How do we explain - in brief - what is disabling about FMS?

How do we explain - in brief - what is disabling about FMS?

There are the cynics, the well meaning offerers of advice and cures, and the bewildered. . . . whenever I try to explain why I feel 'challenged' to stay awake or alert, and why I need to rest. My current counsellor says 'fatigue' is a word that, in her experience of working with FMS/CFS sufferers, just doesn't explain what the feeling is. Fatigue is something people recover from - but I have just never recovered fully from my fatigue, but neither do I seem to express this to the said cynics, etc. etc. One of my closest friends seems to be having a really difficult time 'getting' what I am saying when I say I couldn't do what I used to do. She immediately said - 'that is what your problem is' i.e. I don't believe I can do it anymore, therefore not trying hard enough, or its just mind over matter etc etc. I found this so upsetting, frustrating, and hurtful, that I had a bit of an outburst and have been stressing about it ever since. (Sunday) She believes I am de-energised by job ..... and that is my problem - if I had a different job I wouldn't be ill any more......... So in what words do we use to keep it brief, and to the point. In work when I have to say - I need to take a rest - I have a condition that ....... what????? In social situations - I have experienced 'party pooper' syndrome because I won't join in with drinking bottles of wine etc. I read on other blogs that some carry a written paper with them - should people ask ... I wondered what it says?

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  • Hi Suzy, hope you don't mind me shortening your name. It is quite hard to explain fatigue, the best I have is asking someone to stay a wake for 48 hrs explain how they feel in doing so, lack of energy, cannot focus or think straight, no energy to do task or a full days work. then the fibro side ask someone to imagine arthritis or exstreme flu symtoms and they may just understand that is what your daily life is like, which in turn leave you both phyiscally and mentally drained. I hope this helps a little best way I can explain hugs Ingrid xx

  • Hi Suzysparkle

    One word is all you need and that word is PAIN.

  • Hi Suzie Sparkle - what a pretty and energizing name you have picked which suggests to me that is part of the inner you a spirit that fibro can't quite get at however much it tries to. I have been on other fibro sites and have some written bits and bobs collected overtime and will try to dig them out for you within the next few days if you can bear with me. Am a bit done in at the moment otherwise I'd leap straight away and go look. Meanwhile I'll let you in on a secret: I feel a terrible fraud when I go out with friends who have had back surgery or shoulder problems etc - well I have some of those too but not spinal surgery but whilst they 'get on with it' - and say that is what we have to do 'get a grip and get on with it' I cannot do that. This doesn't just vanish and when I do push myself to fit in with everyone else I pay by several days of severe disability of one kind or another - since they cannot feel the unrelenting fatigue that doesn't improve with sleep, and they don't feel the variety of pain stimuli we endure how can they understand? I fear that what most experience / judge is down to ignorance and I know that those whom know me well and who used to see the pain etched upon my face and the pallor of my skin from the fatigue - they know and they love me and they grieve with me for the daily losses and frustrations and they celebrate with me for life's little wins. We get to discover what really matters in this life as shallow drops away. Very best wishes, Mr. Scamp.

  • thank you - your words made me feel good - I do keep trying to keep the sparkle alive. Of course you are right - they can't feel the pain and fatigue - and I would never wish anyone else to experience it because it is a horrible place to be. Of course, I am still learning about what needs to drop away. :-)

  • Hi Suzysparkle

    I have tried various different explanations, but find this one seems to get their attention! I tell strangers who ask what Fibromyalgia is that " Its a debilitating permanent condition that affects the central nervous system. This causes widespread pain to muscles & tendons, leaves you feeling permanently tired & weary, & you can't sleep properly, which in turn affects your memory & concentration." A longer "speech" for people you know adds on the end......" As it is not known what cause Fibro, there is no cure. We just have to muddle through best we can with the help & understanding of family & friends"

    I like the one from Tess above. That is really simple to understand because most people have experienced lack of sleep ie. jet lag & know how awful flu makes you feel!

    You could also add "its a shame I can't drink any more because of the meds I need to take."

    Good luck in finding the right words that you are comfortable with, but gets the message across!

    Gentle hugs xx

  • Hi there. I know how you feel, I get funny looks, fibromyalwhat? Is the usual response. I just say, imagine having the worst bout of flu ever, add in unbearable pain in limbs hands, back and neck, then add to that the feeling that after 8 hours sleep you still feel the same as yesterday. If you can picture that you are half way to knowing just how bad I feel.

    I am lucky that most of my family and friends understand, but it is still a struggle when people can't see and outwardly signs of an illness.

    Piggle hugs xxxxx

  • Hi Suzy What a shame your friend doesnt try to understand what you are going through this illness is really awful I wish I could just pull myself out of it or re-energise but its not going to happen any time soon unless we are really lucky.

