Psychological component to CFS

Hmm interesting. A few years ago I made a concious decision to avoid an excess of emotional expression for exactly the reasons you describe. The trouble is that I kept sabotaging any recovery I made by doing really dumb things. I would get very angry at inappropriate times and was damaging healthy relationships. I had to confront my "stuff" for better or worse. It has been a very rocky road but It really does look like repressed trauma is the root cause of all this. Dr Freud would feel totaly vindicated.

I'm effectively strapped-in now for better or worse, and assuming that at some point I will hit a "hard floor." 20 years is a long time to suffer this, all through the "yuppie flu" years for example. Have you ever tried "strapping-in" and if so, any tips?

Hear, hear, littleme. Learning to be calm an no react is a very powerful lesson.

Okay, sorry, to clarify. I've had to confront my "stuff" make progress. If you confront your stuff, typically, it can go anywhere and can be scary. Also once you start its difficult to stop, so you need to "strap-in," maybe "buckle-up" is a more appropriate description.

I'm actually fairly familiar with mindfullness meditation and it often does lead to better persective and therefore a more rounded response to life. However it can also be rather confrontational, because by analysing the fine grain of our lived experience in the present moment, all our messy contradictions are also revealed. And when I say "stuff" this is exactly what I'm talking about.

Wow, littleme! This is so weird. I think we're in a similar place with our CFS/ME, and I, too, am learning about Budhism. I took a free 6-week online course with readings to learn mindfulness and meditation. The course was totally secular, sponsored by the medical center of a university. 

Just saw a very inspiring documentary on Stephen Hawking, "Hawking." Talk about attitude. He's curious and engaged with life, has of course made major discoveries in cosmology, and still has a sense of humor. And he's virtually "lockin in" with his ALS. I highly recommend this film, if it's available in the UK. In the US, I saw it on our public broadcasting channel.

Yes indeed, I do exactly that. I can't help feeling that managing is not enough anymore. I talk to my doctor about how emotions cause concrete physical symptoms and he looks at me like I'm a nutter. I'm not talking about being a bit panicy, I mean full-on, full-spectrum CFS symptoms. I want to see the causal links, and I'm sick of just managing this, its not a life.

Off topic jackie.. but i just thought i would mention about the symptom we have in common. Not sure where in the world you are ,but here in the UK we are just starting to get some warm sunny weather. I wasent well enough to sit out in it last year but i have noticed this year that when i do it makes the pain alot worse. You get the really bad *sunburn* sensation all over even areas that havent been in the sun.  Apparently sun sensertivity is something that does crop up with M.E. similar to lupus . I guess looking into it im not suprised as i do have a lot of lupos type symptoms and a constant high wight cell count.  Just wondered if maybe it was something that was adding to your nerve pain problems also.   Another thing i have noticed .. i changed my diet about a month ago and started including a mixed fresh fruit salad every evening to try and help with bowel/stomach issues and general vitamin intake.  I have seen a 50% reduction in my nerve pain since doing this   that was the last thing i expected to happen. I have read on other forums about talking vitamins in tablet form and how absorbtion may not be as good with people  with M.E. So i guess the extra natural vitamins and probably the magnesium are having an effect on my overall health. My energy is better, stomach/bowel issues also much better.  I have to say im amazed ..  just thought i would pass it on as it may help you also x

Sorry to butt-in (my how I love my hyphens.) I used to have big bowel problems until I went all hi-fibre. Everything I eat now is either brown or green, buckets of fresh fruit and veg. I've never looked back. Also I am very heat and sun sensitve and I'm pretty sure this is due to the CFS. I ditched all my supplements a while ago, it turned out they were upsetting my stomach because I was taking so many, I'm afraid I never noticed any real effect, sorry. But I've read plenty of people who say otherwise.

*its not a life*  well i have to say that does speak volumes about how most people with M.E. feel..  The human spirit can endure more than you ever give it credit for. First off you have to except .. without that your lost in a pit of wishing things where different and not dealing with it.  It is what it is!!  as hard as it is you just have to suck it up!! haha.. its not going away.. belive me ive tried it all seen it all.  Mental attitude is everything with this condition.. its the difference between *Its not a life* and *making the best of what you have*   stop thinking and dwelling on what you cant do.. and concentrate and focus on the things you can. Stop worrying about your glass being half empty .. and start being greatful you have a glass in the first place to put anything in!   As for dealing with stuff... Thats best done with a 3rd party.. a councelor is always best as they wont judge you and have no emotional attachment. Baby steps... little things at a time.. and except that sometimes your going to have to take a step back..  we cant change what we have been given, but we can change our attitude to it.. that way you take back the control .. your in charge.. not the M.E. x 

Thanks so much for the info, littleme! I'm not getting out much at all, so the sun isn't an issue for me. I do know, though, that I'm very temperature sensitive. I actually collapsed during a hot shower once, so I dont do that anymore. I do eat a lot of fresh fruit. I just started getting a service that delivers fruits and veggies directly from farms in my area. This is a very nutritious way to eat, though I haven't noticed any change in my energy level or nerve pain. My stomach is fine. i've been taking digestive enzymes for years, as I read that malabsorption is common with this illness. How much magnesium do you take? By the way, I recently had a blood test, and my ANA count was a bit high (ANA is an indicator of lupus). 

