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Date: 25.04.2014
From: Rachael

Subject: Hello all

I've not posted since March as I'm feeling very down about the whole thing.

I am still in constant pain with my wrists/hands/fingers. Sometimes it hurts to touch things.
Both hands are puffy ( I can't wear wedding rings)
I now use a walking stick because of my hip & foot.
My joints are constantly clicking which had never happened
before.
My bone scan was negative
X-Rays were negative (which usually are unless arthritis is
advanced)
Nodules keep coming up on fingers, hands and feet.
My grip has deteriorated in both hands
steroid objection didn't work (she said it was a 50/50 success
rate

I'm due back at work very soon and with the nature of the job I know pain will increase.

Only pain relief I can take is Co-codamol which doesn't touch it.

I have another appointment on 29th with my consultants colleague. Can't help feeling written off.

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Date: 25.04.2014
From: Sean

Subject: Re: Hello all

Hi Rachael

I have had hip pain in the past and I really feel for anyone that is still in pain despite medication. I am seeing lots of people posting at the moment saying that they are still sufferring.

You probably know I dont do take the drugs and my arthritis is AS than RA.

The only support and advice I can offer are these links below - your doctor and rheumatologist may not be aware of these -

From 1986 (the treatment is still going strong today in private clinics) -

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2886%2990774-9/abstract

http://www.ncbi.nlm.nih.gov/pubmed/2868255

From 2012 -

http://www.ncbi.nlm.nih.gov/pubmed/22109896

A good article from 2013 I found on approach - if you only read one of these links then this is the one that might help you

http://www.todaysdietitian.com/newarchives/021313p38.shtml

The article above refers to work done in the last few years by Alleso Fasano - at University of Maryland. I beleive that his work will eventually change the way that we look at bread forever.

In short if you stop eating Gluten containing foods then your gut lining can become less permeable - and for some that will stop access from the gut of large proteins and bacteria that start the chain reaction of autoimmune diseases. For example bacteria as discussed here - note the similarity between AS and RA !

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290812/

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Date: 25.04.2014
From: Julie

Subject: Re: Hello all

Hi Rachael, sorry your feeling so down, you need a hug, here's one from me.

I totally agree with Sean a lot of our problems are from food, I know myself I was in agony in my hands and fingers after eating oranges, I thought I was doing myself good with vitamins but I was actually boosting my immune system, totally wrong thing to do.

You didn't say what you are diagnosed with (sorry if I missed your last post saying what you had) but whatever it is you really need more help to manage the pain. Read the links Sean has sent he is very knowledgeable and gives good advice.

I have RA and I find a course of antibiotics always helps my symptoms, Ive just come off a weeks course and I feel absolutely brilliant, no pain whatsoever and no swelling. Perhaps you could ask for something - tell a fib and say you have sore throat, its worth a try.

Take care and try to think positive although when in pain its not easy. Don't go back to work if you can manage not to, look after yourself.
xx

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Date: 26.04.2014
From: Sue

Subject: Re: Hello all

Hi Rachel
Oh bless you, it's so awful to feel dismissed when you know how bad the pain is and how much it affects your life.
The advice on changing diet is very good.
I also discovered that both broccoli and spinach can be problematic with arthritis. I love my greens but have eased up on them and it has helped.
I am a hypnopsychotherapist, retrained when my mobility stopped me from driving and I took early retirement from my job I use hypnotherapy and relaxation to ease pain , even works on flares with RA.
I would urge you to not give up on pushing for more support from the medical practitioners. All too often we go in preparing to say how bad things are then try to be brave and don't always convey the fullness of the difficulties.
If you can take a friend to an appointment, they will support you, take in information, tell it how it really is. We go in, sore, tired, fed up and just want to get out. It is easier to be rushed out.
I hope you get sorted and more support.
:)

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