#Fibromyalgia and #Relationships

Often studies look at the impact of how fibromyalgia and chronic pain impacts the workplace and the individual but there has been very little to look at how it can affect relationships with our significant others, family and friends. We know the burden of illness on the individual is high in regards to fibromyalgia and we know it can adversely affect a person’s career and it is obvious the stress, isolation and guilt of these factors alone will carry forth into other aspects of the person’s life.

Recent impact study on fibromyalgia
A recent 40 question multiple choice survey was posted online for a two month time period through various fibromyalgia and migraine forum websites. The objective was to poll a large sample of adults with FM about the impact on their significant other, friends and children. Questions included were regarding their symptoms, their demographics, any comorbid mood conditions, the relationship impact (with Relationship Assessment Scale) There were 6126 respondents to the survey who had been diagnosed with fibromyalgia.

“Using updated diagnostic criteria from the American College of Rheumatology, 91% satisfied the criteria for fibromyalgia (Fibromyalgia Severity score ?13 and pain ?3 months).
Half of participants endorsed that fibromyalgia had mildly to moderately damaged relationship(s) with their spouse(s)/partner(s) or contributed to a break-up with a spouse or partner.

Half of participants scored as not being satisfied with their current spouse/partner relationship, with satisfaction negatively affected by the presence of mood disturbance symptoms and higher fibromyalgia severity.

Relationships with children and close friends were also negatively impacted for a substantial minority of participants.” Musculoskeletal Care, November 21, 2012

To someone with fibromyalgia or to family members this seems like an obvious study, but sometimes the obvious needs to be pointed out before anyone looks into it. People do studies on the workplace because that affects the financial bottom line, insurance companies, the economy and important factors like that which govern statistics that make the world go round. Whether or not a marriage, a friendship or a family member is affected or a relationship harmed by this syndrome does not rank up their in importance even though it has a significant affect on the individual and the family unit. Obviously this is not necessarily the case; we are just talking about a large, rather consistent stressor. One that is difficult on the individual. One that is difficult on a significant other. Together that can cause a conflict or at the very least a lack of acknowledgement of both sides of how difficult it is on both parties. Chronic illnesses are not isolated events which affect individual bodies; they are illnesses that affect individuals and relationships of all kinds. People can sometimes understand and give a great amount of assistance and sympathy for a disease that is curable and short in duration but struggle with one that has no end date, where they no longer know how to respond, how to help the person they have a relationship with or what to do say about it. It creates a tension and the person who suffers from the illness may believe the family member, friend, loved one does not care, does not understand or is indifferent to their suffering. Unfortunately sometimes there is no way to breach this gap. However, it is always worth the effort to open communication. To try and inform people about the nature of your disability so they can understand it better because while you have become more informed as you have gone along, they may not understand it at all. While you have learned to cope in various ways, they may not understand your process, your limitations or restrictions and until they do they cannot help engage you within those boundaries. You have to understand while you are affected by your illness, they are affected as well and therefore your relationship to them likewise is affected and must be adapted in some way. Not all friendships will endure. Not every family member will understand. Not every relationship will cope. However, the ones that do are the ones worth the effort because positive, healthy relationships are our support network that are necessary in ways we do not always even acknowledge but certainly when surrounded by negative, critical people we feel the difference. We should therefore try to nourish the good relationships and encourage new ones that are positive.

Things to thing about:
a) See no evil: Sometimes family members or friends will simply pretend there is nothing wrong with you as if by the simple denial it will go away or become less of a problem. They feel helpless to actually do anything about it so they simply believe if they ignore it; it will make it easier for you to ignore it. Yet this apparent disinterest seems like lack of caring and can really make a person feel stressed out like the entire burden is one the to pretend they are ‘all good all the time’. As someone with chronic pain it is important to understand your family does not want to see you in pain and it is frustrating for them to see it and be unable to help. People have different ways of coping with that. Open communication is always quite important.

b) Acknowledgement: In a relationship sometimes we might feel that our partner does not comprehend how difficult it is for us to function and to complete daily activities. Yet we feel guilty if we do not do our share or some part of the routine tasks of the household. When we do them and our partner does not acknowledge the toll it takes on us this can develop into a feeling of isolation and resentment. Likewise our spouse may take on more of the household duties to compensate and feel that we do not acknowledge the extra effort they are putting in. This effort they are willing to put in but takes more energy and time on their part as well. If they bring it up it can make us feel guilty and immediately make us defensive because of that guilt. The need for communication is vital between partners so that resentment does not build up and an argument over these situations does not develop. It is important when communicating with your partner to not be defensive and understand your partner is not blaming you for being ill. They have valid frustrations and feelings and it is important to acknowledge their struggles with them and their extra efforts. Be open to suggestions on ways to accommodate chores and housework in ways that work for you.

