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Saturday, July 23, 2016

Lack of continuous sleep in Fibromyalgia #BlogBoost


Fibromyalgia has some pretty distinctive sleep disturbances associated with it not to mention comorbid sleep issues. It is one of the key factors in the syndrome... our inability to attain refreshing sleep. I wrote a post about it here. So it interests me that they have done some recent research in this area. One of the important things about our sleep dysfunction is that since it isn't presenting like regular insomnia the treatment likewise has to be different. Lack of sleep, as we are all aware, can cause a lot of symptoms. 

So the recent Canadian study in Ontario took a look at 132 subjects (109 insomniacs and 52 without any sleep difficulties). During the two night analysis their sleep was recorded by polysomnography; electrodes placed on the face and scalp of the subjects enabled the researchers to look at sleep latency, the stages of sleep, sleep cycles and duration of sleep.

With fibromyalgia and insomnia subjects have issues falling asleep, compared to controls and they have fragmented sleep. They have frequent night wakings. Here is specifically what they found with the differences between Primary insomnia and FM insomnia.


Objective: To Investigate the differential kind of disturbed sleep in patients with fibromyalgia (FM) versus patients reporting sleep Difficulties with primary insomnia (PI) and Who patients do not report disturbed sleep (pain-free controls).Materials and Methods: Patients (FM: n = 132; PI: n = 109; normals n = 52) Were or recruited for different studies. FM and PI patients Were preselected to meet the sleep disturbance criteria. Patients with sleep or circadian disorders Were excluded from all groups. Polysomnography Was Conducted at screening, During two consecutive nights. For this post hoc analysis of polysomnography, length and frequency (duration, number) of wake and sleep tips Were Analyzed, together with traditional sleep Measures; a "tip" = consecutive 30-second epochs of sleep wake gold. Data are mean ± SD.Results: FM patients and PI HAD Decreased total sleep time and slow-wave sleep (SWS) and Increased latency to persistent sleep (LPS) and wake time after sleep onset (WASO) versus controls (P <0 .05="" each="" for="" span=""> FM patients versus PI HAD more SWS (48.1 ± 32.4 vs. 27.2 ± 23.6 min; P <0 .0001="" 29.8="" 31.3="" 70.7="" and="" em="" lps="" min="" nbsp="" shorting="" vs.="">P
 = 0.0055), WASO purpose comparable (107.7 ± 32.8 vs. 108.6 ± 31.5 min). DESPITE comparable WASO, FM patients HAD shorting (4.64 ± 2.42 vs. 5.87 ± 3.15 min; P = 0.0016) more frequent wake goal ends versus PI patients (41.6 ± 16.7 vs. 35.7 ± 12.6, P = 0.0075). Sleep duration Was similar end for FM (9.32 ± 0.35 min) and PI patients (10.1 ± 0.37 min); Both populations HAD go short sleep duration end versus controls (15.7 ± 0.7 min; P <0 .0001="" both="" br="">Conclusions: Increased frequency of wake and sleep tips and wake Decreased end duration, together with LPS and Increased Decreased SWS, Suggests That Sleep in FM is caractérisé by year Inability to Maintain continuous sleep goal Greater sleep drive Compared with PI. Clinical Journal of Pain
The ideal goal then is not only getting us To sleep but to maintain continuous sleep. 
There is research to suggest that the issue lies in difficulties with deep sleep interference. "Alpha-delta sleep is the abnormal intrusion of alpha activity (8- to 13-Hz oscillations) into the delta activity (1- to 4-Hz oscillations) That olefins slow-wave sleep. Alpha-delta sleep is Especially prevalent in fibromyalgia patients, and there is evidence Suggesting que la Irregularities in the sleep of These patients May because the muscle tissue and bread That characterizes the disorder. We constructed a biophysically realistic mathematical model of alpha-delta sleep.Imaging studies in fibromyalgia patients Suggesting altered levels of activity in the thalamus has motivated thalamic model as the source of alpha activity."jn.physiology.org
Now, I hardly needed a study to tell me I have difficulty falling asleep and maintaining it. It has been a long term issue of mine since I was quite young. Not to mention pain being a factor as well. The main thing is that by researching it there can be new targets for medication. I had heard they researched a sleeping pill for people with FM. I have not heard anything since then, so maybe nothing came of it... but it was designed to keep us asleep. Maybe that is still on the go. Either way it is interesting to know primary insomnia is not quite the same as Fibromyalgia related insomnia. 
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Friday, July 22, 2016

