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Date: 29.01.2012
From: Stephen Grinnell

Subject: Pain Management

Hello everyone is posting about management of arthritis and little about what causes it or what to try ie diet or supplements. I have had OA for 17 years and had a resurfaced hip 5 years ago. I am suffering with the other hip and want to fight the disease
Any offers???
Consultant said surgery again I am only 38 there must be alternatives to try
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Date: 29.01.2012
From: rhona

Subject: Re: Pain Management

Hi Stephen, You are young to have OA, i have heard it can sometimes be caused by an old injury. I have RA. so don't know too much about it although fish oils might be worth trying, you can buy them in capsule form. There are books that talk about diet etc which you can probably get from the library, swimming is good as it puts less stress on the joints.
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Date: 01.02.2012
From: Val

Subject: Re: Pain Management

Hi. I was advised to go dairy free, beladonna vegetables and wheat free as these all irritate the condition. I began 8 years ago with OA but it went to RA last January. I have also found hot wax treatments help hands and feet and can be used on elbows. Fish oil is another to try, unless you are like me an highly allergic to all fish! Good luck and hope you find something helps.
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Date: 02.02.2012
From: chrissy

Subject: Re: Pain Management

Hi stephen you are young to have OA, i may be wrong but i thought OA was wear and tear and not a disease,i have OA and RA,im on a infusion called toxicilamab,have you been tested for RA,im not sure if they give tnf drugs for OA,as rhona said OA can be caused by an old injury, is that what happened to you.
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Date: 04.02.2012
From: marlene

Subject: Re: Pain Management

Hi Stephen, being an OA sufferer I know how frustrating it can be. As far as I know surgery is the way to go. I have had elbow and spinal ops,not a great thought but they were helpful some what. There is no cure for OA as Chrissy says it is not a disease it is wear and tear.
It can be handed down in the genes as it was to me.
We can only manage our pain as best we can.
Your Consultant would only suggest surgery as a last resort.
I hope you make the right choice for you, of course it is good to look at all aveneus before taking the surgery route. I wish you all the luck with your decision. Take Care and Keep you Chin up.
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Date: 06.02.2012
From: happygogo

Subject: Re: Pain Management

hi stephen

I also have OA which started in my hands when i was 30. although both my small fingers have been disformed since high school so i may have had it longer than that! i'm 39 now and have also started to have problems with my right hip.. i have every sympathy with you as been young makes you look at the future and wonder how bad its going to get as the years skip by. the pain and pills are something you just deal with however it the frustration at not being able to do silly things at home or with the kids that gets to me. this is a great site to come on, as everyone knows what its like and you get lots of advice and sympathy, which is just what you need some times. big hugs Kay
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Date: 12.04.2012
From: Sean

Subject: Re: Pain Management

Hi Stephen
I am too a bit surprised about the lack of alternative advice being exchanged.
There are a lot of people posting on the forum that are in a great deal of pain or are managing their condition with very strong drugs and enduring side effects that may eventually lead to worse issues (I saw a BBC report today that 16,000 people die each year from complications caused by their arthritis meds).
I see the first post from very young people being replied with stories of which drugs worked best for others or that the doctor will eventually find something that works.
Searching through the forum and the stories there are quite a number of good positive stories of people that have improved their conditions with diet changes - which correlates with my own experiences.
A diet change option is not easy - and it is easy to loose faith and convince yourself that it did not work. Given that the cause of AS and RA are well documented to be related to gut bacterial infection (Klebsiella for AS and Proteus M for RA) - and that nearly all AS sufferers has Crohns to some degree - I find the lack of GP and rheumy medical advice in this direction almost criminal.

My experience is that any deviation from my diet almost sends you back to the beginning - its a bit like snakes and ladders! And when you're meds that are numbing you to some degree or another it is very difficult to know if the diet is working. It can take me 15 days to get over a flare up.

Although I don't need to take meds - I do really need supplements to keep my back, neck and rib cage healthy - I am sure that I need these due to damage to my gut (vili) from wheat and corn - meds didnt help here either (my dad got ulcers from his meds a few ago)

So to summarise - I believe that my diet will work for lots of people and that supplementation is needed because of previous gut damage.

I take the following supplements daily -

Biocare Mag2 1Cal (improves bone density)
Manganese (stops the inflammation and strengthen ligaments)
A good b complex vit (assist calcium)
Zinc and selenium (to help your body remove mercury and lead)

Hope this is of some use - please also read DOGTORJ.com - regarding effect of wheat, corn, dairy and soy on health

Another useful link is Specific Carbohydrate Diet - which tallies independently and pre-dates the above.

