Hi, how do folk on here look after their mental health whilst coping with RD?
It’s had a major impact on my life and at times I find it hard to cope emotionally. It can be a battle between fighting it and just not having the strength and giving in.
How do you all cope in this regard?
Hi, Sjhoney, I get very weepy at times because of the pains and I suppose it leads to a depression But in many instances, what I feel is that one has to accept your illness because it isn't going. anywhere without you.
Personally I have many ills including Dementia and I can only carry on by accepting them. Still hurts though lol.
Yes I understand what you’re saying and I that’s how I cope most of the time, count your blessings and all that. But there are times when that just doesn’t work and you’ve just had enough. Being kind to yourself is important I think.
Hi 🙋🏼♀️ this disease does have a major impact on your life EVERYDAY. Me personally I take each day as it comes, be it good or bad, If it’s a bad day rest, if it’s a good day do what makes you feel better without overdoing it! you actually learn to listen to your body and live with it, don’t waste your energy on fighting it cos it will always win!
If you’re feeling very emotional and down, ask your Rhumatology nurse for a referral to speak to a psychologist, they really help! I think it’s perfectly normal to feel like this, it’s learning to cope with it that makes the difference. Take care 🤗X
I meant fighting the emotions rather than the disease. I know it’s pointless to think you can get the better of it. Thing is, I’m not a hugely go-getting person, I don’t set myself goals or push myself, and I’m happy with that. But this disease has really tried me. I have to think twice about doing the smallest thing. Little pleasures. I enjoyed before bring new challenges.It’s a help coming on this forum as most folk just don’t get the relentless drain that constant pain is.
I hear and understand exactly what your saying, personally I think the emotions and disease go hand in hand, frustrations,😤 anger, 😡lack of sleep,😴 and pain,😩 impedes on our physical & mental health, everything becomes challenging on a daily basis. It’s finding a coping mechanism that suit “you”to help you through this moment in time. Hopefully there’s brighter days ahead ☀️☀️hugs 🤗X
I’m going on holiday to Gran Canaria on Saturday and it can’t come quick enough! Thanks for your reply 😊
It's hard and it takes time, such an enormous change is not easily dealt with. I think we all go through different stages of adaptation and our reactions are individual in this process. In the end for me personally it has not been a process of fighting with anything, not the disease or against feelings connected to having to give up so many meaningful things in my life. It has been more plodding through all this one step of the time finding eventually the new reality and the new me and best ways to take care of myself. Strangely enough there are new meaningful things that I have found, brought on by the illness. I do wish all the strength and luck on your journey. Simba
Sjhoney, in a few words it is emotionally difficult at times.
But, things do get better.
Controversial to some , but Like AngelMar, I'm not keen on the way some folks say you need to 'fight' RD. Fighting involves violence, inner turmoil and hitting out (physically or emotionally), and is not something I would advise, as it causes stress and distress, both damaging to folks with RD.
And, for me, that's a very inappropriate use of my limited physical and psychological energy, as I want the best I can have with RD, fighting isn't part of it (except fighting the NHS for better care , but that's a different story!).
I had been thinking about all of this when my long awaited clinical psychological (self requested) appointment arrived. It helped a lot to speak through my inner thoughts in a protected environment. The psychologist helped me see that maybe acceptance was better and I now had the space to work on the important things in my life.
I am a very different person to the Marie of pre RD 28 months ago and you will be a different person too. I'm not physically healthy, I am not the athletic outdoors person I once was, I get mentally fatigued easily, I don't hold down an 'important' job anymore and I'm not going to be the active grandmother I thought I would be to my new grandson. These are all facts, nothing i do will change any of these.
But I am the Marie that has the ability to make the best of what I have, that's still me, and I'm strong and resilient. New opportunities are there, but they do take time to emerge and then consolidate. I've had to learn to be more patient, that's a positive change (!)
I'm fortunate I was able to buy myself a new automatic car, easy to get in and out of. So instead of walking up hills, I now drive up and wander around for the few hundred yards I can manage, I have a lightweight easy to operate seat, so I can sit out. Instead of brewing tea and open cooking I take a flask and a sandwich. I bought myself a new camera enjoy developing my photography skills, organising and deleting them also gives me something to do indoors on a wet day and is a great emotional boost looking through the photos. So, I get out to do what I enjoy, but I've accepted the limitations, rather than fighting them.
