Exhausted and Depressed : Hey everyone. I was diagnosed... - NRAS

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Exhausted and Depressed

Bumpkin13 profile image
33 Replies

Hey everyone. I was diagnosed with RA in November 2018.It has been a hard journey so far. I just feel so exhausted every day,it's like I'm not the same happy go person I used to be. Is this how some of you feel or is it just me? Can anyone give me some information on this exhaustion and depression I'm going through.😔😢

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Bumpkin13 profile image
Bumpkin13
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33 Replies

Hi Bumpkin your not on your own. My biggest symptom is fatigue a word doesn’t express the reality. I’ve had RA for 3 1/2 years and this year has totally passed me by. I’ve barely participated in life . I’ve reduced my working hours my holiday was a disaster and my husband has said I’ve really deteriorated. My meds need changing but now I’m displaying symptoms of Sjögren syndrome and have to wait for tests first. I’m not depressed thankfully but it does get me down. I’m determined things will improve. So many people on here suffer with fatigue. I have no answers .. if you’re depressed please see your GP.

Bumpkin13 profile image
Bumpkin13 in reply to

Wow, I'm so sorry your going through all that.. It really does change our lives..I just started seeing a new physiologists but with my luck she was in a car accident and has been out for about 5 weeks now but think God she's ok and will be back soon..

KittyJ profile image
KittyJ

No it’s not just you Bumpkin, it’s a very common feeling when you are first diagnosed and are trying to get your disease under control. Keep coming here to talk to us for support and see your GP if you need to, to let him know how you are feeling so he can help 🤗

Bumpkin13 profile image
Bumpkin13 in reply to KittyJ

Thank you, it's so hard to talk to my family about it, they get so worked up with worry. I try to keep it to myself. This is a perfect thank you😁

KittyJ profile image
KittyJ in reply to Bumpkin13

Anytime 😊

in reply to Bumpkin13

Unless you have this disease you really don’t fully comprehend it .My family in general are great but they don’t always understand it.

Hi Bumpkin, I think RA changes everyone in some ways, I’ve been a sufferer for 22yrs and unfortunately this is the way it is for a lot of us, It’s learning to live with this rotten disease that’s the hardest! It’s certainly changed me and my life, and that of my family, but you do learn to live with it and adjust things in life to suit your illness and disability. My personal advise to you is tell your GP or Rhumatology Team how your feeling as this is all part of your RA. Listen to your body and take it a day at a time, accept any help offered, and when the fatigue is bad, maybe a good book, film, box set, jigsaw, knitting, or listening to music anything to divert your mind and put you in a happier place. Please don’t despair! Get help! it’s out there. 🤗 X

mrdiggs profile image
mrdiggs

HAVE HAD THIS NASTY FOR 8 YRS. AND STILL HAVE THOSE TIMES TOO. THEY SEEM TO COME AND GO, BUT REALIZE IT'S YOUR BODY FIGHTING BACK AND THAT IS EXHAUSTING BUT A GOOD THING. DON'T LET IT GET YOU DOWN. I AGREE WITH ANGELMAR---------ON THE BAD DAYS TRY TO GET YOURSELF OUTSIDE AND SMELL THE FRESH AIR AND WATCH THE BEAUTIFUL SKY AND CLOUDS AND TRY TO ENJOY NATURE. A CERTAIN PART OF THIS YOU HAVE TO ACCEPT AS YOUR NEW NORMAL AND THE REST OF IT YOU TAKE IN STRIDE AND FIGHT BACK THE VERY BEST YOU CAN. DON'T FEEL BAD BECAUSE YOU NEED TO REST AND MAYBE TRY TO DO A LITTLE BIT AND THEN REST AND IF YOU FEEL GOOD ENOUGH, TRY A LITTLE BIT MORE AND IF YOU DON'T FEEL WELL -------YOU REST FOR HOWEVER LONG YOU NEED. THE PEOPLE AROUND YOU WILL SOON LEARN THIS IS YOUR NEW LIFE AND THEY TOO WILL ADJUST AND START TO UNDERSTAND WHAT YOU ARE GOING THROUGH. JUST KNOW THAT YOU ARE GOING TO BE O.K. AND YOU CAN DO THIS-WE ALL KNOW AND ARE RIGHT THERE WITH YOU.

in reply to mrdiggs

Sorry why in capital letters?

mrdiggs profile image
mrdiggs in reply to

IT'S JUST EASIER FOR ME. NOT YOUR A ONE TYPIST-LOL. KEEP THE FAITH LOVE--BETTER TIMES ARE AHEAD ----

in reply to mrdiggs

Your messages are beautiful, and appreciated on this forum, where we understand difficulties. Unfortunately, universally, upper case letters are seen as shouting. Is a switch to all lower case feasible?

mrdiggs profile image
mrdiggs in reply to

done--------all small caps--had never heard of this before---

NusratLatif profile image
NusratLatif in reply to mrdiggs

when you're in pain and mobility is limited, caps are easier. I get it

KittyJ profile image
KittyJ in reply to NusratLatif

How come NusratLatif? I’m interested 😊

mrdiggs profile image
mrdiggs in reply to NusratLatif

thanks-----

in reply to mrdiggs

I'm glad that you allowed me to help :)

