Scared: Hello all This is my first time posting as I am... - NRAS

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Scared

Ninja73 profile image
16 Replies

Hello all

This is my first time posting as I am a new member from Australia. Until recently I didn't think I would need a forum such as this but unexpectedly my body appears to have turned against me!

All I know at this point is that in the matter of four or so weeks my big toe has suddenly become very painful along with my trigger finger. I originally thought it was gout, being a nurse I went about getting Uric acid test which were all clear. Then in a matter of days my pain has migrated to both hand, wrists and all toes.

This pain is so much I have had to take the week of work as I am unable to take blood pressures, and type consistently for notes etc.....

Have been to the GP and symptoms are looking like RA. X-ray of hands show no degeneration yet and am still waiting on bloods.

I have psoriasis and am aware that this is the same gene as RA, well I think? Am totally freaked at the thought of this and what it means to my career and life. I'm 43 with 3 teenage children. Thanks for listening.

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Ninja73 profile image
Ninja73
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16 Replies
Spring2017 profile image
Spring2017

Welcome Ninja!

First breath... do remember to breath.🌬🌬

🌟This is a brilliant place you have joined.🌟

Like you most of us here have gone through what you are and what you will over the next few weeks.

No matter if you get a RA diagnosis or not the people on here a super lovely and there is so much love.

I hope that you get good news from your future tests and that if this is RA you have, that you know you can ALWAYS ask on here for advice or an encouraging answer.

Do not start looking at Dr Google until you know more. It will be counter productive.

Have you had any anti inflammatory medication prescribed?

Or Steroids to help with the joints?

Have you been referred to a Rheumy (Rheumatologist) yet?

Sounds crazy but the steroids have worked wonders for me. As for the Other serious medication most of us are on we'll only time will tell.

I'm still new to all this myself. Only had my diagnosis for about 4 months now.

I'll be going back for check ups regularly but hope that come next year in April that my Rheumatoid Factor will be back to normal and all else will have stopped getting worse.

It will be the time to find out if I am in remission or will become a member in the "lifers" club. 😉

I can say IT was a huge step for me to start medication as I have always been reluctant to take pills.

I had my Methotrexate, steroids, anti inflammatory pills for 5 days before I took the first one.

There were moments of tears of relief as there was a valid reason for the pain I had "just" got on with for a long time.

There were tears of disparity as it settled that this mostly is a lifelong condition that will worsen.

That I couldn't go on the way my life/Work balance or lack of was.

But all through that I posted on here and so so many on here gave good constructive advice, they kept being positive and it really helped.

So keep coming back.

We will all be here waiting to share your journey with you.

You are not alone...🤗

Warcho profile image
Warcho in reply to Spring2017

Dear spring 17.what a reassuring and inspiring reply. We are truly blessed to have people like you on this forum.you give me hope.

Mhairi54 profile image
Mhairi54 in reply to Warcho

Hear hear!

Matalow profile image
Matalow

Well said Spring I totally agree. Try to stay positive Ninja it may take time to get a final diagnosis but there are lots of treatments available that will help you.

Hope things work out ok.

Regards Mike

Ninja73 profile image
Ninja73

Thank you, I have started in a course of ant inflammatory medication called Indomethacin and am currently taking 50 mg three times a day, rubbing copious amount of 'pain away' cream on hands and taking some pain relief the dr gave me. I have some relief but not for long and it's not gone completely.

I love my crafts knitting and crochet but can only do 5 minutes before it becomes too much.

Any chance this could just be a virus?

gwynedd profile image
gwynedd

Welcome Ninja73

I echo Springs advice, stay away from Google for the moment.

Have you been referred to a rheumatologist? As they have the expertise to be able to diagnose autoimmune conditions, not something a GP necessarily can do. If not you can ask to be referred, especially as you have psoriasis. Psoriatic arthrits doesn't always show up in blood tests, which is why a specialist is needed.

It's a scary time not knowing and sometimes our imagination can get the better of us and conjure up all sorts of awful scenarios. But it's important to remember that it's just our mind, not necessarily the reality of our situation.

It has taken me 2 years to get a diagnosis of Psoriatic Arthritis, it's not easy sometimes to diagnose, so you will need to be a patient patient 😊. My disease has its ups and downs and it has been an adjustment and a level of acceptance has been needed, which has been difficult. But this forum has been a blessing , lovely people who are knowledgeable and understanding , who support each other even when we're ranting!

I wish you luck and keep posting here as it's good to vent your feelings, frustrations and even to share positive stories. I hope you get to the bottom of your pains ect... soon.