More than my battle, but the battle is significant part of me #BlogBoost


We have to make the distinction that we are more than what we battle with. I am more than my pain. More than my migraines. More than my fibromyalgia. More than this battle. It is important to cognitively separate ourselves from our conditions. To know we have a life to fit into our illness. Choices to make that ensure we have a life in there. Living With our illness.

Yet, when I think about the fact we are more than our battle... I think that battle is a massive portion or our Daily Existence.

Not our Identity. Which is significantly more substantial. I am a so much more than my illnesses. My illnesses have, of course, changed me as I have adapted and reacted to the constant stressor in my life and compromised to enable myself to cope with the illness. Naturally changed me in many ways. But obviously I am a fully developed person that goes far beyond my illness.

But the battle is a massive portion of our Daily Existence and that is something that is pretty fundamental. I am constantly wading through pain of around 7-9 on the pain scale. That means my choices on what I do and how I do it in the day are limited and inhibited by that pain. So while I may say I am more than my battle the battle molds my day. Mold how I think, how I act, what I do, what I plan on doing and when I do things and certainly how I do things.

So people say at times, in different ways, don't let the pain choose your life for you. Don't be afraid to live your life. Don't not do things because of the pain. Live your life, because the pain will be there regardless. Fact is this; pain designed this game and we have to play by its rules in order to survive. Some of those rules? Pacing. Moderation. Don't exceed limitations. What happens when you don't play? More pain. So the battle is a constant game of trying to keep the pain from exploding into more pain. It is the rules. We know we are not in charge here.

We also know as long as we follow the rules we can live our lives... as gently as possible, within moderation and carefully pacing. We do not fear living. People who believe we fear our pain, like doctors often say, such that we fear living... don't grasp that we have to live differently. It isn't that we didn't want to go out with you, but we decided to do a different thing... and we can't do two things... not with pacing. We don't live in fear of the pain, we Are in pain. We are not lazy, we are doing exactly what we should be doing to not increase our pain. Just a pained lifestyle is all.

That is how I see the battle. As a specific lifestyle we are locked into. One that means we have to live slower than our fast paced society deems normal. One that demands we look at our limitations and not exceeding them. I am more than my battle... but I live By the rules of my battle, so as to maintain less flare ups of pain. And we have a lot of rules we add in there to help reduce our suffering. We add to the game. The lifestyle becomes ingrained in us, just as the battle is a permanent fixture. Bringing the pain and us trying to reduce or manage it as best we can. It is a significant part of our lives. Continuous and endless.

Nevertheless, we are more than what we battle with. We are also vastly changed by what we battle with. Pain experienced for a long period of time changes people. This battle is a brutal one. One we don't always want to survive. We are more than our battle And our battle made us more than we were.


Wednesday, July 20, 2016

Brainfog, when it isn't just about the pain #Blogboost





I have been struggling with work lately. And by lately I mean always. Always struggling to function through the pain. Always not quite doing it.

My psychologist said well I cannot compare apples to oranges. I cannot compare myself to people doing the same job perfectly healthy. Nor to myself when I was healthy-er. And it did occur to me that this job I am now doing wouldn't even be a challenge to me when I was younger and in less pain than now. But the pain now has eaten away at my cognitive capacity with the FM and the chronic daily migraines. Not enough space in the brain to focus on much other than tolerating the pain.

Here is the Thing.

