Has anyone found any meaningful help dealing with the feeling of depression which accompanies fatigue? I’ve tried CBT and person centred counselling. Spent more time convincing And educating the therapists about RA and that the fatigue/depression is not something I can control than I did getting any meaningful help. When I’m well I can move mountains (you know what I mean😂) but when fatigue and depression hit I really don’t want to go on living. I ought to add I’m a predisposed doer and an optimist: the fatigue thing is beyond frustrating. I feel my life has been taken away from me. I can’t face explaining all this to another therapist ‘type’, who eventually does some research and then ‘gets it’. So no dear therapist:
👉🏼i don’t need antidepressants;
👉🏼I’m ok when I’m well.
👉🏼 I eat a great diet full of nutrients based on fresh food.
👉🏼I take iron, omega3, calcium and Vit D.
👉🏼I sleep well (generally speaking)
👉🏼I exercise every day on good days. Some days you’ll find me up a mountain or doing 50 lengths in the pool.
👉🏼Having a list of things I can do on bad days is no help. I can’t get out of bed/off the sofa. The fact I can’t do them just depresses me more.
Thanks for reading my rant. I ought to add that I’m writing this on a good day (apart from agony following a botched root canal and botched tooth extraction). I wouldn’t have had the energy or ability to write it on a bad one.
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Madmusiclover
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It sounds like you didnt have a very good counsellor /therapist ! I ,like you am a doer and optimist when on form, and struggle with the whole kit and kaboodle of RA, particularly the loss of physical and mental get up n go. I totally get what you mean about the self help practical 'text book ' things to do and the frustration that the fatigue cant be predicted or controlled.
I know that maybe you have been put off the idea of counselling but I think it depends who you get refered to. I would say try again .
I self refered through IAPTS, and had some very good counselling with what I now know to be a person trained in issues (depression and anxiety) of medical cause. The therapist didnt once try to find a 'soloution' as in your list but I was able to work/ talk through how i felt and although it hasnt stopped the low low feelings happening I now have some personal strategies for dealing with the depression on bad days.
You had better luck with IAPT than i did darling. They said they couldn't do anything to help me would you believe. When my daughter told her counselor about it he couldn't believe it and said it is plainly not true.xxxx
Thats awful sylvi. I was in Warwickshire so maybe it depend on the local services ? xxx
Hi Madmusiclover,
My escape is youtube. On the days you can’t get out of bed I travel the world, (watch on your tv, phone, or I-pad.)
I marvel at the beautiful places, buildings, and beaches around the world that I’ll never get to see with RA or not. Also the knowledge and facts I get from watching them is amazing.
Music is my next fatigue day passion. I love the relaxing sounds of the Ecuador panpipes from Raimy Salazar and the music from Yellow Brick Cinema among many others.
I never ty to fight my RA because I’ve learnt after 23yrs there’s only one winner and is here for life along with the pain and fatigue.
Try to accept your fatigue days as a well earned rest as you know it’s not going to last forever. Try to go with the flow and you might just find it easier to live with. I think us RA sufferer have tweaked our lives to accommodate this bloody RA at some point unfortunately.
I do hope you can find a diversion from the fatigue and depression your going through and getting it all off your chest is a good start. We all understand exactly what your saying.
Thank you. All I can do on bad days is listen to radio. I can’t cope with visual imagery or written word or music and I’m a musician! I am learning to accept but when it goes into a third week, then you get a coupe of days ‘off’ followed by another two weeks: it’s hard to accept. Thanks again.
My gp would want to give me drugs. Truth is I need RA to be better controlled and a drug review. Haven’t seen a consultant in over a year now. ‘Maybe’ November....
I just watch the birds. Then walk up and down the stairs to stop getting too stiff.
I feel just mushy - can't concentrate on anything, like listening to anything that requires thought, reading anything for more than a few minutes (what did I just read?), using my painful hands, using the computer... anything is too much.
You have to accept that sometimes it's too much to do anything.
Yes. That’s it. Sometimes I struggle to keep my thoughts in order long enough to make a cup of tea. I even found myself googling RA and dementia. Thank you/
Wish I could help . I suffer disabling fatigue. Sometimes it’s your medication not working. I’m changing for this reason going on to baricitnib apparently helps with fatigue 🤞
Such long and frequent periods of what you call flaring sound to me more like your RA is not properly controlled. I think that’s what’s causing such fatigue and hence your depression. It seems from posts above that others think so too.
So please contact your Rheumy nurse or patient helpline and ask for help straight away. Do say your bouts of fatigue are causing depression and hopefully that will prompt a speedy review of your meds. 🤞🏻
I even went in to see them. Got a subcut steroid that wasn’t effective and rheumy nurse said ‘you really need to see the consultant’. Phoned again this week. Still on waiting list. Still maybe appt in November. Leicester Rheumatology is woefully understaffed.