Please also look up Ernst Krebs and his research.
Sean
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Date: 12.04.2012
From: Viv

Subject: Re: Pain Management

Hey Stephen,

The exercercise bike works great for me! I also take nettle capsules and hyalauronic acid for my arthritis. Pomegranate juice, cherry juice and also eating nuts like walnuts helps. I also take two aleve a day. I have OA in both of my knees. I also use frozen peas on my knees as well as heating pad, hand help deep massager and taping magnets on my knees at night. Hope this helps. I use a cane sometimes or my walker if I walk outside for a mile or so. Good luck!
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Date: 12.04.2012
From: bsk

Subject: Re: Pain Management

Hi Sean,

I think you might find there are quite a lot of posts about diet and alternative treatments on here. Most of us have tried some or all, some successfully, some less so. Please don't assume we all just turn up at the doctors and agree to the first thing they suggest.

In addition , there is little hard evidence to support some dietary changes. Arthritis Research UK does publish a list of complimentary medicine and research results. Some do work for some forms of arthritis, most not supported for RA and other inflammatory diseases. Some, like omega 3, are widely agreed to help.

Your belief that your diet will help lots of people is not scientific evidence, I'm afraid, and you advising people to follow your plan is no different to other people talking about the medications they take and what works for them. No better, no worse but no different.

A word of warning, a lot of supplements are not advised whilst taking drugs like methotrexate as they can add a burden to the liver, which has to break them down, and can caused raised liver blood results.
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Date: 12.04.2012
From: Sean

Subject: Re: Pain Management

Hi bsk
I am sorry if you found my post negative - but my aim is to help as many people of possible with my knowledge and the masses of research I have done.

I did say "Searching through the forum and the stories there are quite a number of good positive stories of people that have improved their conditions with diet changes - which correlates with my own experiences." and lots of people is not everyone.

My concern was that the initial advice to people - although supportive is very loyal to coventional treatment.

I haven't stated a plan as such - but I believe that a radical, honest and thorough look at dietary options will help many sufferers and I do really appreciate how bad the pain and reliance on medication to get through can be.

For example AS starts at a young age in many people - and is often mis-diagnosed - I was told at age 20 that I had OA and a bit of RA! They called it 'non specific arthritis' - I had so many painful joints (back, shoulders, shoulder blades in my back, neck, hips), red eyes, lethargy, headaches.

I would challenge as to how many AS sufferers have tried a very low starch diet non stop for a full month to kill of the Klebsiella bacteria that are the trigger for the disease. These bacteria feed on starches - thrive in the gut and excrete toxins that trigger imflammation. The mechanism is known and documented thoroughly in medical papers - yet we continue to attack the symptoms and not the cause.

The doctors call these diseases auto-immune - as it is the body attacking itself - as an analyst in my job this always bothered me - as my body spent many years not attacking itself, so some thing changed at some point. I now know that my immune system is attacking something that is in me that it does not like.

Has anyone out there ever noticed that their condition goes up and down from week to week - flare ups come and then subside. Has anyone ever noticed that if they are ill in bed / layed up sick that there inflamation is less when they are eating less?

I downloaded the 'Complimentary' brochure from Arthritis Reasearch and I am going to be polite and say that I am truly shocked by how uninformative it is - I suggest that others take a look. No mention of diet. It mentions complimentary medicine as opposed to "evidence based western medicine" - which is a big nod to the drug companies that run the NHS.

There is a common put down to people advocating diet - by saying that "we are all different" - my reply to them would be is that "we are all more alike than we are to the mice that drugs are tested on".

To to any younger AS sufferers out there that have not yet given diet a good try - please do the research on this forum and others - there is plenty of hard evidence from members that diet changes dohelp. If anyone needs links to this evidence then I am happy to help.
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Date: 12.04.2012
From: Colin W

Subject: Re: Pain Management

Sean , could not agree with bsk more , lot of us had Rheumatiod for long time , with joints damaged/fused & replaced , some alternative treatments works like hydrotherapy / tens machine & acupuncture but the later only few days

some fish oils & Glucosamine helps but some like St. John's Wort you have to be realy careful because how they react drugs like Mtx as bsk said

personaly found red meat & some fruit can affect RA & make it worse but found nothing makes it better , without the powerful immunosuppressants from the doctors we would be suffering a lot more , just look at films about people with RA 50/60 years ago & see how much they suffered

Rheumatiod not only affect joints but can cause eye / heart / lung problems as well as having flu like symptoms all the time , where as OA is wear & tear on joints & supplements can help a lot , you are just making light of what some of us have to put up with every day
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Date: 12.04.2012
From: bsk

Subject: Re: Pain Management

Hi Sean,

I didn't find your post negative at all. I'm really just asking you what your hard evidence is about diet. Anecdotal evidence just doesn't cut it as far as I am concerned. Put it up on this forum if you are so sure it will help people. I'd be interested to read it. I'm not going to just take your word for it!
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Date: 12.04.2012
From: Geoff

Subject: Re: Pain Management

Sean personally I feel like you ate trying to force your views onto people. Which is nit what this forum is about.
Everybody has there own way of coping with their arthritis and I sure many have done plenty of research into their condition to see if there is anything extra they can do to help and we all discuss this together.

