struggling mentally

[Teddyboy17]

I am struggling to accept I have RA and try not to read things as it makes it more real for me but the. Feel drawn to read things I’m Not yet stable and been on meds since June but when reading posts it makes me anxious if I ever will be. Most people seem to have daily struggles and their life has Changed. This makes me feel I have nothing to look forward to and feel so sad. How do you accept this unpredictable new life . I am starting to confuse what is expected to be norm with ra drugs and what’s not anymore . How stiff are people in the morning for does this continue for hours ? Sorry not a happy post x

[Brian1977]

It took me over a year to adapt Teddy but you will get there I needed counselling which helped but you need to realise even with all the meds you might never be like you were before sorry if I'm sounding horrible but that's how I've finally accepted this hopefully you find the treatment that helps 💪💪💪🤞🤞🤞

[AW600]

Welcome to the unpredictable world of living with RA. If it’s any consolation, I think we can all say that no two days are the same. It can take a long time for symptoms to be under control and then for no reason at all, a flare up will catch you out. I’ve had RA for a year and my meds are still not quite right, today I’m struggling to walk. I struggle to find the line between pushing myself and doing too much. I don’t like giving in but sometimes I have to. It takes me an hour to get going in the mornings, trying to get down the stairs first thing is always a killer. Today I have sore feet, wrists, hands, knees and ankles, tomorrow it may all be ok. It really is difficult to not get down in the dumps, I fully sympathise with you

[HappykindaGal]

Life will probably be a bit different, but that doesn’t mean it’s necessarily worse. I still do get frustrated as book things because I think I’ll be fine, then realise I’m being ridiculous and it’s not going to happen and after a lot of teeth gnashing, accept it and do something different.

Acceptance didn’t come easy and I also had counselling as Brian1977 said also. That made a huge difference and I’d encourage people to try that.

Everyone is very different and you are you so won’t experience what other people do. There’s no fixed path for RA but you will find yours.

[Vixen2]

Hey Teddy. I know you don’t want to be part of this ‘club’. But it’s not all bad. I’m 52. I developed RA when i was 21. I. Like you had an awful time adjusting to my changed life. I was on alot of meds. I also had serious problems with my eyes. I had to have steroid injections in my eyes. Catarracts removed. I’ve had loads of procedures done to my eyes over the yrs. When i was first diagnosed i had to use walking sticks. Felt like an old woman. I’d left home. Had only been married about 6 months when i became so ill. I had to move back home. My lovely mum was actually a nurse. So she would finish work at our local hospital. Then come home & nurse me. An awful time. All these yrs later. I have an infusion every 6 weeks. I’m so grateful for the NHS.

I know this is a scary time for you. But as long as you’re patient with yourself. Slow down. Pace yourself. Take cat naps during the day. Be gentle with yourself. Take things slow. Don’t overdo things. Or your body will tell you to stop & you’ll be back to square 1again. They say swimming is the best exercise. As it’s gentle on the joints. Maybe look into your diet. I’ve read certain foods can exaserbate things.

Good luck with everything. It also helps to know that you can come on this forum. Day or night. Just let out all your frustrations & emotions on here. We all understand what you’re going through. X

[Clare26]

Hi Teddy . It’s very hard at first to accept what’s happening to your body. I had not long given birth to my second child when I started having symptoms and I found it so hard with a toddler too, especially as no one around me understood. It felt like even the GP’s didn’t understand hence it took a long time for me to get diagnosed properly. I was in denial and desperately wanted it to just go away like a miracle. I resisted medication at first as it scared me so much but I took the methotrexate & hydroxy & slowly began to feel relief. For about 6.5 years it worked well, with small flares here & there that didn’t last long . Anyhoo…. 8 years later yes I get flares & I had a terrible stretch of flares last year (after 7 years diagnosed) but they changed my medication , taking away one drug & replacing with a biologic & bridging the gap with steroids. It’s worked & I'm in a much better place. If the drugs they offer don’t work keep onto your rheumy nurses as they can try others. It’s daunting & I really have been worried, disappointed & all the negative thoughts when I got a big flare but we are truly lucky for the nhs & you will find a drug that works. I will say my rheumatologist said diet didn’t really have an effect but personally for me I have found some things aggravate it so I’ve cut them out with positive results. Dairy is the big one for me. I also take a good probiotic. I’m mostly plant based but I do eat organic eggs & fish once or twice a week. I don’t like labels with food - I eat what’s right for me. I do yoga - years ago I trained as a yoga instructor. I don’t instruct anymore but I am able to do it. But I do believe it’s also helping me stay strong & supporting my joints. It doesn’t have to be power yoga either - just gentle stretching & movement is better than not for me. Don’t lose heart - our medical system is a godsend & it’s not complicated it just takes a little time & patience. Everyone’s story is different. One day you will be able to tell your positive one I’m sure. Be strong.