So you’ve done what you can. Just keep pushing for that appointment if you’ve not heard anything in another couple of weeks. If you’re not already on daily Prednisolone Tablets you could ask for a short course to help you in the meantime. I
Hi there I am on oral steroids at the moment 're a pretty major flare. Had a phone consultation with rheumy who prescribed them and added omeprozole to help with tummy problems. So far it worked so maybe.....
I am wondering if things are being exasperated by the botched root canal work and that you are fighting an underlying infection around this...... I ask because some have had teeth/gum issues fixed and then suddenly their autoimmune issues ease!!
Other than that possibility my fatigue days are for, on dry days, wrapping up warm and snoozing in the garden listening to birds etc., curled up on the sofa (not in bed as that is guaranteed to get me ‘down’) and listening to plays on the radio/iPad: pestering you lot ‘ere with responses 🙃 and just being rather than doing.
Hi MML, sorry to hear this. When we are in pain or really out of sorts we often turn away from what we love doing the most. I’m an artist and I was unable to paint or draw when my RA was at its worse a few years ago. What about some podcasts? .. many are quite therapeutic but there are loads which are amusing/entertaining. Hope you find some pleasant distraction.
Oh yes I love them. David Tennant is my favourite podcaster! I don’t feel I’m deliberately turning away. When the ‘brick in the head’ appears there’s no room in there for any processing of information. When I’m so so or ‘well’ I’m up and at life. The contrast is startling!
I must listen to DT as I think he’s fantastic. (Best Dr Who, too!) I like Ru Paul & Michelle Visage although it’s can be naughty 😆 but extremely funny and also Fearne Cotton has some amazing guests on her Happy Place. As others have said, we shouldn’t beat ourselves up about not doing much if we feel bleurgh. I’m a whirlwind of activity mostly but I have to slow it down sometimes and that’s when my art and working at things at my desk happen. Will happen more too indoors as the weather is cooler and I’m not in the garden. I’m out there now planting violas in container pots and hanging baskets and having a cuppa! I have a SIL (not with RA) who runs her life by lists and even writes an agenda if you go stay (We don’t anymore! My hubby sabotaged it the last time we went!! 🤪) and she even allows herself fifteen minutes to clean the sink and twenty to vac upstairs and writes a long list but it’s all too much control to me and she is a control freak .. so she’s controlling herself! (Wondering if she had 30 seconds on her list for a loo visit??!!) If it works for her and others then fine. Not for me. I have a few reminders written in my note section on my iphone. I had to have loads of lists for ten years when I was studying recently so I’m not going to be rigid and work to those now! So if you don’t achieve what you intended to that day .. do it tomorrow!
Also I’m thinking of getting one of those iPad size anti SAD devices to give you the hour of daylight we need as that can supposedly stop you feeling down. I don’t usually feel too bad but I don’t want my hubby to get down with working at home and not going out during the day. Wondered if you’d thought of those or tried one?
I haven't found a cure to the depression either. However, when my RA therapy (meds/diet) are working, my fatigue is reduced. That said, if I spend a few days (this varies) being very active i.e. living a normal life, thats when the fatigue hits me. It is almost like the RA is telling me enough is enough, its time to rest and just to make sure you do... RA is flicking the switch. I chatted with my friend who is a CB therapist (amongst other things) and who works mostly with chronically ill patients, she suggests that pacing yourself is a key part of living with RA. So I do try to have quieter, slower days in between the busier ones.
Keeping my head straight and depression at bay for me, is very much about acceptance: - love it or hate it, I am where I am and I have to live with it. That doesn't mean I stop fighting it , it just means I find my own way to deal with it. I almost have to give myself permission to enjoy times of prolonged sleeps and turn these into box set catch up days (not that I actually manage to watch them! sleep intervenes).
How do you describe the fatigue that comes with RA? For me, it is the most profound feeling of whole body and mind exhaustion. Like the Duracell bunny with the battery removed...
Like you, I would not take antidepressants, or see another therapist (but then I don't need to - friends in the right jobs). My diet is healthy and I take daily exercise.
I learned many years ago if you accept the fatigue, and tell yourself it doesn’t really matter if you don’t get through everything in one day ....having lifted that burden & accepted it....life seems easier......you have less stress which may be encouraging depression?
Did you become depressed before you had RA? You obviously have a sense of humour & have looked outside yourself for help....but have you looked inside at your attitude to the fatigue?
Have you had your RA drugs reviewed recently? If you are taking regular steroids...they can often cause central nervous system symptoms.....that is worth speaking to your doctors about.
You have listed many positives.....try adding I accept the fatigue will pass...of course you will probably still get the fatigue....but you know it will be transient.....& possibly less frequent ... if you could look at it like that?
Thankfully I had a very sympathetic rheumatologist who explained that chronic fatigue was part and parcel of RA for some, & if I could accept it...my mind would adapt & he was right,
I do still have times that I just can’t force myself to get going....& now I don’t blame myself anymore I manage to accept it will pass...& it does.
