Fibromyalgia, ME and related disorders

Research, illness management and support for fibromyalgia sufferers

Understanding the basis and treatment of disease.

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Re: Fibromyalgia, ME and related disorders

#321  Postby Mike_L » Feb 23, 2012 7:10 am

Agrippina wrote:Here's something interesting to read about aging:

The hypothalamic-pituitary-adrenal (HPA) axis plays a central role in stress regulation, and leukocyte telomere length (TL) has been suggested to represent a cumulative measure of stress. Depression is intimately related with stress and frequently exhibits a dysregulated HPA axis. We aimed to study the relationships between TL and biological and psychological facets of stress in recurrent major depressive disorder and controls.Leukocyte TL was measured in 91 subjects with recurrent major depressive disorder and 451 control subjects. Stress was assessed from both a biological perspective, by assessing HPA axis function with a weight-adjusted very-low-dose dexamethasone suppression test (DST), and a psychological perspective, with self-report questionnaires.TL was shorter among patients compared with control subjects (277 base pairs, p = .001). Overall, short TL was associated with a hypocortisolemic state (low post-DST cortisol and high percentage of cortisol reduction after the DST) among both patients and control subjects but more pronounced among patients. This state, which was overrepresented among patients, was characterized by high familial loading of affective disorders among patients (p = .001) and high C-reactive protein levels among control subjects (p = .040). TL was also inversely associated with stress measured with the Perceived Stress Questionnaire (r(s) = -.258, p = .003).Short TL is associated with depression and hypocortisolism. Because hypocortisolism has been shown to develop from chronic stress exposure, our findings corroborate the concept of TL as a cumulative measure of stress and provide novel insights into the detrimental role of stress in depressive illness and the general population.


http://www.biologicalpsychiatryjournal.com/article/S0006-3223(11)00912-7/abstract


:this: is very interesting! Thanks for that, Aggie!

It elegantly reinforces what we all know intuitively... that negative psychological factors can have a profoundly deleterious effect on physical health and wellbeing. :(
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Re: Fibromyalgia, ME and related disorders

#322  Postby Agrippina » Feb 23, 2012 8:44 am

Yes, as I know too well, it goes around in circles. Glad you found that interesting.
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Re: Fibromyalgia, ME and related disorders

#323  Postby Dawn » Feb 24, 2012 9:02 pm

Very interesting stuff. Now we need to focus on how to lower stress for each of us.
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Re: Fibromyalgia, ME and related disorders

#324  Postby Agrippina » Feb 25, 2012 7:51 am

It's very difficult to do that. Every time something that pushes my stress-tolerance level over its limit, the result is always pain, somewhere, and I'm still slipping into negative thinking. Keeping positive is difficult without pills.
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Re: Fibromyalgia, ME and related disorders

#325  Postby Dawn » Feb 25, 2012 1:12 pm

I agree. I do my best, but there is only so much we can do to avoid stress. When stress free days are already painful and stress only makes it worse it is hard to be positive.
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Re: Fibromyalgia, ME and related disorders

#326  Postby Dawn » Apr 25, 2012 6:57 pm

I found a couple of interesting articles from Science Daily. They are a few years old, but here you go:

http://www.sciencedaily.com/releases/20 ... 153037.htm

http://www.sciencedaily.com/releases/20 ... 112658.htm
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Re: Fibromyalgia, ME and related disorders

#327  Postby Tero » Apr 25, 2012 7:30 pm

On page 1 or 2 there was mention of headaches. Ive had fibromyalgia some 20 years, mild form. Migraines Ive had 5 years, never made the connection. Migraine is worse, but tablets do help that.
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Re: Fibromyalgia, ME and related disorders

#328  Postby Dawn » Apr 25, 2012 7:35 pm

It is interesting what connections are being made with other symptoms and FMS. I have tachycardia and didn't realize it could be connected until I read an article about research relating autonomic nervous system dysfunction with FMS.
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Re: Fibromyalgia, ME and related disorders

#329  Postby Redial » May 14, 2012 7:04 am

10 years ago I got Glandular Fever, 6 months later I got CFS, 10 years later my life still sucks :(
Evolving wrote:Mine looks as though it fits into Redial's piece.


