June blog challenge for Migraine Awareness

 I just realized tomorrow is June 1st... that sure got here fast! I seem to have misplaced parts of last week due to a three day acute migraine... if someone finds those days feel free to pass them along. Anyway it is time for Migraine and Headache Awareness month... which means a blogathon to raise awareness! I really enjoy participating in these things and hearing about other peoples experiences. They really do raise awareness as well... with social media these days so many ways to pass along a message and share information.

I think the more awareness we can bring to chronic migraines the better. There is a massive stigma with them. We all have likely experienced it in some form in some part of society. The migraines have a massive toll on our lives as well. I have been known to be pretty blunt about that from time to time. I insist upon it sometimes. It has a massive toll. I want to explain that as clearly as I can. Not to be overtly negative but to express the depth of the experience the best I can... I try just as hard as the next person to conquer my internal demons that insist this pain is pure madness. So yes demons come out to play when I'm in acute pain for days and have this strong inability to sleep. And I will try all methods. I don't care what is recommended.... well, by serious professionals that is, not by flakes and 'cure' salespeople. If it has the chance of reducing just my internal perception of suffering... I'm game. I'll incorporate any tools into my coping framework if they work because I know for a fact the one I have really wasn't working with the amount of untreated pain I have. And I want to want to survive. But I sure would like that pain thing treated too. The struggle we have is a constant battle that people do not comprehend... because it is an invisible disability. The see the tip of the iceberg. The facade we wear to function. They make absurd recommendations because they have no concept of all the things we do to just get by as we do. So we share our experiences with each other but hopefully it sheds some light out there on just how brutal this disease is and other headache disorders are as well.



Please see the AHMA site for all details and information. Here is a preview of the months prompts:

  1. Phantom of the Opera: What do you hide behind your Migraine/Headache Disorders mask? What do you let people see?
  2. X-Men: Migraine & Headache Disorders Super Heroes: Who in your life goes above the call of duty and how?
  3. The Hunger Games: "Happy Hunger Games, and may the odds be ever in your favor": What healthy habits have you adopted to put the odds of better Migraine & Headache Disorders management in your favor?
  4. Finding Nemo: "Just keep swimming": How do you keep going in life when Migraine or another Headache Disorder deals you a difficult set back?
  5. Carousel: You'll Never Walk Alone.
  6. Premonition: Where would you like to see treatment options for Migraine & Headache Disorders go in the future?
  7. Pretty Woman: What do you do to look good when you feel like crap?
  8. Little Shop of Horrors: "Feed Me, Seymour": What comfort foods do your reach for when you have a Migraine or Headache attack?
  9. Mama Mia: Money Money Money: How does living with Migraine or another Headache Disorder impact your financial situation?
  10. Ocean's Eleven: Who's part of your Migraine/Headache Disorders care team? What essential roles still need to be filled?
  11. Twilight: What power of a vampire or werewolf would you like to have to cope with Migraine pr another Headache Disorder?
  12. The Box: You are the experiment: What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat?
  13. Sophie's Choice: What are the toughest treatment choices you face when balancing Migraine/Headache Disorders with other health conditions?
  14. Letters to Julia: Write a thank you note to someone who has helped you.
  15. Harry Potter:  Write & name a spell for getting rid of a Migraine/Headache attack.
  16. Riverdance: Have you found a way to work exercise or movement into your life with Migraine/Headache Disorder? What is it?
  17. Mission Impossible
  18. Die Hard: "Now I have a machine gun. Ho, ho, ho": Devise a make-believe weapon to blast Migraine/Headache Disorders out of your life.
  19. Austin Powers: International Man of Mystery: Migraines & Mojo: How has living with Migraine/Headache Disorders affected your sex life?
  20. Star Trek: Generations: What role do Migraine/Headache Disorders play in your family history? Do others live with it? Does this make a difference in how you talk about it?
  21. Oblivion.
  22. Walk the Line: How do you balance the need to avoid your Migraine/Headache Disorder triggers  with the equally powerful need to enjoy the things that give your life meaning?
  23. Bruce Almighty: How does spirituality and/or religion help you cope?
  24. Risky Business: Each time you try a new treatment you take a risk. How do you initiate a discussion with your doctor so you can make an educated decision about trying it as a team?
  25. Lincoln: Who's your favorite historical figure who lived with Migraine or another Headache Disorder?
  26. Men in Black: Migraine Neuralizer: How do you cope with the way Migraine/Headache Disorders can impact our memories?
  27. Anger Management: Goosefrabba: How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorders?
  28. Saturday Night Live: How does humor help you cope?
  29. Misfits. (If you live with Chronic Migraine, incorporate it into today's post.)
  30. 2001: A Space Odyssey: "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do.": Write a letter to a fictional Headache Disorders patient encouraging that person to be kind to him or herself. Use the ways you're too hard on yourself as inspiration.
ALTERNATE PROMPTS
If some of those prompts don't inspire you, feel free to use one of these alternate prompts:
  • Evita: Don't Cry for Me Argentina: We don't want to be pitied, but we aren't always open about telling people how they can help us. How would you like to be helped?
  • Definitely, Maybe.
  • Steel Magnolias: "That which does not kill us makes us stronger": In what ways are you stronger as a result of living with Migraine or another Headache Disorder?
  • Temple Grandin: "A school bell sounded like a dentist drill going through my ears": Many of us have wondered to ourselves, must you live so loudly? How do you cope with phonophobia (noise sensitivity)
  • Eat Pray Love: Share your favorite Migraine trigger-free recipe.

And Twitter Hashtags...

MHAM HASHTAGS
Please use these hashtags for promoting Migraine & Headache Awareness Month (MHAM) in social media:
  • #MHAM
  • #MHAM13
  • #MHAMBC (Blog Challenge)
  • #MHAMTC (Twitter Challenge)
  • #MHAMPC (Photo a Day Challenge)
Other more general hashtags that promote Migraine & Headache Disorders awareness in social media:
  • #Migraine
  • #ChronicMigraine
  • #ClusterHeadaches
  • #Headache
  • #NDPH

Migraine stigma

Weather trigger... guess that was the answer to that migraine. Mystery solved.

It's raining, its pouring... pain, pain go away come back some other day. Or not. Not saying you have to come back some other day. It was actually quite the thunder boomer... heavy rain, then hail, then rain, then hail... some good thunder and lightning. And two of the cats of course were in the basement for hours. For one of those sudden spring storms it lasted longer than I thought it would actually, but those are the worst though... if it is rainy all day, not an issue. Rather like cloudy, rainy days. I actually love storms as well... just my brain isn't fond of them.

I managed to get rid of a three day migraine with some heavily medicated sleep so I woke up feeling pretty good. The first indication I was getting a migraine at all was just the sudden bout of vertigo.

Wish i could have caught a picture of the downpour of the nutty hail, but I was resting my brain before the Migraine Misfits Chat... or I would have been real brainless by then! The vertigo and that first pressure of pain did give me some good reaction time and the pain isn't nearly as intense as yesterday.




How do you think about your pain?

I don't know about you but I am currently thinking a lot about pain right now... maybe what inspired this post since it is literally on my mind.

What we think about the nature of pain, our pain, how it affected our past, our present and our future... is a very important schema. We often think about it as 'coping' but it is far more than that isn't it? It is our very outlook on things. It is how we perceive our existence. How we conceive of our future. How we believe in a treatment plan. How much effort we put into the little coping strategies we might conceive of or even how actively we look for them. It can vastly change by our moods. By our stress level. By our circumstances. By our beliefs about pain itself. By lack of success in our treatment history. By fear and anxiety for our future. And sometimes just answering these questions can give us a good idea of what we really think and believe about pain and our illness. I did this very sort of thing when I was younger, about 19 and coping with being on my own coping with the chronic pain of FM... and it revealed to me a great many things about how i thought about things and helped me adapt in new ways. The method I used was cognitive therapy (Chronic pain and cognitive therapy: taking care of your emotional health) and some people find minfulness techniques helpful... but similar process really. And I'm trying to do the same thing now that I'm trying to deal with new circumstances and additional chronic pain. It is sort of a reality check that we all need to do once in a while because we all have beliefs about pain and our illness.