Not very deep & scientific I’m afraid ...but it has worked for me.
I do hope you can find some help in the many answers I’m sure you will receive
I relate to all of that. It’s the acceptance bit I’m seeking help for. My rheumy ignores any mention of fatigue even when I sob in front of him or tell him I feel suicidal. Haven’t seen a rheumy for a year, ‘maybe’ November. Thank you.
Believe me ....accepting my retirement plans were gone forever was one of the hardest things I ever did. I had planned everything even down to the area I wanted to live abroad - but in six months ....there it all was - gone thanks to RA.
Hobbling around on crutches and not even managing that very well because both my wrists were knackered was a big wake-up call that I certainly didn’t want to hear.
But MML.....if you want any quality of life ...accepting what is ....is the only answer....or it was for me.Unless as I suggested maybe your RA drugs need adjusting....put that on your Q list for next month.
I’m not helped by being called on by Dad when he’s struggling to cope with mum with Alzheimer’s. I’ve told him I’m not always available but he refuses to take help outside ‘the family’. That’s me and my alcoholic brother. Life eh?
Well you can do something about that.... I know anything to do with social care at the moment is very thin on the ground but you could speak to your mothers doctor and ask if there was any chance of some respite care for your father that might keep him off your back...& take away that “when will the second shoe drop” tension you must be feeling.
I looked after a very elderly aunt and I surprise myself about how valuable I could be and how insistent about her needs .....which I could never have done for myself.
I know how difficult old people can be my (after all I am one now ) my aunt lied blatantly to the social worker who asked her if she had a bath every day she lived in a very old house with a tall Victorian bath and had not been in it for 20 years but she said had a bath every day. Which of course was just what the social worker wanted to hear to be able to refuse her any help.
I just kept at it and eventually did get some help for her and an alarm in case she fell.
But I agree the way the rules are written unless the person concerned actually agrees to have the help they won’t give any.
I can only say keep trying ...explain to your Dad how much you have to do ...if you still work explain you need more time for work.
A friend of mine’s father just couldn’t take it any more and he left his house with the door unlocked telephoned the doctor and said he couldn’t manage any more and that way help was arranged,,,,, but of course your Dad is obviously not going to do that.
The doctor in question called Social Services...saying a vulnerable lady was alone in the house...his wife was taken to a day clinic a few days a week.....& it seemed just that bit of respite settled things enough for him to carry on.
There is a strong indication that the vagus nerve connects the gut microbiome to the brain and if you can promote friendly bacteria in your gut either by diet or supplements then there is good evidence that your mood & general health will improve. Green Veg. Onions, Garlic, Nuts, Legumes, Kombucha, Natural home made Yoghurt, Olive & Coconut Oils, Sauerkraut all help to increase beneficial flora in the gut. If you cannot incorporate these into your diet then there are Pre & Pro biotic supplements. Leicester Royal just lost one of their best R. A. Consultants!
Have followed the supplement route for 6 years and have not had a chest infection or bad reaction. You have to be careful who you buy from and check references or reviews and be prepared for healing episodes where you could feel worse for a couple of days.
I just take my kindle and settle down and read for as long as can and if that doesn't work I catch up on all my recorded stuff on virgin. It takes my mind off feeling depressed for some of the time, but when the fatique hits hard I sleep if I can, it help also if I just ring someone for a chat if the fatique allows
I also talk to my husband and tell him how I'm feeling and that helps.
Could you try a biologic? Humira (adalimumab) had a pronounced mood lifting effect for me. Sadly I was taken off it because I had cancer twice and there is a theoretical cancer risk. I’m supposedly in remission from RA now. When I feel down, seeing friends (if permitted in times of Covid), and/or doing something creative, or going for a walk or bike ride, help lift my mood.
Yes, I know I’m lucky. Another thing from my experience is to be aware that hypothyroid (underactive thyroid) can occur alongside RA, as it can occur as an autoimmune disease, known as Hashimoto’s. Mine was quite bad when it was picked up by a GP practice nurse, who noticed my heart rate was very slow. It was causing terrible fatigue and ‘brain fog’. I needed thyroid medication for that and was amazed how alive I felt! Another thing I discovered which causes fatigue for me is eating gluten - I’m completely gluten free now, but if I have even a tiny amount in something that’s contaminated I hit fatigue like a wall and brain fog too. I hope you get some relief from the fatigue. It’s absolutely the worst thing.
I was told by my rhuemy that a lot of people suffer with depression specifically when first diagnosed, one day I’d just had enough of hospitals & med so I just gave it up & when I thought about it I returned & spoke to my rhuemy about it and she said majority of people feel exactly the same , what she said is when you come to terms with it you will progress BUT I will never come to terms with it
But read The Inflamed Mind’ by Edward Bullmore, which makes the case that inflammation causes depression. An excellent book,very readable, by a UK hospital consultant. Do read it if you can.
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