You have been going on and on about your diet on a lot of different posts, I'm sure most have read and taken it on board but personally you are starting to bore me now.

I have a very good rheumatologist (an expert) who does exactly what is best for me now and my future. Without some of the drugs I take I may not have much of a future.

So pipe down we have heard you...
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Date: 12.04.2012
From: Suz

Subject: Re: Pain Management

Sean

In my opinion I think you could be right with auto immune diseases starting from the gut, I have done similiar research like your self and the conclusion always comes to gut bacteria triggering a auto immnune response to the joint tissue and other tissue depending on which auto immune condition you have.

Havind said all that as the immnue system has been confused by whether bacteria or gut damage some people or even most need some form of medication to control their symptoms but to really control the disease I think changing ones diet does help.

As rheumatoligidt don't pay attention on the matters of the gut relating to auto immune conditions, half of the people suffering will not agree with you or me.

I think RHEUMATOLOGISTS need to pay more attention on the disease process.

Thanks for sharing your info tho, I think its worthwhile checking the diet.
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Date: 12.04.2012
From: davina

Subject: Re: Pain Management

hi sean thank you for this info but i believe that yes maybe a diet may help with pain but where is the pretection from joint damage. i do ask this question to all people that come on here and talk about diets and alternitive medication.

you said that for a number of years you were well then something changes maybe in your gut or brain but i believe the meds are there to control and help stop damage and i don't see how a diet would do that, what about joint protection.
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Date: 12.04.2012
From: Sean

Subject: Re: Pain Management

Geoff
I am so sorry that you feel this way about my posts. I am a bit offended by your tone - I will as bsk asks post links to evidence to diet research and success stories. I believe I had stayed on topic on each thread are you a forum manager?

I will not post anything else on this forum - but I will add my story. The reason I had posted on a number of threads is because a lot of threads are personal, specific and short lived and I saw a few younger people in real distress.

Thanks Suz for your comments.
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Date: 12.04.2012
From: Geoff

Subject: Re: Pain Management

I for one would not want you to leave this forum, infact it's the last thing I would want. I just feel you are pushing your views onto people. Everybody has there own experience with these conditions/diseases and I'm sure a lot including myself have tried diets and everything else I can that might help.

You are telling people that meds are for rats and mice and a lot of us couldn't get through a day without them.

I am open to your opinions and would expect you to be open minded to others but I feel that you are not.

Please do not leave the forum.
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Date: 12.04.2012
From: marlene

Subject: Re: Pain Management

I suffer with OA and have for 25yrs I have tried diet change and supplements for years. The only thing that works for me unfortunately is surgery and pain killers. I have every faith in my rhumy team, surgeon and GP.
I am interested in what anyone has to say but to post on many threads about the same thing, is just saying you will listen to me no matter what.
Feel free to post whenever you want but maybe without being so forceful. Take Care
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Date: 12.04.2012
From: Viv

Subject: Re: Pain Management

Where is your arthritis? Mine is in my knees.
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Date: 13.04.2012
From: bsk

Subject: Re: Pain Management

Sean, I don't want 'success stories' but would like to see hard evidence back by scientific research with peer review published in well respected journals.
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Date: 13.04.2012
From: Sean

Subject: Re: Pain Management

Hi bsk

http://www.ncbi.nlm.nih.gov/pubmed/16603443

http://www.ncbi.nlm.nih.gov/pubmed/21955846


It is also worth considering that all diet trials have now been determined as impossible to fulfill criteria for blind study. In short the current research criteria make it difficult to submit diet study as official medical research. I wonder why that is?

It is also worth mentioning that there is a big machine tied in to devaluing Dr. Ebringer's research.

I intended to share my experience for those that have not tried diet as strictly as is required - there will be many people that diet cannot help for all sorts of reasons - especially true OA. Success stories are important and are as inspirational to keeping me and others on my diet as any other forum exchange.

Hope this is of interest. My wife got a bout of costochronditis out of the blue a few months ago - she had had a URI the week before!
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Date: 13.04.2012
From: bsk

Subject: Re: Pain Management

Hi Sean

Thanks for posting the links. Had a look this morning.Will have a further look later.

I would say two things. Research results are only as good as the research methods employed. These I don't know. The reason I asked for Peer Reviewed publications is that is the recognised criteria for judging research. You have to have standards otherwise it becomes meaningless. Anyone can say anything. I used to work in market research and the question were frequently skewed to give the companies the answers they wanted. Easy to do. Have you read Bad Science by Ben Goldacre? Interesting book.

You say there is a big machine tied to devaluing his research. I wonder why that is?

It also says antibiotics, vegetarian diet, high intake of fluids and cranberry juice (I thought this theory had been debunked!) MAY be helpful. This is a supposition based on his theory about UTIs. 'MAY' is not scientific evidence. Where is the evidence for that?