Somewhere along the line when the pain gets intense it can distort those beliefs I find... or at least that is what I found recently, and when I was younger as well. When I was younger it was simply because I was a sarcastic, cynical person and when I encountered a higher stress situation and went beyond my limits that personality didn't work so well on the whole thinking about my illness, whereas as an adult I had fine coping strategies in place but that failed to meet the increase in pain levels while working full time and, yeah, the pain just distorted how I thought about everything... the schema changed.

Like other schemas, a pain schema works automatically


"Much of the time, this can be helpful. For example, you may automatically recognize the set of feelings that signal that a migraine is beginning; you can take your migraine medication right away to prevent the head – ache from beginning. Your pain schema may help you to “just know” how much you can walk before your back starts to hurt too much. Or, your pain schema may help you to provide a simple explanation of your pain condition to others.

How Pain Schemas 

HARM 

A pain schema can have negative effects. For example, if you hold the GENERAL BELIEF that you can’t exercise because of your pain, you may turn down invitations involving SPECIFIC physical activities that you might be able to do.

Your pain schema may also be outdated or even inaccurate. For example, your schema may contain old and inaccurate information about the cause or treatment of your pain. Most importantly, aspects of your pain schema may make coping with pain more difficult. For example, if you have come to believe that having chronic pain means that you are useless, then you will be less likely to try to be useful. If you believe that the only treatment for chronic pain is pain medication, then you will be less likely to try other options, such as physical therapy, meditation or pacing yourself. If your schema suggests that other people can’t understand your pain, you may isolate yourself and stop giving people the chance to get to know you."http://www.painpathways.org/2012/12/31/living-with-pain/

 

 

I sure failed to break that migraine... it darn well broke me

When you get locked in an acute migraine streak you pull out all your bag of tricks. And sometimes you win and you break free and think 'Heck I should remember that for next time'. But then your brain goes 'ha ha sucker that isn't going to fly next time... I'm onto that game plan.'

The story always starts off the same for me of course. Smacked up side the head with an acute migraine and I take a triptan. The story doesn't end because the triptan fails. Either it fails entirely or it only works somewhat and the migraine kicks into full gear later on that evening... usually just in time for me to Not sleep.

That is the twist to the story right there. Not always of course but sometimes right off the get go that acute migraine creates a Painsomnia situation. But I already took my triptan. I can't take it again. I'm well aware some people do, but due to the side effects of triptans for me I can't. I can't take my rescue medication because that is generally reserved for days I Don't take the triptan and even then not often. So right then it is a tricky spot. Sometimes this is day two of a migraine streak or day three and I'm heading into status migraine mode and the painsomnia can be a real problem. Sometimes the way I resolve a migraine is by taking my sleeping pill, which by itself does nothing when the pain is too high, and combine it with a medication I was given that has a side effect of drowsiness... sort of a combo effect. It does the job. Makes me a complete zombie the next day... but Sometimes I wake up and the migraine is gone. I may get another on my usual timeline, but I broke the constant migraine streak. It doesn't always work but, yeah, sometimes Sleep, by literally knocking myself out, will kill the migraine. I can't do it often because I don't think it would be as effective if I did and also literally I can't function the next day i'm so groggy due to the side effects of that second extremely off-label medication that I really question being on in the first place.

So painsomnia has to be pretty extreme for the Sleep attack, so if painsomia hits that first night... well, I'm screwed. Which it did, and I was screwed. The migraine the next day peaked at a all time high somewhere beyond acute. I'm going to have to go with a 9 on the pain scale here by the end of the night due to the fact I seem to have forgotten to do things like set my alarm for my appointment the next day, that I had an appointment the next day and the fact I was not functioning at all. I took a painkiller... which currently is T3s for me... which is like putting a band-aide on a head wound. You know when the pain is that high you are not only not going to sleep but it is going to be a long stretch of agony. So what can you do, right? Can't take a triptan... did that the day before. Can't take it two days in a row without that nasty side effect business.

So mind-blowing pain... used option A)triptan, then used option B) painkiller... that is my options medication wise. Except there is option C) toradol injections. Now I hate toradol injections. I think they are a great option for people, because who wants to go to the ER and wait four hours for one when you can just give yourself one. But back in the day I was on toradol pills and I suppose because of the IBS-D or whatever is up with my digestive system... it ripped a hole through my intestines. So I was put on Arthrotec... which ripped a hole through my intestines gently. And the result wasn't pretty and I can't touch anti-inflammatories even in the OTC variety anymore... or aspirin. Now toradol injections go via the butt cheek... or thigh... but generally the butt... and bypass the stomach, so one would think I wouldn't have a problem with them... but I do. I was told that the aspirin portion still gets in there through the stomach lining or what have you. And whatever the method it causes a great deal of very sharp pain. Like being stabbed repeatedly. Not like cramping, twisting pain as I would get taking it in pill form. Just this sharp stabbing pain. But sometimes it works. So I drink lots of water. I make sure I eat something. I try to protect my digestive system and I give it a go. And I always regret it... but sometimes it works.

I regret taking option C today. Lots of stabbing abdominal pain. And... still have an acute migraine and that pisses me off.. if it had worked then the abdominal pain would at least be worth it. And I most certainly missed the appointment I totally forgot I had because the entire day was hazed by pain. But it is now down to an 8, so that's something. And I woke up like someone twisted my neck in half so the pain is really working its way in. I slathered a bunch on menthol cream on the neck. Put some ice on it and then my head. Because... out of options. I'm thinking it is time for that Sleep attack method and maybe I'll knock it out that way.

Point is... this is chronic migraines. This right here. Triptans don't always work and you can't take them often. If you have a painkiller of any sort it generally isn't that effective and can't be used often. If you have a third alternative... then you are damn lucky, took me over ten years to get that third alternative and by then... it isn't even one I can use without some nasty side effects making it an alternative I would really never choose unless the pain is extreme but sometimes it works so I do it anyway. Most of the time I would not even go through A B and C, but when one migraine is that acute and long lasting you try and break the cycle. Usually you try not to use medication, which seems odd, but that is the way it goes. Don't over use medication. Yet, all those untreated migraines lead to more migraines. So you lose either way really. And that is why you have creams, ice, sleep and darkness and whatever else you can think off to hopefully reduce the pain. And avoid triggers.

Anyway... I have clearly lost this battle. Hopefully some sleep will do the trick. Otherwise I will just be riding out this pain. Or... trying option A again. As long as there is a day in-between I can use a triptan again... but I tend not to for the same migraine because it seems pointless. But I might try it as a last alternative.

Trying to make things to drink...Is there such a thing as lemon posioning? Guess I'll find out.

So in my quest to find alternatives to decaffeinated diet coke to drink that do not have aspartame in them and also no sugar... I am looking to make things with stevia. Now the reason I avoid sugar is simply because it makes me ill and extremely nauseous. It has been really hard to find things to drink as an alternative. I end up going with tart things most of the time. But I really like the taste of diet coke so I seriously need alternatives. But while I like the concept of smoothies... I'm not going to be making smoothies all day. I'm just not. And, hell, I'm not even going to be buying all the ingredients to make smoothies to even satisfy my Thirst. So I need quick easy alternatives. And I have been hunting easy ones down. The two easiest seem to be lemonade and Ice Tea. Or flavored water... but haven't tried those yet.