You, no doubt will have things you can adapt and accept.
As for the 'pity party' statements you occassionally see on here, ignore them.
You do need 'soulfish' space, It is not selfish, or seeking pity to say you are finding things hard. You would be something less than human if you didn't find chronic Ill health a challenge. It's okay, not to be okay sometimes, you do not need to the upbeat , smiley person all the time ......come on here and let it all out, there are plenty of folks who will offer support.
You are not giving in by accepting, then making the most of your energy by adapting to a situation out with your control, you will be making positive change.
I totally agree with all your points. I didn’t mean fight the actual disease as I know that would be pointless. I work within my limitations but sometimes you’ve just had enough and feel like having a day of feeling sorry for yourself 😄
I’m an artist and this has knocked any creativity on the head! I’ve just lost my mojo. I know it will return an I’m channeling it different ways. I love to knit for my grandchildren, and I love looking at other folks work even tho I’m not making any myself.
I’m just having a bit of a shit day and wondered how other folk cope 😩
I think mental health is a big factor in this disease and it took me a year to accept it and I do find I’m more on edge now and get emotional at times but then I think to give myself a shake and try and stay on top off things , but this disease pushes us to the limits xxx
Sj well,I’m not ina pity party not one bit.. I’m fed up of it it’s like a huge circle and I keep going around and around and don’t get no were drugs not working drugs giving me more issues so if that’s a pity party I’m in it.. it’s all well and good if your in asettle good place.. I’m for one not in that place.. hope you get in a decent comfortable position with your RD..goodluck.
If it's any comfort you ain't on your own! Trying to see a rheumatologist in my area is nigh on impossible! Don't think they can do much else for me anyway so wouldn't be a bit surprised if they've thrown in the towel.
As you say not all of us are in a good or even an OKish place.
Hello again wishbone,
So sorry you don't seem to be in a very good place. Perhaps seeing a doctor would actually cheer you up. As I have understood you don't really have recent information about your situation (?) it may not be as gloomy as you think.Being on top of things often helps. Take care and all the best. Simba
Hi Simba,
Bit of a long story if interested........
No I'm not in a very good place at the mo. I've been a lot worse, but my concern is that I'm slowly heading there again. Difficult seeing a rheumy as my health board has yet to replace my old rheumy who retired last august. I did manage to see the rheumy sister about a month ago and told her that I'm a bit worse since stopping hydroxy a couple of months ago. She suggested increasing baricitinib but as my RA wasn't too bad, I declined the offer because of the increased risk of infection due to a bladder condition I have. I stopped the hydroxy because of the usual thing, yep...acid reflux again! So we decided to try one tab a day instead of the two I used to take. Unfortunately two days after taking it I was having reflux again, which I'd managed to keep under control since we discussed it a few weeks ago.
Anyway, since seeing the rheumy sister my RA has continued to get worse, so I've been corresponding by phone with a rheumy nurse who's really nice, but isn't familiar with my case thus has to try her best to contact the stand-in rheumatologist every time I ask something that she is not qualified to answer. Our last phone conversation was on tuesday when she had to again query something with the rheumatologist and she would phone me back on wednesday. I'm still waiting to hear from her.
If I don't get a phone call today then I might phone rheumy on monday, but to be honest I can't see much point as there's no other medication I can take...they can either affect my RA damaged lungs or increase the risk of infection, which I certainly don't want as I've had 2 bouts of sepsis in the past and don't want to go there again. On the other hand I'm worried that if my RA gets really out of control as it has done before without meds, then I'm concerned it could affect my lungs again, which seem to be fairly stable since diagnosis 3 years ago...fingers XXXX on that one! Guess I'll know for sure when I have my next lung function test in June. That's if I even bother going as it won't change anything whatever the result. Also, for some reason and whoever the rheumy is, she now appears not to want to take the risk of me getting an infection by increasing my baricitinib, or at least it hasn't been mentioned again.
Sorry for the negative post, but yep, I'm not feeling very positive at the minute, nor about my future come to that.