c) Hermit: Friendships can be difficult to maintain over a long illness. Friendships are a two way street and when a friend feels they are always the one making plans that you have to postpone or cancel, or you never seem up to socializing or have as much energy to go do the things you once did with them they may feel they are giving all the energy into the friendship. They may feel you no longer have the time for them or they may simply give up on putting all that effort in. Maintaining friendships are great for getting us into the outside world, socializing and preventing that hermit mode of isolation that can increase fatigue and encourage depression. They play a far more vital role in our mood regulation than they perhaps realize. Communicating how much you value spending time spending time with them and how important it is for you to remain connected to them can help prevent that disconnect. You can suggest ways to encourage communication with them on days when you are unable to leave the house or suggest a short home visit instead. Help them understand that small ventures are easier for you to cope with, such a going out for coffee or lunch, rather than large plans that take significant amount of effort, planning and could be prevented depending on pain levels. Remember you can make plans with friends that are more costly to you energy wise and pain wise as long as you plan carefully, pace yourself and give yourself the time to recover afterwards. Positive friends should be encouraged and maintained and they will understand your limitations and restrictions if you explain them. Friends that do not believe the extent of your illness or are a constant negative energy drain however you might want to consider rethinking. People with introverted personalities tend to retreat when they are in pain, stress or depressed and also tend not to have a strong need to be around people or socialize, which makes them more likely to go into hermit mode and decreasing all socialization. It therefore might take a little more effort for an introvert to maintain a friendship however it is well worth the effort to do so.
d) Owning emotions: Family members and loved ones can have a lot of emotions to deal with of their own. Emotions they have a right to. It can be difficult to deal with all these yourself. Some can be simply a matter of a) acknowledgement. But there can be resentment, anger and even more. Then with children it can be even more complicated and difficult. Sometimes it is better to do family therapy for a bit to get all the cards out on the table so everyone can say their own perspective. Once it is all out there it will be a relief and from there a therapist will help in ways to cope with those feelings and how to get through it. You can also find ways to find out what you are capable of doing that might work in your household that would help with your family members and not be detrimental to you.

letters to normals
There are some sites that have Letters to Normals. These are letters to explains chronic pain or firbormyalgia to friends, family or spouses so that they can understand what it feels like a little better. It is something you can have people read or have them check out that might help start a communication between you and them. You can also print of a FM fact sheet from the internet as well. With the facts and one of these letters you have a good way to get a conversation going.

And here is a site for a spouse living with someone who has FM: Living with someone who has Fibromyalgia or chronic Fatigue Syndrome About.com

finding umbrellas.

The original quote here is 'life isn't about waiting for the storm to pass, its about dancing in the rain'. And I was like but what if the storm never ends, so this is my take on that.

Chronic pain isn't about waiting for the storm to pass, it is about realizing life is now the storm ... and finding umbrellas.

We have to understand the situation we are in. In a clear and realistic way. I get hoping for a cure in the future, because we all want that, but we have to live in the now. So live with the body you have. Prepare a life with the body you have. Adapt if things get better. Adapt if things get worse.

Finding those umbrellas that make the storm less powerful are vital. Useful coping strategies. Exercise routines we can handle. A good psychologist we can work with. Hobbies we are passionate about. All the things to help us in the storm and decrease our misery in its midst.

Tope 5 favourite #Somecards I made on #Illness

These are my top five Somecards I have made based on how many times I have seen them posted other places. And they had to have been posted on to count on this list.

 1st place goes to my Lack of Social life meme. It is one of the first I did and it very well liked, you have likely seen it make its paces on pages and groups.

2nd place one is popular in the migraine community and is also old. These days you may see the original or the ones that have been copied using their own photo and my words... so a few of them about. Always loved the way I phrased this.

3rd place one I have seen a few times, not as common a favorite. But individual people like it enough to post it various places.

 4th place I see this one in blogs and in other meme collections like this and posted here and there. People still use this one on a semi regular way.

5th place  one is not a common as my number one, because it is not shared nearly as much but I see it from time to time.

Runner ups:

Medical #Marijuana and #Migraines

I am on a new prescription medication for migraines and FM. The pot pill. Yes, the pot without all the fun stuff. Interesting enough some recently reserch just came out of migraines and cannabis from the University of Colorado.

In the study 121 adults with the primary diagnosis of migraine headache were treated with medical marijuana.
The primary outcome was number of migraine headaches per month with medical marijuana use. Secondary outcomes were the type and dose of medical marijuana used, previous and adjunctive migraine therapies, and patient-reported effects. Migraine headache frequency decreased from 10.4 to 4.6 headaches per month (p<0 .0001="" 14="" 48="" abort="" aborted="" acute="" also="" and="" being="" cause="" common="" commonly="" compared="" controlling="" daily="" decreased="" difficulty="" dose="" edible="" effects="" experienced="" for="" form="" forms.="" forms="" frequency="" headache.="" headache="" in="" inhaled="" intensity="" it="" marijuana.="" marijuana="" medical="" migraine="" more="" most="" negative="" of="" one="" only="" other="" p="" patients="" positive="" prevention="" related="" reported="" somnolence="" than="" the="" timing="" to="" treatment="" use="" used="" using="" was="" were="" which="" with="">
So there was a reduction in attacks. Unfortunately this was marijuana itself and not the pill. There is a difference in what is being processed. So I will see if the pill does anything before moving on to other methods.

