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Fatigue

Hi again. Still having a flare up but I’m worried because I feel so unwell. I just feel so weak and tired, almost like I’ve got flu but without the flu symptoms! My brain feels all fuzzy and just awful. My bloods haven’t changed ie still shows inflammation, still slightly anaemia etc. The only joint pain I have now is my feet. Do any of you feel weak when you’re glaring and do you think some prednisone would help? I’m waiting for a call back from Rheumy nurse. Thank you😞

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I sympathise with you, the fatigue a d brain fog are very difficult symptoms to deal with. It sounds as if your medication is not getting to grips with the RD. Prednisilone might give you a wee boost and some respite, which I am sure would be welcome, but not a long term answer.

Do make sure your rheumatology nurse understand that things are not improving for you and you are requesting something different to happen now.

Do let us know how you get on ?

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Hi there

I'm afraid I don't know about steroids - I assume they'll help but best to ask the nurse.

I just wanted to say that your symptoms sound exactly like mine when I feel at my very worst. Apart from the joint pain, sometimes I feel so very ill that I can't do anything at all but lie on the sofa. I find it hard to describe how bad I feel, it's that feeling of great debility that just engulfs me. I can't do a single thing, even listening to the radio is too taxing. I had it for years before I had joint symptoms and then had it very frequently when my RD was not well controlled.

Your description above is really helpful and I would now say that it's typical of a bad flare. I don't think you necessarily need excruciating joint pain to be having a bad flare - how you feel above is indicative of your body fighting systemic inflammation (IMO!)

When I wake up on days like this I know without even opening my eyes that there's something wrong. Fortunately I haven't had it for a year or so and now looking back I can see how ill I was, and how uncontrolled my RD was.

In my experience this feeling doesn't go on forever - it usually lasts a few days, maybe 5 or 6 at most. I don't know how lucky this is and whether other people suffer it long term.

What I'd say to you is to take it easy - well obviously, as you just have to don't you? I couldn't do a single thing. Drink lots, and get total rest, but keep moving when you can find the energy. Stand outside, get some fresh air and wind in your face.

Speak to the rheumy nurse about steroids. When you feel better and able to face the world again, have a think about the treatment you're getting and how often these episodes occur. Because there are no obvious symptoms - joint swelling, blood results etc, it can be hard for medics to appreciate how ill you are and you might have to make them aware of the actual effect it has on your life when you feel so bad.

Hope you feel better soon and thanks for your post

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Thank you, such a lovely response

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Sorry to hear your not feeling good and I do feel like that when flaring. I was awful last month and rheumy nurse put me on prednisilone for one month. It certainly done the trick and gave me a great boost. But if you are concerned a chat with your rheumatologist/gp would do no harm just in case an underlying infection is making you ill. We tend to blame our arthritis on everything so hope your feeling better soon.

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Chronic Fatigiue is normal during a flare, and is casued by the same mechanism that makes you tired and achey when you have flu (ie your immune system).

What made a huge difference for me, and still does, even though I am on a Biologic (Cosentyx) is a low lecting, low histamine diet.

I didn't know I had chronic fatigue until I tried thsi and literally woke up within 2 days. When I fall off the diet, the aches and tiredness and fuzzy head all return next day, lasts for up to 3 days

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Hi - whats a low lecting, low histamine diet ?

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Low lectin - here's some info mastcell360.com/what-to-eat...

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Fatigue is worse than the pain and stiffness for me. I have had fatigue for months only having a good day here or there. Had a steroid injection in March helped with the stiffness but the fatigue and flu like feeling is sill there the majority of the time. GP said my bloods show no inflammation so it’s not RA could be chronic fatigue syndrome but can’t test for that or it might be my statins so taking me off those. So basically he hasn’t a clue. Can’t get in to see my rheumatologist till August not sure what the rheummy nurse can do . I know just how you feel. Hate that I don’t even have the energy to even talk to my family.

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After 2 years of Drs not believing me , constantly being offered antidepressants and much fight back from myself I got a diagnosis of sero negative RD based on repeat MRI scans.

