The start of something?...

[Suki1088]

Hello, I am a newbie and so I am just testing the waters with the whole online community thing. I have always found it very difficult to discuss my RA and the challenges of living with the condition and so I am hoping that HealthUnlocked might become a place I can talk about some of my experience / concerns / frustrations.

I am a 28 yr old female and was diagnosed with JIA at 16. I have since been given the RA diagnosis mainly due to the persistence of the disease and my age. My attitude towards my RA is a stubborn one. I have lived through most of the last 12 years in some state of denial about the severity and implications of my illness. Even when I had to use a wheelchair a part of me refused to believe that this illness was a part of was my life.

I have been on a cocktail of medication, as I have been resistant to most of them, including several biologics and I have recently been put on Tocilizumab as a last attempt to find something to calm my symptoms.

I've been off work sick for two days which is something I never do as it makes me feel weak and guilty, I've become an expert at hiding my illness and very few people in my life know about it which is why I've struggled to discuss it in the past but I'm feeling very unwell at the moment and I'm hoping talking / venting a little might help.

Apologies for the lengthy post!

[JacquiThomas999]

Hi, welcome to the group.

I find the group supportive and understanding. I am only a year into this horridious disease myself. You have a lot of knowledge.

Sending hugs.

[Philip]

Long post!!! it has only taken me 3 hours to read it, what I do is write very slowly so that people like myself, can read read it and because I can't read very fast.

Anyway welcome to the MAD HOUSE. there are of funny people here so you'll fit right in but they are all very lovely people too. tons of advice and support. ENJOY.

PHILIP

[Boozybird]

Hi Suki, I'm new here myself but I know about debilitating illness and the greater world around us. It's hard out there in the facebook world where everyone's having fun bla blah.... I think hiding your illness is a protective mechanism which helps you live as normally as you can but it's hard to cope inside and one needs support and kindness. Hopefully you'll find it here. Best wishes 👍🏼😜

[oldtimer]

having spent many years hiding the RD, I can understand. But accepting that you have a long term illness that needs to be managed is part of the process of managing it better.

You need to find a way of communicating that you have a serious, log term, illness to others so that they can help you. Most people want to help once they know help is needed and will give freely (as long as we don't abuse that).

Telling people that you have an auto-immune illness which attacks your joints may be better than saying you have Juvenile RA - as most people don't know what that is and will think you are kidding them - people your age don't get arthritis!

And practice how you can ask for help in a straightforward way, e.g. I use "Can you help me open this door? I'm afraid my hands aren't able to grasp this type of knob." in a matter of fact voice. But it has taken some practice - both to ask and not to feel bad about it!

[Gigi71]

Please don't apologise, you are among friends here, who will help and understand how you are feeling. You will by reading various posts be able to identify with people going through the same as you. Also you will be able to offer advice as well, as sharing makes a great deal of difference to us. Take good care of yourself. X

[popsmith1874]

Hi we are all friends here who understand what your going through and we all support each other when down in the dumps and give each other advice when possible , we are all in the same boat so welcome to our extended family xxx

[Suki1088]

Thank you all for your welcoming replies.

I have a question. Has anyone here used diet as a means of treating their RA? I have made some 'attempts' at making changes to my diet for a few months at a time but never feel I have fully committed to the dietary overhaul for various reasons / excuses. I watched the 'Paddison Program' video posted and it tapped into a few things I have been curious about for some time.

My interest in this comes from my concern about the longterm effects of the medication I am on and for the amount I am currently taking, I don't feel I'm getting the relief that I should be....

any thoughts ?

[MickeyJoints in reply to Suki1088]

Ah, diets... I'm on a Mediterranean-Paleo diet which does help reduce the symptoms I have. I found sugar to be a trigger for my body and it does better without excessive amounts. I still have a treat now and again - like a Magnum!

I'm reducing dairy and gluten - the latter because I've realised irrespective of RA, too much makes me sleepy. I eat splet bread now. (6 hr bread program if you have a machine).

Frankly, it's the usual suspects as far as diet goes. Caffeine, sugar, wheat - excessive and processed anything are to be avoided.

Good luck.

[Gigi71 in reply to Suki1088]

Like Mickeyjoints, my diet is along the same vein. Low carb high protein, no processed foods, very little sugar, caffeine free, gluten doesn't agree with me, but plenty of other alternatives. I don't eat bread and I don't mix carbs with fats at the same meal. Oat based breakfasts natural bio 0% yogurts, berries, or eggs, home made soups or salads lunchtime. Simply cooked fish, chicken and some meat, flavoured with herbs and spices with loads of veg or stir fries for dinner. Has worked well for me, but still take the meds. Hoping you find something to suit your lifestyle as well. X

[MickeyJoints]

Not a long post. Really, you're going to have to do better than that to have a long post <joke!>

Welcome. This is the place to vent and rage. Unlike most of the rest of the world we know what you're going through and there are many here who can reply with support and a shoulder should that be needed.

[Gretchy]

Welcome. This is the best forum I've found. Lots of great people and useful information. Ive been diagnosed for about 5 months. I'm allergic to all the medication so far. I thought the research showed there isn't really any evidence for diet changes. Though people will feel better on a low sugar diet. I'm not there yet. I've had to give up coffee which I love and wine which I also love...giving up cake and bread as well makes me think I might as well give up and jump off a cliff now.

I recently read this book which is available on kindle. I thought it was very good, helpful and funny and like you she has had it since childhood.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain By Lene Andersen