Rhyne and her colleagues believe that cannabis offers a natural solution to the neurological disease. Earlier studies have linked chronic migraines to deficits in a person's endocannabinoid system — a group of receptors that regulate mood, appetite, digestion, motor coordination, development, and reproduction. This system also responds to components of marijuana known as cannabinoids.
"I believe this finding helps support further research for the endocannabinoid system and a deficiency in that system, potentially resulting in cannabis offering benefits in patients with this deficiency," Ryne said. What does marijuana does to migraines

Once again Insurance screws with me.

I heard back from my insurance company about my Long term disability leave from August till now. They will pay me from August 24 to Oct 14. last year. And no further. Leaving me quite short from October to January in funds.

This of course would Not have been a problem at all had they not screwed up in the first place and put me on short term instead of long term. I was well into it before they discovered their mistake and said I had to apply for long term, well appeal my long term. I had to return those funds. And it made the process that much delayed. Over $4000 dollars of money in delays I had to put back... before the long term process could even start. Had it started right away it would be done and I'd be back at work already.

I might have to contact the ombudsman about this one since their error cost me thousands of dollars in workable time. And I am not to blame for that. So why should I have to pay for that?

The next issue is the insurance company doesn't see my health as that big of an actual issue, as why they think I should only be off till October of last year. So I assume they think I am find to work full time again, although they didn't say it. But my doc, two psychologists and specialists thing I explicitly cannot work full time, only part time.

Needless to say, I want a response on that issue as well. However, it is causing me to immediately apply for jobs. In this market, next to impossible to do. There are jobs, just not many part-time non commuting jobs. I had heard there were way more part-time but when you look... not at all.

Brain grey matter atrophy in Fibromyalgia

There have been brain scans on fibromyalgia patients that have shown atrophy in specific areas on the brain. Does this suggest premature aging of the brain? We have to remember that these are not long term studies. They cannot determine for example if these areas were smaller to begin with which mean they would be more of a risk factor than an indication those areas are shrinking in size. Secondly they do not know the cause of the atrophy in the area. It is seen in other conditions just different locations of the brain. Stress and pain seem to be common factors but what neurotransmitters or mechanisms are causing the atrophy to occurs? Thirdly they do not know the rate of change over time. They have not taken individuals and looked at their brain changing over time and looked at how they are functioning. However, what it does tell us is what areas are being affected by FM and where the symptoms of FM are coming from and this is quite important for future research. They are looking to the brain. Studying it and seeing the differences and what effects that has. Researchers are looking at the where.

The game plan
The study published in The Journal of Neuroscience, 11 April 2007, 27(15) set out to use a voxel-based morphometric analysis of magnetic resonance brain images it see if there is brain atrophy in the brain of people with fibromyalgia. There was reason to believe so based on previous studies. Changes in the structure of the brain like this have been seen in other pain conditions. Since there are similarities with those conditions the researchers believed there might be similar atrophying as well. In particular they endeavored to find out whether FM subjects have atrophy in brain grey matter, in areas that would be involved with stress, pain modulation and pain perception.

The study: Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?
The study included ten patients with fibromyalgia and ten healthy subjects of a similar age. It excluded smokers, use of recreational drugs, alcohol consumption over three times a week, pregnancy, and any major medical, neurological and psychiatric conditions such as depression. The FM subjects were not taking anticonvulsants or antidepressant treatment for their condition.

There was no difference in volume of white matter or CSF in the brains of FM subjects and the healthy controls. The study results indicated that fibromyalgia subjects had significantly less grey matter volume and in fact demonstrated 3.3 times greater age-associated reduction in grey matter. Every year o f fibromalygia being equal to 9.5 times the loss in the normal aging process. The specific areas FM subjects showed less grey matter density where the cingulate, insular and medial frontal cortices, and parahippocampal gyri. According to the study the “The neuroanatomical changes that we see in fibromyalgia patients contribute additional evidence of CNS involvement in fibromyalgia. In particular, fibromyalgia appears to be associated with an acceleration of age-related changes in the very substance of the brain.” The Journal of Neuroscience, 11 April 2007, 27(15
Clearly this study shows fibromyalgia patients have grey matter atrophy that is more than three times the age matched controls. If this were the only study we might be inclined to say it was too small to be demonstrative but it is not alone in its conclusions.

In conclusion
It is a structural change that seems to be a response to how the brain is responding to chronic pain and stress. There are a many conditions (lower back pain, chronic fatigue syndrome) showing similar results but affecting different areas of the brain. What areas atrophy might help determine what the different symptoms we see in these conditions and it might even lead researchers to the mechanism behind the atrophy. Researchers in this study suggest a possible explanation might be “excitotoxicity and/or exposure to inflammation-related agents, such as cytokines.”
They also state it is interesting to note the grey matter loss occurs in areas “related to stress [parahippocampal gyrus and pain processing [cingulate, insular, and prefrontal cortices, which might reflect their long-term experience of these symptoms. Because cingulate and prefrontal cortices are particularly implicated in pain modulation (i.e., inhibition and facilitation of pain), structural changes in these systems could contribute to the maintenance of pain and symptom chronification in fibromyalgia. Furthermore, gray matter atrophy in areas such as parahippocampal and frontal cortices also appears consistent with cognitive deficits characteristic of fibromyalgia.” The Journal of Neuroscience, 11 April 2007, 27(15

#CognitiveDysfunction and #fibromyalgia

When we are talking about poor cognitive function we have to be precise and to not confuse it with just be absentminded but studies have shown there are real cognitive dysfunctions occurring with fibromyalgia. What is the cause of the cognitive dysfunction seen in the syndrome though? Is the brain aging faster? Is it due to depression or anxiety? Or is it correlated to pain or lack of sleep?

