NRAS
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Pain

Hi everyone,

Seeing the consultant tomorrow and I am quite nervous. I've been struggling to get in and out of my car and to dress my self. Apparently feeling like an 80 year old is the norm now. Really struggling to be happy and stay positive 😔. Just hope the pain eases in time for Christmas. I hope you are all well x

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Welcome to the Octogenarians!

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It's so hard to stay positive when you're in that much pain. It's relentless. Just keep in your mind that this flare will pass and things will start to get a bit easier. I had my first ever flare in January and turned 40 in March. At the time I thought the pain was never going to end! But thankfully it has mostly passed. Feels good to be more like my normal self again. This will happen for you. Take care.

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Mhairi54 is right to say that, you will be fine after the DMARDs works in your system, that will take some months, therefore you need to be a bit patient with that.

It is indeed very depressing and hard to stay positive when your RA flare up. I was once like you, had a lot of difficulty to get in and out of the car, my daughter could not understand why but waited patiently for me to make any move. Now I am pretty much back to my normal self except that I still feel a bit of different in my joints when I move them. I am working on to be back to exactly what I was before I was sick, I am not sure if this is possible but I will try and I will check with my rheumy on that.

I find in keep the blood works in excel worksheet can give me a good ideas of my own performance and I can ask my rheumy when I see any marker out of range and I can also see the performance of each item.

Take good care.

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Like you Amy_Lee I keep a spreadsheet of all my blood test results. I also keep an e-diary of any inflammation/aches/pains. It comes in very handy when I see my Rheumatologist.

Like you I can then flag up anything that is outside of the range it should be at. Taking back some control puts my mind in a better place.

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Yes, this is the way to take control of our situation. Beside keeping the medication record, we need also to keep a list of what we eat and the response of our body. It really comes handy when we see the rheumy with the record in hand.

I also make a list of what I want to ask before I go for my appointment. As and when I think of a question, I will add it in the words file pending the appointment. My rheumy always laugh when he or she see me with a long list of questions in hand. They always remind me of the list of questions to ask before I leave them.

In Malaysia, in our local government hospital, there is no one special rheumy for a special patient, therefore I always see different rheumy when I go for my appointment. Usually there are the few of them who take turn to see us, therefore I can get different opinion for the same question I have in mind. It is good and bad, because they always need to go through our files again and again hence it will take a longer time to see each of us. But it is good that we can have different opinion from each of them at different timing.

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We seem to be the same Amy_Lee. I too keep a paper record. Although I was diagnosed in 2012 my A4 lever arch file (sub divided like you) is almost full.

For me diet is a controversial subject. You see I am a Food Scientist and if there was a magic bullet with regards to diet then we would all be on it. If individuals do have trigger foods and it helps them then I am VERY pleased for them. For me it is all about eating well. I have eaten VERY well for years - but hey this is my profession so I should! But certainly in the UK many people don't eat well and many who think they do don't. We must make sure that if we leave food groups out as we feel they are triggers then the essential vitamins and minerals MUST be replaced. However what has helped me has been Omega 3 and what I also take is Turmeric.

I don't know what the system is in the UK as my local hospital failed to spot my symptoms and so my Doctor referred me to a teaching hospital and I requested to only be seen by a senior Rheumatologist and they agreed and put it on the front of my file. So I am only every seen by the same person unless I am very unwell and then I am seen by the senior Rheumatologist and the Prof (head of department). Can you not request to see the same Rheumatologist?

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Haha.. we have very similar attitude toward our illness and our life style. I was a very healthy person before I was diagnosed of RA in Jun 2014. I went to yoga classes 3 to 4 times a week, I went for hiking during most of the weekends. I ate very healthy food everyday.

My breakfast were cereal, cheese and egg with toast. I ate normal rice, fish, chicken and vegetable for lunch. I only had fruits for dinner. I hardly took any red meat. I did not take much deep fried and oily food. I do the same now but very much less dairy products and no fruits for dinner. I took fruits now before breakfast in the morning but lesser quantity. I do believe diets can help us to maintain our remission but I do not believe it can cure RA really. Now that you are a food scientist, you should know best of this. Hahaha...

In addition, I hardly got sick and I took no medical leave for years. Unfortunately, when I was in pain in Jun 2014, I was really very very sick and in great pain. I did not understand why me then? But then, before I was diagnosed with RA, I had an injury on my right hand after I trimmed the tree. It was never heal and I had an operation after about 3 months to remove the part with inflammation, again it was never heal after about 9 months.

After I was diagnosed with RA and I was put under mtx, the injury was just heal by itself without me knowing it. I believe it was because my whole body was in great pain therefore I did not feel the pain anymore about the little cut and inflammation on my hand.

In the government hospital here, we have no rights to ask for a special doctor for treatment. Therefore many rich people who can afford to pay a very much expensive medical fees will not go to government hospital. Being a single mother, I have to fund my son's education hence I always go to government hospital for treatment. I am very happy with the doctors there really. They spend time to discuss with me of my problems and there is no conflict of interest because they are not in business on their own. In fact, the very first consultation that I had before the rheumy started the treatment on me, she asked if I had anything that I wanted to know before she started the treatment. I asked about the steroid and the side effects of the treatment and so on. After her explanation, I decided to surrender myself to her for my treatment and worked very closely with the hospital ever since.

I did not follow any diet plan but I am in remission after 1 1/2 year treatment. In fact, I was already very much back to my normal self after a year of treatment. My rheumy said he wanted to observe me further, then another half year was gone, he finally declared that I was/am in remission. I am so happy to receive that piece of news from him directly because I was hoping so much into remission and I was not such what remission was all about then.

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Good to hear you are eating well Amy_Lee. And I am happy to hear you are in remission! Heaven!

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You're really not doing well are you Cydney, I'm sorry. The MTX probably hadn't had chance to start working & then having problems plus coping with a flare it's not surprising you feel 80. I do hope your Consultant will be able to suggest options, even a steroid injection to settle things down & talks you through your options. Has your breathing & migraine settled any, what did your GP have to say? x

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Saw the consultant today and she suggested sulfasalazine. So I'll give that a go when I get my prescription. She's going to give me my steroid injection after Christmas as I have an ear and throat infection and my chest is tight. I had my X-ray today, so hopefully my chest is clear. My migraines have settled and my breathing is getting better, I just can't rush around like I used too. I'm getting there, at the minute my dog is the best thing to keep me positive. My GP is going to call me when he gets the letter from my consultant. So fingers crossed I am going to be okay on this new drug!x

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I do hope so Cydney, it was my short lived third DMARD. I'm pleased your breathing is getting easier & the migraines too you just need to get over the infection. Fingers crossed for positive results. x

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Hi

I too was once where you are now, and just about the same time of year.....I was diagnosed 3 years ago and had a horrible first year. As you describe, shuffling around like an 80 year old.....in fact worse! My mum is in her eighties and was far more agile than I was at that time. Hold tight to the thought that it will get better once you are on the right meds, it just takes time to find the right combo and for them to start working. Have you had any steroid jabs? That might help you through the Christmas period and while waiting for drugs to work?

I've been fine for the past 2 years now.......getting on with my life, working,exercising and feeling quite well.....you will get there too X

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It takes time, but when you're in pain and can't do most things your friends are doing it becomes very frustrating. But my friends and my partner have been amazing. Even though they did joke about buying me a wheelchair for Christmas!!

I'm getting there. It's just difficult when you're in pain.

I can't have my steroid injection until my infection has gone x

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