Struggling emotionally with flare ups.

Posted , 10 users are following.

I was diagnosed with RA in 2010 and initially devasted but got my head around it and moved on. Hate taking the medication but resigned to it. I was very lucky for 7 years in that I remained relatively well. Not always sure if I am prescribed the best medication or the cheapest.

Over last year I have had several flare ups causing chronic fatigue and awful pain. Just getting over biggest one yet with viral infection which has floored me, left me in bed for 2 weeks crying every day and unable to enjoy the two weeks leave I took from work to spend with my son. I have been through every emotion possible- anger about having this bloody illness, anger about what it is doing to me, how it is affecting my relationships, frustration, sadness, fear about the future etc etc etc.

I know that lots of people are facing much more serious issues andcchallenges. I have a lot to be grateful for. My problem has been that I have always focused on being positive and never complaining or sharing these feelings. Just had enough this week and needed somewhere to let it out. Saying that I have arranged to have acupuncture and start Yoga. Will start CBT if I continued to feel low.

Has anyone else felt like this and what has helped?

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15 Replies

  • Posted

    Shabina I want you to stop comparing yourself to others and coming to the conclusion that they're worse off than you. Who cares how the other people are doing, what matters is how you are doing. When we use a measuring stick of other people and their aches and pains it only makes you feeling guilty for your emotions when you have a flare or are just simply not feeling well.

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  • Posted

    Hi Shabina, I can relate to your post whole heartedly, in fact during my last flare up I could (and probably did) have written it. When I was at my worst physically I was at rock bottom emotionally and this seems to be a common occurrence. When I couldn't function or do the simplest of things I was lucky to have great support from family members, I'm normally a really independent person and it took me a while to accept the help I obviously needed. I hope you have someone to lean on both physically and emotionally. I started yoga after my last flare up ended and I love it, it teaches you how to breathe about mindfulness and relaxation. Your not alone in feeling like you do, never give up and accept any help family or friends offer. Take care. G.

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  • Posted

    Hello

    I and probably most of the other RA sufferers on here both sympathise and totally understand you. Dont worry your positivity will return if if hasnt allready, because it has to. You sound a strong person but even with the strength of character now and again our mask's slip and the hidden pain and anguish are on show. I'm not going to say just keep going and keep fighting because i dont need to, you allready know and theres no choice anyways. Good luck to you.

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  • Posted

    I feel for you. I have always had a tendency toward depression, and at the peak of the onset of my RA I was wondering about my “exit” options.

    I had some months of prednisone then, which massively helped with physical relief - and also had me tending to some euphoric/manic moods. Nothing drastic, just a little over the top and with lowered social inhibitions. If you are physically that bad, perhaps you should ask and be open about your emotional state too, they’ll want you to be aware of more emotional extremes.

    I have found meditation/mindfulness practices help, and keeping at gentle activity like water based exercise gave me hope that I wasn’t going to end up weakened and unfit and on a downward physical spiral into disability. 

    Go for it with the CBT. 

    I can imagine that there are so many of us who have massive understanding and sympathy for your state of mind. 

    Very best wishes - go easy on yourself.

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  • Posted

    Hi to all of you who sent a reply. Thank you so much for your advice and support. I am encouraged and will put in place suggestions including returning to doing Chi Gong and attending mindfulness meditation.

    Form reading other posts on this forum, I am also left wondering about my current treatment and whether there are other meds including biotics that might make a difference. I need to research what is available and ask my rheumatologist about this.

    Thanks all. Much appreciated 😊

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    • Posted

      Hi Shabina, you sounded so sad in your first post I think we all feel for you because I suspect most of us have been there. I know I have and it’s horrible but you WILL improve, honest.  Was it Blair that mentioned steroids? They might be something to consider in the short term?  If you feel better physically it can lift your mood which can in turn improve your physical symptoms.  Similarly, when you’re in pain and discomfort you feel down which doesn’t help you cope with the pain.  Plus, you want to do things with your (little?) boy. I can only imagine how you’re feeling.  As I said it WILL improve. I hope it doesn’t take too long and talk to your doctor/ Rheumy.  Good luck. Carol x
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    • Posted

      Thanks Carol,

      I do feel better today despite pain in ankles and hands mainly right side. I have been focuding on self love and being compassionate to myself and my body. I have appointment tomorrow to discuss steroid injection. I really appreciated your support and advice.

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  • Posted

    You are not alone Shabina in having flare ups, I think we all know how you feel. Despite all the modern drugs it is as if the condition 'breaks through' the shield to remind us it is still there and fighting back. I find that my temperature will suddenly drop as well which makes the pain worse somehow as it's not easy to be strong when you are sitting there wrapped in a blanket when the rest of the family say how warm they are! Try and stay positive and remind yourself that the bad days will pass and you will feel better and more able to cope, Good Luck.