    I only went to my daughters for tea last night but was so tired I couldnt wait to get home I never used to be like that and today I can hardly move I have had a lot of stress lately and it has made me much worse than usual,but my closest friends understand I printed off what FMs was and showed them and they have been more understanding since so maybe thats an idea for you, I got one off of a site called fibroduck and it explained it perfectly.

    I was always the life and soul of the party never in, always busy and to be like I am now its scary, but never mind I have ranted enough I really hope you feel better soon Suzy big hugs (((((gentle ))))))

  • Hi Suzy

    I know exactly how you feel. Sometimes I am actually embarrassed to tell anyone I have fibromyalgia. No one would believe me at work and I was actually forbidden from using the disabled bay. Trouble is we look so well and someone with a toothache can look terribly ill. I eventually had to give up work due to the stress of having to try and ignore my own illness. I dont know the answer to your question but I too will be looking at your replies to see if anyone else does.

    Take care

    Jaws

  • Hi there everyone, I tell people that I have fibromyalgia or chronic fatigue syndrome and explain that its like having flu constantly and it seems to take forever to go away or improve slightly.I agree we all look ok which is frustrating.I will look on fibroduck.Take care everyone.gentle soft hugs currently in a huge fibroflare but will survive.gentl soft hugs to all. xx

  • Thanks for taking the time - rest lots and hope it settles soon xx

  • Hi guys and gals have you heard of the spoon theory? In brief it helps to explain the fatigue bit of fibro quite nicely though I think was a response to describe another kind of disorder. You begin the day with 20 spoons. Each activity or event uses up x amount of spoons and once you get to the end of the 20 spoons that is it - you can't have any more spoons for the rest of the day! I think that is quite a neat and simple way of explaining that our energy doesn't rebound - we can't simply sit down for 15 mins and rejuvenate the way most people can. hope that this helps a bit. Mr. Scamp xxx (ps that is the name of my cat - I am actually a female in my 50's.

  • I have looked at the spoon theory, and tried that to explain the energy limitations to my friends - not very successfully on the whole to be honest but was probably the way I was trying to explain it and not knowing how many spoons I have! I guess this is the fundamentals of pacing - and I am still trying to get my head around this . . . I am told it is early days because I only got diagnosed in March. I am trying to have my 'work' explanation prepared, for example, to a senior manager, that I cannot spend 7 hours solidly working on one thing in one room with my colleagues. I think I am looking for words that describe fatigue that people can't dismiss - along the lines of - oh yeah, I know what you mean, I get really tired too - it's an age thing! .....

  • I put together a package for my boss (she hasn't read it, but hey ho, I can try): a table of my current symptoms - I included all of them like the IBS, overheating, fibro-fog, as well as the pain (and the locations and how much, and how often, and after how much activity/inactivity) and fatigue; the medications I currently take and the regularity; the Fibro Facts sheets from the FibroAction website (really helpful - I gave my Mum a copy of them too, and she understands far better now); and some abstracts of research papers on Fibro (also on the FibroAction website), explaining new developments, and giving some credence to our assertions that we are not making it up!

    It's a bit much for family and friends, but it's quite a good thing for work, and they can file it in your personal file for future reference. Keep a copy of whatever you give them though, in case they 'lose' it when the time comes to fight over something!

    Hugs xx

  • I'm planning to demonstrate this at work, so I'm going to be buying lots of plastic spoons in the near future! We're a clinical team, so this isn't just for selfish reasons, but also because I think that, as a team, we need to know how people with chronic pain and fatigue have to try (and sometimes fail) to cope with the demands that healthy people can just manage without thinking. It might take some organisation, but I'm determined to get it done.

    Gentle hugs xx

  • Oh crumbs yes I have many friends who tell me 'its an age thing'. I was diagnosed finally last July and am still trying to get my head round not being as fit as ordinary individuals in that I cannot clean the house through without knocking myself out for two to three days afterwards, things like that. When I have friends over I may take it a bit easier for a while then I try to keep up with them as they have their own problems - however bad backs etc. don't match the lack of energy - should I say the complete lack of energy, that exists along with the pain. Do not misunderstand me I think bad backs/hips/knees etc. are awful (I've had em all to some extent) but nothing matches the chronic pain/fatigue aspect of this disorder in terms of inability to get going or to keep going. I hate it! I completely understand how difficult it is to explain to someone else and how frustrating. I say things like 'I get brain fog and can't find the words I want which I can 'see' but not grab hold of to use' and people reply - oh that is an age thing! It is not, not exactly but how to explain that is impossible - especially with brain fog - oh we have to laugh (it hides the tears). sending you lots of warmth and compassion. Mr. Scamp.

  • fibroduckfoundation.com/fib...

