For Klutzo and Mikie

Discussion in 'Fibromyalgia Main Forum' started by lucky, Jan 4, 2003.

  1. lucky

    lucky New Member

    Hello, Klutzo and Mikie;
    Living in Toronto, and reading Spedding's postings again and advertising Dr. Smythe, I thought it might be of interest to you to read how this rheumy believes in his cure of FMS.
    On Oct. 14, there was an article in our 'Globe and Mail' which read 'Causes of fibromyalgia remain a medical mystery' which also had some of Dr. Smythe's own version on FMS.
    I have a neighbour by the way who has been treated since I was diagnosed with CFS/FMS 15 years ago, and she still is NOT better. When I heard of her pillow treatments then being so ill myself, I was more than stunned. I try to keep an open mind to any suggestions I can get, but this one was not one of them.
    His paragraphs read as follows:
    " highlight this, Dr. Smythe says that when a person touches a finger to a hot stove, they feel the pain all at once and recognize that the pain is a burn and not a cut, and the person can place the site of injury within a fraction of an inch.
    This happens because humans have a large area of representation of their hands in their cerebral cortex and consciousness. This facility is essential for all of the complex interactions which permit skilled eye-hand co-ordination, he says.
    But none of this is true if the pain arises from a structure deep in the body. We cannot feel the location of the tip of our spleen, and similarly are unable to feel the fifth bone in our neck, or the fifth bone in our low back. They are not represented in our cerebral cortex or in consciousness.
    Therefore, Dr. Smythe continues, the pain people feel with fibromyalgia is what is called 'referred pain' resulting from some sort of neck or lower back injury or irritation.
    For people with fibromyalgia, 'pain arising in these structures will be misinterpreted as perfectly innocent tissues that shares the same nerve supply, he says. In fact, the perceived location may be at a considerable distance from the unknown ssite or origin.
    Essentially, the brain puts the pain in the wrong place. Depending on the original source of pain, a person with fibri might feel aching in one place, in an other a sensation of a wearing tight band. They might even feel as though their eyes are dry, gritty or burning.
    If it is in the back of the chest, commonly it feels like a burning in the upper chest or a feeling of heaviness, he adds. This is often misdiagnosed as asthma.
    With referral pain, Dr. Smythe says a person will also get referred tenderness. Referred tenderness is something that one doens't even know exists until a patient visits his office.
    They have no idea they are going to be tender until my thumb hits sthe spot. The location of these sites are quite sharply localized and extresmely predictable in location.
    If the source of referred pain is coming from the neck, the pattern of tenderness will be very specific, he adds. Similiarly, this will happen if the pain is coming from the lower body.
    The general principle of fibromyalgia treatment is relatively easy, Dr. Smythe says. The ultimate goal is to achieve a high level of physical fitness, because 'that's what makes you tough and if you are not fit that's what makes you vulnerable.'
    However, there is real difficulty in achieving this. If a fibromyalgia patient neglects to first look after their neck and back, they don't get better.
    So, we start by identifying the problems and teaching them strategies to support the lower back throughout sleep and teach them postural strategies to avoid the lower back when is is sagging into a sway-back position.
    From there, Dr. Smythe prescribes physiotherapy and exercise. But the process is long.
    When a patient returns to him after six months, they will report that they are feeling better, but all 'the basic patterns in their symptoms are still there.' Frustrating, to say the least. On the upside, when Dr. Smythe performs a physical examination, he will find that their points of tenderness are gone.
    And this is where patience on the patients'a part is critical. They must remember, he says, that the tenderness goes before the symptoms do. The process is similar to a person who was in severe pain with a gangerous leg. For as long as a year after the leg was amputasted, the person will still feel pain in the leg that is no longer there even through the source of the pain was removed.
    This is due to the changes in the nervous systems in response to chronic pain, he adds. It takes about a year for the nervous system to learn that the vulnerability is gone.
    Dr. Smythe isn't convinced for example if it is due to virus, infection. The medical profession does, but the question is 'does the experimental, controlled evidence put down by others support that or not? there has been millions spent to see if it is sthe EBV. The answer is no. It is not a virus, Chronic lime disease was a biggy in the last year. Again, the answer is no."
    [This Message was Edited on 01/04/2003]
  2. klutzo

