Does anyone with rheumatoid arthritis manage to lead a fairly normal life? V recent diagnosis,feeling down:-(

[dottytablecloth]

I'm devastated with what looks like a diagnosis of palindromic rheumatoid arthritis. I'm about to have steroid injection to see if it controls the pain and after that it'll be long term medication.

I'm very down about having this condition and the side effects of the drugs that I'll have to take.

I'm fed up being in pain.

I've 2 v young children baby is 7 weeks. I'm so upset that I might pass this condition on to them as doctors say it's genetic.

I'm 35 and I feel like an oap.

I'm v v down about things at the minute.

I'm worried about working full time and how I'll manage it.

I'm a bit of a mess at the minute. I jeep reading about pellet ending up in wheelchairs or using sticks.

I know it's not the done thing on MN but big fat, unmumnetty HUGS being sent your way. Firstly, while I think facebook and forums can be a great source of support and information, you do get a skewed perspective. Most people with well controlled RA are not using those forums because they have no need. Therefore, if you spent time on those places, you can easily get the impression that everyone living with RA is in a bad place.

These are the stats from Arthritis Research UK:

75 per cent continued having some joint pain, swelling and flare-ups
20 per cent always have very mild rheumatoid arthritis
5 per cent develop severe disease with extensive disability

www.arthritisresearchuk.org/arthritis-information/data-and-statistics/rheumatoid-arthritis.aspx#sthash.GXIkoy6j.dpuf

I am, sadly, in the smaller percentage. I won't lie and say it's easy but it does get easier to accept. I still live my life and while I can't do everything I want, I can adapt most activities to fit my needs.

If you're going to be diagnosed with RA, now is a pretty damn good time. The drugs are better than ever and continuous research is going on. Even in the last few years, access to treatment has improved greatly. So, even if you were diagnosed 5 years ago, you would be in a different position to those diagnosed today.

If you want to chat, just give me a shout. :)

I am your age and was diagnosed with psoriatic arthritis ten years ago. People are often surprised when I tell them.

You've done the hard bit. Now you've got a diagnosis you'll get access to some pretty fab drugs (if and when you need them) that work for most people. Once you get your head around it and take time to get to know how this disease works, you'll be fine.

You'll have bad days. But they turn into good days eventually. Big hug.

Ps I remember having that first steroid injection. Raced my way past all those OAPs that raced past me on the way in. Hope it worked

Ed I'm sorry to hear about your situation. You sound very positive in spite of it all. I agree maybe reading too much on the internet isn't the best idea but I'm still at the stage of getting my head around it.

I'm really down about the idea of having an incurable condition.

der I know from talking to the doctors that the drugs are good but I don't like all the side effects listed.

Feeling sorry for myself as I just want to enjoy my beautiful baby and not be riddled with pain.

It's ok to feel sorry for yourself, you're not well. I understand the need to read and to want information. Being informed is important as is receiving support from your peers. I would highly recommend; www.arthritisresearchuk.org/ and www.nras.org.uk/ and www.arthritiscare.org.uk/Home
The latter two organisations have fantastic helplines for support. I'd really urge you to contact NRAS as they are so knowledgeable, honest and realistic. I still phone them regularly for support and a friendly ear.

Take it easy.

Me!

I was diagnosed with RA about 2.5 years ago at the same age as you. Like you, I struggled with the fact that I now had a lifelong condition and would be on medication for the rest of my life and scared the bejesus out of myself reading all the forums. I just wanted someone of my age to tell me that they had it and they were doing well, so hopefully I can be that person for you.

I'm now on methotrexate and hydroxychloroquine - I've had a few side effects but nothing major - and I am completely back to normal. I work full time and I've also become much more aware of my need to look after my body so I've been going to the gym and I'm actually considerably fitter (and thinner) than I have ever been.

I know I've been lucky in responding to the first medication I tried, and I also know that that things might change in the future, but if it does happen I'll cross that bridge when I come to it.

You will probably never feel as bad as you do now once they find the drugs that work for you, and there's plenty to try. There is hope, please don't lose heart, and be kind to yourself over the next weeks and months - it's a shock to be told you're no longer "fine", and you should allow yourself to grieve for that, but it will get better, I promise.

bigfeet thank you so much you don't know how much your reply means to me. You've given me a feeling of hope. I honestly have been feeling such a black cloud and your reply has lifted my spirits.

My sister at 25 was diagnosed with the same condition. She did feel very depressed at first but you just get on with it. She lives a normal life and yes she does work full time, of course she does.

I think it is with older age where she may really struggle and end up with a stick but you just get on with it.

You're welcome - I'm no expert and can only speak from my own experience, but am here if you need reassurance or a place to vent.

It's hard. But it's also worth remembering you've recently had a baby and post partum flares are generally worse than your symptoms will be going forward. I too responded well to the meds and even managed to do a 26 mile charity walk 3 years on. Day to day I was really well.

I then decided to come off them for 9 months before conceiving and another 10 months of pregnancy then breast feeding so I'm now back in your situation hoping the meds will kick in soon.
Having been here before I've every reason to think they will.