The thing is I am permanently this person that is confused, befuddled and living in a pain haze. This is who I am. No matter the job. Good days and certainly, by far, on bad days.

And I don't like it. I don't want to be this person. This person frustrates the hell out of me. I just want to do my job... hell A job effectively and efficiently as possible. Hell I want to excel at what I put my mind to, as it was before the pain became such a living force. This person is plodding. This person's communication skills get rather tangled up. Perhaps why I love writing so much is that I don't feel the cognitive sting so much as I do in reality. The sharp snag to the working memory, the complete lack of short term memory and where the hell is that long term memory any way. I want to get more sleep, so I can shake of this infernal mental fatigue and this damn exhaustion. But I can't because I can't ever sleep decently and because it is a damn permanent state of affairs. Pain inhibits cognition and chronic pain therefore chronically. So I am stuck thinking through molasses forever.

So yes, I understand completely not to compare myself to people without chronic illnesses and pain.  Or even to myself in my lesser state of pain. Never a good idea. However I do rather trash myself because I cannot function the way I want to function. I am constantly limited and inhibited in my capacity. I am not content with the way I am functioning. I am aware of my capacity and very aware of this thick mental lag, fatigue and sludge in the way of it. Just like I am aware of the profound difference between the ability to function on a good pain day and a bad pain day. Well a good day, still not a great day. I think we are all aware of that wall of fatigue and pain in the way of our thinking. All the little errors, glitches and failure to communicates that happen every single day.

That is my frustration at this point. The fact that with chronic pain, migraines specifically, I seem so cognitively impaired all the time. With migraines that can vary neurologically as well. Sometimes it is straight up aphasia that impairs my capacity to communicate. Sometimes the sensory distortions make it difficult to focus on reality. Sometimes the confusional states make it difficult to comprehend things. Mostly though it is straight up trying to just function through pain, when pain is taking up all that brain capacity.

I'm not saying there isn't things we can do for things like brainfog and fibrofog. I wrote something up about fibrofog Here. What I am saying is it never seems like I get a break in this area no matter what I do. Likely because the pain hasn't given me a break. I have been reading a book on cognitive abilities and it recommends things like mindful meditation, exercise and brain games. None of which get rid of the pain that is triggering the issue in this case, but never hurts to keep the brain going strong when clearly it is having issues. For example, I already do mindful meditation for pain and if it can give me a cognitive boost that would indeed be a bonus, wouldn't it?

I really miss the clarity of thought that comes with not having a migraine. It has been years since that was the case. But I do remember the last day it occurred. I remember how clear my thinking was. How crisp. How quick. How accurate. Then the cloud sank back down.


Monday, July 18, 2016

How do you do it? #BlogBoost


How do you do it? They ask. And then say "I wouldn't be able to handle all that pain every day. A migraine every day?" Not counting the FM which they often do not mention because they don't know what they would feel like. But worst headache ever captures their attention.

And I say... "You get used to it." Because you do. You have a baseline pain all the time and it is your new normal. You develop Tolerable pain and Functional pain. And what to do with Intolerable pain and Non-functional pain. You get used to it. I say that though because it sounds better than 'I have no idea how I do it. I just do. Because I have to. And god damn do I wish I didn't have to.'

But the real answer is WE MUST. We were never given a choice in the matter. It was put upon us and we had to learn the hard way how to cope with the chronic pain  as best we could.

WE MUST because in order to live, move or do anything we have to do it with the pain. So we learn what to do with the pain. We make room for it.

When the pain gets to us and depression set in our brain changes to WE MUST NOT... endure this suffering.

That is is why we are always fighting for the surface, because if we stop for a moment, we will begin to drown. Chronic pain is heavy and it is drag you down and we will sink.

It seems to me after you 'must not' you don't fight for the surface as hard anymore. You know the allure of not fighting anymore. A part of you doesn't strive as hard because the pain always wins. Or has less survival instincts left after sinking for awhile. It is like your brain, instead of WE MUST is WE MIGHT... because it crossed a line into not wanting to exist and once it did, it is a possibility that is always there in theory. You must live with the pain and cope, or you might, you might not.