[Mistydawn]

Good morning Teddyboy. Being diagnosed with RA was indeed a very traumatising time for me too. It took me some 18 - 24 months to come to terms with the disease after which I still go through days when I get totally depressed. For me it was like one of the most stressful things in life. I too had counselling!

During the nine years with the disease, I have changed my diet and lifestyle dramatically which has helped but I still live with this chronic disease.

Another thing to bear in mind is that people who have got this disease under control do not post on blogs like this often so what you read hear are the stories of people still struggling!

There is hope in managing it. Change your lifestyle to one that is less stressful and eliminate foods that are inflammatory such as refined sugars, gluten, red meat, dairy and convenience foods.

Things such as the weather are out of our control so we just have to ‘ride the storm’ during the cold and damp days of winter.

You will find a way to accept your fate.

[Hopeful1]

Hi Teddyboy. Hey, great though this site is you are getting just one side of the story. Many many like me have come through those tough first few months, found the drugs which work for them and get on with life pain and stiffness free with minimal adjustments. They do not need this site so you don't hear from them here. Others pop in if they hit a snag. I am here because I am part of a group for a different condition and get feeds from both in one daily email. Most here are either newly diagnosed or having a fresh problem and it is a very supportive community but not the whole picture.

RA is tough to deal with at the start and can take time to find the right treatment for each of us. Have you looked at the NRAS website, so much helpful stuff and channels of support there. Good luck.

[Joannos]

Ah honey I am sorry, this struggle you are going through is quite normal. It takes time to adjust to a different reality. Your RA journey will be unique to you, we will offer advice, to support, to cajole if necessary, but the path is yours to tred.

You will try different drugs, you will try exercise, diet, sleep regimes. Some will make a difference some won't.

The depression /anxiety you are feeling is real, talk it through with Dr and friends or find a group.

But take heart, I work full time, I am 62 years of age. I have had RA since my 40s and I walk my dog every day.

RA is a b*tch and living with it can be a struggle, some days are harder than others, but you begin to understand those days and prepare for them.

It's your life, go out and live it, you will have good days, sometimes stiffly, sometimes with pain, sometimes your tired. Tomorrow will take care of itself.

[Sheila_G]

Hi. It is very understandable that you feel scared. It is early days for you. I promise you that you will feel better with time. This disease or any disease for that matter has many facets to it, physically, mentally and emotionally. Your life hasn't ended, it has just changed and you will learn to live with those changes. I would say that reading posts or not reading them won't make the slightest difference to how the disease affects you. You can filter the pessimistic stuff. I think that you will read some very good advice and positive stories on here. I have had RA for 21 years and although I have had to adapt in certain ways, my life is brilliant. There is light at the end of the tunnel but if you bury your head in the sand you won't see it. Give yourself time and you will begin to accept it. I wish you all the very best.

[Katie-Mag]

Hi Teddy,

As Hopeful1 mentioned above, lots of us find a treatment that works for us. It has taken time for me but I’m now symptom free and in remission.

My ‘normal’ life isn’t really impacted by RA (professional job, keen runner & cyclist etc) & I don’t really have morning stiffness.

Re predictability - find I get more tired than I used to but you can manage this (which I’m actually really bad at!)

Finding the right treatment for you might take time but please keep optimistic. Good luck!

[Jackie1947]

Help us out there. You can be referred for counselling and you can even do it yourself. My Dr gave me the link. Okay there was a waiting time but what I received helped me come to terms of losing my old life. It was like grief it was grief. Do some research is my advice. I wish you all the best

[Fra22-57]

not everybody is the same and people can be on different meds.I was furious at the beginning but that made me more determined to not let it beat me.I have quite a few other autoimmune diseases plus others so yes days I do struggle more than others.I just have the mind set that to do what I can and when I can.I am on 18 meds a day plus inject biologic drug once a week.Yes I can no longer work but I can still live a good life.And yes I am still in pain but not as much as before I got “stable”. I hope you have a good rheumatologist who can help you

[GinnyE]

Imagination is a very powerful thing and once you start googling about illness you can have yourself "written off" before you reach the end of the first paragraph. Try and keep off it is my advice.

As my old Mum used to say "You die if you worry, you die if you don't worry, so why worry"?

It takes time to get stable on meds but then you can be fine. I'm in remission they tell me and have been for about four years now.

[Boxerlady]

You've already had some great responses which I hope will help to to see that there is life after RA. I do think that it's important to remind yourself that this great place is a natural refuge for those who are struggling in one way or another and that the many who aren't probably don't log on often or don't post. I'm in the latter group, I suppose and find that I pick up lots of useful hints and tips and try to offer support but that I'm generally very lucky in that I'm doing better than many of the posters.

I still have some morning stiffness in my hands but it goes once I've got them (gently) moving and the only lasting pain I have is in one wrist; my consultant suspects that I have some damage there so is giving me a joint steroid injection this Thursday to see if that helps.