Spinozasgalt wrote:I wish I was a lady, I imagine being female is akin to flying through clouds.
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Re: Fibromyalgia, ME and related disorders

#330  Postby Agrippina » May 14, 2012 2:37 pm

@Redial :hugs: welcome to the pain club.

What have you read about the condition Redial. Anything we can look at that's helpful.
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Re: Fibromyalgia, ME and related disorders

#331  Postby Redial » May 14, 2012 11:11 pm

Not really. Basically every doctor I've been to says that I just have to rest and "take it easy" I found that low sugar and low lactose diet help sometimes. But my illness is usually brought on by stress or sickness or even injury, over doing it the day before, not sleeping correctly or travelling.
Evolving wrote:Mine looks as though it fits into Redial's piece.


Spinozasgalt wrote:I wish I was a lady, I imagine being female is akin to flying through clouds.
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Re: Fibromyalgia, ME and related disorders

#332  Postby Dawn » May 15, 2012 4:50 am

Hi Redial. I am sorry you have CFS, but glad to have you posting here.
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Re: Fibromyalgia, ME and related disorders

#333  Postby Agrippina » May 15, 2012 5:00 am

Redial wrote:Not really. Basically every doctor I've been to says that I just have to rest and "take it easy" I found that low sugar and low lactose diet help sometimes. But my illness is usually brought on by stress or sickness or even injury, over doing it the day before, not sleeping correctly or travelling.


Doctors are helpless to treat this syndrome because it is so varied. There isn't one symptom they can pinpoint and treat, which cures the rest of them. So they write scripts for drugs that seem to help but that don't fix the underlying problem, because nobody knows exactly what it is.

I can only ask questions in an effort to offer some advice:

1) You've said that your symptoms are brought on by illness or stress. I can identify with that. I've protected myself from colds and flu for years because my immune system over-reacts to ordinary cold germs. It takes me six weeks to recover from what most other people call "a cold" and that in me, always becomes full-blown flu. I'm still fighting a cough after four weeks since I was in bed with a flu I picked up from my grandson's cold. What I usually do when I go out is to make sure that I do a lot of hand-washing, especially before eating. If I do feel sniffles coming on, I flush it out with lots of fruit juice. i didn't do this when I was visiting the kids, mostly because they didn't have juice, and I didn't make the effort to buy some before it took hold. I'll make sure I buy a couple of boxes of juice before I settle in for the next visit with the children.

2) Travelling. Yes I get that as well. Travelling really takes it out of me. In about 10 days we'll be going on a week of road trips. Luckily we have a very comfortable car which allows me to relax as if I'm in my recliner. I'll play music and chat and not allow myself to stress about work undone, and leaving the house with a stranger. I find air travel especially stressful, because the small seating space and the long treks to the plane and back to collect luggage. But I still prefer to fly to the north rather than take the bus. That would be extremely stressful for me. Try to have a good night's sleep before going on a trip and to make time to recover from jet lag when you get there. Even if you have to add an extra day just to sleep. It does help. When we went to Scotland two years ago, I spent the first day sleeping at the resort before we started the tours around Scotland and again, we had a nice car so I could relax on the tour of England. I couldn't do bus tours of Europe, it would kill me to travel with a crowd of strangers and to cat nap at night while rushing around to night time entertainment. As a result, if we can't drive there, I don't go, which is why I'm an armchair traveller, except to the UK which I know and where I can travel without stress.

3) Stress and injury. That I can definitely relate to. With all the stress I had between June and October last year, I had a mental meltdown, from which I've only now recovered. Stress is a killer. You have to identify the stressors you can control, and remove those, and the ones that you can't learn to handle them with "it will pass." You can't avoid the death of loved ones (and I include pets in this because the loss of my dog last year was exactly the same as the loss of a child) so you have to find positive ways to deal with death. Find whatever works for you and deal with it that way, even if other people don't agree. For me it's avoiding funerals and all the sadness that goes with them. Also I find social gatherings very stressful, I hate being made to go to parities, especially the sort where people get dressed up like idiots and I'm given a central place where people are putting cameras in my face. I try to explain this to my family, and they sort of get that it's not that they're not important but that baby showers and other parties of that sort actually make me ill.