We want to survive, so we must. We want to life, so we must. We must cope with the pain the bast we can. Or we push through the pain. We exceed our limits and make it worse. Because we feel we have to work as hard as everyone, do as much as everyone.... with the pain of course. Our job though isn't to push though the pain or increase the pain. It is know we have pain that isn't going anywhere we Must deal with it, cope with it, pace ourselves and stay within limitations.

Chronic pain is that sort of survival battle sometimes. We have to deal with it, because there simply is no other option. But... it then occurs to us sometimes there is an option... to just not exist and have pain at all. Then we have to battle those thoughts as well as the pain. Sink or swim. Sink or swim. We are always battling for the surface and never making it. Always close to sinking, but never drowning... hopefully.
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Sunday, July 17, 2016

Guest Post: 5 Tips for Explaining Migraine Pain to Others






“You look fine.” For some reason, this seems to be a typical response to telling a friend or a loved one that you have a horrible migraine. Suddenly you must justify your condition.

I think all chronic migraine sufferers have experienced insensitive and sometimes outrageous comments made by those around us. A migraine can be making you feel like your head is about to split open, but all of its strength and vengeance is unfortunately invisible to those around us. 


Those who do not understand what it is to live with migraine pain — or live in fear of the next attack — simply see our outward appearance and assume we must be “fine.”

It is frustrating and hurtful when someone you confide in does not understand your struggle and pain, and some may even question if you are in fact suffering at all. For some reason, people assume whatever they don’t understand is not worthy of their empathy.

I have found it helpful to try and communicate very carefully when talking about my migraines. How you explain your migraine to someone can actually help them understand your condition better, and allow them to imagine what it would be like if they themselves were dealing with the same condition.


Walk a Mile in My Shoes

Here are five key points you should make when explaining your migraines to someone.


1. Migraines Are Not Just Headaches

Comparing a headache to a migraine is like comparing a soft summer rain to a hurricane. Unless you have felt this level of pain, you cannot make a fair judgement.

Migraines are a neurological condition and are thought to involve abnormal functioning of the brain's blood vessels. Approximately 37 million Americans suffer with migraines, and women represent 70 percent of those diagnosed.

When explaining, I say, “Imagine a pain where you seriously wonder if something is happening within your head that will kill you. It’s like something is exploding. You can’t see well. Light makes it worse. You are in so much pain you can’t hold down food.”

Often, understanding begins to blossom in people when I actually describe what the pain fundamentally does to me.


2. You Can't Tell by Looking at Me

FYI, you can’t “see” someone’s pain. I look fine because I push on through my day most of the time and continue with as much of my life as I can.

I say, “If this struck you several days per month, wouldn’t you try and keep living your life too? It doesn’t mean I am not in agony. It means I am trying to keep going. If sometimes I’m not much fun to be with, remember I’m still me — stuck inside this body that is going through incredible pain.”


3. Migraine Attacks Are Variable and Unpredictable

Just because I was at that barbeque yesterday and feeling fine, does not mean that I didn’t wake up today with that dreaded veil of pressure and ever-increasing pain in my head.

Migraines come on for various reasons (stress, hormonal changes throughout the month, diet, drinking a glass of wine, etc.) so there is no indicator one day that the next will also be pain-free. I must live my life day-by-day, never knowing when I will be under attack.


4. Though There Are Treatments, Nothing Cures Migraines

So far, at least in my experience, decreasing the number of migraine attacks per month and sometimes limiting the severity is the best I can hope for.

There are several medications (like Excedrin migraine, Aspirin, Imitrex, Aleve and even Botox) to treat migraine, but there is no cure as of yet.


5. I Need Your Compassion

I say, “Imagine unbearable pain that can strike any time. What kind of compassion would you need from your friends and family? I don’t want anyone’s pity, but I long for compassion.”

