Struggles Only #Exhaustipated People Understand

Just a little (“poke fun at ourselves”) fun from Nadia Sennet at SHE ‘SAID’

lrg_Ornamental_Divider__Englische_Linie

Must. Stay. Awake.

I’m never more than a slow blink away from falling face-first into my laptop in a pile of drool and snores – I’m literally struggling to keep my eyes open writing this article.

If you also battle constantly feeling tired, the good news is, there’s usually a medical reason for it that can be resolved with appropriate treatment. For the unlucky ones of us though, the struggle is very real…

1. There is literally no place or position in which you couldn’t fall asleep.

2. Getting out of bed in the morning is HELL.

3. ALL forms of morning-time activity are slow torture.

4. ESPECIALLY extra-early morning meetings.

5. You’ve had to develop a repertoire of excuses for being late.

6. No speaking can take place until coffee has been consumed.

7. And one coffee is never, ever enough.

8. You have been known to fall asleep at your desk.

9. A comfy couch is your kryptonite.

10. You’ve turned down social events in favour of napping.

11. Weekend time = sleep time.

12. People who schedule brunch catch-ups earlier than 11am make you want to throat punch them.

13. Any form of exercise immediately signals your napping instincts.

14. You resort to snacking constantly to stay pepped up at work.

15. And if you don’t get your fix every few hours, severe hanger strikes (otherwise known as FEED ME OR I WILL CUT YOU).

16. Boozing always results in you crawling into the nearest bed or couch and dozing off.

17. You start to freak out if you’re not in bed by 10:30…

18. And as such, have been known to leave parties early because bed is calling.

19. People who interrupt your sleep inspire a special kind of rage.

20. You regularly zone out mid task and conversation because you’re too tired to think.

21. You’d literally choose sleep over sex without hesitation.

22. Your bed is your fave place in the world.

23. Let’s face it. If there was a way to make a career out of sleeping, you’d take it in a heartbeat.

Images via giphy.com and tumblr.com.

Do you relate to the struggle of always feeling tired?

 

No-No to Nana Naps

According to a study published in BMC Musculoskeletal Disorders, when patients with FM nap during the day to cope with their symptoms, their symptom severity may actually increase. 75. good in bedA team of researchers from New Zealand, United Kingdom, The Netherlands, and Germany gathered data from an online questionnaire and noticed that frequent and longer naps taken during the day corresponded to greater symptom severity.

“Given the common use of daytime napping in people with fibromyalgia, evidence-based guidelines on the use of daytime napping in people with chronic pain are urgently needed,” stated the authors.

198. tiredThe questionnaire gathered data on age, sex, and other population descriptors, as well as measures to assess daytime napping behaviour. From this data, the researchers divided the patients into two categories: those who regularly napped and those who napped less frequently than once a day. The majority of daily nappers did so during the afternoon without meaning to take a nap. Only 22.5% of participants indicated that they plan their daytime naps. Generally, patients nap because they are tired or exhausted, do not feel well, need to make up for a bad night’s sleep, have a headache, or are experiencing pain.

FYI: Younger patients napped more than older patients during the day, both in frequency and in duration.

Although napping makes patients feel better at the time, this study suggests that overall symptom severity may worsen as naps become longer and more frequent.

Untitled

Foggy with a Chance of Rain

We experience a complicated mix of symptoms (just ask all those doctors we visit), the most frequent of which are an overwhelming feeling of fatigue (this is my personal favourite!) and pain.

For those new to FM, one of its hallmarks can be very scary – Fibro Fog

119. fibro fog

Fibro fog is a complete and utter lack of energy (even after a full night’s sleep) that causes an inability to focus or concentrate. This exhaustion makes it difficult to exert mental or physical energy for anything.  Fibro fog is a real cognitive impairment that makes simple tasks, such as remembering names or following directions, difficult if not impossible. There are, however, a few ways to help that don’t involve medications (because sometimes it’s those medications that make the fog worse!)