I've been vegetarian for as long as I can remember, never had a UTI in my life, have high fluid intake, constantly on antibiotics and am skeptical about the link.

The problem I have with your posts Sean is what Geoff said, which is you try and force your views across. You are so determined that diet is the answer there is no room for debate. A better approach would be to ask if anyone had seen this research. We are all intelligent enough to read it and come to our own conclusions.

My conclusion is that there is no hard, peer reviewed, evidence that diet is helpful in RA. Although I perfectly well accept that, for some people, they feel it helps.
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Date: 13.04.2012
From: Sean

Subject: Re: Pain Management

Hi Bsk,

I think both yourself and especially Geoff have been a bit unfair to my posts - as I said to Geoff I did post on a few threads in response to individual questions. If these help these original posters then I will be happy - especially the new forum joiners that would not be told by their doctors of the alternatives - or may only get directed to ArthritisRearearch.org.

My original post was in response to Stephen who asked "everyone is posting about management of arthritis and little about what causes it or what to try ie diet or supplements" - I have read my post a few times since being critised by Geoff and yourself - and apart from being a bit over zealous and a bit enthusiastic at worst I have always been polite and helpful in my posts. Some of your replies have been a bit heavy handed to say the least. Geoff was actually quite rude ("Pipe Down! Your boring me!" was uncalled for)

I have always stressed that diet will not work for everyone - but I think it is my view that the medical profession do not do enough research in to dietary options and vitamin / mineral deficiency - especially for AS and PS that is grating with some people. I STAND BY THIS - and this is the basis of my passion and frustration.

I have not forced my views on anyone - after my initial posts on a few threads - I set up a completely open question thread to ask for peoples experience with diet - to which people are contributing.

I have read "Bad Science".

Anyone demanding rigorous, double-blind studies of starch exclusion in the mitigation of AS would never really stick to such a regimen, even in the face of still more compelling scientific evidence. Have we ever asked a bread baker for double-blind scientific studies that promote eating bleached and devitalized, micron-sized milled flour products in the first place? Lets demand their studies about the effects of the products they purvey, also! And how many people ask their doctors about the "double-blind" studies conducted on the common arthritis drugs they prescribe?

Diet is an inexpensive alteration in lifestyle that can dramatically affect the course of AS. It does not require NICE approval, endorsement by your doctor, or abandonment of most allopathic therapies. It does, however, require some discipline and a sincere personal commitment to take charge of the course of your own case of Ankylosing Spondylitis.

I am particularly interested in how many people have tried a strict low starch diet non stop for a whole month - I have not tried to it's fullest extent but given my experience would if I had to.

I will post my story - but will try to be a bit less zealous in my posts and I will contribute to specific questions in new threads where I think my experience will help even it does bore some people that have heard it all before. I AM VERY OPEN MINDED to all treatment - and I know that medication is required - my Dad had AS - and I know that I am one of the lucky ones.
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Date: 13.04.2012
From: Colin W

Subject: Re: Pain Management

Sean , you dont need to a brain surgeon to workout this dont make sence ,
https://www.ncbi.nlm.nih.gov/pubmed/16603443s

a lot of use with RA has got family members with RA & link been known for years , its often starts at certain age ie mid 30s , this is a old publication & if there was anything to it , there would be more research to back it up or prove it .

there is real hope for all us RA suffers , so much has changed in the last 15 years with anti-tnf & other boi drugs , they are realy starting to understand the illness + there is realy hope for OA now as well

as for foods , its all old news , Doctor's Proven New Home Cure for Arthritis by Giraud W. Campbell in 1973 , realy if it worked dont you think everyone would be using it
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Date: 13.04.2012
From: davina

Subject: Re: Pain Management

can you awnser my question now sean
i asked if diet works as you say what about the damage to bones ect. is there any evidence that diet only does stop damaged joints or just pain?
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Date: 13.04.2012
From: Sean

Subject: Re: Pain Management

Hi Colin

It is great to hear that there is hope in drug research to understand the treatment of arthritis.

This is far more complex than foods - and this is just an extract of a BMJ publication - research is continuing see recent (2010) study below - done 4 years after the previous work.

http://www.ncbi.nlm.nih.gov/pubmed/19895906

Despite my earlier concern it looks as though some research in the causes is still under way. There is hope from all quarters.
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Date: 13.04.2012
From: Davina

Subject: Re: Pain Management

I GUESS I NOT HERE ASKING A QUESTION THEN SEAN?
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Date: 13.04.2012
From: Sean

Subject: Re: Pain Management

Hi Davina
Sorry - I didn't reply quicker - but I was replying to bsk and then had a few meetings.
It would be the same research - as the process is inflammation, causing pain and then residual damage from the immune response. So less inflammation is less damage.
Yes - in my case diet has prevented damage to my bones and reduced the inflamation and pain. If I was stricter with my diet then I feel I would be better still.
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Date: 13.04.2012
From: Davina