I do have some fatigue and have to be careful how much I take on but don't always get it right! I'm learning to accept that sometimes I just have a day when I feel fluey or washed out and that it's best to try to rest and let it pass but I do find it frustrating. At 63 ( diagnosed at 59), I'm lucky in that I can choose how much work to take on; I've always been self-employed in a job which I love so have the flexibility to say no and even though I'd like to do more, I just count my blessings that I can prioritise my health. My main irritation is that my friends of a similar age can do more than me - work/socializing/everything! - but I just try to stay positive as I do think that helps. One positive to come out of this is that I started exercising for the first time in my life! I started with Tai Chi for Arthritis and now go to Aquafit classes which I was amazed to find that I love!

Please consider counselling or just talking to someone and do keep posting on here ; I have had counselling in the past for other issues and found it very helpful. It's natural to feel low when you're still trying to find "your" medication - I know that I did - but hopefully things will get better for you.

[Scottishlad]

It is important to remember that many if not most people cope well with RA once the correct medication for them is found.

On forums like this and other internet sources you will mostly be reading about the bad stories. Very few people bother to post the good stories.

I do remember my own anxiety before diagnosis was confirmed and medication prescribed. That was nearly 20 years ago.

I have been a journey of meds over the years but essentially my RA has been well controlled and I am considered to be in remission. I do get small flares from time to time to remind me it is still there. 20 years on and I'm still active for my age (67), I cycle, swim, go to the gym and look after my garden.

Try not to worry too much, there is a very good chance the correct medication will be found for you. It may be a process of trial and error and take a while as the drugs don't take effect overnight.

I hope that you start to get relief before too long and you start to see light at the end of the tunnel.

[CagneysMum]

Hi Teddyboy 👋

I was diagnosed just over 4 years ago. I reached a dark place when all of my joints including my jaw became inflamed. Movement of any description was so painful (walking, washing, going to the loo) and I had to borrow a wheelchair at my worst. It probably took 18 months to get the right mix of RA medication through trial and error, but then life got so much better.

My ankles and knees are not as strong as they once were (I suspect some minor permanent damage to the joints?) so I need a short breather after walking a kilometre or so before continuing. I get short of breath more easily and have very occasional days where I just feel wiped out/tired and so take it easy on these days. But I have little or no morning stiffness in my joints … in fact my joints have not been inflamed or sore at all since finding the right combination of RA drugs. My life is reasonably normal now with a few modifications. Stick with it, you’ll get there. 👍

[EmmaS-NRAS NRAS]

Dear Teddyboy17.

I'm sorry to hear about your recent diagnosis of RA but glad that you have found this forum. As many others have said before, there is a lot of information out there and it can be overwhelming to know where to start. I also understand that it can be scary reading other people's stories and wondering if yours will be the same. RA is a very fluctuating condition and everyone's story is different, whether it's how severe their RA is or how they react to the medications. There are lots of options out there and new RA medications being approved all the time (especially in the last 5-10 years) so there is much to be positive about.

Perhaps I can suggest a call with our Helpline team (0800 298 7650 or email [e-mail]) as they may be able to guide you through these early months of your RA journey. Also, our Newly Diagnosed booklet nras.org.uk/product/new2ra/ might be the best place to start learning more about RA.

Sending you our best wishes and keep in touch.

EmmaS-NRAS

[cyberbarn]

As you can see from the responses, everyone has their own way of dealing with things. My way is to look at those in my family with RA and a dear friend that died recently at age 85 (of cancer). She was diagnosed with RA in her early 20s, way back when there were no treatments. But she didn't let it stop her. She had various tools in her toolbox. But two stories really stuck with me.

One was when she was in her 20s teaching english in Ceylon as it was known then. She was invited to a dance one evening, but was having a flare, so under her dress she rapped herself in red flannel that had been soaked in something that must have been like Tiger Balm. She said her date never asked her out again, but she had a wonderful evening dancing, and hoped that the red flannel didn't show above the dress to make people think she was sunburned!

A second one was when she was much older and in the UK (she travelled extensively when she was younger) and was the head of a primary school. She was in the middle of a flare while organising an event at the school, and did it all while laying on the sitting room floor on her back. She had the telephone with her and an assistant to do the running around. She did it all, and managed to get upright to attend a successful event.

She lived to her mid 80s with no RA specific medication. None. She just used what was available in her youth.

And my grandfather was the same. No medication available for him, but he carried on cutting the grass in his beautiful garden. He has done his gardening apprenticeship at a stately home in Yorkshire after WW1 and applied the same principles to his little bungalow garden in his retirement years. Mind you, his little electric mower annoyed the neighbours as it used to take him several hours to mow the lawn at his slow shuffle.

I just keep reminding myself that it wasn't that long ago that people lived with out medication for RA, and lived long and fulfilling lives, coping with their pain and disability as well as they could. And that is the best I can hope for myself.