  • Pace yourself. Don’t pile on too many tasks for each day, and the ones that must get done should be scheduled for your “best” time of day. If the fog lifts more in the morning, schedule important meetings or other tasks early.
  • Develop a routine. This gives a predictable structure to the day so there is less need for remembering what is supposed to happen when.
  • journal picKeep it simple. Write lists, take notes, and utilize a personal planner. Keep your space organized and clutter-free, and deal with any paper (mail, bills, etc.) as soon as you get it to stay organized.
  • Get physical. People with FM report that physical activity relieves the painful symptoms, and research shows that moderate daily activity eases symptoms of depression and encourages better sleep.
  • Control your stress. There is a strong link between stress and chronic pain; practice deep breathing, visualization, and other meditative techniques to deal with or plan for stressful situations!

There are some new online brain-training sites such as Lumosity that have shown some promise in helping people develop concentration, flexibility in thinking, and otherwise increasing the neuroplasticity of the brain. These are free or low-cost, easy to try, and may help lift the fog over time.

For families of FM patients, it is important to understand that fibro fog is real. Be supportive and help to keep schedules reasonable and stress to a minimum. Participate in physical activity with your loved one, and help them to remember important events. The more stress you can alleviate, the better off everyone will be!

The Bitch is Back (literally)

It’s 6.10am and I am amazed by how much pain I am in.

work_625175_7_flat,550x550,075,f_purple-painMainly, I am amazed because I forget, in between flares, about how bad these can actually be; how much we actually put up with. I don’t normally write when I feel like this because I really can’t be bothered…and, then when they’re over, it never feels like it could have been THAT bad…WRONG!

So here goes (from toes upwards): both my little toes feel like they are being squished by my shoes (like they are every time I wear any time I wear any kind of shoes) except I haven’t worn any shoes in 3 days!

Purple-Stiletto-Heels (1)The balls of my feet feel like they have spent at least 10 hours in a pair of stilettos partying – once again, I can’t remember the last time I wore a pair of heels. You know those Dr Scholl sandals with the funny nodules – those nodules are growing on the inside of my soles. And there’s a spot where I had a papilloma which is now growing up the inside of my calf muscle, despite being removed when I was twelve. Sounds so bizarre, right? Welcome to my central nervous system!

Every muscle in my calves has cramped up; and I have used every single technique that the physio at rehab taught me, applied every cream and ointment from my box of tricks…everything!

b27293cc-66ff-4474-89ba-f809cfb092ad-tmpMoving upwards (and you may want to miss this paragraph if you don’t like to share too much information): 10 days ago, I suffered an anal fissure due to constipation – yeah! fabulous! Since then, it has felt like my insides have been cramped up completely. I have been taking turns at both constipation and diarrhoea while having a very sore ass the entire time! Needless to say, I am too scared to leave the house, in case my insides should just decide to drop out! Hey! It could happen!

Now the wonderful ointment that the doctor gives you for this lovely and embarrassing condition has the possible (and very probable for us) side effects of headaches and dizziness. Ta Da! I’ve continued with non-stop headaches and dizziness.

greenhealth_07_pmsLet’s move to another orifice. My period is due tomorrow so during all of this I have been pre-menstrual. Aren’t you guys lucky that you don’t have to be anywhere near me at the moment!

You’ll be happy to know that my chest, shoulders and neck seem to fine right now so we can miss those…otherwise this could be one really long bitching session.

great make upThe pain in my cheek and jaw bones (I’m told it is a continuation of migraine pain) is not reacting to anti-inflammatories, or any other pain medication – bring on the Botox injections (and the possible addition of Botox to the PBS in March). And I have had a giant case of face leakage for the last 3 days – and no wonder when you read all of this crap, really.

One can’t help but feel sorry for oneself in this state.

Maybe a sleeping tablet will help and I’ll wake up feeling better?

Fibromyalgia Awareness – What YOU Can Do and Why

I’m really sick of sitting on the couch, too tired to do anything every day; and then, at 5.16 am (now), being unable to sleep. I need some help. I need somebody to come up with a better way to manage this condition. Better yet, I need someone to cure this condition. Really? You, too?

In fact, I am incensed enough to get back on my high horse and start another Fibromyalgia Awareness Campaign.

What you can do?

fibro 1

Weren’t you complaining about unexplained pain last week? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Haven't you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Haven’t you been feeling like this recently? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I've been worried about how you're feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I’ve been worried about how you’re feeling. Please check out http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

I know you've been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

I know you’ve been having trouble sleeping. Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Got someone you're worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Got someone you’re worried about? Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Hey! This would explain why you have been feeling so tired all the time - Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

Hey! This would explain why you’ve been feeling so tired all the time – Have a look at http://fibromodem.com/irritable-everything-syndrome-fibro-what/symptoms/

 

Why we need to increase Fibromyalgia awareness

  1. (Most importantly) Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  2. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about FM, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  3. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  4. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  5. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  6. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  7. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  8. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers will understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  9. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Sounds good, doesn’t it?
Please, let’s give it a try.