All the best x

munchybunch profile image
munchybunch

Hi fellow Aussie! I live in Sydney and can recommend an excellent rheumatologist in parramatta if you live near there. This site is excellent and there is always someone who can help. Just don't google too much! Good luck

Zeet123 profile image
Zeet123 in reply to munchybunch

Hi I also Aussie. I am from Snowy Mountains NSW. And new to this sight. It seems very helpful and lovely people 😊

Yogi-bear123 profile image
Yogi-bear123

Hi,sounds pretty similar to my initial symptoms. It took a year and a half for me to be rediagnosed from RA to psoriatic arthritis. The treatments for RA don't work particularly well for psoriatic arthritis. My advise is to find a rheumatologist who is familiar with psoriatic arthritis. All studies show that if u can get on the right treatment within the first 3 months of symptoms u have a better chance of remission. ..I have been through all dmards and now on my second biologic and crossing my fingers!

Strayleaves profile image
Strayleaves

Hi Ninja and welcome.

I'm an Aussie too. What state are you in ?

Here's hoping you don't have R.D. , and you won't need this forum. If you do get a diagnosis , then you will find lots of very supportive , careing people on here. I agree , stay away from google, until you get all your results back .

I'm 52, a nurse as well , and two teenage boys ..... and would really love a dog! (Trying to talk hubby into it!!) I live in the Newcastle area.

I had a lot of trouble with my wrists and hands initially .....I used ice to help with pain , and also found that splints helped .

Yes it can be a scarey time ..!!!

....just wait until you have all your results , then you can deal with whatever .....

lots of people here who really do understand .

Karen

🌺🌼🌻

MOLLy8 profile image
MOLLy8

So sorry to hear this sounds like RA. I too was a nurses aide and had to give up my career. It started when I was 33 now I'm 63 and very disabled. I refused the pregnisones & Methotrexate. I stuck with NSAID in suppository form so it wouldn't affect my stomache. Anyway, Methotrexate has been around for 50 yrs and is suppose to be beneficial along with proper diet. Diet being the key. Hope this helps.

Ninja73 profile image
Ninja73

Thanks everyone for taking the time to respond, what a lovely place. Off to the doc's today for the referral which has already been sent I believe.

I live in South Australia and am an expat from the U.K. Been here 19 years, have 2 dogs and my old cat.

Thank you

Nina

Mhairi54 profile image
Mhairi54 in reply to Ninja73

Hi and welcome. Hope it goes ok at doctors today. This is a great forum, you'll be glad that you found it. Mhairi

Minka1 profile image
Minka1

SORRY TO HERE ABOUT YOUR PROBLEM Keep i dary as to where this thing migrates to and on what days for your appointment This looks to me like mine where the immune system has totaly gone hay wired. mine started like i had pulled my ankle then moved to knee to join in then to hands when the hands flaired at the dips and pips i knew the dam thing was back , Next to go was gums receeding and ringing ears.

i have been told nothing wrong but i know from experience from 4 times being hit buy it that their was somthing wrong.

The last time a specialist gave me what is called a Kenaloug injection in the backside to drop my immune system and that seem to sort it out When the immune system came back up it stopped what it was doing to my joints Thank god.

The other thing if you can get checked for it is TB this can give no lung problems but be bone tb. REGARDS JOHN

Hi I'm from Qld and was diagnosed a year ago. Hang in there and hopefully the right meds will be sorted for you. Stay positive 😄

sophienut profile image
sophienut

Hi Ninja,

My symptoms started last Oct, and it took until this May to get diagnosed with RA because the 2 blood tests for RA were negative. Fortunately, my GP referred me to a RA Specialist anyway, and within 10 minutes she told me I had severe RA and started me on Methotraxtate and Folic Acid. I will be going back for my first follow up in a few weeks. So far, the symptoms have lessened, but not totally gone away. I don't want to start anymore drugs, so hopefully she and I can work something out that allows me to manage. Could I do your job right now? Probably not, but I am 68 and as I learn to cope and add supplements that help, like Tumeric and teas I think I can live fairly normally. I walk now, 6 days a week, 3 miles/one hour at the local park track and that has helped me a lot. You have to do some exercise/stretching, even if it hurts some. I take both Glucosomine/Colontrin and a collagen supplement for the bones and joints and natural anti-inflamatories like green tea, ginger and tumeric. I also found a tea for sleeping (Bigalow Sleep) that helps me get through those nights when you wake and the discomfort won't allow you to fall back. Through my own trial and error, I can verify those help ME. You will need to find out what works for you. The only topical cream I found helpful is fortunately the cheapest, generic cool/heat rub with 30% Methyl Salicylate, 10% Menthol and 4% Camphor. I can't take aspirin or acetomenophin (tylenol, etc) because of my stomach sensitivity (acid reflux as well) so I go natural. It took some patience, but over the long run, the natural remedies have really helped me along with the walking and stretching.

I wish you the very best, and don't you ever ever give up! Please start a journal right now if you haven't already. It will help you and the doctors.

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