I do hear you. Can well understand why you find yourself in a bad place, not having really anyone to turn to for help. No one who really knows your situation or, it seems is willing to take responsibility for your care. Have you ever thought about going private? I do not know where you live but I know that there are good functional medicine doctors in the London area. A functional medical doctor looks at the whole you.There is a hospital in London for integrated medicine where rheumies work in this holistic way, I have understood. I do hope you find help that feels like help soon.
Take care. Simba
There are on or two functional medicine doctors not too far from where I live. Worth investigating if things continue to go downhill. I was under my old rheumy for 8 years and really didn't want her to retire. Not that she could pull anything else out of the hat, but she was lovely and seemed to have my best interests at heart. I just hope the baricitinib keeps my RA from getting any worse. I'm having trouble getting my reflux back under control since I tried restarting hydroxy. I'm stopping aspirin for a few days and hope that will settle things down again.
Thanks Simba
Sorry about your continuing reflux problem. Too bad you needed to stop aspirin so good in more than one ways. Did you take bicarbonate with it and are you still taking gelatine, if how much? When were you last on a course of antibiotics?
Yes, I was taking bicarb with the aspirin and it did improve matters with only the odd evening with mild reflux. It seems to have got worse since I tried going back on hydroxy a week or so ago, which gave me fairly bad reflux just a couple of days after starting it. Continuing to have reflux off and on since though not so bad as I had off the hydroxy. Also been having periods of a burning sensation in my stomach, which I've had only very occasionaly in the past, and not persistent like it's been this past 2 days.
I've been taking 2 teaspoons of gelatine per day, but have forgot to take the odd one here and there.
I'm very anti antibiotic if that makes sense! 
I haven't had any since an immunologist I saw about a year or so ago prescribed a 12 week course of a low strength antibiotic to treat a chronic skin condition, and what a waste of time that was!
It must be another 18 months prior to that when I was being prescribed a lot of different antibiotics for recurring UTIs. Thus I've become resistant, or rather my e. coli type bug has become resistant to all of the common antibiotics used to treat UTIs.
As much as I dislike saying it, I think my stomach might need investigating?
My thought about the antibiotics had to actually to do with your stomach problems. Very often when we have RA and especially when you have been on PPIs you may develop SIBO ( small intestine bacterial overload) this makes reflux worse and esophagitis as well. Takeing a tetracycline antibiotic course can makea big difference.To plan this you get best help from a functional medical doctor.Dont forget the gelatine powder!! ( you can ask your wife to remind you 😉) 3tsp are ok one with every meal. Do you eat a lot of meat?
I used to, but have replaced it for the most part with fish.
I hope it is something seemingly easy to treat with antibiotics! Presume a sample is tested to confirm SIBO?
Anywhere tea is fine. Here are examples for testing SIBO.
verywellhealth.com/how-to-g...
Meat often gives you more acid reflux, so it's better with fish. Tomatoes not so good eather actually, the same goes for all fermented foods. Don't remember, do you eat gluten? Lots of things you can test foodwise for decreasing acid reflux.
Out of those 3 SEBO tests the 'medication trial' is obviously the simplest to do and seems more reliable than the other two, especially that 'breath test'. 
Can't my GP do something similar with antibiotics? It was a long time ago, but a late friend of my wife was having similar stomach issues as me and we are sure he was tested in some way by his GP and successfully treated with antibiotics for some type of gut bacteria.
I do eat gluten and would find it difficult entirely cutting it of my diet as I'm a very picky with my food, but if cutting out just 'some' gluten products might help my stomach then I'd give it a go.
Try just three weeks without gluten. Then you know if it makes a difference😊
Three weeks is a tall order for a food neophobic like myself, but if my gut doesn't calm down over the next few days then I might just give it a go as it can't be quite the ordeal that having an endoscopy is... can it?! 
No reflux yester-evening, but still having bouts of this burning sensation though maybe not as much as yesterday.
Both endoscopies gastro and colon are invasive procedures that in my opinion should be used only when other options tried and also then with caution.
I'm certainly not going to argue with that! Perhaps not as uncomfortable as the two types you mention, but I've had more than my fair share of shall we say 'lesser probes' inserted over the last few years!