Your comment about hyphens made me laugh.

Well, littleme, I feel like standing up and cheering, regarding your "it's not a life" post. Yes, it's all about attitude and being ok with the reality at hand. This doesn't mean you don't seek out new ways to improve the situation. I've heard so many people with CFS/ME talk about losing their life. This is a path to misery. Right now, with my illness, I have been able to read a ton of books, listen to music, watch movies, get informed and "meet" people via computer. In other words, I now have a lot of time to change the focus in my life to a different set of things I enjoy. I'm also very lucky to have a supportive husband. I don't want to sound too Pollyannish here. Getting this illness was not my first choice in life, that's for sure. But, as you said, I can at least control my attitude.  

Strangely enough I agree with everything you say, I see nothing in your post that I have any issue with. However I have made a fairly full recovery in the past. I was cycling to work and swimming 1/2 Km a day the problem was not the physical but the emotional that tripped me up. It wasn't that long ago either and I remember how to do it. Its not "glass half empty" but a realistic goal for me. I'm not dwelling on the negatives I just know that life has more in store for me.

I also feel that we can often set the bar too low with this illness, I have discovered that I can often do more than I think and gently pushing the limits is often beneficial. Look, this is pointless, you have your comfort zone I have mine and that is good.

What I'm really interested in is how my past emotional trauma is conditioning my current physical condition. I have a belief, which I am testing experimentally, that the two are intimately connected. I interested to see if anyone has tried this approach and if they want to share their observations. Therapy? Yes of course, but at some point we have to take responsibility for our own healing. Real healing is usually the result of real action taken in real time in real life. The therapist can only take us so far. Incidently mindfullness is a great tool for this next step.

Have a look at metaphysics, Loiuse L Hay's work.  She talks about how thoughts manifest into the body and manifest into dis-ease. She also talks about which thought patterns manifest which illnesses and gives guidance on which thought pattern and affirmation touse to heal. 

I so agree, attitude is so impotant, its amazing how much a chat with a friend can lift me. But I feel I need to defend my "its not a life" comment. Dissatisfaction, anger, and disappointment are valid emotions that usually contain useful information and should be given proper respect. They are also excelent motivators if motivation is what is needed. The important thing is not to get "stuck" there. They are just as transient as any other emotion and no more or less valid.

It may well be that I will be forever at this particular activity level. There have been times that this has appeared to be the reality for me, this turned out to be incorrect but at the time it was important for me to properly grieve the life I felt I had lost, indeed it was essential for me to move on.

I too have had long periods of wellness.. and i never set my bar low at all.. I push my body beyond what it can do on a regular basis. I often go 3 - 4 years between relapses and have an almost normal life.  What i was saying was if your looking for a *get better* scheme your not going to find one.  The problem is not with your mind as such but negative thought process will make your symptoms worse.  

No amount of therapy looking at and dealing with your past will make it go away! that is the point i was trying to make.. all it will do is help with the symptoms.  It will still keep comming back and biting you on the behind, usually when you feel at your best and can take on the world.  

You can ask anyone who knows me , i dont understand the words confort zone.. i dont have one. Ive been through more in the last 20 years than most people will deal with in 2 lifetimes  I have just chosen to make the best of what i have and to stop worrying about what i cant change. Just that one thing realease the mind and body and has a masive affect on the ilness as a hole.  IM not the person i used to be... but in alot of ways im more than i have ever could of dreamed to become  

Yo, I loved this book. I used to use those affermations all the time. But if it all gets too complicated I found that garden variety lovingkindness/compassion always works on some level. Love your illness ect. sounds lame but it does help. Interestingly it is similar in some respects to the Tibetan Tonglen practice where you use your own suffering to to connect to universal suffering. (short version) Very powerful.

"Toxic Parents" was also good for me, bit more challenging though as I think the title suggests.

Great to hear that you are able to take the ups and downs in your stride. I'm interested in what triggered your relapses. I've found that these periods are very interesting in terms of learning to cope.

You seem very certain that no full recovery is ever possible. You may be correct, but I'm just not willing to accept this level of certainty. Especially since nobody has a clue what causes this, some people belive that what we have, is actually a collection of related illnesses and not a single ailment. You can add in all the oddball recovery stories and the testimonials of those who feel that they have fully recovered. The various doctors I have spoken to refuse to be difinative about any aspect of our illness. So I think the jury is out and probably always will be. I suppose I like to flirt with the idea of full recovery because it keeps me interested in new approaches and research. Recent research on mitoncondrial ATP production is very interseting and may lead to some kind of drug intervention. My own experience of processing personal trauma has caused me to quesiton all kinds of certainties that were quite precious to me and that I would defend vigorously. Certainly some of my symptoms are the product of unhealthy relationships and unhealthy emotional prcoesses. Working with these has so far produced significant symptomatic relief and a great deal of personal liberation. I don't know how far this will go, partly because no one is willing or able to verify or comment on this kind of process. So why not entertain the idea that It may "fix" me? If you can tell me with some certainty [u]why[/u] this is not the case I would very much welcome the dialogue.