Everyone appreciates having someone sympathize when they are in excruciating pain, but nobody claims to have a migraine to get sympathy.

In fact, anyone who would suggest that probably lacks the compassion required to provide sympathy. What I seek is understanding and compassion.

If you are surrounded by people who don’t understand your migraines, you are not alone. People simply do not think about what they are implying or how their words can hurt or even insult you.


The more you can generate awareness about this chronic condition, the more compassion and kindness may be offered in place of disturbing remarks and disregard for migraine pain and suffering.



Barbara Leech is a mother of four who has battled lupus for more than 30 years. Also diagnosed with migraine, fibromyalgia and Hashimoto’s thyroiditis, she considers herself a survivor of all things: chronic illness, divorce, starting over. She is passionate about family, faith and small victories. You can find more of her writing on NewLifeOutlook.

 Migraine Community

Friday, July 15, 2016

Poem: Functional #BlogBoost


Functional


Functional
Put on a mask.
Smile.
Blend in.
But different under the skin.
Writhing, seething, beast of pain within.
Adjust the mask.
Smile.
Functional.


I am trying very hard to be functional lately. And it isn't working well. But I hide all that pain beneath a well crafted mask. Doesn't change the fact functioning is very difficult to manage with pain. 

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Thursday, July 14, 2016

10 things I would tell the newly diagnosed about what they will face #BlogBoost





I wish I had been prepared for the impact or what was going to happen in my life from chronic illness. Realistically. I had a firm belief back them I could limit the impact by choosing a specific job and as long as I was engaged mentally, it didn't matter I was hindered physically. I didn't think of the radius pain has. It never occurred it would get worse, complex and the impact would affect all of me and all of my life. If I wish for one thing I could have known that first day of diagnosis... is the impact it was going to have.


  1. Your social life will change: You will go out less often. You will lose friends. Have less friends and likely gain a lot of online friends. There a vibrant online communities for the chronically ill. We reach out to them to feel less isolated and to calm and fears we have about our illness. To share our concerns, fears and coping. However, in the real world we may not have much energy reserves to go out and do activities often. We may cancel plans when we feel worse we expected to. Some people will drift away because of this. Those that remain tend to be the best influences on us for support.
  2. The 'cure'talk: People will suggest remedies, cures, treatments, diets and medications they heard on the news, online, from Facebook or from their Uncle Frank who swears by it. You will tire of it. Maybe you will even try some of the recommendations like that chiropractor of your work associate or the acupuncturist your hairdresser mentioned. You are new to this chronic illness game and there are so many things to try. But when you have, the recommendations? Will get tiresome. Even though you also know they all come from a good place. When it comes from a good place it is hard to say anything about it, even when it is the 10th meme you have seen on the same thing, that year anyway. People just want to help. They see something that maybe you have not and they send it to you, well intentions. Nevertheless you will see a lot.
  3. Lifestyle: People will comment on your lifestyle and the changes you should make to it because it might help with your health. Exercise is mentioned often by people and doctors. As is losing weight. And dieting, often contrary diets as well. While You on the other-hand will actually be trying a whole lot of changes from exercise to mediation, to chiropractors and physio. One thing I learned early on was there was little help with a treatment plan. I had to go out there and try to find things that might help me myself. All of these are essentially out of pocket, with a minor amount sometimes covered.
  4. Treatment: In the beginning you will likely believe medications will do something profound and help a great deal. When this belief is broken you will learn medications are a long process of trial and error. Of weighing the side effects with the benefits. Finding the right medications being the first aspect of treatment however.
  5. Research: Right of the get go you will believe your doctor. His recommendations and medications. Soon though you will begin to pick things up, do some research and join some support groups. You'll begin to gain some knowledge on your disease and options. Couple years into the chronic illness lifestyle and you will know more than your doctor about your specific disease. It just happens. As an informed patient you will be able to know if the treatment you are getting is sufficient or if there are better options.
  6. Work will suffer: It becomes more difficult to find a job. And a struggle to figure out what and when to disclose your illness. It can be difficult to maintain full-time work. We often struggle with it and have to seek some sort of accommodation; flex work, working from home, less hours, part-time. work accommodations for our work-space. Trust me this is a challenging one to figure out and adjust to.
  7. Stigma: With invisible disabilities you will encounter people who will doubt you. They won't believe you are as sick as you claim. Or that you even are. They will claim you are fine one day, sick another and it makes no sense. Or that you are complaining, lazy, just depressed (making you less likely to discuss comorbid depression). You can have stigma in the workplace. In the medical field, where they minimize your pain due to gender or age. In your family. In society as a whole. 
  8. Relationships: relationships will be strained and stressed with this extra stressor. Not all partners can handle the extra stresses of a partner who is chronically ill. Some survive but they have to communicate about the stresses to deal with them. The partner, feels more stress as well. Our illness affects those around us. And we have to acknowledge the impact and support we get. While other people, who are single, sometimes fear getting into a relationship as they feel they would 'ruin' someone's life and they fear disclosing their health. Never giving the person their choice of who to care for. 
  9. Pacing: the faster you learn you need to pace your activities during the day and week the happier you will be. We learn we do too much and we feel much worse, then have to recover. So we learn we have to pace. 
  10. Limitations: Likewise we have to learn our limitations. Jobs we cannot work (Shift work or repetitive lifting, heavy lifting). Things we cannot do (cleaning the house in one day). And recognize in a day when we hit a limit, knowing when to stop. Knowing on some days due to pain or fatigue our limit is less than other days. 