There are many areas where people with fibromyalgia can point to there being a problem but not all of them have been specifically studied. There is what is called Fibrofog the term used to refer to poor concentration. Often people have problems with their short term memory, their long term memory and their working memory. They have troubles remembering the names of objects, people and have problems with facial recognition. When they speak the wrong words come out or they forget what they say in the middle or they cannot comprehend what the other person is saying. When they are writing they use the wrong words, they mix up their letters, they make odd grammar mistakes and forget how to spell a word altogether. It is the same with numbers; they transpose them and cannot copy them from one page to another without mistakes. They forget how to do simple routine tasks or forget the order to do them in. It is scary and confusing when you do not know what is going on with your brain and what is to blame.

There have been more than a few studies looking into the fundamental aspects of cognition to figure out exactly where the cognitive dysfunctions are and how they compare to others of the same age. This helps determine whether the cause is the brain aging or if the cause lies elsewhere.

Areas fibromyalgia patients perform lower than age control subjects
Free recall- such as having a list of words to remember at a later time.
Working memory- Working memory is quite important for everyday functionality. It is that ability to take information, hold it in your mind and use it in some mental process.
Vocabulary tests- Often people with fibromyalgia have problems accessing their vocabulary, not that they do not in fact have one. A test could ask a subject to come up with a list of words that start with the letter B quickly and accessing that knowledge would be problematic compared to age controlled subjects.

Cognitive Functioning in Fibromyalgia PatientsARTHRITIS & RHEUMATISM
Vol. 44, No. 9, September 2001, pp 2125–2133

The ‘Cognitive functioning in fibromyalgia patients’ study published in the journal of Arthritis & Rheumatism compared 23 FM patients with 23 healthy age matched controls and 22 older control adults. The older control subjects were to compare the cognitive dysfunction reported in FM patients to the natural decline we seen overtime as we age. They measured “speed of information processing, working memory function, free recall, recognition memory, verbal fluency, and vocabulary. We correlated performance on cognitive tasks with FM symptoms, including depression, anxiety, pain, and fatigue. We also determined if memory complaints were correlated with cognitive performance.”

According to the study the FM patients performed more poorly than their age counterparts on all aspects of the study such as working memory, free recall, recognition memory, verbal fluency and vocabulary with the sole exception of information processing. The FM patients performed more like the older controls in the study except they had better information processing and poorer vocabulary. It also is suggested within this study that poor cognitive performances was correlated to pain and not depression or anxiety. The fact that “speed of processing was intact in FM patients suggests that the most basic and global information processing ability—how fast we process new information—is not a problem for FM patients. Our findings do indicate that FM patients have more limited working memory and long-term memory than do age-matched controls. The cognitive symptoms described by these patients are likely to be related to difficulties in these domains.”

Intact speed of processing is quite good news if this study can be validated because it is vital to most cognitive functions. Decline in speed of processing in fact might indicate deterioration of cognitive functions and “Speed decreases that occur with age have been hypothesized to be related to age-related declines in dopamine receptors, decreased brain weight, increased dendritic branching that leads to circuitous cognitive processing, or decreases in myelin sheath.” However, functionally, on all most other indicators people with FM are operated cognitively twenty years age advanced and even more poorly indicated on vocabulary standards.

Cognitive impairment in fibromyalgia syndrome: The impact of cardiovascular regulation, pain, emotional disorders and medication: European Journal of Pain Volume 16, Issue 3, pages 421–429, March 2012
In the European Journal of Pain a study was published to look at whether high or low blood pressure could be affecting cognition of fibromyalgia patients. Indeed some people have speculated the lack of blood flow to certain areas of the brain is responsible for some of these symptoms. The study included 35 FM patients and a control group of 29 healthy people. This study saw the same cognitive impairment patterns seen in the study above.
One finding was that the study suggested that "pain plays an important role in the genesis of the cognitive deficits in FMS. Clinical pain ratings in terms of the number of words used to describe pain were inversely associated with the number of calculations in the FMS sample. Furthermore, when pain ratings were statistically controlled, the group difference in performance was no longer significant. This is in line with our finding that FMS patients using analgesic medication, particularly opiates, performed better than patients not using these drugs. These results corroborate numerous studies supporting the interfering effects of pain on cognition (Grace et al., 1999; Park et al., 2001; Karp et al., 2006; Dick et al., 2008; Glass, 2008, 2009, 2010; Munguía-Izquierdo et al., 2008; Verdejo-García et al., 2009). Pain is an attention-demanding condition that activates brain areas associated with cognitive processing such as the cingulate and the prefrontal cortex (Peyron et al., 2000; Apkarian et al., 2005). One may thus speculate that central nociceptive processing detracts from cognition by requiring enhanced neural resources in the respective brain areas (Park et al., 2001; Baliki et al., 2006; Dick et al., 2008; Glass, 2008; Luerding et al., 2008; Moriarty et al., 2011).”