So this is the sugar substitute I have chosen. I read somewhere that some stevia products can have a bitter metallic aftertaste depending on how they are processed from the plant... as in what part of the plant and whether they sort of reduce it. And I'm all good with this since actually I think diet coke has a bitter metallic aftertaste and likely why I like it... I gag on the taste of regular pop (can I have some sugar with my sugar, please? Bleh.) I have no clue if it has all these benefits... especially if the product is one that has taken just the 'sweet' parts of the plant out, because maybe the benefits come from the rest of the plant... we sure do know how to ruin a good thing after all. However, I am told... better than aspartame and splenda so I'll give it a go.

So my mom taught me how to make lemonade. And honestly I had no idea it was that easy to make.

1) one lemon... squeezed the crap out of.
2) one bottle of water... for me not all of it, but I just drink the remainder. Just add to taste really and I like mine strong. (obviously you can use tap water I just don't because I don't like the taste and I avoid it due to having hypothyroidism and avoiding too much fluoride.)
3) add sugar, or in my case stevia, one wee little packet... which is the equivalent to two teaspoons of sugar.

And Yum.

Then I Googled how to make Ice tea which by the way there are more than one so I just chose one and I think next time I will go stronger.

1) boil 4 cups of water with 4 tea bags (decaffeinated Earl Grey for me) and steep for max 5 min
2) add for 4 cups of water with 1 cup of sugar... now this seemed an insane amount of sugar to me. Seriously. So I went with a half a cup and started filling it with stevia, I got to maybe a quarter of that and went 'that seems like an awful lot' and used that. So... I guess it is entirely up to the person. Seemed fine to me.
3) I squeezed half a lemon in there as well because I like lemon in my tea.
4) add the tea mix to the water and Viola Ice tea once you cool it down anyway.

I think I will go six cups of tea and two cups of water next time though. Anyway, tastes sweet enough to me and anyone could add sugar after anyway. I'll have to play around with methods and flavors I guess.

I look impressed with myself. eh? Well... here is to peeing all day!


Anyway both of these are easy to make and Not sweet. Lot of lemons though. Maybe lemon overdose. But lemons are good for ya anyway, right? Any decreasing my aspartame which is also good.

Migraines and suicide

Depression Part Two by Hyperboleandahalf This is a funny but very accurate description of what depression is like.I had a horrible sense of numbness after I tried to commit suicide because oddly enough after the suicide attempt I got depressed. I say that and people don't get it. What? Clearly you must have been depressed before. Isn't suicide all about depression? But suicide can be about pain and not depression. Or a form of depression linked to pain levels I suppose. When there is a great deal of chronic pain, aggravated by circumstances that enhance it so you can't even just Be in pain, you must suffer the intense rawness of it and focus, and work and function. Horrific torment.
This is an important issue for me clearly... given I did attempt suicide and given it is a hard topic for people to understand or talk about. However, I think it is vital because clearly while I was struggling to survive and desperate with pain others are as well. And the suicide risk with chronic migraines is quite high. it is a topic that should be discussed.

Migraine, Chronic Back Pain Tied to Higher Suicide Risk

"Although undoubtedly psychiatric factors are important, there might be aspects of the pain that in and of themselves increase a person's risk," Ilgen said. "There might be something about someone with significant pain that puts them at increased risk."

The wide-ranging study, published online May 22 in the journal JAMA Psychiatry, involved more than 4.8 million people who received care from the U.S. Veterans Health Administration during fiscal year 2005. Researchers identified those suffering from chronic pain and tracked them for the next three years to see if any died from suicide.

The research team then looked for associations between suicide death -- the 10th most common cause of death in the United States -- and clinical diagnoses of chronic pain conditions, such as arthritis, back pain, migraines, neuropathy, headaches or tension headaches, fibromyalgia and psychogenic pain.

They found that all pain conditions except arthritis and neuropathy were associated with elevated suicide risk. But when they took into account the mental-health problems that chronic pain patients also had, the associations reduced for all but three types of chronic pain: back pain, migraines and psychogenic pain, which stems from psychological factors.

Dr. Elspeth Cameron Ritchie, a retired Army colonel and psychiatrist living in Washington, D.C., said the study clearly reinforces the anecdotal link between pain and suicide.
"It makes sense that pain is a risk factor for suicide," she said. "Often, suicide has several different things going on, but pain can be the straw that breaks the camel's back in terms of a person's decision not to go on."

Therapists performing a suicide-risk evaluation should consider adding a question regarding pain to the standard questions aimed at suicidal thoughts and planning, she said.
"It's not a standard question: 'Are you in pain?'" Ritchie said. "I would ask, 'Are you in pain?,' or 'Is pain an issue for you?'"

Psychogenic pain increased people's risk of suicide the most, followed by migraines and back pain. Psychogenic pain is chronic pain caused or exacerbated by mental or emotional problems, and Ilgen said it is a rare and not well understood condition.
"We think that's not so much about psychogenic pain per se, but the fact that the pain itself is poorly understood and may be poorly managed," Ilgen said. "There's not a clear treatment plan for that type of pain. It's likely that patients with this type of pain may be frustrated with their care and more hopeless and more at risk for suicide."

Hopelessness also could play a part in the elevated risk of suicide for migraine and chronic back pain sufferers -- two common problems in the United States. Back pain, for instance, is the second most common pain complaint among Veterans Health Administration patients, behind only arthritis.
"Patients with these pain conditions also may be more likely to feel hopeless and to have impairments in occupational or social functioning that could lead more directly to suicidal thoughts and behaviors," according to the study.

"Negative expectations about one's ability to effectively manage or treat pain could lead to suicidal ideation, and these effects might be greatest for certain conditions, such as psychogenic pain, that do not have clear or effective treatments and may be stigmatized," the researchers said.



-- And that is how pain leads to suicide. I wasn't depressed per sa. I was in a lot of pain working full time. Lots of frustrating. Lots of frantic pain. Lots of desperation with the pain. Then bouts of depression with status migraines because of the longer lasting acute nature of the pain and the inevitable acute sleep deprivation involved. Mood swings really revolving around pain levels. Eventually... the perfect storm. Which ironically leads me back to Depression Part Two by Hyperboleandahalf because I did survive and one would think my doctor would have thought that might have been a sign I had a pain problem that should have been dealt with or that maybe I could not function in the work place with such pain... since neither of those statements is true and I returned to full time work I sort of fell into this place beyond hopelessness, this sort of numb state of existence where I felt apparently my role was to suffer, that is what my doc wanted, what my employer wanted, what society wanted and I was expected to just endure it because suicide was a no-no. I existed there for about a year. Still just trying to survive the pain but just numb emotionally about it all because I felt their would be no end to the pain and I must simply figure out how to survive it and pretend I was okay with that. With this goal just to survive the pain day by day because it was important to others that I do so.

Until that frantic desperation started kicking in again. And I realized... how long am I going to survive like this? And I had this anxiety about my ability to cope in the long term... would not even allow myself to think about the future because it would make me anxious or depressed. And I knew what had not been depression certainly was now. A depression linked to the pain, the migraines and sleep deprivation but depression nevertheless, and now anxiety as well. Which is why I chose to see a psychologist because I didn't know how long it would be before I decided this battle wasn't worth it again. I could no longer trust myself to want to survive this existence and I had no way to make the pain less severe. Work is such a torment when it comes to chronic migraines and employers have a way of making things exceptionally worse rather than better. Existing in this survival mode gets you through the day but you never make progress, you are too tired, too strained from the pain to do anything but survive so eventually there will come a time when your employer will be particularly nasty, the pain will be particularly acute and you will be particularly sleep deprived... perfect storm. I wanted the tools to survive that storm when it hit again.