Subject: Re: Pain Management

ok sean was you diganosed with erosive or non erosive as i have?
no matter meds or not its unlikely my bones will be danaged so you may not be helped by just the diet.
i understand you have your veiws and believes but i and others don't believe that diet would help.
i'm guessing you still have flares how do you deal with them and if you have no meds at all how can you speculate?
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Date: 13.04.2012
From: bsk

Subject: Re: Pain Management

Hi Sean

In what way have I been unfair to your posts?
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Date: 13.04.2012
From: Sean

Subject: Re: Pain Management

Bsk
Sorry for saying that - it was more Geoffs "your boring me" post that got me - I re-read your posts you are equally forceful about your wish for evidence and seemed to back up Geoff "unfriendly" post - you do ask some really good questions but I never said or even implied that anyone was not intelligent enough to come to ther own conclusions.

Dietary research in to gut bacteria and the exotoxins they produce has been underfunded for years - they have spent an inordinate amount on treatment rather than understanding cause and this therefore research is on going.

http://www.arthritistoday.org/news/bacteria-autoimmune-arthritis104.php

I thank you for making me dig up these recent studies on RA and the effect of Proteus Mirabilis and as a result I am now aware that my diet is not going to help true RA sufferers as Proteus unlike Klesbiella is Starch negative. It does however thrive on acidic environment and hydrogen sulphide which diet and exercise can have an effect on.
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Date: 13.04.2012
From: marlene

Subject: Re: Pain Management

maybe the complimentary brochure didn't mention diet as there is no proof that it works. If people believe something is working for them well all I can say is great. When I am in pain I listen to all the music from my teen years and drift off, this doesn't mean it would be helpful to some one else.
This posting kind of reminds me of the Dr Sangita posts!!!!
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Date: 13.04.2012
From: bsk

Subject: Re: Pain Management

Sean, Sorry if you found my wish for evidence forceful but I don't think it is unreasonable to want it. I've heard a lot of anecdotal stuff but often nothing to back it up. I agree that certain areas of research are neglected/underfunded and think the doctors know only a fraction of the story but think that is true for a lot of illness.

I'm not so rigid in my thinking that I wouldn't change my diet if I thought it would really help. In fact, I did try several when I first got ill. Firstly they didn't help and, secondly, they were very hard to keep to. Finally, I discovered with RA that even if the symptoms improve with diet you don't prevent joint damage. Hence my decision to go down the conventional drug route.

As to presentation of views, it is difficult to get ones point of view across without appearing dogmatic. We are all somewhat guilty of that. However, I feel it is not the most helpful way.
I am grateful to you for making me relook at things and reread. Who knows, I might just come to a different solution.
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Date: 14.04.2012
From: Sean

Subject: Re: Pain Management

Marlene -
Are you saying that it is wrong for me to post something that I feel might be useful to someone else - what is a forum for - my knowledge and experience is mostly based around AS and I have helped work colleagues, friends and family.

Was Dr. Sangita someone else that a few people ganged up on - did he/she end up feeling persecuted, mis-quoted and thoroughly unwelcome. I was curious so I googled Dr. Sangita?

Professor Sangita Sharma, PhD, is an internationally known expert in dietary assessment and nutritional risk factors for disease in unique populations spanning the globe, from the Canadian Arctic to the Caribbean. With over 18 years of experience, Dr. Sharma has worked with many populations in Canada and the United States including: Inuit, Inuvialuit, First Nations, Apache, and Navajo. Additionally, she has worked internationally in countries such as England, Cameroon, Jamaica, Barbados, Trinidad, Brazil, Indonesia, and Nepal. Her work combines nutritional sciences, epidemiology, health promotion, and community-based interventions, with a focus on the development of dietary assessment methodologies for diverse populations. Research, grants (n=42 as PI/Co-PI) and publications (n=75), has been multidisciplinary, including the relationship between diet and disease, nutrient-gene interactions, ethnic differences in health outcomes, and the development of nutritional and lifestyle intervention programs to promote health.

Fits the bill?
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Date: 14.04.2012
From: Sean

Subject: Re: Pain Management

Thanks bsk - for your more welcoming post - I am here to help and learn not to tell. Diets are hard to keep to - I still crave sandwiches even today.
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Date: 14.04.2012
From: Geoff

Subject: Re: Pain Management

My guess is that you are single Sean.
I find you irritating and annoying.Sorry if you are "offended by my tone" again but that's just my opinion.
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Date: 14.04.2012
From: Sean

Subject: Re: Pain Management

Geoff - you are rude! I am 24 years married with 2 tennage children. Please be more respectful. This was originally a pain management thread. I have admitted being over zealous on a few posts - but you and others are turning this in to something else with your quick criticism. Is this sport for you?
Let's just bury the hatchet and get along.
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Date: 14.04.2012
From: bsk

Subject: Re: Pain Management

I don't think that's the same Dr Sangita Sean.
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Date: 14.04.2012
From: Sean

Subject: Re: Pain Management

Hi bsk - the point is that I am not supposed to know who Dr. Sangita is! Marlenes remark was meant for others who do know who she was. In doing this it puts me on the outside of a clique - it's a bit like the use of "me and others".
I do really appreciate your post yesterday evening - which I read after replying to Marlene.
I only posted this Dr. Sangita - because of the irony of her specialism.
Let's leave this thread for pain relief advice - stephen asked for help.
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Date: 14.04.2012
From: Geoff

Subject: Re: Pain Management

Ok Sean,

I have been rather rude which I am sorry for.
I need to stop reading your posts because I do get rather annoyed.