Silverpixie profile image
Silverpixie

Oh bumpkin I'm so sorry. I was diagnosed 9 years ago and I do think it is like a bereavement and you need to grieve for the life and future you imagined you'd have. I was diagnosed with autoimmune hepatitis at the same time as ra and the fatigue and pain were awful, I had so many meds. My marriage of 30 years broke down (I was no fun and didn't want to do anything - he was having an affair) . I was devastated. I couldn't work and had to move house (bungalow). However it has also enriched my life in many ways, my true friends have been amazing as have my two adult children and my sister. I am much closer to my children . I now have a responsibile part time job 10 minutes walk from home with wonderful understanding employers ( I'm a lawyer) I have different priorities in life and realise what is important. I am never smug or judgmental and much more empathetic and try to enjoy every moment. I was on the biologic pathway fairly quickly but it took 7 years to finally bring it under control and this year I've even been to Japan and Hong Kong on holiday, something I never considered or even thought possible initially.

I cannot give you advice but hopefully by sharing my story it will give you some hope for the future.

Having just reread this to check the spelling I realise that if someone had said "this will be you" I would have thought the were mad!

mrdiggs profile image
mrdiggs in reply to Silverpixie

WHAT A BEAUTIFUL STORY ABOUT YOUR GRAND SON-WELL PUT AND VERY UPLIFTING. WE HAVE TO CONCENTRATE ON THE GOOD THINGS WE HAVE AND LET THE OTHER ROLL OFF OUR BACKS.ENJOY LIFE-----AND STOP AND SMELL THE ROSES-

Mmrr profile image
Mmrr

It's all been said by those commenting above, but I just wanted to add that you can find comfort and pleasure in different and perhaps more meaningful things in life. But, it takes time to settle and find things.

I just spent an overnight with my daughter and 20 month old grandson, I can't lift him due my shoulder problems, but we wandered around the garden for 30 mins whilst my daughter cooked dinner ( I can't cook for a group now). We saw a frog and he learned frogs ,' croak' and jump. What a wonderful experience sitting at dusk, croaking and him jumping like a frog in the garden.

I would not have had this experience had I been well. I just try to find something positive to focus on.

mrdiggs profile image
mrdiggs in reply to Mmrr

IF YOU READ SILVERPIXIE -THOSE COMMENTS WERE FOR YOU-SORRY IT'S 3;56 IN THE A.M. HERE AND I GUESS MY EYES HAVE HAD IT. EITHER THAT OR MY BRAIN-

AgedCrone profile image
AgedCrone

You are right Mmrr...we all have to dig deep & try to find a way to cope.....

as we all seem eventually to succumb to the chronic fatigue that accompanies RA..

Tbh I think everybody will find they have a different way of coping...& as you say we could end up having experiences we might never have had if we were RA free.

One thing that doesn’t help is looking back. We are where we are....make the most of what we have.

I have just watched those poor orphaned children in Syria. We are safe,we have food & water & nobody is dropping bombs on us.

Makes you think doesn’t it?

It has taken me over a year to sort out my daily routine coping with exhaustion. Listen to your body

Biffa67 profile image
Biffa67

I too suffer from exhaustion and depression.Its part of RA. I was diagnosed with RA 16 years ago. My advice is make sure you strike up a good relationship with your Rheumatologist this is key. Tell them about your depression and they will treat you for it.I saw a counsoller recently and that helped immensly.

I was in remission for many years but recently my RA has raised its ugly head again.

It may take some time to get your medication correct,but as my Rheumatologist says we have got an arsenal of drugs and we will get you sorted.

Fatigue is hard to accept but over the years I have found out that if I need to rest,I rest.

I have an physical job and I like to run but sometimes I cannot.

This week I was really busy,so last night I went to bed early and slept well.

There is lots of help out there use it

Learn as much as you can about RA understand your condition.

Do not let RA define you ,take control of your life and do the things you enjoy even if it takes a lot of effort you will feel much better and positive after you hav done things you enjoy.

It is more difficult when first ill. It definitely gets better after the right medication, for you, is found. I have learnt to prioritise, to say 'No' and to take intermittent rests. I definitely cannot do anything like all I used to do, some of it will be that I'm not as young as I used to be!

Dobcross1 profile image
Dobcross1

Hi Bumpkin. I was diagnosed in Nov 18 too and have endured the fatigue and depression throughout 2019. I saw a counsellor which really helped me ad I was struggling to accept my 'new normal' and just being really truthful about how bad I was feeling helped. Since my dosage of MXT was increased in August the fatigue has got much better (I also started adding wheatgrass into my morning smoothie at the same time and I think that also helped me). You don't say what medication or dosage you are on but maybe this needs revising? I hope you start to feel better soon, this is a long and very frustrating process but hang on in there.😁🤞

Thingybob profile image
Thingybob

Hi Bumpkin. I was diagnosed in Jan 18 . I really agree with all the comments made in the replies you have had. Its sooo hard to accept that we have a disease that will never truly go away. But it may improve and we have to hold on to that whatever. I am a different person now because I have to be, as my body dictates what I can do and how in a different way than it did. And so who I am . I try (doesn't always work!!!) to see fatigue as an opportunity to do other stuff rather than the running (whats that?) and the activities the woman I used to be did. Its like starting again. I have got to know the new me after a couple of years fighting with it.

