A hope, an idea tomorrow could be better

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A hope, an idea tomorrow could be better

Postby rucc2 » Sat Nov 29, 2014 11:15 am

Hi all

First time I have joined a forum and I am not on facebook though my kids say I should, to keep in touch see photo’s etc.

I am here because I read a testimonial from Mary who has suffered from MS, CFS and Fibro for 19 years and it broke my heart to read her story, I can post it if that is allowed, anyway she was spending 6 days out of 7 in bed, having been forced to take early retirement due to her condition.

In her testimonial she found a product which in 2 weeks allowed her to get out of bed more and in 6 weeks is allowing her (in her own words) to start to lead a normal life again, I use this product myself and it as helped me too with my lungs.

The thing is I have been doing research in molecular biology and it includes cell messaging pathways etc within the body. Mary’s letter prompted me to look at the research done into ME, CFS and fibro.

One paper on the MEA site under research “A gene signature for post-infectious chronic fatigue syndrome” was really interesting and gave me an idea based on Mary’s recovery about the fine line of chemical imbalances that can happen within the body cells and the disruption a loss of one chemical can in long term cause.

I would like your help to discuss the various common problems you all have and I am guessing you can tell me a whole lot more than the medical profession, who have seemed to treat the symptoms but have so far not treated the cause.

Most of my own research as been based on the Nitric oxide synthesis and what it does within the body, please have a look on wiki for more info on that, its easy to find, but maybe hard to understand it all.

I have read a lot on your forum and the first subject I would like to touch on is the question of IBS
Seems a lot of you have stomach problems of one type or another.

Would you agreed that is true ????

If that is the case I think it is highly possible that a malfunction in the digestive tract could impede the process of certain chemicals getting into the blood stream and there by not getting to the cells to use.

This would explain a lot depending on how bad or mild that malfunction is, how it can come and go also perhaps how it progresses.

Would you all agree that this might be the case ????

I look forward to your views and hope your having a good day.
Thank you for taking the time to read this. It is abit long sorry !!!!

A gene signature for post-infectious chronic fatigue syndrome Paper is at http://www.biomedcentral.com/1755-8794/2/38
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Re: A hope, an idea tomorrow could be better

Postby Zia2014 » Sat Nov 29, 2014 5:08 pm

Hi there,

Personally I got IBS 13 years ago, but only developed Fibro this year. So I would never link the two in my case.

I would also just like to point out that although out those of us who do post regularly seem to often have stomach issues, there are many more who (a) don't post, (b) don't have IBS and (c) there is a whole group out there who have fibro but are not on this forum. We are therefore not a representative sample in any meaningful way, so while it's great you are looking at this I would just remind you to keep that in mind.
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Re: A hope, an idea tomorrow could be better

Postby becbob » Sat Nov 29, 2014 5:42 pm

I got IBS when I was pregnant with my 2nd daughter. She's 15 now and I've only had fibro since last year. I have always suffered with bad tummys and I've also had my appendix and gall bladder removed.
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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Sun Nov 30, 2014 11:51 am

Thank you Zia for your reply, I will also keep the points you made in mind.

I agree with you it is not a simple link between IBS and Fibro, I only wish it was that easy because nobody would be suffering now.

The links made so far on the body are oxidative stress, immune response, neurological, gene switching, muscle recovery and energy, nerve pain, viral infection and mitochondrial malfunction, the list could go on and while it is all important, the really important question all of you want answered is what causes all that to happen and when are they going to fix it.

In Mary’s case she found a cure it all went away. I am here to see if that cure would apply to the majority of suffers and maybe there is way to pin point the cause. I understand one treatment may not work for every one, but to find the cause really does help in treating the whole.

Our bodies are one big chemical factory all working in balance to keep us healthy, it does not take much to upset that balance too much or too little of an amino acid, a vitamin, a fatty acid, or bacteria etc. start a process of imbalance and malfunction that keeps us alive but suffering until it is put right.

I am sorry my question may have seemed a bit simple and given what you all have to go through, all the worry and stress of the situation you find yourselves in, I am not surprised you are cynical of the one size fits all and that’s good cause neither am I and I hope we can help each other in that.

Many thanks R
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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Sun Nov 30, 2014 11:53 am

Thank you becbob for your reply , please look at my reply to Zia for a full version Many thanks R
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Re: A hope, an idea tomorrow could be better

Postby FluppyPuffy » Sun Nov 30, 2014 2:11 pm

Rather than saying that there is a link between FM and various conditions, the description more~often used is "associated conditions". Knowing that one condition may be experienced alongside another, rather than because of something can help make things a clearer and easier to manage for some. Problems such as IBS and depressions aren't exclusive to those suffering with other conditions, they can also be a stand~alone illness/condition and may be the only health problem experienced by that particular person.
rucc2 wrote:In Mary’s case she found a cure it all went away. I am here to see if that cure would apply to the majority of suffers and maybe there is way to pin point the cause. I understand one treatment may not work for every one, but to find the cause really does help in treating the whole.

