Hello newbie here.....waiting for specialist, getting frustrated

Noninoni, can you give a link to that RA-stations paper? I'd like to follow it up.

I mean RA-statins of course.....

...though, who knows, with as many of us as there are with RA, maybe they'll be creating special stations for us to travel on specially modified RA trains...

Thank you so mch for your reply.....I am learning so much from reading here.

Yes. 20% in fact. I am one of them!

A little off topic (sorry) but you mentioned getting RA aides, does anyone know a website that specializes in RA aides? Right now I am trying to get a tankini to wear at the YMCA with a zippered front but only can find very expensive ones on the net. Nothing to buy around where I live. I've got a feeling I am going to be using zippers alot. It's hard to button clothes or get them over my head anymore.

Hi Lyn,

Thank you so much for the reply. I will for sure try some krill. I too have wondered about diet and may try eliminating foods. This forum is a wealth of information.

You had an enlightened rheumatologist to tell you to go out and consume 6000mg of fish oil. Briliant!

And 'a huge sense of less pain'....? Wow?

I mean I've known about fish oil for a long time but no one's ever prescriped such high doses for joint pain.  Your man may be onto something important.

It's not cheap though is it? Did the 'benefits' include diarrhoea or am I being pessimistic?

I take 2000mg and can;t honestly say I know what the differences are.

Most decent hospitals have an 'aid' shop, where they sell a number of things for special needs. But not sure they go so far as providing special clothes.

I had a huge probem getting into my socks, or sweaters over my head.... horrid. It will change though with treatment so don't spend moolah on stuff you won't use when you're well.

Just a thought.... If you're in London, Wigmore Street (W1), off Baker Street, used to have a slew of shops specializing in all sorts of special needs equipment, John Bell & Croydon being the best known (also an all-night pharmacist). That's because they're close to hospitals – or used to be – and right next door to the famous Harley Street.

Lisa - have tried Krill Oil, saw the advertising and thought that might help, or be even better, NOT A GOOD IDEA, in my case deveolped the most severe case of heartburn, neighbour was also the same, when we were discussing our aches and pains one day, she was taking Dr prescribed medication to help with heartburn. I suggested she get rid of the Krill oil, and just try ordinary odourless fish oil caps instead, a couple of weks alter came back and said the kearburn had gone, and she had been able to also stop taking heartburn meidaciton.

Light - Cheap here in Australia, $20.00 for 200 capsules, I don;t consider that expensive for the good it does.

Light - some benefits for me, unexpected are that my skin has improved out of sight, no more dry spots, my shins especially used to be terrible, like having paper dry skin, never used to be that way, but as I have got older become worse.

Extra benefit is that my hair is back to where it used to be when I was a teenager, lovely and thick and a little bit greasy, I must wash it every day now, but I keep hair very very short, like a boys hair cut, and just wash it under the shower aka boys style, when I get up in the morning. My skin around my eyes doesn't seem to have as many lines. I think my rheumo being a woman, understands that us girls, like to try and feel nicer with looking after our skin tone, and reducing wrinkles.

Never had problems with diarrhoea, but I always take with food, I seem to have less reflux that way, like burping fishey taste, nasty.

I notice when I haven;t taken my fish oil, my unaffected joints or closer to lessor affected joints seem to be more achey, and then when I go back on fish oil I have less pain.

Might be worth talking to my pharmacist about. You are making a lot of sense......I would hate to have tummy troubles on top of everything else. I am the same as you right now, my shins are awful and I find my hair doesn't grow at all...............

Ditto here!  We are talking about 6000mg a day, right?

It sounds great....

6 x 1000mg odourless fish oil, a day, 2 with each meal, 6000mg a day, I know sounds an awful lot.

Only danger is if you have high blood pressure, that warning is on the side of the bottle here in Australia. As I understand it that amount of Fish Oil can drop your blood pressure, so if you are already taking blood pressure tablets you have to work with your Dr, and adjust your blood pressure medication.

Only other issue I have come across is you have to come off them a week before surgery, as they act as a blood thinner, I expressed my disappointment to the hospital chemist when she told me that, and she said I could start them again the day after my surgery.

My haridresser when she cut my hair last week commented, on I have two or more heads of hair, she commented there is so much of it.

Almost pure white now, My Mum had pure white hair at 40, so I inhertied at least some of her colour, or lack thereof.

I used to colour it as it started to lose colour in my late 30's, but gave up after I had a nasty reaction, to dye. Enjoyed the in between stage, as I had a lovely white halo around my face, and the rest stayed darker.

This sounds terrific. How long were you on them before you started seeing results?

I think about a month or so before I really noticed the differences, for my hair maybe as much as three months, over the long term I notice when I don't take them, forgot them when I went on holiday, so thought, it won't matter that much, but by the time a couple of weeks had passed, started to notice that shoulders were just a little sore, again, and I was having dry skin patches again. Good motivation to get back to my usual 6 a day.

I realize that everyone's symptoms I am sure are different and I am currently undiagnosed but it does seem to fit....just seems to be happening so fast. Started with a middle finger on right hand, then left, then the last three fingers and now it seems the elbow joints are being affected too. One thing I have noticed lately too is that while my hands seem to be in constant pain, it doesn't seem to hurt as much grabbing things as it does when I release the grab.....does this make any kind of sense to any of you? THank you again for all the helpful info and insight. I finally feel understood.

Lisa - my Gp Dr thought my problems were post viral syndrome, Apparently our body can sometimes forget to stop fighting the virus it was attacking, and turn on our cartlegde, or other parts of our body, think its a bit of a grand lottery, what is attacked.

They don't fully understand what is going on with auto immunine, some research in various countries I believe, maybe we can live long enough to hope they find the cure..

Example, my sister and brother both have problems with auto immunine, as I do, my sister who is a very senior nurse, was speaking to me, at Xmas, like she said, yours was your hands for a start and then your hips, or maybe together, my brothers are only his knees, but he's in agony with those damned knees, or so he tells me, not looking foward to double knee replacement.

I dind't have the heart to tell him it could be worse than hips re pain immdeidatly after, or so they told me in the hospital.

My sister has some kind of growth on her tongue, that has to be removed (the growth), already been removed once, that too is an auto immunine issue she tells me.

Family llinks, yes possible, my uncle had double hip replacement in his 80's as well.

Not fun I know, and its worse when nobody is listening, you have lots of friends here on this forum, they are a great bunch and allow us to have our little cry out loud.

Thank you Lyn. I am trying to wrap my head around all of this, Thank you so much for listening and replying. It means more than you know.

Hi Lyn, I've been investigating fish oil (once again!) and I notice there's plenty of recent publicity about the quality of the capsules.... their content vs how much actual omega-3 is in each capsule and so on.

Now I bet in Oz there's reguation and all kinds of things, but where I am now (India) there's none whatsoever for supplements.

But I can source it overseas, UK and the US. So now Im going to ask you to name names, ie brands... because obviously you've found a quality brand if 6gms a day is doing that much for you, so could you say what your brand is and I can check if its available where I can get it.

Thanks!