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Date: 30.12.2015
From: Emma

Subject: Arthritis attacks

Hello. I've just found your forum and feel so pleased. No one around me has this condition and aren't sympathetic. I have the disease in my toes, spine, hip and hands. The latter causes the most misery as I write a lot, even typing hurts. When an attack occurs I can stay in but without use of my hands, I sink into depression. How do others manage?
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Date: 31.12.2015
From: Sean

Subject: Re: Arthritis attacks

Hi Emma,

Do your attacks come and go? Are you on medication?

I don't suffer to the same level as some but get the odd attack in my lower back and hip. Was pretty bad for 2 days over Christmas, sore / stabbing but not too painful.

The lack of understanding and sympathy is normal even when I try and explain what I think has caused my flare up :)

I've had a few worse flares over the last 5 years where I have struggled but generally got it under control.

I tackle my Ankylosing Spondylitis using diet and am 100% sure that any attacks I get start in my gut.

This 2015 lecture by a highly respected professor Alessio Fasano explains autoimmune diseases perhaps better than anyone else - it's long but entertaining and quite light

https://www.youtube.com/watch?v=wha30RSxE6w

So I manage with diet because Autoimmune disease is not just a runaway train it can be limited by controlling environmental factors.

Autoimmune Disease is

Predisposing Genes + Initiating Environmental Trigger + On Going Environmental Factors

I believe that flare up / remission are changes in environmental factors.

I truly hope you find some relief soon - like others on here I'm happy to share what else I know and do!
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Date: 04.01.2016
From: Abbe Gallacher

Subject: Re: Arthritis attacks

Hi Emma

I'm Abbe, I'm 21 and have struggled with arthritis for a number of years now. Like Sean, I don't think I suffer as badly as you. My ankle, elbow, jaw and a couple of fingers are affected. My elbow is my main concern and I often feel depressed because of it. I take a lot of hot baths, my mum adds a cocktail of himalayan salts and blend of natural oils. I found they really relaxed my joints and the heat helps so much. I try and bath every morning, or shower, which eases my joints. If I don't I find I'm too stiff to begin the day properly.
My mum has also bought me a lot of creams, devils claw and blue ease are a couple of my favourites. If you live with anyone who can massage these into your joints they work wonders!

Hope you reply soon, would love to hear how you're getting on and hope you are well x
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Date: 06.01.2016
From: Emma

Subject: Re: Arthritis attacks

Thank you both so much for responding. I've only just visited this site today as I admit to being a bit depressed. Now the thumb joint of left hand has swelled up and is painful to move. The next day my right hand one began so I went into a slump. Reading your responses has lifted me a bit.

SEAN:I've noted your advice plus YouTube address. Thanks ever so. I don't want to consume large numbers of pain killers so haven't seen my GP for ages.

ABBE:I hope you will grow out of this rotton condition. It has happened. I know about warmth helping but not the 2 massage items you mentioned. Can I get them from a health food shop?

I never dreamt that anyone would answer. It's a nice feeling knowing you aren't alone.
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Date: 06.01.2016
From: lois

Subject: Re: Arthritis attacks

Hi Emma, Welcome. Have you been tested to see which arthritis you have?
I understand that you don't want to take pain killers but being in pain is one of the reasons we get fed up/depressed. We also need to be careful of joints being damaged.
This disease is a horrible one as we look healthy on the outside.
It is hard for any one to understand how we feel on a daily bases. Get some leaflets and leave them around for family and friends to read. We also tend not to ask for help and we should because friends and family don't know we need help if we don't ask.
Take each day as it comes and rest up when you need to.
We are always here for you. Shout rant laugh cry we won't mind. This is a great place to come even if it is just for a chat or to say guess what happened today.

