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ME, Chronic Fatigue Syndrome & Fibromyalgia

Discussion in 'Fatigue & Pain Disorders' started by Anahata, May 21, 2004.

  1. Anahata

    Anahata New Member

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    Firstly - do not despair!

    It's not all in your head as has been the mainstream view of the UK medical establishment for many years.

    The Government working group concluded last year concluded that these are 'bone fide' organic diseases & not psychological or phsyciatric deseases, although the majority of the UK medical system persists in treating them as such.

    In time I will post a link to this report & the background behind it, but in the meantime you may find help & support in the Threads on this forum and Allergies & Arthritis forums, as something may ring true there.

    From a symptom point of view - I believe they are related & from a physioligical point of view I suspect they are linked via underlying food & environmental sensitivity, intolerance/allergy.

    Have lots of tips for ME & Fibromyalgia & in time will try & get them together and post them here, but here's a couple of key ones to try.

    * Sleep with your legs raised, making sure you support behind the knees, so as not to over extend them.

    Studies have showed that folks with fibro have a greater body water content, but less blood volume. Other studies have shown that there are certain common areas of the brain that are not getting a good supply of blood. Some of the classic symptoms support this - i.e. poor memory, brain fog (inablility to focus & concentrate), poor quality of sleep ( that no drug as yet has been able to improve), etc.

    Sleeping with legs raised will encourage better blood perfusion to those areas of the brain.

    * Regularly get your thoracic spine moving with stretches in all directions (flexion, extension, side bending & twisting) & manipulation i.e. osteopathy (although an osteopath should do much more than just manipulate).

    I can pretty much guarantee that the thoracic spine will be inflamed & you may not be aware of it (this area is a low priority when it comes to pain sensory input to brain). Also, this can create havoc with the function of your internal organs, although it's a bit chicken & egg. Also, the muscles become fiberous due to their tendency to fatigue easily, so they try & work anaerobically (without oxygen) & they shorten as a compromise, as the little energy in the system is prioritised elsewhere. Keeping moving will improve circulation & reduce inflammation, so even if it's the last thing you feel like doing - get moving, but don't over do it! Little & often is the key.

    Lots more stuff to come - prompt me if necesary.

    Good luck & don't give up! ;)

    Andrew.
     
  2. Anahata

    Anahata New Member

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    RE: ME, Chronic Fatigue Syndrome & Firbomyalgia

    There is a huge overlap with these problems - ME is more fatigue based & firomyalgia is more Pain related. A clear distinction can only be drawn with the few cases that are at the extreme ends of the spectrum. [&o]

    A diagnosis may be more likely to be related to which 'so called' specialist they see. i.e. rheumatology adopted fibromyalgia & the diagnosis weighs heavily on a certain number of points being tender to touch.

    So if they are referred to a rheumatologist & they have enough tender points in the right place, then they have fibro! [&:]

    I suspect most would agree that in this day & age - this is a farce of a diagnosis.[sm=banghead.gif]

    As an osteopath - I admit my bias, but as such & with osteopathy having good research in help ME, then one might wonder why I would be saying what I am about to. [8D]

    Having been a long term sufferer of such a condition for the larger part of my life, I was able to control my condition with regular osteopatic treatment & eating a very restricted diet. A treatment called NAET came to my attention via a patient I was treating also with ME/ Fibro. He was fairly affluent & soon tired of lack of orthodox medical help, so read up & tried everything that sounded like it might help. :eek:

    The only two treatments that he believed was helping was osteopathy & NAET. After a while and on seeing the improvement in him, he convinced me to give it a try, so I did. [sm=dance.gif]

    After only a few NAET treatments - I knew that it was, finally getting to the root of the problem. As I am, as I am, then I started to suggest to my existing patients with fibromyalgia ME / CFS to the NAET practitioner down the road, as I felt that they would do better, quicker & for less expense with him. :)

    Shortly after he moved up to Scotland leaving us somewhat in the lurch. I had always promised myself that if I found something that would sort me out, then I would go & study it myself. So now I had little choice in the matter, so I did.

