Newbie!: Hi, I'm Cydney, I've only been diagnosed with... - NRAS

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Newbie!

Cydney96 profile image
25 Replies

Hi, I'm Cydney, I've only been diagnosed with rheumatoid arthritis in all of my joints for about 6 weeks. Still learning my limits and what is best for my body! Very new to this, and would like support along the way of my new journey! X

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Cydney96
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25 Replies
medway-lady profile image
medway-lady

Welcome and hi, Its the start of a journey which may confound you, frustrate you and upset you, make you tired with all the blood test, X-rays, bone scans and get used to a lingo that doctors use like" this may hurt= it is agony; or "it might take a while" = I have no idea how long the queue is, or "lets try this and see how it goes"= it might work or again, it might not.

But seriously stay hopeful for the vast majority of us, life is normal and their are some excellent treatment now. I'm in remission and if it was not for the medication no one would know I have RA. I do not read the patient information leaflets anymore as they are scary but to be honest if the side effects are 1 in 10 it means that most of us, are the 9 who do not have side effects.

So stay optimistic and it may help to keep a diary of the aches and fatigue if you get it, as it may help you if asked about any improvement in your symptoms at a later date. I did this and it was useful.

in reply to medway-lady

That is wonderful medway-lady! Perfect reiteration of what we all go through.

I especially like: "this may hurt= it is agony; or "it might take a while" = I have no idea how long the queue is, or "lets try this and see how it goes"= it might work or again, it might not."

sylvi profile image
sylvi

Welcome and sorry you have RA,it never comes to the party on its own,after time it brings its friends with it too,well in my case it has. Yes a lot of people live good lives and work with RA,but a lot don't. Be prepared for the highs and lows with this disease as there will be many. There is always someone on here anytime of the day who will be able to answer any questions you may have and believe you me there will be many. Vent all you like as well and share the good as well as the bad in your life darling and we wil always support you and we have even been known to have a laugh as well. Welcome and i hope you soon get your disease under control.xxxxx

You've come to the right place Cydney96!! We are here to listen and help you during this confusing time.

Leonwp profile image
Leonwp

Hi Cydney, so sorry your here, im only 5 years ahead of you after very sudden very violent onset. Never any symptoms before snd in fact was ultra fit until very heavy chest infection.

Hope you are getting the help and advice you need, i am no doctor but i have spent alot of time reading and understanding what i can about this evil disease.

I will honestly answer any questions you have at anytime about anything RA related based on my own experience.

Very best of luck

Leon.

Tillie20 profile image
Tillie20

Hi cydney welcome to the group so sorry that you have had to join but it will help you understand what you are going through, I was diagnosed 1year ago and started medication in Feb I am one of the lucky ones I dont have pain (well I don't class is as pain only aching) as what I get is nothing like it used to be where I was reduced to tears could not dress so what I get I do not say pain, problems when standing and starting to walk, but I know the pain will return one day make I just make the most of what I can do, good luck X

in reply to Tillie20

I think too Tillie that we get so used to the pain that we start to reclassify it to aching, when originally, or to others not part of this disease, it is probably still pretty much just pain. But yeah - one day at a time, huh?

gwynedd profile image
gwynedd

Welcome Cydney,

You'll find this is a really friendly place where people are really supportive and offer their experiences willingly. I've found it to be invaluable for me. Xx

Gigi71 profile image
Gigi71

Welcome Cydney, just to echo everyone's comments on here. We are all different, but you will be able to find someone's experience will mirror yours. People on this forum are very supportive of each other. Take good care of yourself.

Bookworm55 profile image
Bookworm55

Welcome to this brilliant site which I only found in August. I was diagnosed in February after very sudden onset of RA at Christmas last year. Been on methotrexate and hydroxchloroquine since then, along with decreasing amounts of steroids, and feeling good atm. There is such a range of people and experiences on this forum that so far I have always found plenty of friendly, wise advice and support whatever my question or problem. I'm sure you will too.

JacquiThomas999 profile image
JacquiThomas999

Welcome to our little band. I am sorry that you are here. This is a great place to ask questions and to rant.

nomoreheels profile image
nomoreheels

Hiya Cydney & welcome! Well, you'll receive lots of support, we're a very supportive lot. We'll share our journey, respond to anything you throw at us with our experiences or just be here if you feel in need of a rant. The only thing we can't do is give medical advice, your Rheumy team & GP are the ones to do that as we're all different & respond to our meds differently so hopefully you'll find them responsive.

I hope you enjoy being here & trust whichever treatment you've started on you're on the way to them working for you. Take care & hope to see you around now you've introduced yourself. Meantime you may find having a look through the NRAS website helpful, maybe it will help those closest to you as well, it's a steep learning curve not only for you but for them too, learning about the disease & knowing how best to help nras.org.uk :)

AgedCrone profile image
AgedCrone

Get on with your life & hope your RA lets you have a good one.....everyone onthiscsitechas a different story to tell.

I think we are all guilty of being fearful & letting the THOUGHT of RA overcome reality.