Yet that is all part of the process. The friends we have are the ones a person wants on their side. A spouse that stays is one that understands illness comes to us all. We figure out a work one way or the other, something that works for us in our situations. We adapt and we change. Life changes but we cope to adjust to those changes.
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Wednesday, July 13, 2016

But you don't look sick #Blogboost

I would like to recommend a great chronic illness support site called But you don't look sick. In particular this is where the Spoon Theory was created by Chistine Miserandino. Well worth exploring the site for articles to read. Then there is always the Facebook Page to check out as well.

The Spoon Theory is a way to explain dealing with a chronic illness to others.



It is in the cost of spoons. So I got out of bed a got dressed and I used 1 spoon, today. I did some light chores and used 4 spoons. Or I went to work and used 10 spoons. I may have started with 8 spoons, or 6, or 10... so I may be overly exhausted or may have just reached my limit or stayed within my limits. Point is we have to watch our spoons. A regular person will start with 30 spoons or hell I have no idea but they do not have the same limits. We have to be careful of the choices we make based on the energy and pain and fatigue we have that day. Exceeding our limits means less spoons for the next day.
If you follow this theory you are a Spoonie and you will see posts and memes everywhere about spoonies. Great humor.
I did a spoonie awareness campaign where you would take a spoon doing activities that with helped with chronic illness or used your spoons. Here is me grocery shopping which uses a lot of spoons. A lot, a lot.

I personally like the phrase, "But you don't look sick" because I get that often. Which is odd, because I often look 'tired' and that 'look' is really generally fatigue and pain. But nevertheless, people say I am looking good. In fact when I lost weight I was told I was 'looking so much better' and I must be 'feeling better.' It frankly irked me because the weight loss was because of medication not healthy eating or exercise. And recently because of chronic illness I lost more weight. Appearances have little to do with on the inside. 
I have posted memes on this before:



I'll have to come up with some spoonie ones now that I think about it since I enjoy the concept a great deal. 

Anyway, this is a website I found some time ago when I was chronically ill and it gave my a lot of support. I even wrote a few guest articles for the site back in the day. This one amuses me New Year’s Resolutions: Why They Are so Tricky because I was apparently trying to quit smoking way back then... this is about a decade ago and am Still trying to this day. So there is that issue. Anyway, you can also write a guest post on select topics if you desire as well. I cope a lot through writing so it has been useful for me at the time. 
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