I never want to be in that place again. However, getting to that place is done by inches. You have a job. You try to do it well. It is impossible not to miss days. This does not go over well. So you try to push through the pain. Your body disagrees with this method vehemently. This is emotionally distressing. You miss more work due to aggravating everything by pushing beyond your limits. Your employer applies more stress. You try to compromise. They turn those down. You plead with your doctor for some treatment. He either tries something new and you deal with the side effects while at work which inevitably makes things worse or he puts you on leave which inevitably makes your employer more irate. And this repeats over time while you try numerous things and the situation becomes more tense and you realize it isn't working for anyone and there is no solution available for anyone. Your ability to find resolutions, cope with the mental and emotional suffering is compromised by the pain levels and sleep deprivation... so you just try to hold on. Hold on until the next drug. Hold on until the next neuro appointment. This was my existence for a very long time. A hazy time as well... just hazed by the pain. A repetitive cycle that occasionally I would stop and realize it was so damned hopeless and then just stop thinking about it.

The fact I am able to somewhat cope with the pain levels better now is solely because I am not working. There is no longer that frantic edge of desperation to it. There is just as many migraines. Just as much pain intensity. Just as much sleep issues... but I can sleep in and my cycle is erratic. I can do things like exercise because all my reserves are not consumed with work and survival. Although this is a difficult task in-itself, but I can do it. I am free to try other things. I am able to reflect on how significant a pain problem work was. I have no idea how to resolve this problem... but I have the temporary freedom to work on coping skills and other pain management techniques that you are incapable of doing when consumed by pain. I am able to see when you push past a certain point in 'functioning' with pain it has a huge toll in the long term.

When people had asked me 'how do you work every day with migraines?' and I used to say 'you get used to it' or on a bad day 'because I have no choice'... it is so understated. I don't even know how I did it. I don't even know how I survived as long as I did, but I know I didn't want to survive. I know there was nothing in my life but that survival. I know that in the end when people asked me this it brought tears to my eyes because the facade was breaking down and I wanted to say 'I can't. I have to. But I can't. I have no choice. But I can't.' The expectation is that we can. And it is there that we are doomed. With no pain management how long do people think someone will want to survive like that? Does it surprise me that chronic migraines have such a high suicide risk? Not at all. That it has to do with pain? Obviously it does.

And I recommend people see a good psychologist because it is impossible to cope with the madness of it on our own. It is impossible it seems to get a doctor to understand that their lack of treatment... while maybe it leads to no rebound headaches, but it also means many untreated migraines, more than treated often... is a Pain Problem. And this is an issue. And this issue is Not Resolved by antidepressants. Or at least not in every case. In fact, in my case, might have made things worse. Either way we are talking about acute unmanaged pain. And a psychologist, a good one, understands the relation between physical conditions, pain, lack of sleep, serotonin and depression... and whether anti-depressants are warranted or not. And other ways to help cope with all the issues. They open doors to other avenues where doctors just... seem to think we can just take the pain.

Was thinking about migraine scent triggers... and reminded me of my cat Charlie's problem

And it reminded of this recent adventure... it is a bit of a long story leading up to the awful scent trigger but it all starts with Charlie.

My youngest cat Charlie... look at those innocent eyes. They are tricking you.

Is a possessive little bugger. he loves snuggles. However, if I or my boyfriend dare to be cuddling Bobby, well then, he will not tolerate that if he sees it and will try to chase him away. He used to come into the bedroom around 2AM and sleep on the top of my pillow... sort of wrap around my head. Recently he began to sit on my back... or head and meow at me until I pet him because he knows I am awake, because I am always awake. And he will not be ignored. I try but he keeps meowing until he wakes up my boyfriend.

Just Charlie being Charlie, right? Well... Charlie also started recently peeing outside the litterbox. In front of us. Specifically in front of us. He would wait for our attention, find something around him and pee on it. What the hell right? I got him a bigger litterbox. I made sure it was clean all the time. Nope. Kept doing it. Not often. Not anywhere specific. Always in front of us. Like he was making a point. But one I could not figure out. So I brought him to the vet which he sure didn't appreciate but I thought maybe he had an infection. No. He did not. They speculated he has a psychological problem.

Uh huh. They said if it was in a particular spot it might have been territorial. If we had gotten another cat or we had moved he might have been upset. However, if it was just a new behaviour then it was a 'behavioral issue' that might have developed because of his interaction with the other cats or because he is having psychological problems.

The treatment you act? Why antidepressants. Amitriptyline specifically. I laughed at this... thinking well damn, I could save a buck and get my neuro to put me on it, cut the pill and dose up my cat. But I don't want to dose up my cat if the little bugger doesn't need it.

The alternative...pheromones. Kitty pheromones. When a cat rubs their head against you... they are rubbing all their soothing kitty pheromones on you. they are saying 'hey you are mine and I love you' or some such thing. And they make a air freshener packed full of these pheromones that you plug in that will calm your cat down. They use it in the vet office in the surgery room to keep the cats calm actually. It can be used when you move, for multi-cat households and for cats who have anxiety and for Charlie better known as 'problem cats' who pee where they should not. The one we got from the vet was this clear liquid and it smells like nothing... and it works like a charm. Chilled him right out and he has not peed since... at least not where he should not.

My boyfriend however was at the pet store... buying kitty crack... I mean nip and he found a cheaper version of the refills. Cool he thought. So he brings it home. And I thought cool. he plugs it in.

Two seconds later I say 'Ohmygod. Take it out. It Reeks. Why the hell would they give it a odour and why the hell would they make it so Strong and nasty. Please take it out now. It's seriously going to give me a migraine.'

He says 'It doesn't smell that bad' but takes it out.

Two minutes later. I have a migraine and he says 'God that does really smell bad'

So I can learn a few things from this a) I have a strong sense of smell and b) I know when it will trigger a migraine and c) that company is on crack if they think that smells good. I get why they did it... they made it a color so people could see if it was running out and scented so they could know when it ran out or maybe so they had an 'air freshener' as well... a toxic one. But, really should have done their research on that one. A cat would die if they caught a whiff of that. We had to open the windows.

Yoga for people in pain video.. nice sit down routine

I finally got around to trying this out. You can look at the whole webinar series Here. This last one goes through a series of poses one can do with chronic pain. None of them are standing. I tried it out and liked it a lot. I could do this and then do my modified routine of my usual fifteen minutes of poses I can do. Or maybe alternating days would be better. He discusses in the beginning how we must hit that perfect pain spot... not under the pain where it will not help, or over our limit where this could cause problems with pain hypersensitivity but right at that spot where our body starts screaming HERE BE PAIN. Which is where I usually go with yoga. And people laugh at me when I say yoga is painful... it damn well is if you have chronic pain. And why I think it is the ideal exercise... I am capable of it, to some extent and I don't go way past where my limit is... you can tell right where the pain is and hold the pose just right There. The key of course is to keep your breathing even and your body relaxed while you do so. There are some poses I hold that the pain makes my breathing go ragged every time... must just be where the pain is I guess. But while I like this I need to work on some standing poses because I need to work on my actually balance and strength. Nevertheless, I'm keeping this one on hand... especially for migraine days where I cannot do anything too extensive without mind-blowing pain in the head.
Yoga for People in Pain: Part 5 - Guidelines for Yoga Posture Practice from CIRPD on Vimeo.

Painsomnia is kicking my ass


I have a deep personal knowledge about insomnia. Nothing says sleep dysfunction like fibromyalgia does. However, there is just the hard cutting edge to insomnia when you add in pain. Thus Painsomnia. Which is usually brought on by chronic migraines with me. You get caught in this rock and a hard place with chronic migraines because you cannot treat them. You can treat some of them and sometimes that is successful for part of the day and sometimes it is not. so it ends up being a lot of untreated migraine pain by the end of the night. That is what my sleeping pill is to help with unfortunately if the pain is acute it doesn't do a darn thing.

