after 12 noon
  • Reduce or eliminate fluid intake after 6pm. if you have a need to urinate during the night. Medications such as diuretics and blood pressure medications that get rid of excess fluid should be taken earlier in the day, whenever possible  (you will need to consult with your doctor first)
  • Use relaxation tapes
  • Develop a programme of gentle aerobic exercise, but avoid exercising in the evening
  • Actively deal with problems that interfere with sleep (e.g. pain and discomfort, crying baby, uncomfortable mattress or pillow, snoring spouse, concern about issues etc)
  • Seek treatment for depression, anxiety and/or stress if you are experiencing these
  • Avoid taking a nap late in the day as it may be more difficult for you to go to sleep at your normal time, or you may sleep for a few hours, then find yourself awake and be unable to get back to sleep
  • Don’t work in your bedroom
  • A glass of milk before bed may be helpful

To Sleep Or Not To Sleep?!

Establish a routine. Go through the same routine each night and have a consistent bedtime regime. Prepare for bedtime by reducing your activity level several hours before bedtime, and by having ‘going-to-bed’ rituals, that you do consistently at the same time every night.

Things like a warm drink, brushing your teeth, taking your meds, and maybe a bit of light reading every night can help you wind down and get ready psychologically for sleep.

  • Use your bed only as a place to sleep (Ahhem!.. erm there is one exception ! ) do not use your bed for other things….. such as eating, reading, paying bills or watching television. Avoid caffeine and alcohol within 6 hrs. of bedtime. Both can interfere with sleep.
  • Get up and go into another room to read or do something else relaxing when you cannot sleep. Tossing and turning all night keeps the muscles tensed and active. This may also contribute to you waking in pain and feeling tired.
  • When you begin to feel sleepy go to bed and try again, you may need to repeat this pattern several times during the night.
  • Try to get some regular exercise during the day or early evening, to help you feel physically tired. This will help you sleep better, but be sure to finish exercising several hours before bedtime.
  • Have a comfortable environment, try to provide yourself with a good mattress or mattress topper, and control light, noise and temperature (note: Noise, Ahhem….this includes snoring by your partner!).
  • Limit daytime napping, unless this doesn’t disturb your sleep at night, in which case you may need more rest.
  • Unwind and cleanse the mind, taking all your problems off to bed with you heightens anxiety and makes it difficult to relax, try writing down any issues and put them in a box, put the lid on and leave them till tomorrow.
  • Set up a sleep schedule, based on the number of hours sleep you need per night (no less than 7 hrs a night) incorporate your bed-time rituals, and what time you need to get up. It makes it easier to work out when you should start your bedtime regime.
  • Use relaxation or distraction techniques to fall asleep, such as concentrating on your breathing, peaceful calming background music.
  • Get up at the same time, setting an alarm so that you keep a routine by getting out of bed at the same time every day, can help you to adjust back to more normal hours

Working With Medical Professionals

One of the most important members of your healthcare team is your Doctor.

His/Her job is to provide you with advice, treatment and hope. Your job is to help health care providers to help you. This shouldn’t be a one sided relationship, you cannot expect your doctor to wave a magic wand.

Recognise that will be inherent frustrations for patients and doctors when treating a condition that continues to hold mysteries for the researchers. There are constructive ways that you can help.

  • Prepare for your appointment ahead of time to make the best use of the time with your doctor. Be sensitive to your own symptoms and concerns and give some thought to the questions you might ask.
  • Take time to write down your questions and symptom complaints in an organised format, i.e. what the symptom is, how often you experience it, how it is affecting your life; if you have previously been prescribed medication, is it helping you cope with the symptom.
  • If you are experiencing pain, keep a diary and record the level, on a scale of 1-10, duration, and location of the pain (use a body outline, and shade the areas).
  • During surgery appts. be prepared to ask for what you need to manage your Fibromyalgia. Try to be concise (easier said than done I know!) and ( even harder ) not ramble.
  • Remember that sharing information is important, but listening is just as important, ask your doctor to repeat or clarify information that is unclear and write things down. It is helpful to summarise your understanding of what the doctor has just told you.
  • You can’t expect your Doctor to be your friend, but you can expect them to treat you with respect, and listen to your concerns and requests.
  • As there is no magic bullet for Fibromyalgia, great patience is required to find a combination of therapies and medication to bring about improvement. Work with your doctor to develop a plan of action should you have a flare up, so you can initiate treatment on your own, i.e. can you increase your sleep medication or can you have a standby medication that works for you, with your existing combination. What else can you do during a flare-up to reduce your symptoms? Consider other resources such as your pharmacist.
  • Realise that much of your treatment is up to you; exercise, relaxation, stress management, pain management, and pursuing additional complimentary or holistic therapies such as massage.
  • Your doctor can’t guarantee that a particular medication will work for you, but you can ask why he/she has recommended it and what they hope to accomplish by prescribing the drug.
  • Consult your doctor if you feel that your symptoms require investigation, do not be tempted to put everything down to Fibromyalgia.
  • Learn as much as you can about your illness, since you are the one who will manage the day to day problems that occur. Remember that you are in charge of your own treatment plan
  • Don’t forget that even Non-prescription treatments (herbs, vitamins, supplements) can interact with prescription medications. It is better to be safe than sorry and let your doctor know about everything you are taking.
  • Be respectful of the time constraints.

Not only is pain the main symptom of Fibromyalgia, it is a symptom that can be treated in a variety of ways. People with Fibromyalgia have different types of pain, so it is important to work with your Medical Professional to find out what treatment is best suited to your needs.

Sometimes multiple treatments are used at the same time, because they may have a better chance of reducing the pain more quickly. Fibromyalgic pain may not be the only pain that people with Fibromyalgia are experiencing- they may suffer with other types of pain too.

  • Understand that medication is not the only tool for treating pain. There are many non-medical treatments that can be used to help ease fibromyalgic pain i.e. hot or cold treatments. Self-help measures can be used to help cope with symptoms i.e. self-supervised gentle exercise programme (start with gentle stretching) and eating a balanced diet.
  • Set pain management goals and follow through on them. Pick your greatest pain problems and set goals to focus on each one.
  • Check your progress, use a chart or log to mark your progress as you meet each goal, keep a list of what does (and doesn’t !) work for you
  • Plan each day, use a ‘to do list ‘or a schedule for exercise or other activities, but don’t overdo it.
  • Seek and accept support, from friends, family, support group members or carers, they can help keep you on track, and help on difficult days
  • Prepare for difficult situations, make a list of trouble areas with your pain, and create a plan. Being prepared can help to decrease anxiety and lessen stress. Try putting a remedy box together.
  • Reward yourself, treat yourself to something nice when you reach a goal or complete a pain strategy. This will strengthen your positive attitude and your successes.
  • Review treatment strategies from time to time. Discuss with your medical professionals what you have found works for you, and share it with support group members! If you are contemplating trying complementary therapies, discuss this with medical professionals before you begin treatments. Never just stop taking prescribed medication.

Don’t be too hard on yourself, be patient and try to understand and accept that Fibromyalgia is not life threatening, and though it can be life changing, maintaining a positive attitude means this can sometimes be for the better.