But I must also say that you have also been rather rude in your own way and also you come across rather arrogant. Just my opinion though.
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Date: 14.04.2012
From: Patricia

Subject: Re: Pain Management

I have found Sean's posts interesting. :-) I am encouraged by people's experiences of all sorts as I am sure we all are. Especially so when they have had such a good recovery.

How he has managed to turn his illness around with diet is good to read about. The no starch diet seems especially beneficial to people with AS. Okay it may not help some of us - but it is only enthusiasm on his part I believe, that comes from his getting well, that makes him eager to impart his knowledge to all of us.

At the moment I am looking into the Paleo diet. Has anyone tried that? It is meant to be good for people with auto immune. Would be keen to hear from anyone about it....x
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Date: 14.04.2012
From: Suz

Subject: Re: Pain Management

I agree with you patricia,

Sean is telling us about his experience and how it helped someone with alternative approach. Its good nature to share with everyone specially when u hear people in so much pain and they are using all these new drugs with no relief.

Hats off to you sean!

I heard of the Paleo Diet and its quite similiar to the kind of diet Sean is referring to.

the diet seems to be helpful for autoimmune conditions even though its very restrictive.

All the best x
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Date: 14.04.2012
From: marlene

Subject: Re: Pain Management

Hi Sean, no I certainly did not say you are wrong to post on here.Dr. Sangitas posts from her followers were very forceful not advising gently but saying you will listen and beleive what I am telling you. We all have our opinions as you said this is a forum. I will not get into a war of words with you or anyone else on this forum. I have been on here a long time. Most people on here know me quiet well through my posts.Oh and by the way I take great offence for you to imply that anyone would be persecuted on this forum. No one ever has and never will be. I have nothing further to add.
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Date: 15.04.2012
From: DAVINA

Subject: Re: Pain Management

WELL AGAIN MY POST HAS BEEN OVERLOOKED.
SEAN COULD YOU AWNSER?

ok sean was you diganosed with erosive or non erosive as i have?
no matter meds or not its unlikely my bones will be danaged so you may not be helped by just the diet.
i understand you have your veiws and believes but i and others don't believe that diet would help.
i'm guessing you still have flares how do you deal with them and if you have no meds at all how can you speculate?
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Date: 15.04.2012
From: Deborah

Subject: Re: Pain Management

Hi sean,
Thankyou for your post on your experiences with what works best for you it is nice to hear a different point of view,

but I just want to say that everyone's arthritis is different there are so many forms and level's of severity and any person who has been diagnosed and come on to this forum for advice are told that the best port of call is the doctor and the various drugs that are available to them.

The reason this is the best way forward is that we (all fellow sufferer's) don't know how severe their form is, and if any inflammatory condition is ignored it will lead to serious disablitiy.

In my experience any one who did not go on any form of serious drug were left really crippled which is something we all try to avoid, because I have had family member's who have went down this route of trying different diet's and not taking the drugs that were prescribed for them only to find out to their peril that they should have because of course they did end up really crippled.

There have been 5 generation's of my family who have had this form I have pa and our form has been extremely severe and if you go back to the first that i know of, he was born around 1870 and as there were no drugs then, he became very crippled of course then no one knew what was wrong with him. Also I don't think diet would have made a lot of difference then as there was not a lot to eat at anytime.

The form of arthritis I have was not known about until 12yrs ago they did not even know that it could be passed from one generation to the next.

I have found that there are a lot of different thing's in people's live's which seem to make the disease revelant or there in the first place,

they are stress,which part of the country you live in,damp wet parts,how active you have been it will usually be people who have been very active in their live's and how much pressure has been put on them from an early age.

But if you find that your way of dealing with the disease work's for you that is good and if it can help someone else that's even better, but just remember that we who have had an horrible illness like this for a long time and from an early age benefit from more experience of the different type's of treatment's and drug's out there that is why we any of us on here advice to get treatment quickly because you don't how severe their form is.