    klutzo New Member

    I had already read all of this and more, on Spedding's website, but others may be interested in seeing it.
    I do find some interesting points in what he says. The info I read said that C5,6 & 7 were a prime place for this pain sensitization to start, and that is exactly where my starting injury was, at C6 & 7. This may turn out to be an answer for some of us but not others. The current thinking among the "experts" seems to be that FMS is an "ends" that can be caused by many different "means", or at least that is what the World Health Org. has said.
    The info on Spedding's website also says FMSers should not walk upright, but lean forward and suck their guts in, the way you would walk if carrying a heavy backpack. I recently had to have lumbar spine x-rays from what my new treadmill did to my lower back. I followed the instructions, which were to walk very straight on the treadmill and never lean forward....maybe I shouldn't have, who knows!
    I have already gotten great relief from my neck and shoulder pain simply by changing to a water pillow, which totally supports my neck and moves with me as I turn and roll over, so I can attest to the difference a pillow can make. I looked at the picture of the major pillow used on Speddings site, and it looks like it supports you all the way down to your waist, or just about. BTW, he is not selling anything there, just providing info. He does say that it takes a very long time to get well this way, and that if you spend even 30 mins. per night sleeping the wrong way it can negate your progress.
    The problem I have with trying his approach is that I do not stay still all night. I have already tried to hold a pillow between my knees all night to help my lower back, and could not fall asleep because I normally roll over many times while easing into sleep. I ended up taking a sleeping pill, and woke up an hour later to find the pillow down by my feet. Spedding admits that he sleeps on his back, and that it is much easier to follow the program if one is a back sleeper. For the majority of us who sleep on our sides, it is much tougher. At least it is not harmful, like some potential treatments can be, so if I could figure out a way to sleep with all those pillows tucked everywhere, I'd give it a try. Why not?
    BTW, there are many well-respected researchers who do believe that FMS is a central nervous system (CNS) pain sensitization syndrome, so they do support this doc's underlying belief, even if they don't support his treatment for it, and in fact you can find a couple of articles on this right here in the ProHealth library...try a search for CSS if you want to read more.
    I admit this approach sounds way too simple to be true.... but wouldn't it be great if it were that simple! (Hope springs eternal!) Since I am no scientist, I cannot speak to the validity of his assertion that certain parts of the body cannot send accurate pain placement signals to the brain.... Madwolf? Roman? Anyone who knows about this reading this post???
    Thanks for posting the info, and Happy New Year!

    P.S. I am very sorry your friend has not gotten any better. I wonder if that is because she is female. I have seen several men with FMS get better all on their own for no apparent reason, and with no apparent effort, and I wonder once again what role sex hormones play in this illness. Spedding was very, very ill, unlike most of the men I knew when running my support group, but I still wonder if his body didn't do something all on it's own to help him...something that female bodies can't do because our hormones somehow interfere. For example, I know two women who came down with FMS when pregnant and both recovered completely exactly 5 months after delivery. One of them had a second child (she's got more nerve than I do!) and went through the same thing all over again, with the FMS going away 5 months later. I have also known one man who improved so much from the Testosterone Prorocol for men with FMS, that he and his family were able to move back to their beloved home in London.....he hated living here in Florida, where his doctor had told him to move for his FMS. This hormone connection bears a closer look, IMO.
    Whew, this is long...sorry!
    [This Message was Edited on 01/04/2003]
  3. lucky