Painsomnia is this hash, brutal version of insomnia. A tormented version. Insomnia itself is maddening. Being sleep deprived all the time isn't a good thing. And seriously I've tried so many things to help with my sleep not worth listing them. And I will try many more. Pain though is different. If it cannot be treated it must be endured. If it must be endured which is the chronic pain lifestyle after all then I must simply try to fall asleep with it. Which apparently I simply do not do. I just lay there. For hours. I do what I usually do with insomnia and day dream about different things to amuse my mind and trick it into falling asleep... not dwelling on stressful things or obviously the pain. But apparently the pain is just to Present for my brain to relax enough to sleep. So it has been often well into the daylight hours. Often 8 or 9 in the morning that I am sort of getting some sleep. Or not. Sometimes none.

Weird thing about migraines and sleep deprivation. If you have visual snow... makes it much worse. If you have persistent migraine auras... makes them much worse. If you have vertigo... makes that much worse. So look forward to a very distorted warpy day. It has been day three of painsomnia for me and I had a fine tremble through my whole body. Felt entirely unstable. As my whole visual field felt unstable with its constant pulsations, the thick visual snow and that constant tilting sensation.

Another thing about migraines and sleep deprivation... makes the migraines cut like a knife. I woke up today... well not so much woke up, as my spouse trying to get me out of bed as I lay there still awake. I spent a few hours I am pretty sure in that not quite sleep stage 1 sleep. And the pain was slicing like a knife to the pulse of my heart. I didn't want to move. Or think. Or breath. Let alone get up. Yet I had to because it was my brother's birthday party. Maybe I would not have had the migraine been an 8 but it was a 7, just a very sharp 7. Just a very perceptually distorted, vertigo spinny, unbalanced and shaky 7.

Finally, when sleep deprived and you wake up with a migraine... get used to it... it isn't going anywhere.

Finally found a name for that weird color thing that happened to my nailes... Terry's nails

I've been trying to figure out what the hell caused this discoloration. Thinking surely it has to be some sort of nutritional deficiency. Or lack of circulation.

THAT is what my nails look like.  All of them. Toenails included. But my big toes actually looks more bruised at the top. Weirdest thing. Not sure about the toes because not like I look at them, but the nails just happened over night. I mean they were pale all the time. And the luna part (pale arch at the nail bed) to the nail has been gone for years and years, which oddly enough if you ask people with FM who have had it a while that statistically you find is fairly common if puzzling. But the flush redness at the top was new and odd. The only reason I really noticed it I expect was because my fingers were tingling one morning and I was not sure if the peripheral neuropathy in my left had was getting worse, plus I had this lingering cold I was wondering if the asthma I was still trying to adjust my meds to might have something to do with the hand sensations. Figured the color change had something to do with that maybe. Until it stuck around. I tried to look it up but there are a lot of odd nail changes and wasn't one hundred percent sure what I was looking for... red tips? Until I found a site that described it perfectly just recently and then Google imaged it and presto. Here it is.

Except none of the things this is associated with are really all that good. Or make any sense. Or are simple as I thought it surely must be. I highly doubt I have liver failure. Yeah some medications I am on can mess with your liver but one would suspect the other symptoms of it would be a slight clue. Nevertheless one doesn't like to see that on the list given the liver does work overdrive with some of those meds. Then there is hyperthyrodism... nope, I swing the opposite way. Malnutrition... not an issue. Diabetes... I sure the hell hope not... I mean come on! Like being excessively thirsty is a symptom one could ever determine is a symptom to diagnose me with diabetes... I'm always excessively thirsty. And then congestive heart failure which I think I'm too young for but given my other health conditions and the asthma I have the most symptoms of currently, but literally I have had all the tests for that before because when I wasn't diagnosed (directly prior to pretty much) for hypothyrodism I had some crazy arrhythmias (I mean seriously nuts) and horrific chest pains and did the whole heart work up... which would have been about eight or nine or so years ago. I doubt the ticker would have crapped out in that time span. Plus don't have high blood pressure, have low blood pressure. And the only chest pains I have had recently have been angina from triptans. And shortness of breath from triptans and asthma.

Sort of a weird or what symptom right? Maybe a situation where my nails are turning so pale you can see the flush of blood at the top where you put the most pressure? Beats the hell out of me. I think I will ask my doctor about it. I did mention it to the doctor assistant chick the last time when my doc was on holidays but she had no idea... but I was pretty damn sick at the time and because I was pretty damn sick with a sinus cold that went into my lungs while my asthma was not well managed we both speculated that had something to do with it. I don't know... I thought lack of circulation could cause that... I mean the hand with nerve damage is perpetually cold, not like I could tell if it had lack of circulation. Or maybe just a medication side effect. One never knows with odd ball symptoms. Bizzaro symptoms.

Comparative pain scale chart... pain scale charts generally irk me but this one is quite descriptive

Well, according to this pain scale I exist at a pain level of 7 and 8 all the time when it comes to migraines. But I suppose on average that is right even though I might rate them differently because I use a different pain scale... that chronic pain pain scale that is totally skewed by having chronic pain. And I tend to rate an average migraine as a 6 and when it begins to get nasty a 7 and when I'm really disabled by it a 8 and when I'm completely crippled by it and immobilized and cannot even think past the pain, have had it straight for days and days a 9. And the occasional 4 and 5 being half treated migraines or migraines I didn't need to treat and was able to 'function' or think through the pain. A migraine diary would be really repetitive if it was all 7,7,7,7,8,8,7,7,7,7,8,7. Even though on average, yeah, I exist on 7 and play around on 8 way too often.

I suppose with FM pain it fluctuated between a 3 ad a 7 which is what I would actually use in what I calculate. I suppose my baseline pain is a 5 although I don't find it 'very distressing' it just is what it is... and your 'normal lifestyle is curtailed' because you have to work around it in various different ways, but it is a baseline pain so it is normal.

And what sucks about having more than one chronic pain condition is that it is hard to answer this question isn't it? What is your pain level? Well, where? My neck is a 6. My migraine a 7. My legs a 5. My back a 4. Lets just draw a body and I'll post numbers on it. I don't think in pain levels generally. I track the migraine pain levels for neuros who don't give a crap. But I don't generally go 'well how badly do my legs hurt today?' I just think 'how much can I do today and how can I do it?'

But this is a good chart to have for doctors. I mean the other ones or even the questions they ask simply do not work for chronic pain. 'on a scale to 1 to 10, 10 being the worst pain you have ever felt what is your pain level?' Well, I can tell you right now that what I would say a 10 is, is vastly different than the average person. I vividly recall what I would call a 10 and it is pain that is beyond the ability to move, beyond the ability to speak, just existing within it by the longest second ever known, being trapped within the infinity of it, repeating some mantra like 'please god let it end' even when I don't believe in god. That is my 10. And maybe it is for some other people too, but I expect it isn't for most. And people with chronic pain... our notion of what warrants a 7 or an 8 or a 9 or a 10 becomes vastly skewed by having to endure it day after day and forced to function with it. If I say 'this is a migraine I can function with' this statement might be beyond comprehension to someone who rarely gets migraines and never has to function with them. So not only am I going to rate my pain lower, just from my subjective experience of pain, but I might also be very 'stoic' and not exhibiting and pain behaviors... both these things are things that are less likely to get me any real treatment from a doctor.