And if we sound negative and scary to younger member's it is because we are worried for them because we have been through it all before and just think if that did work for us we would be the first on here to say so also just remember that are a lot of people out there who are making money out of people's misery by saying this work's and that work's I am actually getting fed up with it.Deborah.
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Date: 15.04.2012
From: Sean

Subject: Re: Pain Management

Hi Deborah
When I first posted on here I don't think I appreciated or thought of how serious the other contributors conditions we're - they were really specifically addressed to the original question asked by the poster - and Stephen asked about diet and supplements. Also advice to younger sufferers be they 18 or 23 or 30 should as you say be tempered by how severe their symptoms are - for me this then determines whether an alternative is tried first.

My best friends mum has just been put on a low dose of Methodrexate for Arthritis - and he asked if I knew anything about it. He was really concerned that she was getting a funny sore throat at night and some lumps on her legs. The thing he was more concerned about was that the doctor she saw - would make no decision on whether she still needed to continue taking or stop a previous drug - as it was not he that had prescribed it originally.

I read up on PA and it makes me realise how lucky I am with my less extreme condition and my ability to control it - I too have some fusing left in my sternum and ribs. It sounds like you have a lot of knowledge of PA and I hope you don't mind me asking you a question...

Is the link between Streptococcus and Ps arthritis ever been mentioned on here or by your doctor - or the use of anti-biotics. Is this old news for you?

Many thanks, Sean
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Date: 16.04.2012
From: Sean

Subject: Re: Pain Management

Hi Davina - I can see that I missed your question. I have AS and with the calcification in my ribs and sternum and a reduction of mobility in my back and shoulders - so I guess that's erosive.
I take the odd ibruprofen for my flares but mostly follow a regime to just be stricter on my diet, take extra supps especially one that I take with Magnesium in as this reduces my inflammation. (please check with a health practitioner before taking the same - especially if on meds that might react) - I do a lot of lying on my front trying to stay straight but also stretch as much as possible.
I don't know much about you or your arthritis so I cannot comment on whether I think a diet option is right or a good idea for you - but in general I don't see that erosive or non erosive really matters.
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Date: 16.04.2012
From: Deborah

Subject: Re: Pain Management

Hi sean,
Thankyou for your reply, I am so glad that you have a milder form although I am sure it is not mild to you I just refer to your form of arthritis as milder as I have saw such severe form's of it.

Yes I agree with you when you mention an alternative should be tried it certainly should for the right case's and when I was first diagnosed they did try various other treatment's and I myself tried other treatment's but the problem was my inflammation level's just kept getting higher which meant although I did not notice it at the time my joint's were being damaged but would have noticed it maybe a few month's later and that is the problem with all anti-inflammatory (erosive) condition's is that you cannot waste time trying different treatment's because when you are first diagnosed you will have usually had the disease for a long time as it is quite severe when it show's up in your blood test's therefore time is off the essence this is why you are offered such hardline drug's because they need to stop as much damage being done to the joint's as possible if the joint's are damaged badly there is not much they can do to treat you but even if they can slow it down a bit it make's it easier for the health professional's to treat you and maybe give you a better quality of life for longer, with the (non erosive) you have more time as it does not cause so much damage so quickly but they are still both damaging to the joint's.

sorry to hear about your friend's mum, what form of arthritis does she have? I presume it is an inflammatory form that is why she has been prescribed a low dose of mtx as for the sore throat and lump's I know that sometime's these can be side effect's of the mtx but what did the doctor say about them? did he seem concerned? as for the drug's if her specialist prescribed them a doctor will not undermine the specailist's decision as he is the expert this is why he would not make a comment.hope you don't mind all these question's but if your friend's mum has not been on mtx long maybe he know's that there are side effect's with this drug and is just giving it time to settle down, but if she has been on it a long time tell her to see another doctor and get his opinion hope this help's.

I was just reading that you have fusion in your sternum and rib's sound's quite nasty to have you any other problem's? was reading on your post to davina that you lie straight and stretch as much as poss I do this to because you need to do this to keep you from getting to hunched up plus it help's all your musscel's I also do circles with my hand's and feet to keep them moving the secret is to keep everthing moving but not be to vigorious.

Yes there certainly is a link between Streptococcus and any inflammatory arthritis as this is what trigger's the disease off in the first place some bacterial infection but as it only happen's in the first place there is no point in treating the problem with anti-biotic's as it has come and gone.

I do hope you are well and as I said it is really great that you have found a way to control your disease and it was interesting reading your post in the first place it was refreshing I just wish we could all benefit from something too and I hope that even one person can benefit from your experience it will have been worthwhile so am really glad you did post.As for the comment earlier about being fed up it's just that you get fed-up with this advertisment and that saying this will cure arthritis and that when i know that the damage I already have can never be cured only the pain eased.I have tried to answer your question's to the best of my ability and hope i have been some help to you take care and keep stretching as I will be too and hopefully we will get over these horrible disease's we have Deborah xx
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Date: 16.04.2012
From: Paula