Poor you
I can only imagine. You said you were a picky eater so what ARE you eating?
No need to feel sorry for me - I'm tough!
Hmm, where to begin? Just don't tell me off as I had enough rows about my fussy eating off my mother when I was a young lad, and for some time into early adulthood.
Here's a brief rundown....
Vegetables is an easy one to begin with... with the exception of potatoes, lettuce, water cress and certain brands of pickled beetroot, I don't like any other types of vegetable. Even though I've only tried a few I can just sense that I'm not going to like them...the same goes for many other types of food...call it a special gift if you want! Not a very good start is it! To go some way to make up for the lack of vegetables in my diet, I do eat most fruit and enjoy nuts on occasions. I eat rice, prefer white, but also eat brown on times. Eat a fair bit of pasta and both brown and white bread, those two along with spuds form a staple part of my diet. I eat chips once a week. I also try to eat a bowl of proper cereal such as Weetabix and Porridge every day. As mentioned I eat a lot of fish and occasionally meat, though mainly chicken there. Dairy products include semi-skimmed milk, occasional bio-yogurt, not a big fan of cheese but do like the odd piece of Cheddar and eat a fair few eggs per week. I also have a sweet tooth and even though I probably do eat too much sugar my weight is not a problem even though I'm not very active.
I know it's not the best of diets, especially regarding vegetables, but I do try to eat as healthily as I can and don't think it's too bad considering.
Just thinking what in your diet would make the reflux worse.Have you noticed?
Probably... cheese, pasta, bread and sugar?
edit...maybe cereal too?
Thought so would add the chips and cereals but not sugar.Youghurt and all fermented stuff.
Cyproheptadine is an antihistamine which calms stomach and has a huge list of benefits. You cold ask your GP.
The only ones I can cut out there are chips and yogurt, which I'm not a big fan of and was only eating yogurt because I thought it would help my stomach. Can't cut out cereals as I also have opiate related constipation on times.
I used t think youghurt was good too Do you take opiates often?
Been taking 300mg of tramadol plus 2000 mg of paracetomol daily for the past two years or so. Managed to reduce both to 225mg and 1000mg daily since starting baricitinib. Tramadol is starting to creep back up as my RA is getting worse. My hands, arms and shoulders were really bad this morning. It was painful just trying to wash my hands and not possible to raise my arms to the horizontal.
As I've said in previous posts, if the baricitinib is beginning to lose effect, then unless someone knows something that I don't, my RA will become untreatable.
One thing, I hope you are not taking the coated aspirines? These have shown to actually not help with reflux and in fact the non coated are better. You could try taking bicarbonate also before bedtime. Helps with neutralisizing acids as well as constipation. 1/2 tsp in 4 oz water.
About coated aspirin.
thelancet.com/pdfs/journals...
Don't think so...it says dispersible aspirin on the box. Now you mention it I'm sure my GP tried me on another type a while back. Can't remember what they were though?
My stomach does seem to be calming down. I can't seem to manage without 20mg of omeprazole though, even before this recent flare-up. I'm sure that restarting hydroxy has kicked things off as they were under reasonable control when I was dissolving apirin in bicarb and taking it during a meal as advised by you. I shall abstain from aspirin for a few days yet. Should I continue with bicarb at bedtime once I've restarted apirin/bicarb?
I have a lot of trouble with my arms, hands and shoulders. Yesterday was the worst they've been since I started baricitinib. Thankfully they're easier this morning.
Hard work all of it .
It sure is! Perhaps I should be more stoic and not moan so much!
Better to moan😉
I almost have it off to fine art!
Seriously, though I am getting really fed up with things, I'm not allowing myself to become depressed... not yet anyway!
I can’t add much more but I do try and take each day as it comes and try to not get wrapped up in things that I can’t do and focus on what I can do. Having said that when movement is limited or I’m in a lot of pain it’s hard to accept the frustration of not doing anything. Talking is the best therapy for sure and having people who understand on this forum is a fantastic help. Sarah xx
Hi Sjhoney, I’m also an artist and painting is now my lifeline for emotional health! For the first year of diagnosis I didn’t work at all and suffered not only physically but mentally to, for the last couple of years I’m back to it. I’ve had to adapt and my canvases and brushes are smaller...and I start work later, once my body has got moving! I think about my work all the time, which is a lot better than thinking about the pain!!! Have a lovely holiday and enjoy the sun on your bod!!