Just saying for example 'I have a status migraine that has persisted for five days and is very acute' isn't going to get me actual treatment for a status migraine, oddly enough, because apparently I'm too stupid to know what it is and therefore will get treated like it is just a migraine and be sent on my way... I suppose I should scream, and wail, and freak out next time. Fact is, there won't be a next time. You would have to drag me there screaming and wailing. It doesn't help to use the numbers you think you should use either if you are too stoic... they just expect people in that much pain to act a certain way, even if most of us... contain it tightly. Anyway, this would be why I didn't go to the ER when I got that mysterious persistent numbness in my hand from a status migraine, because they never treat the migraines right to actual abort them... so yeah I got nerve damage from that experience but the fact remains I would have anyway because isn't numbness normal for a migraine and wasn't I all stoic and how would I know how dangerous a status migraine is? And now I can say the nerve pain in my hand currently feels like a 3 and the frustration I feel with inept doctors feels like an 8.

Cool shades... Study Finds That Tinted Specs Offer Migraine Relief- for hyperactivation visually

Not the only study by the way. I have read others but they were some time ago. "The research shows how coloured glasses tuned to each migraine sufferer work by normalizing activity in the brain. The researchers saw specific abnormal brain activity (known as hyperactivation) when migraine sufferers saw intense patterns. The tinted lenses considerably reduced the effect. Jie Huang and colleagues homed in on specific visual stimuli known to trigger migraines. These patterns, high contrast stripes or ‘gratings,’ can give the illusion of shape, colour and movement. These not only trigger migraines but also may cause seizures in those with photosensitive epilepsy." Study Finds That Tinted Specs Offer Migraine Relief

Yeah.. man, do I know about this. Which is why I turned to the Irlens Institute... because my persistent migraine auras cause some serious distortions which give the illusion of movement, where there is none, lines warp and shift, objects contort, my eyes do some wonky things as they try to compensate or focus.

"Before the brain imaging took place, participants were tested and prescribed precision ophthalmic tints (POTs) with an Intuitive Colorimeter. Previous studies have suggested that some 42% of migraine with aura sufferers saw their migraine frequency halved on days when they wore POTs. The researchers used the colorimeter to illuminate text with coloured light, manipulating hue and saturation at constant luminance. For each test participant this gave an optimal hue and saturation (chromaticity) of light that led to the greatest comfort, reducing perceptual distortion. The test subjects then viewed stressful striped patterns illuminated with their optimal coloured light settings to screen for efficacy. The researchers used these readings to generate both effective POTs for each migraine sufferer and also two other pairs of grey and coloured lenses with slightly different properties as controls. 11 patients who frequently suffered from migraine enrolled in the fMRI study. Each patient was paired with a migraine-free control, who was also tested with that patient’s three sets of lenses."

How awesome is that? With the Irlens diagnostic they get you to go through a bunch of different color filters as well to see which works best for your eyes. So I would recommend anyone with who might benefit from this to go to them because how else are you to determine the right color filter? 

"Once in the fMRI machine, the researchers exposed subjects to a range of striped patterns – these had varying likelihood of triggering distortion and discomfort. This study aimed to investigate the effect of the POTs on the cortical activation induced by the stressful pattern in each of the visual areas of the brain. Although patients reported some relief using all of the lenses (by around 40%), the POT lenses had a significant effect when viewing the stressful stripes (70% discomfort reduction). Both control and migraine patients responded similarly to the non-stressful stripe patterns, and in these cases all three lenses made no difference to the result. The POTs specifically suppressed cortical activation for migraine sufferers in visual area V2 of the occipital cortex of the brain, and this POT-suppressed cortical activation was also extended to the other extra-striate visual areas V3, V3A, and V4
“The reduced cortical activation in V2 by the POTs may have been responsible for the POT-induced suppression of the illusions and distortions, considering that V2 neurons but not V1 neurons in macaque monkeys respond to illusory contour stimuli,” Huang suggests.
The cause of these responses to specific visual stimuli is likely to differ from the photophobia (light sensitivity) migraine sufferers often report during an attack."
I am really glad they are looking at research for this. I will tell you when it comes to migraine auras and the issues involved with vision like this... not much can be done about it when preventatives not working, you might have persistent migraine auras, and the fact that even when you do not have a migraine you are still susceptible to this phenomena and it might be triggering migraines. It is a warpy world out there for me and neuros don't much care about that but I sure do which is why I looked into the Irlens institute and I will say when I went for the first test... they ranked me on the severe side for distortions... I will be going for the diagnostic for glasses as soon as  can afford it and honestly think it is the only thing that will help with my vision, given I am not on any preventatives that work and even if they do work for migraines it doesn't mean they will have any affect on the persistent migraine auras.
Now in regards to photosensitivity and florescent lights... nasty ass triggers in themselves people find Thermaspecs to be useful or that tint for glasses or rose tinted glasses like I use. 

Insomnia and Tryptophan for sleep


I have some pretty insane insomnia and while the waking up at night and the unrefreshed sleep are issues they are issues that are somewhat handled by a sleeping pill I think... as in I think my sleep quality is better. They delayed onset insomnia isn't handled by the sleeping pill because it just takes me a long time to fall asleep and it isn't strong enough to knock me out... when you add in pain, well, then it isn't strong enough period because then I have some real sleep issues. You add in vertigo and I'm lucky if I sleep at all. So it is erratic. And it is a real issue when I work because it causes some real sleep deprivation which triggers some long stretches of migraines and well then that is a problem compounding a problem. There are medications that they can prescribe to 'enhance' the sleeping pill... and they enhance it all right... enhance it All Day Long. So while that actually is an option when I'm trying to break a brutal migraine streak like a status migraine it isn't a way to regulate my sleep at all. And while I have been off work... well I just go to sleep when I am tired which is like 3am or 4am which isn't good or normal and when I'm in acute pain it ends up being 6am or later or never.

 So this alternative which is completely a completely natural way to boost serotonin levels which regulate things like mood and sleep is one way to actually help out with this. It was recommended to me. And I have tried melatonin and it did nothing. I think it is totally worth a shot. And I can't remember if I tried it or not. It sounds very familiar. But worth a shot again. And worth mentioning for everyone with FM and sleep issues, or sleep issues due to depression or just crappy sleep.

 Better Brain Chemistry with Tryptophan
"Tryptophan Improves Sleep Quality

The two main biomolecules that are involved in the production of normal sleep—the neurotransmitter serotonin and the hormone melatonin—are both naturally made from tryptophan in the body.22 That makes tryptophan a tremendously valuable supplement for those whose sleep is lacking in either quantity or quality.
Studies dating back to the late 1970s have demonstrated that taking between 1 and 15 grams of tryptophan at bedtime can help you fall sleep.23 Even doses as little as 250 milligrams were found to increase the quality of sleep by lengthening the amount of time spent in the deepest stage of sleep.23
During the 1980s, many additional studies demonstrated the benefits of taking 1,000 mg or more of tryptophan at bedtime. Significant improvements were shown in subjective reports of sleepiness such as a decrease in the time to fall asleep, decreased total wakefulness, and an increase in total sleep time.24-26 These studies showed their most impressive results in people with mild insomnia, or in those with above-average time it takes to fall asleep.27
Those who take tryptophan at bedtime are more likely to wake up with increased alertness, to have clearer thinking, and to perform better on attention-requiring tasks.25,28 Unlike sleeping pill drugs, tryptophan induces sleepiness but does not impair performance or produce dependence, nor does it make it harder to be roused from sleep when necessary.27,29
One study in older adults demonstrated significant improvements in total sleep time, a decrease in the time to fall asleep and sleep fragmentation or periods of broken sleep following a twice-daily serving of tryptophan-enriched cereal providing 60 milligrams of tryptophan per ounce.9 (A ten-ounce serving of this cereal would thus provide 600 mgof tryptophan.)
Tryptophan may also play a positive role in one of the most dangerous sleep-related complications, obstructive sleep apnea. This condition causes repeated episodes of near-awakening that viciously disrupt sleep cycles and places sufferers at greatly increased risk of developing cardiovascular disease in later life.30-32
In one study, patients with obstructive sleep apnea who took 2.5 grams of tryptophan at bedtime showed significant improvement from their baseline sleep patterns, with improvements in the amounts of time spent in “rapid eye movement” (REM) sleep, and shortened time to entering rapid eye movement sleep.33 Decreased rapid eye movement sleep is associated with poor next-day alertness and feelings of fatigue, sometimes resulting in involuntary falling asleep during daytime (narcolepsy)."

