I'm New (from the U.K.)

Discussion in 'Fibromyalgia Main Forum' started by Derek-A, Dec 27, 2002.

  1. Derek-A

    Derek-A New Member

    My name is Derek and I from South Wales in the U.K. I am a hypnotherapist (since 1976). Before that I was a musician.

    I was diagnosed with M.E. (CFS) in 1987. I loved my work often working nearly all my waking hours. Then my mother died suddenly and I remember thinking, "What's it all about? Why do we do what we do, only to die in the end?" It was a most uncomfortable feeling, but very profound - like I could really see the meaningless of it all (very Zen). It was the third bereavement I had experienced in as many years, my father, my brother-in-law and then my mother, which seemed like the straw the broke the camel's back.

    I expected to feel down, but when after a year of extreme exhaustion, I went for a blood test. Nothing showed up. Then it's a long, and probably familiar story until through a client of mine, I went to see a retired physician, specialising in food intolerance. I had a two-hour consultation after which he diagnosed M.E. I went on a "stone-age" diet and for the first time, started to feel a little more "alive".

    I have considerably cut down my workload but sometimes, feel I can "take on the world" again only to have a stark reminder of my condition, that this type of "heavy" activity is not to be.

    Still, this is probably such a familiar story to everyone, that I won't go on about the symptoms. I take many supplements now, keep a diary of my activities/diet and practice Zen meditation (zazen) which helps immensely.

    I have only just found this site and look forward to interacting with you all,

    Best regards,
  2. tandy

    tandy New Member

    I wanted to say hi and welcome you!! I'm a mom of 3 boys-my oldest shares your name,derek. So glad to hear you have a handle on your DD or have at least crawled out from under the rug.LOL I'm still under the rug.
    So what have you found to help your condition? I take a multi-vitamen,cal-mag,and pain releivers.I tried antidepressants for a sleep aid but did'nt like them.Now I use benadryl when I feel the need(not every night).
    Glad you've joined in-I hope to hear from you.
    Warm regards,
  3. s43

    s43 New Member

    to this board,it is a great place plenty of information.I am from South Wales,there are not many of us on here.this is a great sitewhere you can find out a lot of useful information.Iwas diagnosed in sept 2002 after about 5 years of constant pain and suffering,i have got fibro.Anyway welcome its nice to know someone else from wales,i am from Swansea. Regards Sharon
  4. coyote

    coyote New Member

    Hi,Derek. I am new to this list also, and think it is awesome. There were several things that led up to my FMS, including several losses like you have experienced. Seven family members passed away in four years. Most were aunts and uncles. We were going to funerals every six months or so. There were other important losses also, which, caused chronic depression and grieving for many years. I do believe this partly brought on the FM, even if it didn't cause it.
  5. Shirl

    Shirl New Member

    Hi Derek, welcome to the board. Glad you have found us, and hope you keep doing well.

    Hard work and Fibro do not mix! I am doing fine, but did a little strenuous work yesterday, and the old back and shoulders are giving me a bad time today, not a major Flare, but the pain is going to go on for a few days till those muscles heal.

    Again, welcome to the board.

    Shalom, Shirl
  6. Derek-A

    Derek-A New Member

    Wow what a welcome! I’m not quite sure how to respond to multiple replies, so I’ll respond to each message separately

    Sorry about being a little late, but I’ve been going through the mill over the past few days. …

    One thing I’ve noticed this condition seems to generate is a sort of fear of change. Fear of deviating from the norm. So I have kept the same car for the last ten years and it was well overdue a change. On Friday, I decided the time had come to change and I have done it, but had a severe headache since. All the “what ifs” in the world have been coming up. Cars go wrong, I knew mine inside out and could fix most things if they went wrong. Now I am faced with an ”alien” LOL.

    Hugs back to you Sunny . I can certainly identify with your difficulty at Xmas, because my mother actually died on Xmas Eve. Hours before she died she was out doing some last minute shopping with my sister – mild heart attack they said at the hospital, yet hours after returning home from visiting, thinking she was going to be fine, I had that devastating phone call.

    I think fibromyalgia is slightly different to M.E. although the symptoms seem practically identical or maybe they are one and the same thing. I think it may be that it is progressive, but if I stick rigidly to my “no sugar” diet I cope much better and symptoms can practically disappear - but I do so love Chinese food (MSG!) and of course hidden sugars. I think it may be like a reveller knowing full well that there’s going to be a hangover the next morning. Which, incidentally is something I dare not do – my hangover would last for a week!