My mum and gran both have it...looks like I'm next! But just wanted to let you know that at 85, my gran has suffered with RA for years and is more able that most people her age. She takes the dog for long walks, drives, literally almost everything that I can do in my twenties!

My mum has suffered more than my gran and was diagnosed earlier (age 30) but twenty years on still works full time, travels all over everywhere, and does everything she ever did. I grew up with her having bad flare ups, but she always carried on, she had to!

Neither of them have ever let RA hold them back and I think that's the mind set you need to have. You will have flare ups and bad days, but keep going for the good days, don't think because you have a chronic disease you must stop the things you have always done. Adapt yes, but don't stop. An elderly patient at work once said to me never stop doing anything because once you do you won't start again!

You're bound to be feeling low but you will come to terms with this.

My husband is 34 and had a PRA diagnoses 7 or so years ago. He is on methotrexate and lives an entirely normal life and is pain free the majority of the time and on no pain relief. He has no side effects other than occasional headaches from the MX and can still have the occasional drink without it causing issues with his bloods.

:) the diagnoses was scary but it's hasn't really affected our life at all. I genuinely think dh doesn't give it a thought from one day to the next and long may that last.

I am sorry to hear of your diagnosis. I was diagnosed age 17.
It does completely change your life and you will need people around you to support you. Don't be hard on yourself and only look out for yourself and family because they need your time and enthusiasm on your good days. I have lost friends over the years because it does get me down and people will try to change you but those who truley love you and respect you will be there.

Sorry to hear about your diagnosis. I've had RA for 16yrs, diagnosed at 19. It was awful to start off with and I found it very difficult to cope. However after a while they managed to find a mix of drugs that worked. Over the years they have had to be adjusted and I've chosen to have (painful) breaks to have kids, but they have enabled along with some adjustments on my part to live my life. I've completed 3 degrees, met & married DH and had a wonderful DS, as well as a successful career all with RA. Don't get me wrong it's not been easy but it has been do-able. I don't think I would have believed it at diagnosis but now I know that it's not as bad as it seemed. I found talking to people in my situation on the arthritis care website discussion pages really helped me onthe harder days.

My cousin was recently diagnosed with RA. Her hands swelled up so she couldn't use a keyboard which is vital to her job.

She does the exclusion diet which was a tentative suggestion from her GP.

If she sticks to the diet she is symptom free.

Hello I've had RA for 6 years and am a volunteer for NRAS - National Rheumatoid Arthritis Society.

There is information evening on 25th March in Harrow, which is free to attend.

Venue:
Himsworth Hall, Education Centre,
Northwick Park Hospital,
Watford Road, Harrow HA1 3UJ

Wednesday 25th March 2015
6:30pm – 8:00pm

Question time with an expert panel including healthcare professionals from the rheumatology team at Northwick Park Hospital and NRAS

Gujurati speakers on panel.

Please register your interest in attending by 20th March 2015
by calling 01628 823 524 or by email to [email protected]
All welcome - You do not need to be a member of NRAS to attend.

This will be a great opportunity to ask health care professionals questions about treatment and pain management. I hope you'll attend and get a lot out of it. After this event, we will hold smaller support groups which will be hosted in the Trinity Church on Hindes Road, Harrow. For more info please go the NRAS website. Thanks and hopefully see you there!

I do (we are going to ignore the few years I spent off my drugs in order to have babies)! I was diagnosed at 22 and was very severely ill with it (couldn't walk, lift a cup of tea, turn a door handle etc). Correct drugs were found and I was completely transformed, nobody would be able to tell. At work they only knew because we do pilates at lunchtime and I have a little bit of damage in my wrists and do press ups using little bar things. I run, play badminton and have been on a sea kayaking week long trip without giving it a second thought.

The side effects do sound scary but you are so well monitored and they will whip you off them at the first sign of trouble. I was absolutely gagging to get back on my drugs post last baby as I could really see the difference they had made to me. I also found it is a really well heard of condition, so in my ttc years people were exceptionally kind and understanding when I took time off or couldn't do something.

I also feel that having the condition has given me some benefits, I feel like I am not in "the race" anymore (in a good way) so don't compare myself and my life to others. I used to run myself into the ground. I also really make good quality of life decisions, I look after my health and have empathy that I didn't have before for people having a hard time. As a result I have some really good friendships and people I can ask for help in return.

What about long term side effects it may cause like lung fibrosis we just take and see?and then the damage is done.

I have had Rheumatoid Arthritis since I was 30. I am 73 now. Because I was diagnosed in the early 80’s when treatment was still very hit and miss the disease was out of control. Because of that I have fused wrists, replaced elbows and knees, and have also had my feet rebuilt and I have plates in both feet. I am mostly in a wheelchair. My Rheumatoid Arthritis is now controlled by Biologic drugs. The difference is amazing. I have been lucky enough to have the opportunity to try several different ones. Some didn’t work, another did for 12 years - then stopped, I am now on RINVOQ, which has worked well too. However, my hands are twisted, I find it difficult to walk. How I wish that I could be newly diagnosed in today’s world. My joints would have been preserved and I would not have spent the last 20 years in and out of a wheelchair. Take the wonderful opportunities with the amazing drugs available today. You will be monitored and the medication stopped if your blood results or other symptoms show problems.