    Candie, another HP moderator, friend, business partner & colleague, was also so impressed with the changes in me that she insisted on doing the first UK course with me, so off we went to London. Then the South of France for the advanced course & we'll be heading down there again for the next advanced course with Dr Devi Nambudripad the originator of this treatment system. :D

    To Sum Up

    In a nutshell my professional opinion is that these conditions are one & the same, which in the US they would call multiple food/chemical sensitivity.

    Different people react different, because they are, well, different & they react differently to different substances, foods, chemicals, environmental allergens, etc. [sm=scratchchin.gif]

    To use the word in it's broadest sense, they have multiple allergies, but one would include sensitivities & intolerance. [:eek:]

    No I am not assuming that everyone's problem is the same as mine, but between us we have treated enough people now to confidently say this. We are not saying that this is the only solution, but would urge you to at least look into it. UK practitioners are still thin on the ground, but you can check the English version of the official Euro site database for someone near you. http://www.naeteurope.com/gb_default.asp ;)

    Short of getting treatment, what may help is getting a VEGA type allergy test from a recommended tester, so you have an idea of what to avoid. ;)

    Failing that, the main suspects, include:
    Sugars (any or all forms), grains (especially wheat & other gluten grains), yeasts/molds, vitamin C ( and other acids, citrus fruits, etc), caffeine, etc.

    Symptoms that relate to these include:

    Proneness to inflammation, joint, muscle & spinal pain, arthritis, brain fog (inability to focus), listlessness, apathy, depression, mood swings, irritable bowel syndrome (swings of diahorreoh, consitpation, excessive wind, etc), fatigue, irritability, insomnia, cravings for those very things, poor quality of sleep, neshness (being overly sensitive
     
  3. Talisman

    Talisman Banned

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    RE: ME, Chronic Fatigue Syndrome & Firbomyalgia

    Thank you Andrew, you are no doubt already familiar with what has been going on with Colin (thankfully things are now beginning to be a lot more manageable). All of what you have written here makes perfect sense, and will I am sure will be very useful for lots of people here.

    June
     
  4. Newcastle coach

    Newcastle coach New Member

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    I was diagnosed with FMS in 2001, and am still coming to terms with the effect the condition has had on me as a person and the way it has impacted on my life.
    One of the barriers I found was in others especially at work who think that because I look 'normal' there is nothing the matter with me.
    We each are invidivuals and what works for one may not for another.I found that life coaching helped me deal with things, the power of positive thought is great. So much so that I am now a coach myself, the ability to work the hours that suit and regular breaks slotted in the day have been vital to my health, wellbeing and ability to continue to work.
    Aly
     
    #4 Newcastle coach, Jan 14, 2008
    Last edited by a moderator: Jan 15, 2008
  5. Sarahk

    Sarahk New Member

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    Hi Newcastle Coach.

    Welcome.

    I understand where you are and have come from.
    I went through 7 years of intense, and downright scary, times.....and I am still coming to terms with it all as well.
    I still have to watch my energy levels very carefully as I still tend to overdo it at times.....and then pay the price by having to retreat and rest.
    However, I am getting better!

    As you quite rightly say, it is 'hidden' from others as although we look 'normal' on the outside, what is happening on the inside is not deemed as 'normal' at all.
    Prejudice and Judgement were the hardest things to overcome.

    But I came out stronger as I was turned inside out and upside down and, looking back, I am glad I went through it even though, at times, it was quite horrible, because it brought me to a greater inner knowledge and esteem, as well as showing me not to judge by appearances and what people can sometimes do, because we cannot know the inner life of anyone, but can only to try to discover our own.

    Congratulations on becoming a coach, it is very rewarding work isn't it.
     