Good to hear from another artist!
I worked mainly in stained glass which, as you can imagine, is pretty physical and hard on my hands. I’m moving away from it now, partly due to RA but also because I need a change. I did a weekend painting course, which I loved, a couple of years ago and I’ve also dabbled in printed textiles. Once my head is in the right place I know I’ll get back to being creative 😊
After having suicidal thoughts I immediately contacted my gp and I am now on anti depressants which has helped it was massive life change for me as my job was a dance and fitness teacher and I can no longer run my business independently😢😢😢
Oh that’s awful, poor you. It’s such a cruel disease, robbing folk of their lives.
I have to say before I was diagnosed it was completely off my radar. I thought it was something old folk got.
This may be a bit controversial but I don’t think it’s one of the ‘trendy’ (for want of a better word) diseases? You hear so much about mental health issues and cancer, which of course are awful, but there are so many other afflictions affecting folk.
I hope life is better for you x
The constant pain etc does get one down but I try to live in the moment and only do what my body allows. I don't dwell on the fact I have this awful condition as there is no point . I think the best thing is to accept. Very difficult.
I speak as a fellow sufferer and as a former mental health practitioner/psychotherapist.
Mental health is, in my experience, a significant factor in RA as in any life changing condition. I am convinced it was a factor in both the onset of and my coming to terms with its presence in my life. The latter, despite my professional experience and knowledge of what I should be doing to help myself, not really beginning until I started the Biologic and the slow improvement in the quality of my life, the transition from existing and not wanting a future like this to a reduced, but a quality of life worth having began.
The suddenness of such severe disabilities, pain, loss of independence, fear (such fear)... are all so life changing that it is inevitable we feel massive loss/grief. It is natural to progress through the grieving process which isn't only related to the loss of a loved one. There is no set time frame for this process. It takes what it takes, very individual, but I think it's helpful to make sense of what is happening to you emotionally as well as being helpful if those around you have some understanding too. The five stages of grief are denial, anger, bargaining, depression and finally acceptance. They are all a part of the process that makes up our learning to live with the loss of what we lost.
The advice of talking to your GP/Rheumatology Nurse re chemical intervention ie. an antidepressant and/or referral to some form of talking therapy I would definitely recommend. Talking to family/friends, writing a journal are also very helpful ways of allowing yourself to think about, clarify what those complex emotions/thoughts are. This is such an important process to help one move forward through that grieving process. I really found the journal helpful both personally and when working with clients in the past. You can be honest, do it at your own pace and not worry about upsetting/frightening/worrying about what others think. The antidepressant, of which there are many, and I take one, helps restore your sleep pattern, such a plus in my book. You can cope with life so much better if you sleep. It also helps to manage the anxiety, the emotional lapses, the anger which all contributes to feeling a little less vulnerable... maybe there's some light, some hope for the future. There is no shame in taking one, admitting you need help. A hug doesn't go amiss either. Being kind to yourself which somebody has already mentioned, is so important too. We don't tend to be very good at this. I think it's a cultural thing that we're so self-critical and private. An example - You're not being lazy. An alternative way of thinking might be; You're managing the fatigue, having a rest before the next step. A useful reference is
"The Mindful path to self-compassion: Freeing yourself from destructive thoughts & emotions" by Cristopher K Germer
Another strategy which is useful, worth learning is Mindfulness. Here are some useful references you may find helpful. The reading is not heavy going and many come with a CD to facilitate practice
"The Mindful Way through Anxiety. Break Free from Chronic Worry & Reclaim your life" by Susan M Orsillo & Lizabeth Roemer
"The Mindful way through Depression Freeing yourself from chronic unhappiness" by Mark Williams, John Teasdale, Zindell Segal & Jon Kabat-Zinn
"Living Well With Pain & Illness - Using mindfulness to free yourself from suffering" by Vidyamala Burch
"Mindfulness for Health - a practical guide to relieving pain, reducing stress & restoring wellbeing" by Vidyamala Burch & Danny Penman
I've waffled on maybe but hopefully constructively so some of this may be helpful. These resources I have used professionally and found helpful myself. You may find groups for Mindfulness and certainly talking therapy services will mention it and may run introductory groups to get you started.