    Your book sounds very interesting, I will look it up on Amazon. Books I use mostly come from a philosophical point of view. I am very into Zen practice and it’s main point is focus. I.e. instead of trying to escape from the pain, do the opposite and focus. Now sometimes it completely vanishes but other it does not. It’s a paradox, if you are genuinely focusing on the pain just to observe, it will go, but if you are focusing on the pain in an attempt to make it go, that is not *true* focus and the “paradoxical intention” does not work. Anyway, I’m probably “rabbiting” on too much now, but if anyone’s not familiar with the technique and is interested I will be pleased to answer questions on it.

  7. Derek-A

    Derek-A New Member

    Hi Tracey,

    > So what have you found to help your condition?

    Yes, I too take a multi vitamin and mass doses of vitamin C when I'm particularly (up to about 50 grams a day). My condition has caused me to study nutrition and whilst some is absolutely useless what I have found beneficial is Vitamin C, B1, St. John's Wort, Cal-mag. Some pain-relievers in a particularly intense "attack", but sometimes they can make it worse - it could be that they tend to dehydrate, so I need to stay near a bathroom and drink loads of filtered water. I am quite sensitive to chlorine, but fine filtering water through two filter jugs makes a difference.

    Sleep disorder, yes. I sleep around 5 hours and wake up. It is then that I pracice my Zen meditation in half lotus position. Upright is important because (apparently) the chakras are lined up, one on top of the other and "chi" energy flows through them easier. "Chi" is what is stimulated in acupuncture. I have tended to avoid medication for sleeping because it tends to make me feel worse in the morning. It doesn't seem to aid sleep with me, but knock me unconscious - which is different to natural sleep.

    Nice to meet you too Tracey, we will speak again,
    There used to be a natural remedy called Tryptophan but was banned in the U.K. which is just my luck!

  8. Derek-A

    Derek-A New Member

    Hi Sharon,

    I am originally from Swansea. Born in Fairwood Hospital, we later moved to Sketty where I grew up. My three sisters still live around and about there. We moved then to Manchester in my teens, because of my Father's business but I was so glad to get back to South Wales.

    I can sympathize with your 5 years of misdiagnosis, because I was having the same thing. I was even accused of malingering! That hurt, because I may be a lot of things, but I am certainly not a malingere.

    I agree this looks like a terrific board. Sharing makes a tremendous difference.

    speak later,
  9. Derek-A

    Derek-A New Member

    Hi Jody,

    > Do you use hypnotherapy for your pain? Does it help?

    Yes, hypnotherapy can help some people, but as I mentioned in earlier posts, I lean towards Zen meditation - which is a kind of self-hypnosis, but focused more on acceptance of what is there than trying to shift it. Then (sometimes) by the "law of paradox" the pain can disappear - but the intention to focus needs to be absolute, free from intention of getting rid of pain, if that makes sense..

    > You'll find this board very supportive. Keep coming back!!
    > Consider Yourself {{{HUGGED}}},

    Thank you so much - here's a Welsh {{{Hug}}} back for such a warm welcome.


  10. Derek-A

    Derek-A New Member

    Hi Coyote,

    Yes, those funerals seemed never ending to me also. I seemed to cope with my dad's strangely enough. It seemed as if he was still with me for a while, but then my eldest sister's husband, who was like a second dad, got stomach cancer and a year to the day, he died a terrible death, then my mother's brother a few months later, then my mother- it seemed my system screamed "enough is enough!"

    The doctor I eventually saw, reckoned I had mild M.E. since a bad case of Red Flu in 1980, but the bereavements really brought it to the surface.

    Being a therapist myself, I was handling the grief OK. I was feeling low mostly because the pain was not shifting. That was what I found hard to explain to others around me. I did not have clinical depression. I had persistent mouth ulcers and was on the verge of having all my fillings changed but discovered a mouthwash called Corsodyl from Cardiff Dental hospital (apparently created in Cardiff University hospital). I rarely get them now and left my fillings in place.

    The most useful thing I have found is to be willing to accept observations from my wife - there is tendency to go into denial that I am over-doing things etc. when she tells me. "What would you tell your clients?" is all she has to say and I will take a rest or whatever. It is very importand and I am very fortunate to have a supporting partner.

  11. Derek-A

    Derek-A New Member

    Hi Shirl, Thanks for your welcome. Yes, I am absolutely sure I will get benefit from this board.

    Reading your message, I think I've just realised what I've done. I cleaned and polished the car to trade in all day Thursday.. It's harder work than I thought. My sister called in and asked why on earth I had not taken it to a valet firm. My answer - I wanted it done right! I enjoyed doing it at the time - now three days later, I am still paying for it.. Will I do it again? Probably LOL - that's just the way I am. I love to get work satisfaction.