I say "why" because you have said that

"No amount of therapy looking at and dealing with your past will make it go away! that is the point i was trying to make.. all it will do is help with the symptoms.  It will still keep comming back and biting you on the behind, usually when you feel at your best and can take on the world. 

but not [u]why[/u] you got "bitten on the behind." I have found that it was unproccessed trauma that caused me to make some bad choices that led me to crash when I was very much on top of the world. Any thoughts?

Hmm, comfort zones, sorry, I'm all for them.

Although I do feel wiser for being sick. I feel I have matured in many ways that may not have been possible otherwise.  But I don't see hope in some kind of more persistant recovery as a prison, I'm guessing that you don't either really. Life presents unexpected opportunities that can have surprising results, I'm not keen to close off any of these opportuniies by ruling things out as "impossible." S

 

I hear what you are saying.. and yes so far they clearly dont have a clue what is going on. I would love to hold on to the idea that one day they will make some progress and would happily submit myself for tests trials etc to help this on its way, but at the point we are at now, they are so far from even having the slightest clue to what the cause is i dont hold out much hope for it happening in a time frame that will help me. But in the back of my mind there is always hope

My journey has been different to most as i had the symptoms for 15 years before any diagnosis. I was told so often that *all seems fine* your ok go away and get on with your life... that i started to actually believe that maybe i was OK. I put this very fact down to the fact that i have gone long periods in between the severe relapses. Ive always had milder symptoms, but i think you just learn to live with these.  My initial problems started after i almost died having my second child, so i put a lot of my symptoms down to damage caused by that event, not actually realising there was something else going on in the background.  The only thing that has even been odd on any of my tests is a constant high white cell count. I haven’t had a normal test in 20 years and im sure this is what causes all my Lupus type symptoms as well as the constant flu like situation that you get with CFS. The doctors however have no idea why my immune system behaves this way.  

AS for relapses... they are also caused by a long period of stress which puts further strain on the body and then causes illness. This can be anything from a Flu to sinus infection/chest infection.. etc.  this overwhelms my system and causes the relapses. I can have periods of mental stress and cope OK.. and then have periods of illness and again OK.. its only when the 2 overlap do i relapse.

Ive read so many forum posts, literature etc on the condition that it makes you lose any type of hope for a positive outcome.. how can you treat a problem when you dont even know what the problem is, let alone what is causing it. It’s enough to make your head spin.  There has been alot of positive research into LDN in treatment for both Fibro and CFS .. Look up  *LDN Research Trust* on google... they don’t link you posting links here.  

Emotional stress i feel can make the symptoms worse, but for me, on its own.. it is not a trigger. But CFS is different for everyone so im sure in some people it will be enough to cause a relapse.  

Its a hard road Jackie.. and i think what makes it so hard is the lack of support and understanding about the ilness. Id be lying if i didnt say that there are days that when i wake i hurt so bad i dont really want to bother getting out of bed, but then my dog comes over and gives me a nudge and up i get    Counting your blessings is always a good thing The days i just want to give up I think of all the people who would give anything to be in my shoes.. like the people who have just been given a Terminal diagnosis... id bet they would swap with us in a heartbeat, then suddenly i dont feel quite so sorry for myself.  I truly wish there was a magic cure, or even a usefull treatment .... but so far there isnt, and they are so far from understanding what it is and why it is.. i cant see anything usefull comming up in the next few years as there seems to be very little reasearch into it. Lets face there are still a population of doctors who havent heard of it, and one that have that still dont think its a true ilness.

Hey, whalebone! Just want to say that of course there's always hope. It's harder, I think, for those of us to feel hope who've had this disease for several years. We may be in more of an acceptance and coping mode than people relatively new to the illness. Especially for those who've had CFS/ME for 3 years or less, there's a very good chance that you'll get better. How much better varies. When I first got ill, I was running around seeing different doctors and nutritionists, trying many different treatments, flying out of state to see specialists. Trying treatments recommended by others with the illness on the Internet. (Whew! I'm getting tired just typing all that I need.) Now I'm just doing my best to get throught the day. My relapses have typically resulted from doing too much physical activity.

Yes indeed, the lack of support and understanding is infuriating. I've almost given up actually. That said, I currently in a relationship with someone with whom I did everything short of actually beating her, with and actual Sh!tty stick to get her to go away. I was assuming that she would not get it, and complain a lot. But she has hung around, much to my surprise. So there is hope.

I'm with you on the being vulnerable to a combination of factors. That is what tends to trip me up too. I've found over the years that I have been able to develop tools to deal with each. But I still crash a lot so it feels like my recovery is like a computer program that falls over due to a bug in the code. I need to fix the bug and run the program again. The trouble is it can take months to run the program so the whole process takes forever. I've been sick since 2008 but I'm now back at work and in a relationship again, so in my case the patience has paid off. I have no idea how long this will last but when I do fall over I suppose I'll just figure out what went wrong and try again. (Oh well, at least I'm not raising a family living in a hole in the ground in Mongolia and eating nothing but Yak lard. I read this last bit in a book, so it must be true.)