With the control group blood pressure was a factor in cognitive functioning however with the FM group “the inverse association between BP and performance was absent, which may indicate that the affected patients are protected against the negative effects of high BP on cognition. Taking the aforementioned mechanism into account, it may be hypothesized that the CNS inhibition due to baroreceptor stimulation is reduced or absent in FMS. This is in accordance with the observation that the frequently described reduction in pain experience following experimental baroreceptor stimulation did not occur in patients with chronic pain disorders (Brody et al., 1997; Bruehl and Chung, 2004). It has furthermore been shown that pain dampening during experimental baroreceptor stimulation only occurs in individuals with normal to high BP, whereas in those with low BP this procedure may even increase pain (Elbert et al., 1988; Angrilli et al., 1997; Brody et al., 1997).”
He likewise determined anxiety and depression did not correlate to the cognitive concerns. However, this study shows that blood pressure does not look like it a factor and that level of pain might very well be an important factor.

Clearly there is a great deal of cognitive dysfunction with fibromyalgia sufferers such that a person is cognitively function twenty years older than they are. However many studies have validated that intact speed of processing is not affected which suggests the brain is not in the process of accelerated aging and that is a key difference. Another important thing to note is that these two studies and more have shown that anxiety and depression are not factors in fibromyalgia cognitive issues. The last study suggests that perhaps it is the level of pain experienced that affects cognitive abilities and certainly that does seem like an area that needs to be explored further. However, we are left wanting are we not? There have been other studies showing that pain is an indicator but perhaps because the same area of the brain is activated and it is a distraction. We are left with knowing there are these cognitive impairments but not the specific cause for them or what is going on in the brain with enough clarity to do anything specific about it. Therefore while we have a few options for pain treatment there is really nothing available to assist a person with some very important cognitive concerns. In fact side effects can make cause mental grogginess anyway. Discovering what the relationship between pain and cognition in the fibromyalgia brain is a very important area to delve into. It hardly seem probable the cognitive problems are associated with a cause separate from what we know causes pain to be hyper intense. Although it is rather hard to argue with the theory that pain is distracting, perhaps inherently so, due to its function to grab our attention and focus.

Helpful tips
Until then all we can do to help with our cognition is stick to regulated routines, keep regular sleep habits and keep regular eating habits. Routines establish habits which enable us to remember things easier so we are less stressed. We want to keep our stress levels as low as possible. Sleep habits are difficult to maintain but irregular habits and changes cause disruptions that we physically do not handle well and can cause greater stress and fatigue. Regular eating habits of eating throughout the day, snacking every three hours, will keep our energy levels higher and keep the fibrofog at bay. Using reminders and To-do lists also help in organization. If during the day you feel your concentration waning get up and have a stroll about the office or a walk around the block. The break will energize you and help refocus some of that mental energy. Sometimes changing from one task to another can also get your brain going. Distraction seems to be a component to cognitive issues. Pain being one major distraction. Perhaps along with our over sensitivity to the environment and stimulus to external distractions. Therefore our ability to pace ourselves and take breaks when needed can certainly help if we are overly strained. Another key is to avoid multi-tasking because it naturally segments your attention into different areas and it is easy for interruptions or concentration issues to make you suddenly lose your focus mid task. Try not to over stimulate your system with loud noises and bright lights; the less distractions from your environment the better. There is also a little something to exercising your brain with puzzles or brain games. Finally, double check with your doctor to ensure a medication is not having a side effect that may be making these symptoms worse if they are troubling you.

#Fibromyalgia and #Sleep

Fibromyalgia and sleep dysfunction go hand in hand. Some researchers believe that fibromyalgia in essence is a sleep disorder but whether it is or not it definitely is an important component to the syndrome as a whole. Lack of sleep leads to physical and mental fatigue which increasing the brain fog associated with fibromyalgia. Non-restorative sleep has also been shown to increase the tender point pain found in fibromyalgia.

“More than 90% of patients with FMS, most of whom are women, describe poor quality of sleep. Irrespective of its duration, the sleep is often perceived to be light and unrefreshing. The patient may be aware of restlessness with kicking and involuntary leg movements, or may have a sleep-related breathing disorder such as loud snoring and interruptions to breathing. On the rare occasion that sleep is restful, there is substantial improvement in daytime symptoms. Indeed, unrefreshing or nonrestorative sleep are correlated to the myalgia and tender points in FMS.” CNS Spectrums 2008
Regular sleep and FM sleep
Typically a person cycles every ninety minutes from light stage one sleep (alpha) into deeper stage two (beta) and stage three (gamma) until they reach stage four (delta) sleep. Delta sleep is the most refreshing and restorative of the stages whereas alpha is also known as REM (rapid eye movement) sleep where we do most of our dreaming. People with FM have been shown to have disrupted stage four sleep. This means while they can sleep for eight or ten hours they still wake up feeling tired because the sleep is not restorative since stage four sleep is where energy is recovered and muscles are repaired. It can also cause the level of growth hormone in the body to be low as growth hormone is primarily distributed during stage four sleep (80% comes from delta sleep). Lower levels of growth hormone leads to more muscle pain and degeneration. Lack of stage four sleep also causes cognitive impairment or brain fog as well as fatigue and muscle aches. Some people with FM also have low levels of a hormone called cortisol during the day causing fatigue and high levels at night causing insomnia. Cortisol is generally released during REM sleep but can be during any stage of sleep and its peak production is early in the morning prior to waking.