Fibromyalgia Hurts Your Love Life

Forget the roses and the bottle of wine. When it comes to romance, Fibro is a buzz kill!

broken_heart1A new survey of FM patients has found that well over half believe that chronic pain has significantly harmed their romantic relationships.

The survey of 1,228 adults in the U.S. with FM found that pain was having a widespread impact on their social life, home life, work and school attendance, and exercise habits.

Pain also took a big toll on romance. Nearly 70 percent said FM pain has affected their physical intimacy with a partner or spouse. And over half (55%) said FM had negatively impacted their romantic relationships in some way.

“Fibromyalgia has long been misunderstood, as it is a complicated disease with many different symptoms, and as a patient, I have understood the importance of differentiating between the symptoms and recognizing the impact that just one symptom – like pain – can have on your life,” said Jan Chambers, president of the National FM & Chronic Pain Association (NFMCPA).

“This survey is important for the fibromyalgia community as it underscores the need for more effective dialogue between patients and their HCPs (health care practitioners), specifically focusing on pain management, including lifestyle changes that can make a difference.”

The survey, called Functioning with Fibro, was funded by Pfizer Inc., and was conducted in collaboration with NFMCPA and the American Association of Nurse Practitioners. The survey was conducted August 9 – 23, 2013, using an email invitation and an online survey.

On average, the survey found that FM patients had more bad days than good, with the number of “flare up” days exceeding the good ones in a typical week. Daily activities most affected by FM were sleep (71%), exercise (70%) and the ability to do household chores (60%).

FM patients who work missed an average of 3 weeks of work annually (versus only 3 sick days for the average American). They were late for work an additional nine days. About a third said their professional relationships were adversely affected by FM.

Other key findings:

  • 85% said pain was the #1 symptom impacting their daily life.
  • 85% said they had missed important events in their life, including holidays, birthdays, vacations, and social engagements.
  • 72% say they are hesitant to plan social activities out of fear they’ll have to cancel.
  • 54% say it’s had a negative impact on their friendships.
  • 48% say it’s had a negative impact on their family life.

FM patients were very pro-active about their treatment. Nearly half said they were currently discussing with their health care practitioner ways to improve day-to-day life. And nearly all (97%) had done something to improve their ability to live with pain, including minimizing stressful situations and setting more limits.

From NationalPainReport.com

Looking to improve your love life? Check out Fibromyalgia, Fatigue and Sex

Herbs and Supplements for Fibromyalgia

Managing the symptoms of FM or related ailments is not easy. So, many patients turn to alternative therapies for relief of pain and sleep problems. They may use Chinese herbs or over-the-counter supplements such as 5-HTPmelatonin, and SAM-e.

200px-US-NIH-NCCAM-Logo.svgBecause so many people — not just those with FM — are using alternative therapies, Congress has formed the National Center for Complementary and Alternative Medicine (NCCAM). It is part of the National Institutes of Health (NIH), and it helps appraise alternative treatments, including supplements, and define their effectiveness. This organization is now creating safe guidelines to help people choose appropriate alternative therapies that may help their symptoms without making them ill.

Are Herbs and Supplements for FM Safe and Effective?

Some preliminary studies indicate that some medicinal herbs and natural supplements may help treat symptoms of FM. Other studies of herbs and natural supplements, though, are less positive. If you want to take a natural approach to treating FM, it’s important to learn as much as you can about the therapies you consider. The herbs and natural supplements described here are just some of the alternative therapies that may have an impact on FM.

How Does 5-HTP Help FM Pain?

5-HTP (5-Hydroxytryptophan) is a building block of serotonin. Serotonin is a powerful brain chemical, and serotonin levels play a significant role in FM pain. Serotonin levels are also associated with depression and sleep.

For those with FM, 5-HTP may help to increase deep sleep and reduce pain. In one study published in the Alternative Medicine Review, researchers reported that supplementation with 5-HTP may improve symptoms of depression, anxietyinsomnia, and FM pains. However, there are some contradictory studies that show no benefit with 5-HTP.