My brain hates the sun... has to be a new persistent migraine aura

Every single time I go outside into that bright distorting sunlight I have been experiencing the same phenomena. Now, I must say that brightness is not my friend. Neither is dimness... dimness makes the visual snow much more vivid and thick. Brightness is more distorting. So the air pulses more and lines wobble and shift more. It is damned hard to focus on anything really. And within moments of being outside I get a vivid and bright aura in the center of my vision. It is roughly circular and much like most auras it does that usual rotational motion of color and distortion like a moving colorful bruise, but this one is in the core of my vision and rotates in a circle. Unlike a scintillating scotoma it isn't scintillating really... not multicolored sparkles of light. Just translucent negative bruises of blue and black and indigo light and distorting clearness.

Now I have seen the damned thing in a bright room inside but to a milder degree so maybe not sunlight induced. But it certainly becomes vivid in the sunlight and lasts longer. Or is triggered by it.

And this aura is New. It was not There a few months ago. And it is not an aura that comes before a migraine. I wish I had a nice visual migraine aura again. No, this is a New persistent migraine aura. Like I need another one of those. This is getting crazy.

I was just thinking today when I was outside trying to focus on the house across the street as the lines kept warping and my visual field would flicker and the whole damned area was pulsing that this was just too much distortions. I can't see properly. When I try to focus on one thing my eyes get worse and contort things. It isn't good at all. And that is just the baseline aura phenomena not counting this new thing that happens or all the other add ons that can happen. Or how bad the visual snow can get, which is pretty damn bad right now because I slept so little last night.

Visual Snow: What is visual snow?

People often ask me about visual snow and so I have written an article (Visual Snow: What is this neurological disorder all about? about it to clarify what it is because it is a distinct phenomena from a migraine aura. Now many people, including myself, when I first was told what visual snow was I was told it was part of my persistent migraine aura. My neurologist simply said I have a persistent migraine aura and visual snow is a symptom of that. However, it isn't as simple as all that because visual snow doesn't behave like a migraine aura at all. When researchers did scans of the brain it didn't show as migraine aura like in the least. And while it occurs very often in people with migraines... it occurs in people with migraines with aura and migraines Without aura. So clearly it is something else entirely.

Now the reason someone can see a migraine aura is because seeing is more than the eye, it is the eyes and the brain. And visual snow seems to be a malfunction in the brain where information being processed in not filtering all the visual information received properly and so we see this visual static that other people do not. No idea what is actually going on, but that is how I think about it. Either way, we see this static in the visual field of black and white dots over the entire field moving all the time, which gets more vivid and thick in dim and dark environments.
Eye on Vision
Now people with visual snow often have other symptoms that come with it. Things like photophobia, and halos, and starbursts, and see more floaters than normal, more blue field phenomenon than normal (sparkles in the sky)... even when they just have visual snow and have never had a migraine. And indeed I have many symptoms of visual snow and it is hard to say which are persistent migraine and which are visual snow symptoms so generally I assume they are due to visual snow and only the ones not associated with it persistent migraine... even if they all are lumped under the same category often by neurologists.

So here is the article I wrote and maybe I will add to it the more resources I get, but it helps explain what Visual Snow is: Visual Snow: What is this neurological disorder all about?

Dr. Wolfe suggests Fibromyalgia is a spectrum disorder?


There is good reason for people with FM to be insanely frustrated with having an invisible disability because this one is significantly more invisible... it is Still debated among doctors as to whether it exists or not. What it is really. Is it more than one condition? Is it psychological? Is it just made up? Is it neurological? You would think with all the evidence you wouldn't be foolish enough to say nothing is going on with these patient's brains and bodies... but you'd be wrong, there are still doctors debating this. And that is why there is still this insane stigma of having this syndrome.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.
But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.
The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.
“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs. Drug Approved. Disease real? New York Times 2008
That was in 2008... but Wolfe recently did a study claiming FM is a spectrum disorder.

"We found strong evidence that fibromyalgia is not a discrete -- yes or no -- disorder. Rather, the symptoms that characterize fibromyalgia exist in a continuum from none to very severe across all people in the population," lead author Wolfe told MedPage Today.
"In those with fibromyalgia there is overwhelming polysymptomatic distress, with severe pain and severe symptoms of all sorts," Wolfe explained.
"One doesn't either have fibromyalgia or not have it," he added.
The publication in 2010 of revised diagnostic criteria for fibromyalgia, eliminating the requirement for tender points and emphasizing the importance of a wide variety of symptoms, made population-based studies of the condition more feasible.
Accordingly, Wolfe and colleagues identified a representative sample of 2,445 German adults who completed questionnaires on health, diet, education, and sociodemographics.
"The most important finding of the study is the idea that fibromyalgia is more of a dimensional disorder than a disease," said Brian Walitt, MD, of Georgetown University in Washington, who was not involved in the study.
"That's a very big departure from how people like to think about fibromyalgia," Walitt told MedPage Today.
Fibromyalgia was assessed on the summary polysymptomatic distress scale, as well as on the scale's individual components of the widespread pain index and the symptom severity score as established in the 2010 criteria.
Those revised criteria required patients to have a score of 7 or higher on the widespread pain index and a symptom severity score of 5 or higher, or a pain index score between 3 and 6 and a symptom severity score of 9 or higher. Either variation led to polysymptomatic distress scores of 12 or higher.
The researchers found that the prevalence of fibromyalgia increased significantly with age, being 0.8% in adults younger than 40, rising to 2.5% for those between 40 and 60 and then to 3% for those older than 60 (P=0.004).
The summary polysymptomatic distress score rose by 0.59 units for each decade of life, while the symptom severity score increased by 0.14 units and the widespread pain index rose by 0.45 units.
The widespread belief that women are more commonly afflicted was not borne out, since the prevalence was similar in women and men, at 2.4% and 1.8%, respectively (P=0.372).
In clinical practice before the revised diagnostic criteria were implemented, up to 90% of patients with fibromyalgia have been women, which may have related to their greater likelihood for having tender points and possibly for seeking medical care for these concerns, the researchers observed.
The analysis also identified a strong correlation (r=0.790) between polysymptomatic distress scores and scores on a somatic symptom questionnaire that reflects how severely a person is distressed by symptoms such as fatigue, unrefreshing sleep, and gastric discomfort.
This was shown by the finding that for a diagnosis of fibromyalgia, the area under the receiver operating curve for the polysymptomatic distress score was 0.996 and was similar, at 0.973, for the somatic symptom score, according to the researchers.
Overall, 53.8% of individuals with fibromyalgia had one or more severe somatic symptoms, while 32.7% had two or more, and 38.5% would qualify as having a physical symptom disorder in the proposed DSM-V.Fibromyalgia not one size fits all disorder
Researchers suggest fibromyalgia is a spectrum disorder

Some Researchers Contend Fibromyalgia Is a Spectrum Disorder

Honestly I don't know what to say about his whole spectrum disorder issue. I get we vary in symptoms and in disability. However, we, ourselves vary over time... I was far different when I was younger than now... especially when you consider our tendency to add in comorbids. And... likewise, sometimes in my life the change in symptoms took me a bit to adapt in coping... so sorry it took an adjustment period and my distress varied... but overall I respond the same to my FM it hasn't become more psychologically burdensome to me. Anyway if you take these freeze frame snap shots of us and line them up it might be seen as a spectrum... but if you put in motion, so does each and every individual as the condition changes over time. Lots of conditions could be viewed like this... is Lupus a spectrum disorder too? Seems bull crappy to me. I have questions upon questions about his whole study frankly.