Additional sleep dysfunctions with fibromyalgia
Other than the dysfunction in the actual sleep stages with fibromyalgia there can be additional sleep concerns. One problem that develops is simply a pain issue. Because of muscle aches and discomfort it can be difficult to get comfortable enough to fall asleep which leads to insomnia. It can also cause frequent waking since if you are not in deep sleep and your position becomes uncomfortable or painful that can often be enough to wake you up in order for you to adjust your position.
Another issue has to do with dysfunction in the automatic nervous system. It has been recently suggested that with FM the sympathetic part of the automatic nervous system which essentially controls our fight or flight responses is perpetually stuck ‘on’. This prevents the body being able to really relax in order to sleep deeply. It ensures a person with FM is a very light sleeper, essentially still on alert. This aspect may explain why people with FM frequently wake up during the night and when they do they have difficulties falling back to sleep again.
  • -Insomnia
  • -Frequent waking
  • -Difficulty falling back to sleep after waking
  • -Difficulty reaching stage four sleep
  • -Unrefreshing sleep
  • -Sleep apnea
  • -Restless leg syndrome
  • -nighttime muscle contractions, twitching or nocturnal jerks
  • -Grinding teeth (bruxism)
Good sleep hygiene
The first step to address sleeping issues is to look at your sleep hygiene. While most sleep dysfunction can be complex and difficult to manage, if you maintain good sleep hygiene it will help with the treatment along the road.
• Avoid stimulants such as caffeine up to four hours prior to bedtime. Caffeine builds up in the body through the day so it is best to avoid after lunch.
• Maintain a consistent sleep pattern of waking up and going to bed at the same time.
• Avoid late night snacks. If you do snack stick to small snacks that have a lot of carbohydrates in them as these tend to aid in making you feel drowsy.
• Never exercise before bedtime but try to exercise regularly even if that exercise is going for short walks, yoga or doing some stretches.
• Have no distractions in the bedroom. No TV, video games, iPhone or laptops. Do not do your work in the bedroom. Or snack. The bedroom should be reserved for sleeping or sex and we don’t want our brain to be associating the space with other waking activities.
• Make the room as comfortable as possible for sleep. Use blackout curtains to reduce light or a sleep mask. Use some method to reduce background noise whether that is earplugs, meditation music or a white noise machine. Ensure the room is not too hot or too cold.
• Do not take frequent naps but if you feel that you need to keep them under an hour.
• Do not watch TV at least an hour before bed because it is stimulating for the brain and makes it difficult to relax. The same can likely be said for being on the computer.

Nonprescription sleep aids
There are many nonprescription herbal remedies in pill form, teas or drops. One thing you must always remember is that all of these, just like prescription medications, can have side effects and interactions. They can interact with you existing medications; for example, valerian is suggested to have the potential to increase the effectiveness of antiseizure medications, so if you take antiseizure medications this would not be the sleep remedy for you. Therefore, it is vital we consider these alternative herbal treatments just like we would any other medication and ensure we mention to our doctor and pharmacist that we are taking them.
  • Hops
  • L-theanine
  • Passionflower
  • Valerian root
  • Melatonin
  • Wild Lettuce leaf
  • Kava kava
Prescription sleep aids
Antidepressants: antidepressants are used for FM because they help with pain and increase serotonin which has been shown to be low with FM. Low doses of certain antidepressants are often used to aid with sleep. Common ones for FM are Trazodone and Elavil.
Hypnotics: Drugs such as Lunesta, Ambien, Restoril, Imovane and Sonata. These are sleeping pills that are generally not considered for long term use because they are habit forming.

Lack of restorative sleep combined with the interference with certain hormones released during sleep has been shown to intensify fibromyalgia symptoms and been speculated to cause some of them as well. While getting quality restorative sleep regularly will not cure the syndrome it has been shown to reduce the symptoms. Therefore treating the sleep dysfunction seen in fibromyalgia is quite important to managing the condition. Often when people refer to fibromyalgia the top three symptoms are muscle pain, fatigue and sleep dysfunction but sleep dysfunction has the unique feature of having the power to intensity both pain and fatigue and therefore ought to be considered primary in management of the syndrome overall.

#Magnesium And #Fibromyalgia

Magnesium is important for people diagnosed with fibromyalgia because generally they are deficient in it and have additional concerns with absorption of it. A magnesium deficiency contributes to many of the fibromyalgia symptoms and studies have shown taking magnesium alleviates some muscle pains but it is possible it may have a deeper role in assisting with other symptoms. Either way it is one of the most fundamental supplements to be taken for the syndrome and most studies show it can help moderate symptoms.
A study in 2002 done by George Ramalanjaona for Alternative Medicine Alert concluded:

Based on preliminary data, Mg appears to be effective against tender point pain when used at high doses and in combination with malic acid.Based on currently available studies, Mg is a reasonable addition or an alternative to other known drug therapies in subgroups of FM patients that have low magnesium levels or receive high doses of B1.In addition, based on short-term studies, Mg seems to be effective in relieving well-known symptoms of FM and safe with only minimal and infrequent side effects. Further clinical trials with long-term analyses need to be performed to confirm preliminary findings”
Often people with fibromyalgia are deficient in magnesium
One reason for this may be due to the sleep disruptions common with fibromyalgia which causes a lower amount of growth hormone secretion. People with fibromyalgia do not spend enough time in deep restorative sleep which is when growth hormone secretion occurs. Growth hormone creates IGF-1 which is responsible for tissue repair but also it affects intracellular levels of magnesium.