5-HTP is usually well tolerated. But in the late 1980s, the supplement was associated with a serious condition called eosinophilia-myalgia syndrome. It’s thought that a contaminant in 5-HTP led to the condition, which causes flu-like symptoms, severe muscle pain, and burning rashes.

141. sleep deprivationCan Melatonin Help Relieve Sleep Problems Associated With FM?

Melatonin is a natural hormone that’s available as an over-the-counter supplement. It is sometimes used to induce drowsiness and improve sleep patterns. Some preliminary findings show that melatonin may be effective in treating FM pain. Most patients with FM have sleep problems and fatigue, and it’s thought that melatonin may help relieve these symptoms.

Melatonin is generally regarded as safe with few to no side effects. Due to the risk of daytime sleepiness, though, anyone taking melatonin should use caution when driving until they know how it affects them.

Is St. John’s Wort a Helpful FM Herb?

There’s no specific evidence that St. John’s wort is helpful in treating FM. However, this herb is often used in treating depression, and depression is commonly associated with FM.

There are several studies that show St. John’s wort is more effective than placebo and as effective as older antidepressants called tricyclics in the short-term treatment of mild or moderate depression. Other studies show St. John’s wort is as effective as selective SSRI antidepressants such as Prozac or Zoloft in treating depression.

St John’s wort is usually well tolerated. The most common side effects are stomach upset, skin reactions, and fatigue. St. John’s wort should not be mixed with antidepressants and can cause interactions with many types of drugs. If you’re on medication, check with your doctor before taking St. John’s wort or any supplement. In addition, be careful about taking St. John’s wort with other drugs, including antidepressants, as it could make you ill.

How Can SAM-e Help FM Pain and Depression?

289. pain in meIt’s not known exactly how SAM-e works in the body. Some feel this natural supplement increases levels of serotonin and dopamine, two brain neurotransmitters. Although some researchers believe that SAM-e may alter mood and increase restful sleep, current studies do not appear to show any benefit of SAM-e over placebo in reducing the number of tender points or in alleviating depression with FM. Additional study is needed to confirm these findings.

Can L-carnitine Help Improve FM Symptoms?

The studies are limited, but it’s thought that L-carnitine may give some pain relief and treat other symptoms in people with FM. In one study, researchers evaluated the effectiveness of L-carnitine in 102 patients with FM. Results showed significantly greater symptom improvements in the group that took L-carnitine than in the group that took a placebo. The researchers concluded that while more studies are warranted, L-carnitine may provide pain relief and improvement in the general and mental health of patients with FM.

What About the Effect of Probiotics on Digestive Problems Associated With FM?

poo-2Probiotics are dietary supplements that contain potentially beneficial bacteria or yeasts. They may assist with the breakdown and proper absorption of food and help improve digestive problems such as irritable bowel syndrome — a common symptom of FM. Some of the ways probiotics are used include:

  • treating diarrhea
  • preventing and treating infections of the urinary tract or female genital tract
  • treating irritable bowel syndrome

Side effects of taking probiotics are usually mild and include gas or bloating.

There are other herbs and natural supplements that people say have helped manage FM symptoms. They include echinacea, black cohosh, cayenne, lavender, milk thistle, and B vitamins. Nevertheless, there are no definitive studies on the efficacy of these natural therapies.

Fuzzy shot of pharmacy supplements shelf.How Can I Know Which Herb or Natural Supplement Will Help my FM?

***Before taking any herb or supplement for FM, talk to your doctor or pharmacist about possible side effects or herb/drug interactions. Herbal therapies are not recommended for pregnant women, children, the elderly, or those with weakened immune systems. In addition, some herbs have sedative or blood-thinning qualities, which may dangerously interact with anti-inflammatory painkillers or other pain medications. Others may cause stomach upset if taken in large doses.

If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.

Where Have I Been?

So, I’ve been MIA (Missing In Action)…why?