There will be bad days , but also lots of good ones. Don't think yourself into what might happen....it probably won't!

Welcome!

farm123 profile image
farm123

Although we are all under the 'rheumatoid arthritis or rheumatoid disease' umbrella there are so many variations in this disease and nobody is the same. There are a variety of medications that help but it can take time to find the right one for you and it can be difficult at times to decide whether the side effects are worth putting up with (some will ease with time and not everybody gets them) versus the relief from the disease and most meds take up to 12 weeks to become effective. Some people find that certain food groups has an effect on them but for me personally I have not been able to identify any. Good online resources are the NRAS website or the arthritis research website. If you have a partner try and take them to appointments with you because this disease is hard for us to understand yet alone explain to anybody else and often they can see how much the disease is affecting you more than ourselves because we adapt to be able to do things and forget the 'normal' way. It is a sharp learning curve and you have to learn to read your body and pace yourself. Sometimes it can be a case of wanting to do something but another thing has to give. Many will find a medication that will control the disease and can carry on as normal and nobody would know they have it. Farm

popsmith1874 profile image
popsmith1874

Hi cydeney and welcome to the club we are all a friendly bunch who get on like a house on fire and have one thing in common this horrible disease, but don't let it eat you and keep fighting

AllyWelshDragon profile image
AllyWelshDragon

Hi Cydney

Welcome from me too! I'm fairly new on this site but was diagnosed with RA five years ago. It's under good control with salazopyrin and methotrexate. I read nightmare stories about side effects but so far, so good!

I hope you find the best regime for you quickly. My best advice to you is listen to your body. It's so easy to go hell for leather when you feel good and then be exhausted the next day. If you get fatigue, rest as quickly as you can. Not easy if you're in work, as has happened to me! I've also had to educate my husband and teenage son that when I need to rest, it's for a good reason, not because I'm being lazy.

I count myself lucky as I live a full active family life despite the RA. I work fulltime, go to the gym, look after my widowed mum and volunteer at my local church too. They all know my limits and work around my abilities!

This is all thanks to a fantastic rheumatologist and his team plus a supportive GP. I wish you all the best in your RA journey too, don't hesitate to ask us on here for help and advice when you need it.

Best wishes

Ally x

PennyW1 profile image
PennyW1

Hi cydney. I too am new to this, but i am so pleased to have found this site. There are lots of lovely people here who help and support one another, and have first hand knowledge of what you are experiencing. Im pleased for you that you have found this wonderful group of people. Welcome.

Penny

Jacki08 profile image
Jacki08

Hi Cydney- welcome to this invaluable site. I was diagnosed 2 years ago, was scared stiff, confused and had lots of pain and very limited movement. The people on here were brilliant with their advice and support. Once on the right medication I am loads better. Never worry about asking questions on here--- someone will have an idea how to answer. Good luck😊

Amy_Lee profile image
Amy_Lee

Hi Cydney96,

I was diagnosed RA 2 years ago and I am in remission now and I am having a very normal life at the moment.

I do not want to repeat what others have said here. However, my advice is to work very closely with your rheumatologist, do not skip your medication though they MAY have side effects and do a lot of exercise that suit your condition at this moment. Most importantly, to get early treatment to avoid your joints being damaged.

I find these two videos are very useful to me because they provided me with the answers that I had in mind. I hope you too find them useful.

healthunlocked.com/ra-warri...

Hi Cydney - Welcome to the board. You will find it pretty active and very friendly, so join in as you wish!

Kathy1465 profile image
Kathy1465

I was diagnosed five years ago. The early days were hard because we had to figure out the right medications for me to take. There was a time when i needed help getting dressed and washing my hair. I could not sleep because of pain. My turning point came once we added a biologic. No more fatigue and very little pain. I work full time and have two kids. I will never run a marathon, but I feel there are few things I am unable to do within reason. Btw I know five other people with this illness. Two of whom are living good lives and in their seventies (one still works full time!). The third still works as a golf pro at a local country club. The fourth is a neighbor. I saw her outside mowing the lawn yesterday. The fifth has kids, still rides her bike and runs a blog on ra. Keep your chin up and think positive. Everyday is a day to be grateful for.

Kathy

Lorin profile image
Lorin

I am sorry you have RA. Live big when you feel good and take care of yourself when you don't. Do t get too caught up in treatment horror stories as each person responds differently. Homeopathic remedies like yoga do help. Best of luck.

hope-always316 profile image
hope-always316 in reply to Lorin

"Live big when you feel good" - best advice ever, love it :)

Em13 profile image
Em13

Hello and welcome, Cydney. I'm new here too, but lots of good advice already. If it is support you are looking for, you'll find it here!

Cydney96 profile image
Cydney96

Thank you all so so much for your support. This has been the toughest news I have ever had to deal with, but I am coping. I am grateful for every good day that I have. Have any of you who have had the depo-me drone injection suffered from back pain and cramps??

I hope you're all having a fab week.

All my love and support,

Cydney x

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