Introducing myself: I have been reading your posts and... - NRAS

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Introducing myself

cathyh profile image
15 Replies

I have been reading your posts and questions for awhile now. I have them really helpful and informative.

I have had joint problems and minor flares for about 3 years now. I saw a rheumy a couple of years ago when nothing was conclusive. I have taken Naproxen when needed ever since although I haven't been too bad never needing a day off work. However I have had a horrible year I had a Morton's neurons removed from my foot in January, I had the flu which developed into pleurisy and couldn't shift it with antibiotics for weeks. Finally got rid with the help of steroids. Then came a nose infection that was also hard to clear with antibiotics again steroids helped in the end. And then end of August I started with this flare up that hasn't gone away. My hands have often felt generally stiff like I have rubber gloves on filled with water but it is the tiredness I can't cope with barely managing to function some days.

I have had the blood tests done only thing to show was raised esr which was 17.

Then about a month ago pains in my hands not just general aches but sharp stabbing pains in my knuckles both hands not unbearable though. When they do start you can tell by just looking they swell go hot and my veins stick out. Does this sound familiar?

I have an appointment with the rheumatolagist 18th December hoping for a diagnosis. Until then I am trying to be detective myself hope you don't mind the odd question. Lovely to meet you all Cath xx

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cathyh
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15 Replies

Welcome and sorry to hear that you have had a rough year. Hopefully when you see the consultant it will not be too long before you get your full diagnosis. Yes the look of the veins are a familiar story to me as I always say when their up something is amiss somewhere in the body. Take care. x

cathyh profile image
cathyh

Ah thank you for your reply. Bit more info on me I am 46 mum to 2 kids girl 22 boy 17.

Not trying to guess my diagnosis but I do have a couple of patches of psoriasis and my nails aren't great.

Roll on December x

in reply to cathyh

Hello BOB here

You say you suffer from Psoriasis, you can try a little bit of research at

PAPAA

email info@papaa.org

They are one of the leading charities that deal with your complaint, also with Psoriatic Arthritis. So you should be well catered for

All the best

BOB

in reply to cathyh

Hello cathyh

Try the PAPAA address, you will find some really interesting stuff regarding your condition, skin,nails, joints etc.

You will really understand your condition

BOB

cathyh profile image
cathyh in reply to

Looked up the website BOB thank you very informative and I can relate to it. My psoriasis is very mild but I suppose there is a chance my inflammatory arthritis is down to Psa rather than RA. Thanks for the info x

allanah profile image
allanah

Hi Cath, nice to see you here, and yes your story sounds very similar to mine! If your appointment is in December I would now start gathering your evidence together too sure the doctor.!

If you have any photographs of your swollen hands of a joints know would be the time to take a picture because often when you get to the doctor the swelling has gone down on that day ha ha

Also I would keep what is called a pain diary, you write down when you are somewhere where it hurts for how long and if there's any swelling, and it helps the doctors to see a pattern to your illness.

I would also start a list of questions that you have, because when you get to the hospital you get a very quick appointment with the doctor and then in general passed on for tests blood tests maybe even xrays etc, so if you have your questions ready it saves you're forgetting what you want to ask on the day.

I know it seems a long way until December at the moment, And I would take whatever pain relief your GP suggests. They often suggest non-steroidal anti-inflammatory drugs to relieve some of the pain until you see the consultant.

Also you might need a little patience as sometimes you don't get the answer of what is wrong until the tests are completed. But I got my diagnosis that morning and started on my medication the week after, so hopefully for you this will happen as well.

I hope you have also had chance to look at the NRAS website which is full of advice for people thinking about a possible diagnosis.

I hope you keep joining in here and you get your answers very quickly, hugs Axx

miss profile image
miss

Welcome to this site hope all goes well for you at your rheumy app xx

sylvi profile image
sylvi

Welcome Cath, i hope you have found by the posts you have been reading that they have been very helpful. You are not alone in having a bad year. Welcome and ihope you soon get some answers. Sylvia.xxxx

Philip profile image
Philip

Welcome to the mad house, there's lots and lots of lovely people here, enjoy.

Philip

petalnumber2 profile image
petalnumber2

Hello Cath, a very big welcome from me too. Allanah has done a very good job and covered just about everything. I recognise most of what you have described, but I've also learned something else from your blog tonight, which is about your veins sticking out on your hands. Mine are very prominent at the moment and I'm in the middle of a flare up, so it is obviously a characteristic of RA.

We never stop learning from one another and it is very comforting to be chatting with people who know and understand what you are experiencing and how you feel.

The only things I would add is to take one day at a time and rest as much as you can. Also if you can, take someone with you on your first appointment because two pairs of ears are better than one pair. I didn't do this and there were a few things I couldn't remember afterwards, it's always good to have some support.

Good luck and take care, June x

cathyh profile image
cathyh

Thank you so much for your replies and advice. It is really helpful. Its so nice to be able to talk to people who really understand. My family and work friends have expected me to feel better by now. They can't possibly understand. At first I would go into work and say I still feel tired or getting up from my desk stiff. I had almost 2 weeks off to try and shift the flare but went back feeling no better. People saying are you better now and me thinking no not at all but I did appreciate the rest..

It shouldn't be but that is the main reason for really wanting a name for it..it won't change how I feel but it might help others to understand and realise no amount of positive thinking will make me miraculously better..if only.

Anyway I just wanted to say thank you. Pain diary starts today xx

Trulyfedup profile image
Trulyfedup

Hi, I have only been on this site about a month now but have found them all lovely...the support and information has been a God send. It really helps to know you have somewhere to go for a good old moan with people who understand.

I do have to warn you though, most of them are wonderfully bonkers!!!! Mary x

lorann profile image
lorann

Hi cathy, I do admire your outlook, the power of positive thinking is very strong!

I have had Psoriasis all my life, since the age of 2. Now it is Psoriatic Arthritis, not diagnosed until in my 40's, so therefore didnot get the treatments that are available now.

Now I am on the usual barrage of drugs, including the biologic drug, Simponi, which has allowed me to be as active as I want. I do fight fatigue, especially during a flare, so we all have to keep our bodies rested every chance.

I wish you all the best and hope you get an early answer and get onto early treatments. Lorannxxx

chogie8 profile image
chogie8

Hi , I hope every thing goes well on your appointment in Dec.....having read all the advice you have been given I will be taking notes to help me when I go for the first time. kammie

cathyh profile image
cathyh in reply to chogie8

Thanks for replying the advice has been great. You mention you have your first appointment coming up. Have you been diagnosed by your GP with your blood tests? Cath x

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