    Thanks to Mr Scamp for direction to this website :-) I just checked it out - and think there are definitely resources worth having .....

  • Arthritis Research Uk have a pdf booklet called Fibromyalgia which is written in a simple easy to understand format - could be suitable to show to people however it may lack that reality human touch - ie the written word cannot always fully describe things like PAIN in all its variety of attacks, nor can it fully describe fatigue so bad you feel as if you are dying from it. or how about pain so strong you begin to think you would prefer to be dead...(this has happened to me and at that point I showed up at Casualty!)

  • A LETTER TO THE HEALTHY WORLD

    FROM THE LAND OF CHRONIC PAIN AND FATIGUE

    If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness.

    I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems.

    Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you

    WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

    1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

    2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

    3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

    WHAT YOU SHOULD KNOW ABOUT ME

    1. My pain -

    My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

    2. My fatigue -

    I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

    3. My forgetfulness -

    Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

    4. My clumsiness -

    If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

    5. My sensitivities -

    I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

    6. My intolerance -

    I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

    7. My depression -

    Yes, there are days when I would rather stay in bed or in the house. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

    8. My stress -

    My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

    10. My need for therapy -

    If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

    11. My good days -

    If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

    12. My uniqueness -

    Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    author unknown - but I believe that when I read this last year there was some permissions for reuse given, if not I apologise to the author. At this point too I wish to add that it was not me who gave the fibroducks site as a place to look, but I have now taken a look and it has some worthwhile support documents. best wishes. mr. scamp. xx

  • this is really good - thank you for sharing ... sorry about the ducks thing - blame it on the fibro! Lol :-)

  • This post is so good and I've copied it into my Fibro file. Thank you as it describes the symptoms to a T.

    Soft hugs to you,

    Renata...xxx

  • I was going to throw my 2 cents in but this covers it so much better than i ever could.I'm going to edit out the bits that don't apply to me and email it to my family who really do not get having chronic illness you can't ignore.

    Also it gives me a lot of much needed validation and reassurance that it's real and I'm fighting as hard as i can (without overdoing which would make it worse)

  • That is brilliant - it covers basically everything in a slightly amusing but completely upfront way! That is definitely going in my info file, and may possibly be used to a degree in my presentation.

    Sara xx

  • you are welcome - we all provide each other with support, encouragement and information which may be of some help and that has to be good. x

  • As a non fibro person, may I say that the post 'A letter to the Healthy World' very informative. I personally find this site also informative. I am not however, totally cluless. My Grandson (he lives with us) has CFS and my husband is disabled with numerous problems, and I am a Bowen Therapist.

  • I think it is refreshing to see that some people do want to know more about it, because people they care about have the condition. BTW what is a Bowen Therapist?

    Best wishes Suzy

  • Hi Suzy, Copy paste onto an E/mail & send this to family & friends, I find it's not to long winded so it only takes a few minutes to read & it really helps explain how we fibro suffers are feeling on a day to day basis.

    Take care. Gwen.

    Fibromyalgia Symptoms

    The three primary symptoms that are common to almost everyone with fibromyalgia are pain, fatigue and sleep disorders.

    Pain: Pain is usually the most prominent symptom of fibromyalgia. FM pain is chronic and widespread, affecting all four quadrants of the body, although not necessarily at the same time. Its intensity may range from mild to profound. FM pain tends to migrate, sometimes affecting one part of the body and sometimes another. Patients also report that their bodies ache all over, much like having the flu. In addition to the aching, FM pain has been described by different people as burning, throbbing, sharp, stabbing or shooting pain. Most people with FM also complain of feeling stiff and achy when they wake up.

    Fatigue: While everyone knows what it feels like to be tired, the fatigue experienced by fibromyalgia patients is so much more. It's a pervasive, all-encompassing exhaustion that can interfere with even the most basic and simple daily activities. Another feature of FM fatigue is that it is not relieved by rest.

    Sleep Disorders: Most people with fibromyalgia have problems with sleep. They report having difficulty getting to sleep, waking up frequently throughout the night, and not feeling refreshed when they get up in the morning. Studies have shown that FM patients spend little to no time in deep, stage four sleep because their sleep is repeatedly interrupted by bursts of awake-like brain activity. Since deep sleep is the time during which the body replenishes itself, fibromyalgia patients are not able to get the restorative sleep their bodies need. In turn, this lack of deep sleep can result in making their pain and fatigue worse.

    Other Symptoms: Most fibromyalgia patients also report a number of other symptoms and overlapping conditions, which may include allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.

    Who is at Risk for Developing Fibromyalgia?

    Adult women appear to be at greater risk for developing fibromyalgia than men or children, however, it can affect all ages and both sexes. Historically, 75 to 90 percent of people diagnosed with FM have been women, but new information may eventually change those figures.