  6. Newcastle coach

    Newcastle coach New Member

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    Hello SarahK,

    You are so right about the times being intense, and downright scary times. I found FMS to be like a rollercoaster ride, each time I appear to be out the other side whooah off I go again.

    The thing I find really hard is the fatigue and very low energy levels. It is so easy to overdo things, I am mother to George, a fantastic beautiful but VERY VERY active 4 year old. Once those engery levels come crashing down it is difficult to get a rest.

    It is hard to identify some of the triggers however I know now however bad the fatigue and pain gets I will come out the other side and just need to find the key to get me back on track.

    As I tell people about my condition they often ask if I am in pain at the time, how often have I heard them say 'well you dont look like you are', what they dont see is the person sitting crippled in pain in the car unable to get out and go to the front door at the end of a long day, struggling to play with our kids cos we are in pain, unable to get up in the morning, coping with the brain fog each day, I wont go into the irritable bowel / bladder etc ...

    Whilst I may not be an 'active' mum, I do everything I can to be a loving caring understanding one who is always there for my girl when she needs me.

    I'd like to hear from people who have found alternative therapies to help. I am wary ... many practitioners claim to have a 'cure' for FMS, but havent seen one yet that offers a money back guarentee!

    Aly

    ps great website.
     
  7. brown1e

    brown1e New Member

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    Hi I found this website to be soooo full of information that I confess I haven't worked through it all yet http://www.drmyhill.co.uk, but darn, seems good, particularly her treatment plan which you could download as a pdf if it's still on there, so hope it's helpful to someone out there. Also I keep returning to the book 'The Perrin Technique'. Sending love to all whose lives are affected by the symptoms. Keep searching x
     
  8. Principled

    Principled Well-Known Member

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    Hi Aly, yes it certainly is a great website - I've been posting here since 2001, so am one of the very old girls! :eek:

    No money-back guarantee, but for the price of a book, you could find your rightful inheritance of freedom permanently!

    I have relied on the understanding of our perfect spiritual nature as taught in Christian Science for all my needs, including health care and have never been disappointed.

    Here are links to three healings of conditions related to these pages and I hope someone gets some encouragement from them:

    With the ME one, I actually know the practitioner and she told me in detail of this wonderful healing. The author's husband was going away for 10 days (I think it was) and as she was unable to move at that time, my friend took her in. At the end of 10 days, she ran down the stairs to welcome her husband! Afterwards, the simplest things, like going shopping together at the supermarket gave them such joy.


    'I could be healed'
    Fibromylgea


    Chronic fatigue syndrome—healed

    A life transformed Lupus

    There are many, many medically diagnosed diseases and conditions that have been cured through a higher spiritual understanding. If you go to the search boxes on both www.spirituality.com and www.christianscience.com, you'll be surprised at how widespread this method of healing is.

    Many people don't ever see a practitioner, but are healed simply through the universal spiritual laws described in Mary Baker Eddy's book Science and Health. (You don't have to be a Christian either!) One HP member found that a chronic backache she had had for 13 years disappeared before she had even finished the first chapter and later she found that she had given up smoking without even being aware of it!

    Love and peace,

    Judy
     
  9. Ihluria

    Ihluria New Member

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    Ive just been diagnosed with post viral cfs. Was very interesting to read all the above posts and that it may (most likely does) have a lot to do with diet. I also agree that your spine being out of alignment could and probably does have a great effect on your health. I would be interested to know which area of the spine relates to the adrenal glands/endocrine system. I have suffered with my right hip for ages. I visit a chiropractor but dont think I have been to an osteopath yet? What is the main difference I wonder? I will google it and find out. I also firmly believe that on the cfs side of the illness umbrella, it must have something to do with the malfunction or failure of the adrenal glands, and possibly the entire endocrine system. My post viral cfs has been bad. I went through a stage of about 2 months where I could barely get up out of bed, and it has very slowly improved but I overdid it over xmas/new year and relapsed to a state of fogged up brain and inability to actually do anything except lay on the bed or on the couch. Having discovered a link to the adrenal glands with this, I started self treating myself with reflexology over the endocrine system, and having a great interest in acupressure, I started self treating myself with a few points relating to fatigue. Within 2 days I noticed a change in my energy levels and today, the 4th day, I am much improved. Even had 3 guests over for tea this evening and I'm still going. I may have an intolerence to wheat/gluten products too, so have cut back on those kind of food products. I am a reflexologist but have not practiced any therapy for ages - this is really bringing me back to it and I am keen to start up again in this line of work.