When talking about a "cure" in relation to FM, don't be surprised at being met with a considerable amount of cynicism. Testimonials may not be as truthful as they seem, and may not have been written by genuine, or actual living people. There have been many, many pills, potions and snake oils peddled over the years that promise everything yet provide nothing. In fact the only one who does benefit is the seller/promoter who lines their pockets with the munnies of those who are desperate for relief and will spend their last penny trying to to find it. Also, if there truly was a cure for the condition, then word would be spread amongst the numerous FibroFamilies, both cyber and physical.

Also, members are asked in the Basic Rules For Membership not to promote the likes of health cures, either on the forum, or directly to members. People are at various stages of their journey thru life with FM, some of which may be somewhat more vulnerable than others. Plus there is the legal side to be considered too.

This isn't intended to be a slight on what you are attempting to research. Research of all forms and in all areas is needed to get those many, many questions answered that so many FibroMites keep asking. Hopefully this will help explain the forum's position, as well as guide you to getting the best info you can from members iro questions asked.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Mon Dec 01, 2014 1:04 am

Thank you fluppyPuffy
Both your concern and protection of all the members on this site and I fully understand the position you are coming from and I will work with all the moderators on the site to stay within the rules etc.

I can tell you Mary’s testimonial is genuine and she would agree with you totally as you say:
“There have been many, many pills, potions and snake oils peddled over the years that promise everything yet provide nothing. In fact the only one who does benefit is the seller/promoter who lines their pockets with the monies of those who are desperate for relief and will spend their last penny trying to find it.”

Mary is also providing updates on her condition and progress, she as also started to spread the word to her friends who have also started to see benefits and I can tell you she lives in Wales. She as asked not to give her surname out for fear they will suddenly decide to cut her benefits and she does not want all the stress of that, now that she can start to live her life more fully and she says she as a lot of catching up to do, which after 19 years of what she as gone through she fully deserves in my opinion.

What as helped Mary if it is something that can help everyone will I am sure be passed down the grapevine as you say. Before reading Mary’s letter I had little knowledge of ME. CFS. and Fibro. Most of my own research as been based on the Nitric oxide synthesis and what it does within the body, knowing as I do that is part of what as helped Mary allowed me to look at a lot the research all ready done on ME. CFS. and Fibro to see if it fitted in.

The real great news is that it does and I am in cynical disbelief at what I am finding, that in each condition that is the backbone of your troubles I am finding the same answer that may put the balance right.

So I do have a lot of questions as to why that chemical is not being made by the cells and why the gene pathways have switched to get around the problem. Why it is being processed through the body in a restricted way so that the symptoms get gradually worse sometimes over years. If it does have limited access through the stomach walls or it is a malfunction in the area of mitochondria off the stomach where most of it is supplied to the body through the blood stream, as yet I seem to have a lot to find out and I would really like your support to help each other to make a difference, in Mary’s case it was supplied through the lungs by breathing.

Its funny where life takes you sometimes I started all this research because my ex wife as COPD and she is the mother to my children and I did not want them to see her struggle, so started to look to find ways which would make her life more bearable, when I started to look inside the human body I found it fascinating almost like science fiction. I am sure a lot of your loved ones have searched the web looking for those answers too, so that it would help you find some relief and they do it because they care. I must say for me it is not easy looking on this forum at times I read the letter called "The Fibromyalgia Letter" ouch !!! guess I care too.

I shall try to ask better questions and give informative reasons why those questions are asked in the hope they can be discussed. Many Thanks R
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Re: A hope, an idea tomorrow could be better

Postby denys » Mon Dec 01, 2014 12:26 pm

I am very sceptical regarding this post and am only leaving it up for members to form their own opinions of it. However should any members make a complaint then it will be taken down immediately.

I also find that the mention of not informing the DWP of this miraculous recovery quite distasteful as the lady in question is committing fraud :shock: :shock: :shock: :shock:
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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Mon Dec 01, 2014 9:52 pm

Hi Zia
Your answer was just fine :)
Yes the neurological side does play a part in the symptoms in more ways than one, as some research as shown.
My thoughts are that it is a symptom but not part of the cause, imagine the cells in you muscles getting stuck in a low energy cycle because of a chemical imbalance. When the muscle works they get stressed, when the muscle stops they are still stressed. So they tell the nerves all about it.

I have been researching Neuroeffector junctions and Gap junctions where a motor neuron releases a neurotransmitter to affect a target, these too are effected , which allows them to leak pain in each area all over the body to varying degrees. So all this signaling goes up to the brain and it too gets stressed and it effects the hippocampus which then tells the hypothalamic–pituitary–adrenal axis which is involved in the neurobiology of Mood, anxiety, IBS, hyperactivity, fatigue and sleep in a negative feed back loop between the pituitary and adrenal glands to do something about it.