Take care and chin up x
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Date: 13.01.2016
From: Emma

Subject: Re: Arthritis attacks

Thanks Iois. My GP just said that I have arthritis and will have to learn to live with it. He was so practical about the diagnosis, as if I had an upset tum or something. I thought of changing this GP but living in outer London there isn't much choice. So for the time being I'll have to grin & bear it. Thank goodness IT has been quiet lately although today I had a quick attack in the left foot. Out at the time so was worried that I'd have to limp heavily. Makes me look vulnerable which I hate because of bag snatchers & the like. Do others feel as if this disease signposts you as a possible victim? Anyway it passed after I manipulated the foot for a while.
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Date: 13.01.2016
From: lucy

Subject: Re: Arthritis attacks

Emma, have you had blood tests done? If not then I think you should demand them. There are so many different types of arthritis and it's important that you know what type you have so that it can be treated properly. Is there not another GP in the practice that you could see? ps. I wear a cross over body bag as I feel more secure with it.
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Date: 14.01.2016
From: Barry

Subject: Re: Arthritis attacks

Abb, I would mention go easy with the Devils claw or any unregulated substance, especially if you take any prescribed medication, Devils claw I substituted for diclofenic, they both really hurt my stomache, would never touch either again
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Date: 16.01.2016
From: Emma

Subject: Re: Arthritis attacks

Hi Lucy,
I'll try to get a blood test although it's not easy these days to get much from the surgery. They're still taking more patients too. Hardly enough time for the ones they've got. Yes, there are other GPs. Mostly locums though, so don't stay long. Will have to be a nuisance. I do the crossover bag now. Still shy away from using a walking stick.
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Date: 16.01.2016
From: lucy

Subject: Re: Arthritis attacks

HI Emma, You are not being a nuisance at all, you have a right to be seen and treated properly regardless to how many patients they have. It's not good enough for them just to say you have arthritis and then dismiss you, you need a blood test to check for inflammation and a referral to a rheumatologist. With the right treatment you can stop the progression of it so please be firm and get referred to a specialist. x
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Date: 17.01.2016
From: Barry

Subject: Re: Arthritis attacks

Emma, you mentioned having to grin and bear it, I remember the pain of arthritis in the first few years, an in competent doctor then putting me on a medication that not only didn't help it led to a head full of insanity with unbelievably loud tinnitus I still have, the misery that followed, the doors that closed in my face, being told I'd just have to grin and bear the whole lot of it, the lack of support from anybody around, the depths I sank too, the vulnerability of my existance at that time, well, I came to realise that only I could change things, it took time, I'm still working on it, may take the rest of my life, I realise now my limitations, work within my ' comfort zone', write things down, plan them out, don't clog up my mind trying to remember it all, realise you are important, we're all special, take those painkillers as and when, give yourself, hopefully, a pain free break, recharge your energy. So many people out there, healthy people, are not in control of their lives, I've learnt to exercise far greater control of mine, pain has at least helped me in that direction, I'm not dependant on others, I'll get there just the same, keep at these doctors, find out what you need too, don't be disheartened by any negativity, pain thrives on that, realise your ailments, I've found all sorts of movements, exercises, to ease, relieve things, I've learnt so much about me, what makes me tick, when it all gets to much, lay back, relax, let it all go, I find when I do that I listen to my body, I learn to work round pain, strengthen muscle groups around painful areas, eat healthily, think positive, it'll come, give it time, barry
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Date: 18.01.2016
From: Emma

Subject: Re: Arthritis attacks

Yes, I will do my best to get that blood test. It's so nice to have others to talk to about this. Horrid being the only one with this disease in my circle of acquaintances. I've turned my back on the " fair weather allies". People who have never suffered this pain do not understand. Of course that applies to everything. The GP is quick to give out antidepressants though. I hope things aren't too bad for you at the moment.xx
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Date: 18.01.2016
From: Emma

Subject: Re: Arthritis attacks

Hi Barry.Your story sounds so sad and then begins to uplift. I hope you have others around you to offer support. I think this does help to encourage when things seem at their darkest. Your words are definitely strong and I shall return to reread what has been said in all the supportive conversations. I also have tinnitus. Being stressed makes the ringing, buzzing and humming even louder. I'm taking meds to help me sleep. You suggest relaxing. Now that's the hardest of all. Escaping from intrusive thoughts - that's the rub.
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