    I have had enough of orthodox doctors / gp's in todays world. So many of the symptoms I have mentioned were never entered on the doctors record. I discovered this by chance. When I mentioned the possiblity of post viral cfs (having spent 4 months previously trying to figure out what it could be and failing too) the gp looked at me and said " I dont think so, you look fine"!!!!
    It took an ENT Specialist, having ruled out tumours, MS, Motor Neurone, and God knows what else - to say to me "it seems you have post viral cfs".
     
  10. Firebolt

    Firebolt New Member

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    I've got CFS too

    Hi,

    I'm new to this site and just joined this morning. Been interesting reading all the comments about different subjects but this one is very valid to me because I was diagnosed with CFS last year and i'm really struggling with it. I work in a womens homeless hostel which is very demanding and chaotic but have to bring the money in dont i. I try really hard to rest outisde of work and although i have a beautiful boyfriend who does lots for me, i feel tired and grumpy and pretty much depressed most of the time. I find it really hard not being able to exercise much and i am also overweight. I strongly believe that i am allergic to some kind of foods. i am definitely allergic to animal hair and dust as i sneeze all the time. I am addicted to sugar - i can give it up when my mind clears but i cant maintain giving it up and then i end up bingeing again and crying all over the place. Its all a bit of a mess at the moment but am hoping that something will click somewhere along the line. I have seen a nutritional psychologist, been to slimming world and weightwatchers but i reckon i need to give that vega allergy testing thing a whirl if i ever have any spare money. Sorry if this seems like i'm moaning, i told you i'm in the throes of depression at the moment and all my thought patterns are being negative. I did however build a fab snowman at 9am this morning. His name is Humphrey. :eek:
     
    #10 Firebolt, Feb 5, 2009
    Last edited by a moderator: Feb 5, 2009
  11. Cheryl Barclay

    Cheryl Barclay New Member

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    #11 Cheryl Barclay, Aug 10, 2009
    Last edited by a moderator: Aug 10, 2009
  12. stephen jeffrey

    stephen jeffrey New Member

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    Hi all, whilst searching the web for evidence of massage therapy helping those with chronic fatigue, fibromyalgia ect, I came across these sites that I hope you will find helpfull.

    www.theperrinclinic.com for chronic fatigue syndrome.

    www.fibromyalgiasyndrome.co.uk

    Regards steve
     
    #12 stephen jeffrey, Aug 21, 2009
    Last edited by a moderator: Aug 21, 2009
  13. traceyjohnson7

    traceyjohnson7 New Member

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    i have both
    m.e is not just fatigued based, but you constalty feel hung over and flu like, brain fog as the E stands for 'Encephalomyelitis' meaning white brain cell inflamination. so your life is a constant blurr and you are very weak & have many food intolerances.. its hell.
    fibromyalgia is the central nervous system.. yes its painful.. i find the M.E WORSE! as you cant even think and constantly feel ill...
    but i still havent given up!
     
  14. traceyjohnson7

    traceyjohnson7 New Member

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    yes!! true the fibromyalgia assosiation reccomend massage!!
     