Now there is a whole lot of chemicals and signaling messages going on around the body telling difference cells what to do, but some cells are struggling to produce what is required, so they change the message in order to cope, because they are working in a low energy cycle too.

The whole system starts to get stressed which upsets the autonomic nervous system and becomes imbalanced, which then impacts on sleep patterns which also feeds into the tiredness, lack of concentration and short term memory loss, there by starting a series of ailments which feed into and off of each other to varying degrees and levels.

The cells are a different story but that is my simple explaining of the neurological side and you can look up on wiki the words in bold if you wish.

Research papers I’ve read brought up five simple things they say as shown benefits in their tests.
Vitamins C and E. Coenzyme Q 10, Omega 3, and zinc hope you are getting your share of those !!!!

Many thanks R
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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Mon Dec 01, 2014 10:32 pm

Thank you denys
I hope I do not disappoint you and thank you for letting the members draw their own opinions.
I can only respect Mary's view, as I shall respect yours too. She did have well respected jobs before her illness stopped her and is well qualified, she does not seem the type to stand around for long if she can do something for her self, her letter was only written in November and that was six weeks into her recovery and she would still need time to a adjust to be fair.

Many Thanks R
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Re: A hope, an idea tomorrow could be better

Postby keaedmondson » Mon Dec 01, 2014 11:19 pm

Hmmm there seems to be a lot of dazzling with sophisticated medical lexical sets here!
Versus a gross simplification… If it were that easy would we all be here?


Think I agree with Denys!

Bordering on abhorrent is the"hope" you may be intentionally or unintentionally giving to those who are new to FM than the more cynical ones here… Publishing this in the hello topics will ensure that a lot of the main people who see it are Newbys. I'm sure, from what you say about your ex-wife, that you are genuine and you do want the best but for people who are going through the grieving stage or the denial stage they may cling onto this idea far more than you intended… for people who are newly diagnosed your jargonisticq yet simplistic approach may confuse and overwhelm ...

Having read this thread regularly since you opened it, I have very much been giving you the benefit of the doubt… And I feel I no longer can… Good luck and I hope you achieve something but be careful
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Re: A hope, an idea tomorrow could be better

Postby rucc2 » Wed Dec 03, 2014 9:43 pm

Yes I am a newby to this forum and I am not used to how they work, I do not suffer from MS, CFS, or Fibro, but I do wish to help if I can, by providing links to research papers and other information I come across that could help members knowledge and understanding of their condition and associated conditions and also open discussions with the optimistic view of making a difference through deduction and agreement the exchange of idea’s that may track down the cause.

The Doctors don’t know the cause; they also do not have a cure as yet. They treat the pain and symptoms to make things bearable, but not one of those tablets or treatments as yet stopped you having Fibro, MS. or CFS.

There is “Hope” there is some very good research going on around the world today, which would have been impossible only a few years ago. I am good at recognizing patterns and spend hours following one chemical and messaging pathway after another from research papers and other material to build a picture by cross reference of what is happening to cells within the body and the reaction to the body as a whole.

I did just come on this topic to say “Hello” and introduce myself and it seems to have turned into a debate all its own with me trying to respond to your comments. Maybe that was a mistake of my own making, perhaps its best I do not say anything more it this Topic area and move over to more appropriate area’s where the information and discussion can take place in more detail with the more experienced people on this Forum.

Sorry for any misunderstanding I may be causing and look forward to your views, and observations in other areas of this forum

Many thanks R
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Re: A hope, an idea tomorrow could be better

Postby denys » Thu Dec 04, 2014 11:08 pm

We are some of the more 'experienced' members of the forum, we look at the research from round the world ourselves and have found that in the majority of cases the subject group used is either biased or too small a sample size to give repetitive results. As a scientist myself I am aware of the way statistics can be used to make a story which unfortunately is not always factual :!: :!: :!: :!:

By all means show links that you think may be helpful, as we would all give anything to return to life before fibro. But dont expect an awful lot of enthusiasm, as we have been disillusioned by both the medical and research professions in the past.

Who know 2015 may be the year a cure is found and then you will see a lot of people jumping for joy
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Re: A hope, an idea tomorrow could be better

Postby dazzleship » Mon Dec 08, 2014 10:14 pm

*dazzle wades into the fray with her cynical hat on*

I've said it on here before and I'll say it again.. if someone does manage to be "cured" of fibro then in my opinion they never had fibro in the first place. at least, not the long-term version that us here on the forum suffer from.

and yes I completely agree with Denys about this "Mary" person cheating on her benefits. she should be absolutely ashamed of herself.

there are lots of people on here who genuinely need to claim benefits and go through all sorts of ATOS tests and rejections and told they can't have money they desperately need, and then this "Mary" gets cured but doesn't want to stop claiming money that frankly she no longer deserves :evil:
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