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  • Posted

    Thanks Carol and Chris.

    I do feel better today both physically and emotionally. I am going to look into biologics and CBD oil more. Plan to go out for lunch with my son which is always great. Hope you have good days too.

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  • Posted

    Hi shabina

    I think a lot of RA sufferes can relate to your everyday challenges. I too have RA and your story sounds like mine. 

    I think the most frustrating thing is when I do have a flare up. I try to explain to my friends and family I’m able to do certain things. I feel they automatically judge and think “here she goes again, whinging”. As they can’t see the fatigue or pain. I have already had a bone taken out of my hand, caused from the RA. The X-ray I had for my hand proved my pain. “I can’t walk with a X-ray machine showing proof of my disease” Oh I wish I could... 

    Last week I had a severe flare up and couldn’t lift my shoulder. I was unable to drive or do the simplest of tasks, as the pain was excruciating. My husband at times is supportive. However, he only has a one week window for anyone been sick. After that you have to get on with life. Therefore, it helps me when I read other peoples stories, as I see this isn’t in my head. 

    It sounds like you are trying and been positive. I have been told RA can go into remission. I have that hope it could happen and it might happen to you too. 

    All the best 

    Lynn 

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    • Posted

      Hi Lynn,

      Thank you for your post and I hope you are well. My worst ever flare up over Easter was really difficult both emotionally and physically. I am much better now but being so unwell has had a positive effect in that I am much more compassionate and kind to myself. I was, for eight years in a level of denial and anger about having RA and therefore not proactive in exploring it or how to manage it. Communicating with other people with RA has been of the biggest support. I am much better now at resting and letting others know how I feel. I am more 'needy' and have to name my needs e.g. I can't get up or down the stairs, I can't work late etc.

      It is a journey and at times a very challenging one but there are lots of positives. I have lots of appointments coming up for hand therapy, physiotherapy, dry eyes etc so it will be good to explore further treatment.

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    • Posted

      Hi shabina 

      I certainly can relate to everything you are saying regarding living with RA. 

      Once I drove myself to the emergency department,  because I could hardly walk and the pain was unbearable. They gave me pills and still no relief. I ended up having morphine and that took the edge off it.  I really don’t want anymore drugs in myself, I feel like I’m poisoning my body. That was 2years ago and since then I have got a lot better. 

      I now can feel when I’m about to get a flare up. I wonder what is my immune system attacking now, and that terrifies me. I’m really scared it is attacking my organs. I had a heart attack last year and thought it must been caused by my RA. As, I don’t fit into the category for a heart attack. For example,  50 years old I only weigh 58 kilos don’t smoke and definitely do not have high cholesterol. The doctors were unsure if it was my RA or stress. Great another thing to worry about. 

      Then I became angry I had this disease, especially because I felt so weak and then Im made to put poison back into my body. I was furious with everyone and everything. So I decided I will stop my medication. Until I saw my specialist and he advised me this would be worse for my body. Now I’m back to having my injections once a week and things have improved. 

      I’m so sick of complaining to my family and I’m sure they are sick of hearing it. It’s hard to describe what it is like to someone that doesn’t live with RA. One thing I do get annoyed with, is some people thinking it is old age. Then I feel like I have to explain all about RA. “This can happen to young or old and it is a autoimmune disease”  Because it has arthritis in it they automatically think it is wear and tear with age and they too have RA. I know I shouldn’t get angry but that does bug me. As they don’t know what RA is like unless they too have this disease. 

      Anyway less of my issues. You seem definitely on the right road. Well done for been positive. Reading your post makes me feel like I should start becoming more active too getting better. 

      I agree reading other people stories does help you with your own struggles. 

        

      Sorry for late reply too

      X

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    • Posted

      Hi Lynne,

      Sorry for delay in my response and thanks for your post. So sorry to hear about the challenges you have had and are going through.

      I guess I am realising that I need to enjoy the good days and be kind to my self on the so so and bad days.

      Sending you warm regards and a big hug.

      Shabina

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  • Posted

    I get depressed so much with ra, I think it's normal to feel this way my husband massages my hands all the time for me he is my rock thankful for him bc i have been ready to just give up. talk to dr maybe you need differnt meds my dr says ra flares with differnt seasons good luck

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    • Posted

      Hi Elizabeth,

      Thanks for your message and advice. I am on a journey with RA and the road can be bumpy and tough but there are smooth and manageable parts.

      Like you I am blessed to have a lovely husband and gorgeous on, sisters and dear friends who love and support me.

      I am learning a great deal about me and my body, meds, treatment, alternative healing such as herbs, yoga, meditation and what does and does not work. Self care and self love is a difficult but essential aspect.

      I wish you and everyone else on this forum well and thank you all for your support. 😊😚💪🏼?

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