My presenting symptoms were fatigue and brain fog with a sore foot and localised swelling / redness.

The GP was and remains clueless to this day.

My daily journal and update letters eventually paid off as simply they could not ignore what I was saying anymore. Keep records and be strong, don't accept being robbed off.

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Thank you good to know it’s not just me. Would the rheummy nurse be able to help while waiting to see consultant?

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The nurse might be able to help, you could also ask them to arrange an earlier appointment. If not you could ask for help in the meantime being clear that you cannot continue as you are doing until July.

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Thanks will ring them now

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Try after 15 years of GP not believe me about cronic tiredness! He said it was depression & had me on so many different antidepressants all of which made me even MORE tired because I was NOT depressed! I was tired!! Come to find out after my hands blew up the size of baseball mitts he did a blood test to check for Lyme, & RA. Sure enough blood work showed RA! Probably had it the whole time & went diagnosed which is why today I have severe RA! Not the deformed joint kind, but the kind that no RA medication will stop the endless flares nonstop for months & months. Been on high does of prednisone for almost 7 months!!

That crap is now doing more harm than good! But because RA medication NOT working, doctor keeps me on it to stop the pain from the flares!!

Now on INFUSION (acterma) and still waiting for results!

What's next treatment if none of these RA drugs work on me?

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I'm sorry to hear you told were labelled depressed. Its shameful of the medical profession. But hopefully acterma will help you.

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Thank you for all your helpful and kind responses. I spoke to the nurse and she is going to email the consultant and get back to me tomorrow. I felt like crying and saying “I can’t wait for tomorrow, it’s so awful” but somehow it made me feel better when she said that an RA flare can make you feel this ill. Feel less like I’m losing the plot. This forum is great🙂

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I just went through a flare, a short course of tapering prednisone halted it.

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Hi there I have long periods of feeling so tired and joint pains etc etc.. limited on my RA medicine options due to another condition. I have had a steroid injection a few times into the ‘rear’ which really helps, I know not the solution but it gives you an option to see what it has helped with to know where you need to target and also clears your head to think a bit clearer on your next steps, which is very hard when you are so tired. Make a list before you have it and a few days and weeks after to compare it, maybe even score it issue by issue.

Best wishes

J

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I no how you feel I’ve being going through it last few days. I just make notes when I going through it and tell my nurse on my visit. I just wrap up and take it easier than normal til it passes me.

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I agree. Steroids in the short term are little miracles but bad beggars long term. You need to review your meds if you feel like this all the time. There are lots of different drugs out there. You might be better on different ones. It’s trial and error. I accept fatigue occasionally but for no more than 3 days at a time. I have an app on my phone called “weekly planner”. I think the ad free version was £0.99. I make brief notes in it so I can re-cap at appointments. Also great to remind me to do things and be places.. it’s a simple diary- uncomplicated! I have the most awful memory and between this and “Alexa” I am much more efficient. Good luck.

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Yeap. This past beautiful weekend, slept & slept & slept! Must have needed it bad.

Then Monday comes around and back to work!

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I had a really bad flare about two months ago and finally couldn’t take it anymorend asked for Prednisone. It worked in calming my pain but then I couldn’t sleep because the Prednisone had me all jazzed up. I have been better since and I stopped Enbrel and started Cosentyx which seems to be helping. Problem for me is when I call pain management and tell them that my pain has been uncontrollable and I had to use more pain medication they never change my script or give me a small script to fill the gap I will have so I end up suffering anyway. It’s so frustrating like my pain management Dr has no clue I have flares. Do the Prednisone I know it’s so hard to ask for anything sometimes as we all just want to be our old selves

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I just read this article about chronic pain and chronic fatigue and it addresses just how you (and me too) feel. So I guess it’s chronic fatigue as in the article it says it’s like recuperating after the flu. It mentioned mild antidepressant at bedtime. I’m thinking about that one. Best wishes.

everydayhealth.com/hs/rheum...

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