I have been slowly weaning off my Lyrica (see posts below for previous updates) to see if we can find something else that will allow me to feel less pain but with less side effects.

dose last

And I have finally made it to Week 6…

No! I do not feel miraculously better – in fact, I feel horrible. I didn’t realise what the Lyrica had been protecting me from (although it didn’t feel like much at the time). Let’s work from the head down:

  • No respite from the permanent headache
  • Very lazy right eye
  • Cheekbones growing out of my face
  • (Even more) increased sound sensitivity
  • Everything smells pungeant
  • Sensitive teeth
  • Itchy face
  • Aching neck and shoulders
  • Swollen-feeling wrists and hands (without swelling)
  • Costochondritis
  • Stomach cramps
  • Acid reflux
  • Diarrhea (whether I eat or not!)
  • Taut calf muscles
  • Swollen-feeling ankles and feet (without swelling)
  • Inability to remain asleep
  • No inner temperature control

Sounds like everybody else, right? But it seems that the Lyrica had reduced the impact of some of that. I just hadn’t realised how much. But the Lyrica also brought complete and utter fog.

And now I’m back at square 1; ready to start again, in a couple of weeks, to see if we can find a more effective medication regime, that will still allow me to think like a normal person!

Related Reading:

(S)Lumbar Support

Understanding how insomnia and other sleep problems contribute to hopelessness can help all FM patients.

Insomnia and disturbed sleep are common among people with depression and other mental health problems. In fact, disturbing research indicates that people with depression are significantly more likely to experience insomnia symptoms. So, which one came first? The chicken or the egg?

Most distressing is that insomnia also has been linked to an elevated risk for suicide. A recent study offers new details about the relationship between insomnia and suicidal thoughts among people with depression.

Researchers at Georgia Regents University examined the possible influence of insomnia and disturbed sleep among patients with a history of depression and suicide.

59 FMG insomniaTheir study included 50 patients between the ages 20-84. All had received treatment for depression either as in-patients or out-patients, or in the emergency room. Seventy-two percent of the participants were women, and a majority—56%–had attempted suicide at least once. Researchers measured levels of depression and insomnia, feelings of hopelessness, as well as the presence and severity of nightmares and attitudes and beliefs about sleep.

On average:

  • Participants experienced moderate insomnia
  • Analysis showed an association between the presence and severity of insomnia and suicidal thoughts (as expected)
  • Among people with depression, insomnia contributes to a sense of hopelessness about sleep, according to researchers. These negative feelings about sleep, as well as nightmares experienced by people with depression and insomnia, may be critical predictors for suicidal thoughts.
  • Researchers also analyzed data to examine the possible relationship between nightmares and attitudes about sleep with suicidal thoughts, and found significant associations. When these additional sleep problems were included in the analysis, insomnia itself was no longer directly associated with suicidal thoughts.

This suggests that insomnia may have an indirect effect on suicidal thoughts, through the presence of these other symptoms, in patients who are depressed.

This is important new information in the understanding of the link between insomnia and suicide. The presence of these symptoms—nightmares and feelings of hopelessness about sleep—may be a more specific predictor of suicide risk among people with depression than insomnia in general.

And because FM patients often have feelings of hopelessness about sleep (Hey! many of us haven’t had a decent night’s sleep in years!), this is important research.

Earlier work by some of the same researchers explored the relationship between insomnia and suicide. Their study included 60 patients between the ages 18-70. Two thirds were women, and all suffered from major depression and insomnia symptoms.

The researchers found that the severity of insomnia among these patients was linked to degree of suicidal thoughts. More severe insomnia was associated with higher intensity of suicidal thoughts. In their analysis, researchers isolated insomnia from other symptoms of depression, such as low mood and inability to experience pleasure. They determined that insomnia is an independent predictor of suicidal thinking.

This latest study has built on those findings, looking with greater depth and specificity at how insomnia and related attitudes and behaviours of disrupted sleep may influence suicidal thoughts.

Other research has shown a strong association between insomnia and disrupted sleep and suicide for people with depression and other psychiatric disorders:

  • Hungarian researchers found that sleep disturbances and nightmares elevated the risk of suicide by as much as 4 times among men, and as much as 3 times among women. In this study, frequent nightmares and sleep disorders were associated with a higher risk of suicide than depression.

The connection between insomnia and suicidal thoughts, influenced by nightmares and the presence of negative attitudes and beliefs about sleep, may  provide important new options for suicide prevention and treatment of depression and suicidal thoughts. By identifying nightmares and dysfunctional, negative attitudes about sleep as important predictors of suicidal thinking in people with depression, the medical profession may, finally, be better able to identify those who are at greater risk for self-harm.