Subject: Re: Pain Management

Hi Stephen,
Firstly, sorry that you have OA at 38, you have been through a lot. My mum was diagnosed at 26 with 0A, my grandfather has it too he was 50 when first diagnosed and he is 86 now and housebound. My brother has PA he was diagnosed last year finally, after having it for three years. He is 37 and I was diagnosed with RA in January and I am 40 although the problems started quite a while ago. To be honest, these things happen at any age and to anyone and there is no rhyme and reason as to why, it does. If you want to look at lots of options then that is all power to you, I do not know much about the diet or complimentary therapies side, and for me, I am still pretty much at the beginning of my journey. Maybe have a look in your local area about complimentary therapies and local health food shops see what they can suggest. Maybe a chat with the GP too? A lot of GP's are more open to a lot of things now then they used to be, although the doctors leave it to the patients if they want to try alternatives, after it is the patients body the disease is happening to. They want to stop the disease from being destructive and disabling so that we can live our lives, but if you want to look at other options it's up to you. I practice or try to, mindfulness meditation it helps me with the stress, and when I am tired, it is the tiredness that gets me, it does with all with all kinds of arthritis and there are so many. However, I am grateful to the doctors for the help and support they give me, I have had problems with the meds, but I am still trying with them because I want to stop the joints from disbling me even more than they have, and the last steroid injection is helping. I really hope you find something that helps you, and I am sorry I could not be of more help to you, take care and good luck xx
Sean, if whatever diet that works for you then good for you, thanks for sharing your story. We all have different levels of different forms of arrthtis, auto immune diseases etc, and I know I for one am gratfeul for all the advice and knowledge that has been given to me since I have been on here. I was so scared when I started having problems and the first trip to the gp and then to the rheumatologist is something I will never forget. This forum helped me so msuch in that I was not alone, as I was not and still not getting a lot of support from family and friends. I thank this forum for that. Everyone plays a part in our journies with the disease that we have, the doctors, the fellow sufferers, to name a few. One comment I picked up on is when you say "a true ra sufferer" well the x rays picked up my disease, I would rather not have it but I have, and I have to build my life around it, somer days are better than others, but it can be a variable disease. My mum, grand dad and brother have better days than others. We are all brave people who struggle eveery day with a life still to be lived. Whatever we have let us hope that the amazing scientitists find a cure for whatever form of arthritis we have, that intself is a miracle. I will end this with do not give up, if you want to try something give it a shot, it is up to you. We all have different ways and different ideas. We all have a different view whatever they are, and it is good that there is a place like this where we can get them heard, we may not agree and may not like things that are said, well agree to disagree. We all just want to get through each day as best we can, life is a rollercoaster ups and downs, and very, very unexpected you never know what will happen, or when or how. My favourite line from a great film "Life is like a box of chocolates you never know what you are going to get." That sums it up. Take care all, x
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Date: 20.04.2012
From: Tilly

Subject: Re: Pain Management

Hi everyone. I have just been reading all the comments on pain management, most interesting. I have had RA for 16 years and was very sceptical at first about taking mthx. In fact I refused it for quite a while convinced I could cure it with either diet or supplements. Eventually I gave in and have been quite stable for a long time. However in January my husband died and the stress of that has had a profound effect on me. I am normally quite laid back and stress free and I do believe stress is a cause of lots of ailments. Also I am a sucker for reading about supplements and trying them. At the moment Im on co-enzyme Q10 which is supposed to help with memory etc in older people. Cant say I have noticed any difference yet. I have also started hydrotherapy two weeks ago and felt great u7ntil yesterday and now have pain in leg thats hard to define. Its as if the skin is sore to touch. I find these occasional bouts of pain and general malaise are hard to deal with but the only thing that helps me is rest. I am lucky that I love reading so can pass hours away. And after reading some of the posts on this forum I realise just how bad some people suffer. Another worry for me are palpitations which I have had since my teens but they are so frightening and have got worse. I waas diagnosed with atrial flutter but have been discharged from the cardiac unit. Its a worry because I know RA can affect the heart. So Im in my 72nd year (30 at heart) and want to go on a cruise this year but have no one to go with. Am I brave enough to go it alone? Watch this space.
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Date: 20.04.2012
From: marlene

Subject: Re: Pain Management

Hi Tilly, sorry you have lost your husband. You sound like a real fun loving lady. Let us know if you go on your cruise. I wouldn't worry about your heart flutter if they have discharged you. I have a pacemaker have been discharged and was so worried to begin with but touch wood I haven't looked back. I had this at 57 and now I am 61. I try to do everything to live a full life. Off to paris for a short break soon. Never done a city break looking forward to it.Take care x
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Date: 21.04.2012
From: davina

Subject: Re: Pain Management

I do think erosive/ non erosive is a big part of it. Yes you are having problems with Mobility and (maybe/maybe not) but if you did take the meds out there it may have prevented the damage. U do see why you want to oped out of taking the meds but would you not want to do everything possible to prevent it. Giving the newbies this advice is yes letting them know all the options but to me your missing the main reason for the meds.
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