    FM experts are finding that men often have fewer than the traditional 11 tender points required for diagnosis, yet meet all the other criteria for fibromyalgia. And what was once thought to be "growing pains" in children may turn out to be a previously unrecognised form of FM.

    Although fibromyalgia will probably still occur most frequently in adult women, we may soon discover it affects significantly more men and children than once thought.

    Another risk factor may be family history, as there is growing evidence of a genetic component in fibromyalgia. If someone in your family has FM, you may be at greater risk of developing it yourself.

    Fibromyalgia Causes

    In the past few years scientists have made tremendous progress unravelling the mysteries of fibromyalgia. Although there is still some disagreement as to the cause of FM, there is little disagreement that its onset is usually triggered by some form of trauma. The trauma may be physical, in the form of an injury or illness, or it could be an emotional trauma that produces severe, prolonged stress.

    Current research seems to indicate that some people have a genetic predisposition to fibromyalgia, although the symptoms usually do not show up until triggered by one of these traumas.

    One popular theory as to the cause of fibromyalgia is that a trauma or significant stressor turns on an individual's "fight-or-flight" response. This response, designed to help us function in an emergency situation, usually only lasts a short time, then turns itself off.

    But when the stress becomes prolonged, the fight-or-flight response gets stuck in the "on" position and the person's body remains in a state of high alert. Being in a constant state of high alert puts even more stress on the body. This results in, among other things, a loss of deep, restorative sleep, which in turn causes pain amplification throughout the body.

    Regardless of what initially triggers the illness, research has shown that fibromyalgia patients have very real physical abnormalities, including:

    Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems fibromyalgia patients experience.

    High levels of "substance P," a central nervous system neurotransmitter involved in pain processing.

    Low levels of nerve growth factor.

    Low levels of somatomedin C, a hormone that promotes bone and muscle growth.

    Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.

    Low levels of phosphocreatine and adenosine, muscle-cell chemicals.

  • P.S. Suzy keep one printed off for family friends & counsellor's & say "read this, it explains it all" & sit back while they read it in front of you hun. xxxx

  • Thank You. I find this really useful - and I am going to print some off today.

  • Your very welcome hun. :) xx

  • Hi Suzysparke,

    I posted this on another blog but it may be usefull to you to pass on to your friends and families so they can understand what you are going though and how to help you

    wikihow.com/Help-People-New...

    I hope it will prove useful for you? Many others have found it really good!

    Best wishes and soft hugs xxx

  • The Bowen Technique is a VERY GENTLE hands on holistic therapy that may help with a wide variety of conditions. Lindsey (admin) is going to do a blog on various therapies and I have sent her some info. So watch this space. I discovered it due to a frozen shoulder ( wouldn't go to a chiropractor as pain on pain is counterproductive in my opinion). Tried Bowen and was amazed at both how relaxing it is to receive and how effective it was for me. Husband tried it due to shoulder, neck, hand problems and he too gained a lot of benefit. A Bowen treatment can stop his stump spasms in their tracks! Win win! You can check out fibro and Bowen on Fair Oaks Bowen in USA. They did their own study.

  • The Bowen Technique is a VERY GENTLE hands on holistic therapy that may help with a wide variety of conditions. Lindsey (admin) is going to do a blog on various therapies and I have sent her some info. So watch this space. I discovered it due to a frozen shoulder ( wouldn't go to a chiropractor as pain on pain is counterproductive in my opinion). Tried Bowen and was amazed at both how relaxing it is to receive and how effective it was for me. Husband tried it due to shoulder, neck, hand problems and he too gained a lot of benefit. A Bowen treatment can stop his stump spasms in their tracks! Win win! You can check out fibro and Bowen on Fair Oaks Bowen in USA. They did their own study.

  • Hi Suzysparkle and Mrs.Scamp. Thanks for all the information.this will be really helpful to my family and to other families who have someone suffering from Fibro etc.Also thanks to Mills for the Bowan technique.I have a technique which seems to be similar called McTIMONEY.IT IS MY PHYSIOTHERAPIST/CHIROPRACTOR THAT ADMINISTERS IT ALONG WITH DEEP MASSAGE AND ACUPUNCTURE.After treatment you go home and rest in bed for l hour.It costs £60 per hour so cannot have it too often as do not have DLA.take care.gentle soft hugs to everyone.xx p.s. thanks also to cat53 for your input.

  • SuzySparkle; FATIGUE; means;; Extreme physical or mental tiredness,weakening of your body due to stress........than you have the other conditions that Mills has told you about....

  • I just explain it as feeling full of flu all the time and never getting any sleep. It is the only way I can describe it xxxxx Lin

  • we all get driven into some dark days but family and friends are a great help some of the time but some days all we want to do is stay indoors and cry.

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