I am attending counselling which has helped massively with the depression and things and taken the pressure off loved ones as I am not needing to off load with them always. I can really recomend trying it. You can go via your gp or self refer for counselling via the NHS iapt website.

Hang in there, its hard but you are not alone :)) x

rab1874 profile image
rab1874

We’re all here for you bumpkin and know what your going through, the fatigues very common with all us RA ‘s and as they say until you’ve go eat it’s hard to understand the extent off it, hang in there xxx

Recorder500L profile image
Recorder500L

I'm sure when your medication kicks in and you are feeling a little better and hopefully will not have quite the fatigue that you have now, like the majority of us you will seek something that you can do to relieve the depression. Being diagnosed 30 years ago, I had two children 14 & 11 and had just returned to work (luckily in an Office) sat at a desk. My husband suffered emotionally having to watch me in great pain trying to continue with the everyday chores, struggling to get out of bed and to walk etc. With the children we talked endlessly in how we were all going to live with RD. One suggested that I learn to drive as we lived a distance from my work, I did, brilliant, I still have my independence although at times it is just too much. I could no longer go on walks with them, I loved reading, so I would sit in the car reading or just people watching whilst they they went for a walk, returning for ice cream or tea/cake. I didn't feel left out watching them on the shore line throwing stones and returning with wet feet and wellies. A different life from some but for us the 'norm'; it is still the 'norm' in our family, we now have four grandchildren who love to run on the downs etc. I am quite happy to sit in/out of the car in a scenic spot and people watch and read. I have almost as much to tell them as they have to tell me on their return. Because I have had the time and patience, I also did a degree in Social Sciences, I don't think I would have achieved that, your interests and capabilities change; it is a matter of finding your interest.

I do feel for you and hope it gets easier, your medication kicks in. Take Care.

Bully915 profile image
Bully915

Hi Bumpkin 13

I was diagnosed 7 years ago and was depressed then and suffering from ptsd and recently feel the same depressed not ptsd this time so fatigued its unbelievable .

MusicIsMagic profile image
MusicIsMagic

I'm reluctant to share this, but I know prescription stimulants can help. People with narcolepsy take them, it seems fair to allow them for other diseases. BUT, they have side effects and can create other problems so it must be carefully managed by your doctor.

I spend a lot of time playing on my phone, and treat myself to Starbucks between chores and errands just because...well RA.

Happy5 profile image
Happy5

No Bumpkin you're not alone as you can see from the replies.

Research shows "Chronic Fatigue" is a recognised symptom in RA, as is depression.

Depression didn't hit me seriously till 4 years into my RA, I used antidepressants till

I felt better.

With this recent bout of depression accessed one to one talk support by phone.

Was sent a practical book about pain management which helped me cope mentally too.

I feel when diagnosed with RA we go through a type of grief or loss,

We stop being the active, healthy, positive person and become unable to cope

with the most simple things, physically and mentally.

Even things like going from wearing heeled shoes to wearing flatties is sad at times :(

So access all aspects of support offered to help you get through each day.

Sometimes getting through is a day in bed and explaining to loved ones round you

have to to cope.

It's massively hard on ones rounds us understanding why we changed so much.

Giving them easy to understand info helps them to help us.

Hang in good times will return.

Monkeysmum profile image
Monkeysmum

Hi Bumpkin, I was diagnosed in June 2018, so I’m at a similar stage to you, still trying to find the right combination of meds and coming to terms with the new me and my new limits. The problem is they seem to change on a weekly basis!

As others have said above, I think this really is a grieving process, made even more complicated by the constant rollercoaster of emotions as we first come to terms with diagnosis, then place our hope in new meds, only for them to fail to be the ‘miracle’ we were looking for and start all over again!

I just wanted to add that recently in times of low mood, it has helped me to look back over the last 18 months and realise that my mood definitely goes down when my symptoms flare up. I’m not sure if there is a chemical reason for this or just that it is natural that when we are in more pain our mood is lower. Anyway, it gives me some comfort to realise that as I come out the other side of a flare, my mood will improve.

Also as Drose has highlighted above, there can be other contributing factors which may be affecting your mood, such as medication side effects and vitamin deficiencies and it may be worth exploring these. Recent blood tests have shown that I am low in both vitamin D and B12, and I understand both of those can lead to low mood.

And when all else fails, just log onto here and access the virtual hugs!!

Castroll profile image
Castroll

Hi bumpkin13

I feel for you, I to was diagnosed recently Dec 2018, I do feel like part of who I was has gone, like I used to be so spontaneous, but now everything has to be planned, which I am still trying to get to grips with, like all the lovely comments posted, we all have found different ways of coping, find your own pace, and try and think positively. I find reading everyone posting here gives me the boost and strength I need when I am a bit down, as everyone here understand what you are going through.

Take care everyone and keep smiling🤗

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