Signs of magnesium deficiency
• Loss of appetite
• Nausea
• Insomnia
• headaches
• Vomiting
• Behavioral changes
• Agitation
• Anxiety
• Restless leg syndrome
• Abnormal heart rhythms
• Low blood pressure
• Muscle cramps
• Muscle spasms
• seizures

How does a deficiency affect fibromyalgia directly?
Low levels of magnesium can cause a variety of symptoms because it is important for many functions in the body. It is needed for bone formation and therefore bones can become soft with a deficiency leading to osteoporosis. Magnesium is an activating mineral for approximately three hundred or more enzymes and therefore it is vital for many metabolic functions. It is necessary of almost all the enzymes, for example, that turn sugar and fat we eat into ATP (Adenosine Triphosphate). Low levels of ATP have been found in people with FM which could play a role in many symptoms of the syndrome. About twenty percent of the body’s ATP is found in the brain and low levels can diminish cognitive abilities which could be the cause of a predominate fibromyalgia symptom called fibro fog.
Magnesium is also needed in the production of the neurotransmitter serotonin. Serotonin has been shown to be lower in people with FM and it is a neurotransmitter involved with how we perceive pain.

We also need magnesium for proper muscle functioning. A deficiency will cause muscle tension, spasms, twitches and restlessness. Because magnesium can inhibit nerve receptors (NMDA or 5-HT3) which have been known to be associated with FM a deficiency may increase neuropathic associated pain. It is because magnesium can regulate nerve functions that a deficiency leads to nerves firing too easily from minor stimulus. This can lead to such conditions as migraines or Raynaud’s phenomenon which are both comorbid with fibromyalgia as well as sensory over-sensitivity, arrhythmia, multiple chemical sensitivity (MCS). Magnesium deficiency has also been linked to increase levels of substance P, which is a major concern to people with FM as it is responsible for the persistent pain signal sent to the rest of the body.
How to get magnesium

Magnesium can be found in: whole grains, dark green leafy vegetables, cashews, almonds, Brazil nuts, brown rice kidney and lima beans
Oral supplementation is an option however there may be concerns with absorption. Generally with FM there are associated concerns of irritable bowel syndrome (IBS) or other problems that cause difficulties with absorption. Additionally magnesium oxide and citrate can have a laxative effect if you are having problem digesting it. It can also take a great deal of time before magnesium levels are raised in the tissue and for there to be a noticeable difference in functions. Certain things such as fructose may interfere with magnesium getting into your system and phosphate will bind with magnesium in the stomach creating an insoluble salt.

It is best to take magnesium with food and it is best to take with calcium and Vitamin D. Ensure you have enough vitamin Bs in your diet as Bs are necessary for proper magnesium usage and most people with FM can be low in vitamin B’s due to stress. If you find you are experiencing the laxative effect with a type of magnesium then try another type that you may be able to digest better. The magnesium most recommended for FM is magnesium malate (naturally found in such things as apples). Another option is magnesium is liquid form. The recommended dosage is 300-750 mg daily, but due to the difficulties one might have with digestion it is recommended to start off slow and increase the dosage over time as you find comfortable.

Life #Choices and #Compramises for our #health

Every choice we make, we eliminate another possibility of our self. I chose to go to university, rather than straight into a job, therefore I chose a significant student loan debt. Just kidding. There was value to that education, but it was a choice that eliminated other choices at that time. The reason people are nervous about making decisions is because when they choose one thing the other thing is no longer an option.

What is difficult about chronic illness is that it is a factor that limits our choices and possibilities all on its own. For example I went on long term leave from work and in the course of this had also been going to treatment at a pain clinic. I had been told that I may be able to work again part time in about a year. So I wouldn't be able to go back to my previous work or income. I wouldn't be able to replace it with other fulfilling full time work. Rather I might be able to work part time. This was difficult for me to accept because I cannot fathom a part time job that will pay well enough to be sufficient income and also be fulfilling to me in the same way. It frustrates me immensely that I will do all the work I am doing and that is what I get out of it. A decrease in my possibilities. Turns out due to insurance I went back to work full time, because they don't listen to experts. Now I am back trying to get on leave because working full-time obviously didn't work out.

We all face this though at some time or another. We call them ‘compromises’. When I went to university I went and achieved my Masters. I would have gone for my Phd in the aim of becoming a professor but my fibromyalgia was not treated at the time and the migraines I had became chronic, nor where they treated with a preventative yet. So I made a compromise for my health to not progress to the Phd and instead take some time off and get treatment. Worked instead.