4) Mental, or cognitive issues. When I was growing up, even suggesting that you had something like ADD was the same as saying you're insane. Even now, people still regard autism and dyslexia as "mental deficiencies." It was getting my own cognitives issues identified and learning to deal with them, and those of my kids, that helped me cope in what most people think is "normal society." I can't quite figure out what "normal" means except to use psychology's definitions of "normative" spectrums when it comes to behaviour, and most people fall outside the normative in some of their behaviours, so to me, there is no "normal" behaviour. I've accepted that I am somewhere on the autism scale with my obsessions, hyperactivity, lack of ability to concentrate and exclude the sounds around me and my social issues. One of my sons, who is in teaching, he is exactly like me, only a little higher on the scale of autism and he has dyslexia as well. Over the years we've both learnt to deal with the problems and work around them. If you have any issues, identify them, and figure a way to work with them rather than fight them, this will reduce stress levels and make you more relaxed.

5) Food. Are there any food that make it better/worse? Identify those and work with them. If something causes you to go into an "attack," avoid it. For me it's strange. I can have coffee with sugar, but not with sweeteners, any artificial additives in food make me ill, so rather than try to lose weight, I prefer to be well, so if I need sweetening, I use a little sugar. But I can't have sugar in large concentrated amounts, like in cake for instance. A slice of chocolate cake will send me to bed for two days. So I don't eat cake, but I'll rather have a cracker and a cup of coffee with a spoon of sugar, or tea. I've stopped drinking diet sodas altogether just recently that's helped with my pain. If I have to have a "soda" then I'll have Coke, oddly it doesn't affect me the way cake does, even though there's lots of sugar in it. Identify your personal food problems, I would say first avoid preservatives and additives, try to eat as much natural food as you can, and if you have to preserve food, try to cook for yourself, and freeze it.

6) Underlying medical issues. My doctor recently tested me for and discovered a thyroid problem. It's being treated and now after three months, I'm feeling very well, despite the recent flu. It may have been a problem for longer than I've known because I haven't felt this good in years, possibly a decade or more. So if there's any underlying medical issue, get checked and help that.

7) Drugs to help the problem. If you are on anti-flammatories, thane something to protect your gut. That's most important because they mess up your digestive system. Check every over-the-counter medicine for the things that hurt you. If the doctor puts you on a chronic medication, try for the lowest dose first and take it "religiously" if you go into denial about the condition, you only make it worse. You can't ignore the things that are wrong, a diabetic would die if they did that. Treat your illness as if it will kill you and treat it properly.

Redial I hope it helps you to talk to us about this. It certainly has helped me to come out and be open about it. I didn't wish this on myself, it's not my fault and I'm not using it as a way to avoid work, or social contact or responsibility. I do those all to the best of my ability and adjust them to suit the problem, not the other way around. If people care about me, they'll accept that I can't do what "normal" (whatever that is) people can do. If they push or question my choices or abilities, then they are more concerned about themselves than me, so I don't bother with them. Please talk to us, other people will offer whatever advice they have to help.
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Re: Fibromyalgia, ME and related disorders

#334  Postby Agrippina » May 15, 2012 5:05 am

Just to add, the medical work doesn't give this much attention because it forces them to admit they don't know, it's not sexy (no running sores, or deformed body parts) and it's befuddling -- once they fix one thing that doesn't work, something else goes wrong. It's really only the people who have to deal with chronic pain, fatigue, irritable bowel etc. who really know what it feels like. Also pain is relative, some people can deal with it better than others. If you live with it all the time, you are more aware of it and you can't deal with it as well as people who know it's going to pass. So for people with this syndrome, even a headache that can be fixed with an aspirin, seems worse than it does to people who don't ever get headaches and then when they do, and it's related to a cold, they'll go to work without thinking about it. To people like us a headache associated with a cold, and the cold itself, will send us to bed. Or me anyway.
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Re: Fibromyalgia, ME and related disorders

#335  Postby Dawn » May 15, 2012 9:19 pm

Great post, Aggie.