What is most disturbing to me by far is that by his calculations, and I must specify that, because I've seen that not everyone is too keen on how he came up with this... 38.5% would qualify as having "physical symptom disorder in the proposed DSM-V" Like we didn't see some skeptical researcher grabbing onto that card and waving it around. Like it isn't Deja Vu all over again with a new special label. But people listen to this sort of thing. And this sort of thing takes away from research. I just hope people listen more to the excellent research that has been going on lately than going back to the stone age of FM hell with this sort of thing. And if you don't know what I'm talking about read here Fibromyalgia and chronic pain in danger of being labeled a mental disorder This is the reason why when I have not particularly gotten treatment for FM I have not particularly fought for it... the stigma with it is still there and going strong even in the medical field.

Well this is what he actually says about it to help clarify it, sort of. Fibromyalgia: an interview with Dr Frederick Wolfe, University of Kansas School of Medicine  " In fibromyalgia, studies have shown that the symptoms of fibromyalgia exist on a continuum. From a little pain and a little distress: to a lot of pain and a lot of distress. In fact we call the measures that we use to diagnose fibromyalgia measures of polysymptomatic distress.
This is termed by the UK psychiatrist Simon Wesley who first described illnesses such as chronic fatigue syndrome and fibromyalgia being at the end of a continuum of polysymptomatic distress.
What do we mean by polysymptomatic? Many different symptoms. One might have headaches, but not have all of the symptoms of fibromyalgia.
To put it another way, people with fibromyalgia tend to have a lot of fatigue, a lot sleep disturbance and pain and symptoms and difficulty with thinking and functioning. So it isn’t just distress in one area, but it is polydistress.
You can think of polysymptomatic distress as a condition of humankind which represents both some people who have almost no symptoms and some people who have a major amount of symptoms.
Those who have studied fibromyalgia came up with a cut-point in which they said ‘this is sufficient symptoms to call it fibromyalgia and less than that is not sufficient’.
Although this may be helpful in the clinic, it is scientifically useless because we exist as a continuum." Anyway worth reading the interview as an entire whole. I question this spectrum disorder idea. I question a great deal this whole fibromyalgia measures of polysymptomatic distress. However the interview does add clarity to his concepts.


Opiates and fibromyalgia- a treatment for severe pain but the brain works against us

Now no one in chronic pain wants to get to a point where they need painkillers to function. It isn't an ideal choice or a pleasant one or one very acceptable by doctors even if it is clear you need it. When it comes to chronic migraines some people use opiates as a rescue medication for when their triptan fails or when they they have maxed out triptan use, but opiates have the risk of rebound headaches so it isn't something you would even want to take often. Yet it is an option some end up having because triptans do not work for them or have adverse affects and they are unable to take anti-inflamtories... whatever the reason, they end up on this option because they must even if it is by far the least favored by doctors.

What about for fibromyalgia? Is it being taken for something similar like a rescue med... for when the pain is bad and not for pain treatment altogether? If so, if it is monitored is this such an issue? I don't take painkillers for FM so I'm not certain what it is being prescribed for but I can imagine it is like a rescue medication for a migraines where you would not be using it all the time or even be having heavy duty opiates. I believe the one recommended by the Canadian Guidelines is Tramadol because it is more effective on pain. But it depends on pain-levels doesn't it as to when it is needed? Unfortunately, like with opiates causing rebound headaches in migraines, there are specific issues to opiates and FM. I don't care about all the other reasons. I think all the other reasons are bull. If someone is in pain and other medications do not work then how the hell do you expect them to function and exercise and work if they have no way to manage that pain when it is severe? And the Canadian Guidelines state that if a case requires its use then it is acceptable when monitored and I agree. Yet it is clear our brains are not wired the same way and opiates have less of an effect on us... I do remember that when I was on percocet for a short term when I had no migraine preventative (still don't have an effective one but this particular doctor put me on them short term while I was looking for a new job, since apparently shift work was not a good idea). Anyway, they worked fine for part of the day I needed to get through and it was the best painkiller I have ever been on because, yeah, it did help with FM pain as well, which I rather enjoyed to be honest. But I didn't think they were that strong and a co-worker was astonished I wasn't knocked out by them and down for the count or groggy or hazy and whatnot. I assumed when you were in a lot of pain you simply didn't get any loopy side effects but I think they just don't hit us that hard. I have been on tramacet and a slow release tramadol for rescue meds as well and they work fine as well, the slow release tramadol I prefer because it lasted longer for the migraine pain and worked better really, so you didn't get this acute pain-dulled pain-acute pain sharp distinction in a short time frame, but honestly for migraines painkillers just sort of dull the pain when you are taking them for acute pain... sort of a crappy alternative but necessary to get you through work if you can't take a triptan. I honestly don't know how well they would work on a FM flare up but I suspect the tramacet would be insufficient given it was hardly sufficient for migraines.

Anyway, because I don't need them to manage FM although it sure would be nice for flare ups or when the pain is severe and I can't sleep because of it... I am wary of using them just like with migraines. You use them if you happen to be granted them to manage severe pain but hesitate to do so because of how the brain is already mis-wired. Although to be honest way more wary because of migraines and rebounding. But I don't like the idea of my pain getting worse over time because of treatment choices. Although with chronic migraines... not much of a life if you can only use triptan three times a week and those don't always work. Likewise for some people not much a life being crippled by FM pain. Pain management has to be considered as does quality of life. Some of us like to live not just survive.

Opioid-induced hyperalgesia manifests as reduced nociceptive threshold and is primarily thought to be the result of central sensitization of pronociceptive pathways.[7] Opioid-induced hyperalgesia presents as heightened atypical pain sensations distinct from the original pain stimulus, with a separate location and altered distribution from the original complaint.[52] Opioid-induced hyperalgesia can be recognized clinically as persistent or increasing pain with increasing dose, pain worse on opioids than before, decreasing duration of analgesic effect, and pain becoming increasingly diffuse or poorly localized with ongoing opioid use. Both tolerance and opioid-induced hyperalgesia are concerns with any chronic pain condition; however, because of the pathophysiologic characteristics seen in FM, the use of opioids chronically in these patients deserves extra scrutiny. FM is a syndrome of central pain amplification that could be facilitated or augmented by opioid effects. Specifically, opioids are known to affect the activation state of spinal glia that supports a state of activation of pain transmission neurons.[12] There is reason to suspect that this property of opioids is particularly detrimental to FM and related disorders characterized by chronic neuronal activation.
Patients with FM may also have altered endogenous opioid activity that further complicates the evaluation of the utility of these drugs. A study utilizing positron emission tomography found that patients with FM exhibit decreased μ-opioid receptor availability in areas of the brain key to pain and nociception processing.[53] There are 2 possible explanations for the demonstrated reduced availability. First, endogenous enkephalin levels are elevated in patients with FM, even when compared with patients with chronic low-back pain.[54] Elevated endogenous ligands in these patients may explain the reduced availability of receptors to opioids, decreasing their effectiveness in FM patients. Another possible explanation is that the increased presence of endogenous ligands may lead to down-regulation of opioid receptors. Concerns Regarding Opioid Use in FM

see also Research may explain why common painkillers often don’t work on patients with fibromyalgia.htm

Wearing purple for Fibromyalgia Awareness Day May 12th

Wearing purple for Fibromyalgia Awareness Day!

And of course a had and sunglasses for migraine prevention as per normal.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...