Hi thanks for all your advice, very helpful.
I am already on an antidepressant as I have suffered with depression for a number of years. The journal is a good idea, a way of getting your thoughts down without feeling you’re burdening anyone else.
Thanks again 😊
Hi, I totally get how you feel, losing ya mojo ! Emotional health is mega important for everyone , not just those of us with complicated lifestyles. I have worked with people and do talks on emotional health and well being and I certainly don't have all ( or even any ) of the answers and struggle immensely. I cant give any answers but all I can (humbly) say is that all feelings even difficult ones are valid and are for a purpose a bit like senses ( something smelling bad tells us that it is off and not to be eaten etc).Its not the feeling that is the problem so much as what we do with them, how we deal with them, either positively or negatively, and that's what has the impact on us. So I agree that acceptance , letting go of the frustration/anger etc etc, and talking are the ways forward. Botttling, squashing, fighting against hiding them is not good for us physically and mentally. That's why its so good to have this forum as a way to share and support
I can no longer do many of things I used to do for my emotional health/well being like so many people , like running , dancing, etc etc. So I am trying (trying! ) to see it as an opportunity to try new stuff . I'm trying Yoga (not too keen but hey !) and swimming (hmmm?). I cant wear my lovely heels anymore and have gone up 2 dress sizes. These things should not and are not important in the grand scheme of things -- except they are to our emotional state, well being and self image . So I have set myself the task of finding glamorous and stylish flat shoes (impossible so far ) and learning a new style of dressing (!!??) Change , change change on lots of fronts with this disease. That's the hard thing to accept. But we are not defined by what we cannot do but by what we can do. All this is easy to say or write and soooo hard to do .
I don't write on the forum very often, sorry its a long one.
Not at all! Very valid points you’re making!
I totally get the thing about shoes, I used to love buying shoes but now I’m limited to ones I can fit my orthotics into 🙄. I can recommend Fly London, they have some very funky styles and are really comfy.
Thanks for taking the time to reply 😊
Hello I like to think that we are warriors fighting our iwn day to day battles, I try and look for the beauty in each day like a flower or a bird flying in the sky to try and divert my negative thinking and smile to myself. Being kind to yourself with little things like a fluffy blanket or a hot drink etcetera helps. We are All lifes Warriors I applaud us all. Sending you a big hug Marjie Xx
Aw, thanks! Yes I too find joy in small things 😊
I suffer from RA and a number of other chronic conditions. Unsurprisingly I also suffer from depression. I have recently been reading a book called The inflamed mind by Professor Edward Bullmore. He is a professor of Psychiatry at Cambridge University and a leading light in the emerging field of Neuro-immunology. In the past it was always assumed that there was no direct link between inflamation and depression. New research shows that both are directly linked to our immune system. It is a fascinating book which I would recommend to anyone who is interested in finding out about the cause of their depression. It doesn't offer any Magic Bullet, any instant remedy, but it does help us understand exactly what is happening which is a good starting point.
A great book
Ditto. Really interesting and readable. Puts a different perspective on things but early days regarding treatment sadly
I’m sorry you’re having a bad time right now, and can empathise. I still feel very angry and low at times at having this disease. My focus recently is doing what is right for my wellbeing, physical and mental. For me that meant cutting my working hours right down to three days and also putting gentle exercise into my day. I also try and eat good nutritious food, but don’t sweat when I’m too tired to fix a fancy meal, and settle for something simple instead. The limitations of my own hands is very hard, I’m not an artist, but I work with young children, and find it so upsetting when I can’t cut something out without pain. Try and be kind to yourself x
Hello, I am one of the people silently listening and absorbing the words each of you have shared here. I am immensely grateful, and more hopeful.
Hi Sjhoney
I thought you might find our recent survey report of interest, as it looks at the impact of RA (and JIA) on emotional health and well-being:
nras.org.uk/data/files/Publ...
Kind regards
Victoria
(NRAS)
Anyone on Barcitinib? How did you get on with it?
Taking injections abroad
hope we all stand together and keep warm guys 