    lucky New Member

    I knew that the Globe article would be of interest to you, and by reading it myself again, I thought it would help you to compare with Spedding's info as well. I pointed the article out to him, but he apparently did not read it at that time. My debate with Spedding after I read the article and his postings a few months ago was that he gives the impression that with Dr. Smythe's treatment people will get better or cured, which is not correct. However, that this treatment might be of benefit for some FM sufferers, that is each individual's choice to find this out by trying. I have found out that a good pillow is helping with the sleep, and that's as far as I can go, since I do not suffer from the severe fibropain as a lot of people do and was always able to move and walk, my CFS is my main concern.
    Well, I hope that you will be on your way with less pain and more strength during the new year. And....the pillows might even be the answer, I wish you lots of luck, Klutzo.
    Take care and all the best to you, Lucky

    P.S. I never replied on the Klosterfrau Melissengeist. My German store is not allowed to import it anymore because of the alcohol content in it. We have strange liquor laws in our country!!

    [This Message was Edited on 01/04/2003]
  4. klutzo

    klutzo New Member

    Spedding claims that he is cured! I very much hope for his sake that it's true, and not just a remission. I know of someone who used to come to this Board who had a remission of almost nine yrs. and then it all came back again at a time of great stress.
    I may never locate the pillow he talks about....the company does not have a website that sells online, for one thing, and they are in Ontario, while I am in Florida.
    I had forgotten all about that remedy...thanks for following up! I am now taking Neurontin to try to handle that problem, but am at too low a dose so far to know if it will work yet.
    Not to get too heavy here, but I have some strong feelings about the spiritual reasons why I may have this illness, and an equally strong suspicion that I will not get well, no matter what I try, until I complete the spiritual lesson the illness is providing me with.
    I keep trying stuff though.....don't we all!
  5. Mikie

    Mikie Moderator

    Thanks for the info. As I mentioned to Spedding, in that long thread we all had going for a while, I am very happy for him that he has found something which has helped him so much. Who is to say that it does or doesn't work. He has obviously found it helpful.

    I do not believe that our illnesses are triggered by one thing. I believe our illnesses are neurological in nature and are genetically predisposed. It can take just bad posture, bad sleeping positions, stress, infections, trauma, you name it, for our illnesses to become acute. I believe this is another reason that what works for one will not work for another.

    Many of us have gotten relief from methods which are outside conventional Western medicine and which have not been confirmed effective by traditional scientific testing methods. My feeling is that whatever works is worth doing as long as it is not harmful.

    Love, Mikie
  6. lucky

    lucky New Member

    Klutzo - probably the pillow is made by a company called ORFUS here in Toronto.
    I am sure that Spedding was responding to Dr. Smythe's treatment, however, I do not know and it is the only time I have read that somebody is 'cured', however, being in remission, yes.
    Well, I am sure that also you will find some more relief one day, but don't we know it, what an endless battle it has become to regain some of our health.
    As I mentioned before, I am by all means not cured and probably never will be according to my doctor (except, of course, if somebody comes up with a miracle cure!!), but I have found out over the years what meds I want/need/and tolerate which give me some better quality of life - and this helps me being in control and deal with the constant challenges we face every day.

    Mikie, yes, as I mentioned before, whatever helps a person to feel better and get relief with these dd's, that's what counts. However, I also like to mention, that I do not agree with a lot of things which I read or hear - and I consider myself pretty openminded and also quite informed about treatments, etc. to sort out what should be read and what should not, as I am sure a lot of others are as well. However, I still maintain that it is not a good thing to advertise treatments - conventional or unconventional - to be a cure for all, as this was the impression I had when I debated the treatments with Spedding and also reading the article, which I objected to because this doctor's treatments are not the answer for everybody.

    Again, all the best - Lucky
  7. klutzo

    klutzo New Member

    The pillow is called "the shape of sleep" and is made by Manutex Products in Mississaugua, Ont. Please note I am NOT giving a website or e-mail address here and have mercy.
  8. Mikie

    Mikie Moderator

    I agree. No one has come up with a "cure" as yet. I believe what appears to be a cure for one person may not help another. That seems to be the nature of our illnesses. I also believe this is because our illnesses all seem to be triggered by various things. It's like trying to have a "one size fits all" cure for cancer.