    Has anyone ever found the top of their spine at the base of the neck goes like an icecube? That is what happens to mine. Applied heat helps.

    Other things I use, I forgot to mention on previous posts are, Acuhealth (electro acupuncture machine - invented by and Australian acupuncturist) and a TENS machine. They work with various degrees of success.

    I think I've replied to everyone, but just thinking, I might have to give more general responses - I seem to have done a lot of typing!

    Thank to all for your welcome..
  12. pam_d

    pam_d New Member

    Glad to meet you here! I have FM, and just started seeing an allergist about 2 months who specializes in FM/CFS patients, and I have found out a lot of stuff about the role allergies plays in our symptoms. I had seen allergists for years, but not one who really specialized in this stuff, or one who tested me so thoroughly---I have had inhalant allergies my whole life, but would've sworn I had no food allergies. Lo and behold, I find I'm seriously allergic to cow's milk & wheat, among other things. Plus deficient in some vitamins & minerals, too much of others----now comes the difficult task of how to remedy this! Are you finding the dietary changes difficult? I am seeing a difference in how I feel, I'm on probiotics, enzymes now, plus this doctor went over every supplement I take with me (I don't use meds). I do think it's all helping, but the dietary changes do require real organization & planning, & true commitment, don't they?

    I'm glad to hear of someone else with food intolerances who is making changes that are having a positive effect! Hope it continues for you----I'm just in the beginning stages with this process, but hopeful! Glad you are here, this is a great place for resources & exchange of ideas.

    Take care,
  13. Annette2

    Annette2 New Member

    Welcome to the Board! I don't know if I've ever met a hypnotherapist. I've never been to one, but I did learn some self-hypnosis years ago. I don't know how well I know it, but when I'm in bed and "thinking too much" I try to apply it. I have fibromyalgia (diagnosed 5 years ago) and am still struggling. It seems the more time that goes by, the more symptoms I have. As soon as one thing goes away, another crops up. I can't win. Right now I'm recuperating from surgery so I can't exercise yet. But that's a big help to me - hopefully I'll be back at it soon. As soon as I go back to work I want to buy a yoga tape. Maybe that will help me relax and feel better. Anyway, I'm glad you got a warm welcome here!

    Annette2 :)
  14. Derek-A

    Derek-A New Member

    Hi Pam & Annette2 :),

    Yes, it is amazing how allergies and intolerances show up. I too, did not think food had anything to do with it. The dietary changes were at first like a nightmare. I had a very sweet tooth and loved all sugar based foods. In fact I was addicted to them – something which I found out later was a near sure sign of an intolerance. It is not too bad now, although sometimes I slip and have something sweet – but that is usually fructose (natural fruit sugar) based and not cane sugar.

    The specialist I consulted with told me that he had been part of a team in the second-world war to ascertain the dietary needs of the population because cargo ships carrying sugar cane etc. was being sunk on their way to our country. What he found was that the population, growing their own vegetables and eating practically no sugar at all, were far healthier – but, he reckoned, this information was later suppressed because of the huge wealth generated by the sugar industry. He put me on what he termed a “stone age” diet. Nothing at all processed and all organic vegetables. I immediately experienced withdrawal symptoms that lasted just under six months. They became quite severe, but I was determined to remained committed to the diet. My commitment surprised the doctor because, he said so many gave up at the first sign of discomfort – but I believed in him and put my trust completely in him. He said also, that going sugar free would starve my candida and eventually render it ineffective. All I can say it that is worked. I accept that my M.E. will never go but I can live a near normal life. Oh yes, one other thing.. I found whenever I “tested” a food, a small amount of suspected allergen, I would go into denial. – “no I’m OK with that” and sometimes I would have to test another 2 or 3 times before I was convinced..

    Hi Annette2 :)
    “Thinking too much” is a great problem in self hypnosis. The best way to handle it, is not to cling to the fact that your mind has wandered. Let it go, it happened, sort of thing – then bring your mind back into focus, visualising the way you really wish to be.. Try to do it “multi-sensory” – imagine the smells, sounds, warmth, feelings as well as just the image. A “Zen” influence is to place your hands on your lower abdomen (below the navel) and as you inhale, imagine a lung in the lower abdomen, expanding as inhaling, contracting it as exhaling, focusing strongly on the breath. Counting those breaths is also useful for focus.. inhale 1………, exhale 2……… inhale 3………….. exhale 4…………. Etc up to 10, then go back to one again. Trying to think only of the count. Allow other feelings to coming in by acknowledging them, the quickly go back to your focus again.

    Well, I hope I’m not going on too much and that some of the information I share about my techniques prove of some value. And thanks everyone, once again, for sharing your experiences, it’s most helpful to me too.

    Derek 