  15. holisticbabe

    holisticbabe New Member

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    Personally speaking I find with Fibromyalgia, I see someone said ME is fatigue and this is pain based but I have both. Im in a lot of pain but Im also knackered all the time. The best way I have to explain it is this. Im in pain all the time. Sometimes not so much pain sometimes a lot more pain but always..... pain.. and tiredness... coupled with clumsey, lack of sleep and some depression I tend not to admit too....



    paula
    xxx
     
  16. traceyjohnson7

    traceyjohnson7 New Member

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    bless you paula, i know the feeling, it really annoys me they call M.E cronic fatigue syndrom!! i wish that was all it was.. good news is M.E does eventually go..
     
  17. massagembs

    massagembs New Member

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    massagembs

    I went to the GP (a new one) regarding my fibromyalgia (not diagnosed) and other related symptoms: always tired, sore muscles, tinnitus, poor sleep, brain fog etc. It was such a shambles he said "Well I dont like to give these things a label" and "What you are describing, most of the general population have". What rubbish! He also mentioned psychosomatic pains! and went on a rant about exercise etc and said "What else do you do apart from being a mum"! This guy has no listening skills. I was going to ask him about MS as it is in the family and I have the symptoms, but I decided not to. The ironic things is I am a holistic therapist: massage, aromatherapy, reflexology etc and a counsellor-so I am fairly clued up. All I needed that day was him to acknowledge my reality, my experience and say we could look into things...
     
  18. holisticbabe

    holisticbabe New Member

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    I went to doctors for years and was told everything form I had growing pains to it was in my head before I found a doctor to diagnose me with fibromyalgia. then I moved house and had to change docs to be told by the new one (and Ill NEVER forget).... " fibromyalgia is a bandwagon for lazy doctors to jump onand hand out painkillers without sourcing the problem" to be honest its part of what got me into holistics in the first place as I had to find something to help me.

    good luck

    Paulaxxx
     
  19. CarolineN

    CarolineN New Member

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    Hi Paula and everyone

    Yes ME/CFS and FM are awful for those living with it - I have both but am much improved now thank goodness. I know I have said it before, to my mind Dr Sarah Myhill (lots to read here) has the best information available - apart from the illness specific websites. Her information is based on biochemistry and she explains the whys and wherefores of the problem of why the body starts to shut down - the degree to which one has the problem is often the result of how long the person has battled to keep going through the illness, unless it is the result of viral attack (PVFS) involving the mitochondria - the power-generating units inside cells. Often those with the worst problems are those who strive most in their lives and it becomes very frustrating and depressing when one is obviously going backwards! It is vital to learn to pace oneself to avoid energy depletion - otherwise it can take even weeks to recover one's energy - well explained by Dr Myhill.

    Other than Dr Myhill, those doctors who might be helpful are the ones who practice Functional Medicine, like Dr Georges Mouton. FM doctors seem few and far between unfortunately - and all have to practice privately because the NHS doesn't recognise their format, even though it is based on the body's biochemistry! Other practitioners include Nutritional Therapists, Naturopaths, and help can be obtained from acupuncturists, homeopaths, etc.

    As everyone is individual, there is no universal cure, but following Dr Myhill's format seems to get results - and the sooner it is dealt with the better - things tend to deteriorate further with time. Food intolerances certainly seems to have a hand in many people's situation.

    Unfortunately there was an article published in the early 1980s in which the doctor concerned stated ME/CFS was a psycological problem (yuppie 'flu) which has done enormous damage to the understanding and treatment of these illnesses. I have just seen a client who was told by her GP that she is too old to have ME!!! There is enormous misunderstanding out there and one just has to keep at it to find a doctor who has some understanding of what we are going through.

    There is a little light at the end of the tunnel in that NICE has stated recently that ME can be as serious as MS - but it hasn't made much difference so far!
     
  20. ptrbrown1

    ptrbrown1 New Member

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    Metals and chemical, foods and toxins

    Please consider the work by Adrew Cutler, research scientist who wrote the book Amalgam illnes, web search, anything. Just do it.

    Sorry to be so blunt but the subject is too complex to be explained on this web site, so if anyone is in need of answers, here is a good starting point.

    Pete/
     

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