    I also agree that any one treatment should not be presented as the cure all for the above reasons. I think that when someone gets a lot of relief for our illnesses, it's human nature to want to tell everyone about it. Sometimes people just get overzealous and defensive about their "discoveries." I'm not talking about anything in particular here, just making a general observation.

    I get a little upset and defensive myself whenever someone presents Dr. Bennett's article on the flawed Oregon study of the Guai treatment, not because I don't want anything negative about the Guai made public, but because it's not fair to present information based on a very flawed study. The author, being a recognized expert in the field, has to know that the study was fatally flawed and yet continues to stand by his conclusions. I know that the Guai treatment has not worked for everyone and that it is a treatment which requires commitment and patience. That said, however, I do believe it has worked for many, as it has for me, and is a viable alternative treatment to consider.

    It's healthy to have a good debate and present all sides of an issue or treatment. This is especially true where there are risks involved. I have asked that when members present something which helps them that they mention any possible negative side effects as well. For example, the human growth hormone treatment, while very effective for some, carries the risk of feeding any cancer cells in the body. People need to know this. This is not to say people should not use the treatment, but it demands an informed decision. There are docs who will not use this treatment for this very reason. This is just one example.

    This has been a good thread and I hope we can continue to discuss various treatments openly and without upsetting our members. In the end, each of us has to weigh any treatments and decide what is best for us.

    Love, Mikie
  9. lucky

    lucky New Member

    I am not familiar with this pillow, however, as you can read in my profile, I do live in Mississauga, so it would be easy to find out where it is made.
    I was just curious because the only pillows for neck pain, arthritis, etc. I thought were made by ORFUS.
    I am not going to buy it anyway, because I do not have the terrible fibropain like a lot of you have. However, I get also a little relief at times with some excercise. My biggest little discovery are weights, mind you just 2.5 kg, but heavy enough and I use them with my stretching.
    Klutzo, I hope the Neurontin will help you a little which I am sure it will, probably much better than pushing all these cushions around during the night.
    Again, best wishes, Lucky

  10. klutzo

    klutzo New Member

    Very eloquent, Mikie! I guess the Guai really has helped your fog if you can write this you'll be writing a book!

    Lucky, how much is a 2.5 kg weight in pounds? I was never any good at metric stuff. Us Yanks are stubborn about our system! I use 4 lb. hand weights when I feel good enough, and use therabands the rest of the time.

  11. lucky

    lucky New Member

    I just finished a long message to Mikie, and what do you know they cut me off and it will have to wait until tomorrow, am getting tired now.
    2.5 kg are 5 metric pounds = (let me see how my arithmetic is tonight) = well here it is:
    1 kg = 2.2046 lbs OR
    1 lb = 0.4536 kg

    in other words when I am using 2.5 kg weights (i.e. one in each hand) you have to multiply by 2.2046 lbs OR
    4 lbs you have to multiply by 0.4536 kg - in your case and there you have the metric. I believe it is 1.81 kg - check this out, I did this with my tired head. I am ahead by a little more than 1 lb. - here comes the weightlifter!!!
    But, don't overdo it, I have been doing exercises - if only when I was able to - for years. It is such a big help - especially my walking.
    Are you taking the guai as well, Klutzo?
    I am doing very well on my antifungal treatments at the moment and will not add anything to it, except thymus, and garlic.
    Take care, and hope you are also doing well with your weights. One doctor, I forgot who, mentioned only 1 or 1.5 kg or lbs, so take it easy.
    Bye for now, Lucky

    P.S. I sometimes go on Chat and find it good entertainment many evenings.
    [This Message was Edited on 01/05/2003]