I find it hard to deal with the ongoing struggle to set limits and pace myself which seems ridiculous because I have cut so much out of my life to be able to keep working. I have sadly stopped doing lots of things that would bring me pleasure because I only have so much energy and I use it all up before the end of my work day. My husband asks me all the time "what is wrong?" when I have to go lie down after work or limp around when the joint pain is bad. It drives me crazy. I have had this almost 20 years. It has been worse the past 5 years (maybe because of my thyroid). I swear it is like he forgets everyday and acts all surprised that I have a problem. I then find myself trying to behave as if I don't have these problems and do things as if I had no pain and fatigue and I make myself much worse by pushing.
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Re: Fibromyalgia, ME and related disorders

#336  Postby Agrippina » May 16, 2012 7:30 am

Pretending it doesn't exist is his way of coping with it. My DH does the same. He'll take me out to the shops for the day and then when I complain of being tired, he'll say something that he doesn't know hurts but makes me want to tell him that he should remember that I can't do the same amount of running around that other people can. Which is why I let him run all the errands, unless I have to make the decision about something. He does all the shopping, paying bills I can't pay online etc.

My family are starting to be a little more considerate when we're out. They'll find somewhere for me to sit and when I visit them, they'll help me in and out of the car or get a comfortable chair for me. It's definitely a case of ignoring it so it will go away. The trouble with this thing is that it won't kill you, unless the depression overwhelms you of course. But you must get help before that happens.
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Re: Fibromyalgia, ME and related disorders

#337  Postby Dawn » May 18, 2012 9:51 pm

My husband is definitely doing the same to cope. I just get frustrated. It is annoying to have to either remind him of my limitations (which I am ashamed of even though I know I shouldn't be) or to push through them and suffer for it later.
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Re: Fibromyalgia, ME and related disorders

#338  Postby Agrippina » Jun 08, 2012 6:37 am

I wanted to report back on my health during and after my trip. Very definitely, relaxing and just enjoying the trip with my camera poised for every photo op made me completely pain-free. I took long walks with my DH in the complex, around the places we visited and in shopping malls, without the usual pain. As soon as I returned home to the work and the stress of showing the house to people who were looking but not buying, all the symptoms have returned again. I'm not saying that I could stop my medication if I didn't have stress and responsibility in my life, that would be tantamount to agreeing that it's "all in my head." I can say that taking my medication and living in a more moderate climate, and being stress-free would probably reduce my symptoms and make me healthier.
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Re: Fibromyalgia, ME and related disorders

#339  Postby Dawn » Jun 10, 2012 12:30 pm

I am glad you felt so much better on your trip!

I haven't found any relief related to less stress other than knowing pain & fatigue does get worse when stress increases. I haven't found that I get better when it decreases though. I seem to have a baseline where things stay in terms of pain level and fatigue no matter what. It might be that I haven't had a long enough low stress period.

I just found out that my employer is taking half our our paid time off away. This is upsetting to say the least. This will not help me find that stress free period I need!

I have found a really interesting link that I have just started exploring here:

http://www.somasimple.com/forums/index.php

It is a forum about pain and there seems to be a wealth of information. There are a lot of physical therapist arguing that the old ways of treating "the meat" (the tissue) instead of the brain where the pain really comes from are not helping people. It is really fascinating.
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Re: Fibromyalgia, ME and related disorders

#340  Postby Dawn » Jun 16, 2012 8:47 pm

Everyone, please do yourself a favor and check out the link I listed in the above post. The SomaSimple forum has a huge amount of information on pain and it is fabulous. I have been reading and checking out links from there ever since I found it and have not begun to scratch the surface of all the info.

I did a recent introduction thread under the name DDH and the people who have responded have listed lots of wonderful resources. I have ordered a (rather expensive) book from Australia called "Explain Pain" that is supposed to be really good.

Here are one set of videos you can watch (watch in order):

http://www.lifeisnow.ca/

Also here is a site that is really good:

http://bodyinmind.org/who-are-we/

I saw a video by Lorimer Moseley that was excellent, but can't find it just at the moment. The above "body in mind" is his site.
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