When I went to work out of university to pay the student loan bills I worked at a hotel doing shift work at the front desk. The lack of a proper sleep cycle made my migraines significantly worse, and I was specifically told by my doctor to find new work. So no shift work, I told myself. Just like I had told myself, no standing all day, no repetitive lifting and no lifting heavy objects at work because of FM. Limiting my job options as I went along.

It can be a very frustrating feeling knowing that our health is literally cutting off possibilities and thus guiding our future roles in life by doing so. We play what if games with ourselves. If I had been healthy I could have… so on and so on.

This outlook never does us any good because what we are looking at is the limitation. What I look at in my future of working part time, is this limitation of restricted possibilities. Of what I can no longer do. Of ambitions lost. Careers gone. How I should re-frame that thinking is looking at it as taking care of my health first. When I was working I was in what I call survival mode… when you are living moment to moment in pain, just getting through it until you can get home and suffer in peace. It has a raw and desperate edge to it. It had suicidal ideation. A suicide attempt. No pain management. No social life. Nothing outside of surviving work and getting home. Lots of sleep deprivation due to pain. And that, clearly, all that was not good for me in the least bit. Thinking That would be a good place to return to would be Madness. So it is in my best interests not to do that. What I need to do is less. Working part time is less stress, less time in pain, less of all of that and hopefully will work out significantly better. It is a valid compromise to make. And hopefully I will also have the energy to have a life in there as well. For a social life. For family events. For gatherings. Things that are important that you give up when you exceed you pain limits.

Therefore instead of looking at the loss of possibility and limitations. Look at the health benefits and improvements to you overall quality of life. If your quality of life improves, then you are happier.If your well-being is better then it is worth it. If you are able to have a more fulfilling life, your mood will be better. When we look at the whole entire picture, these compromises limit, but they give back pieces of ourselves we cut away in order to deal with the illness and work.

None of us like these compromises we have to make. The compromises themselves can be very difficult. Sometimes taking us time to adjust to the changes they cause. But there are benefits to these choices. Not just health benefits. Life benefits. Never think of what you are giving up, think of what you are moving towards.

#Pain that exceeds #Coping Strategies

Pain can affect our concentration, our working memory, our short term memory and mental clarity. It can also by it self be a risk factor for suicidal ideation and suicidal acts. Pain is difficult to cope with and as such you may related to this to next posters I am going to share:

There are times we feel overwhelmed with all the things we have to do in order to maintain, to cope, to possibly feel a bit better.
I think it is natural to feel tired of this fight we are in. We all have days like this. I usually have a pity party day, snuggle in my bed with a good book and just rest for the day. I think we should be allowed that from time to time. Days of rest. And also the occasional pity party. That is not to say the next day we won’t get right back to it, but for that moment we just need a break from it.
There are times we wish for it all to go away. Some of these are passing thoughts that mean nothing. Wishful thinking. Sometimes it is suicidal ideation, but only of the idea. Sometimes suicidal ideation of the action, of the plan, of the consequences. And then it is getting serious. But you brush it off because everyone in that much pain must have such thoughts from time to time. Finally one night thought goes into action, just to get that pain to stop. Pain is a high risk factor to suicide that a lot of doctors don’t quite take into account. It is something we should take into account. We should know when the pain is getting too bad, when we are not getting effective treatment from doctors and we are having these sorts of thoughts regularly that this is dangerous.
Not to be ignored. I ignored it and it led to an attempt. Later I sought out a psychologist who specialized in people with chronic pain who has helped immensely. Pain is a complex problem and it needs complex solutions. When we have suicidal ideation we should seek help for it. Our care should be physical, mental and emotional. Just like the pain is. When the pain is greater than our capacity to cope with it, it is a serious problem that needs serious answers. A) changes to your treatment of that pain even if it means a change of your doctors B) reassessment by specialists if needed C) seeing a psychologist, one who understands chronic pain to help with those issues.
It is important to understand the dangers of pain. When you are coping. When you are not coping. When we are not coping it just means we have pain that exceeds the coping strategies that we have and we need to refine them. And we need the resources to do so.
At this point it is very important we consider these factors:
  • we be clear with our doctors that our pain us unmanaged and we are unable to cope
  • If that doctor fails to help us or is disinterested in our suffering, it is important we find one that is willing to listen and help us manage our pain.
  • It is important we consider other resources like pain clinics and specialist in pain.
  • It is important we find a psychologist who understands chronic pain that we are comfortable with that can help us with alternative coping strategies.
  • It is important we have support somewhere. Our own support system we can depend on. Support groups that we attend. Online support groups that we go to.
  • On a final note for those of us working when pain has exceeded our coping strategies we sometimes have to reevaluate our working situation and see if there are any alternative compromises to be made in the workforce that may relieve some of the situation. This can be difficult but some companies allow flex work, changes in hours, working from home partly, reducing hours, changing the work enviroment.
When pain increases and we are left floundering and trying to push through the pain… and not doing well at it. Just trying to survive it because it isn’t getting better. It is a very difficult position to be in and one we often have no way of figuring a way out of. That is what is dangerous, because the pain itself at that level is dangerous when we are struggling to get through it. We have to attack it on all angles to see if we can get a handle on it once more and once again reach that level of being able to cope with it.

People in this position are very close to my mind at all times, since I have been there. So I hope that my words help a little in thinking about how you might worth through that.

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