HellO! I was diagnosed with Rheumatoid arthritis during lockdown! My arm became disabled and I could not eat and move my right arm… due to lockdown it deteriorated and so I had to have key hold surgery to remove inflammation…
I am struggling with appetite! I can’t eat! And I’m tired everyday … any help would be much appreciated as I also suffer from extreme low mood.
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The best way forward is to find a drug which eases your symptoms. It can take a while to find your ‘magic pill’. Many of us find our fatigue and mental health improves if disease under control. I think you might want to have a chat with your rheumatologist. General anaesthetic makes my mood low. NRAS has a book/download called ‘Fatigue Matters’.
Thank you 
Hi Shireen, I am so sorry to hear about your experience during lockdown - that was really bad luck. Lockdown was an isolating experience with being ill too! I was diagnosed about 12 years ago and so now I’m an old hand I guess. I think certainly early on the tiredness is quite shocking. I still think it’s one of the most debilitating symptoms of RA. I also have an under active thyroid disease and so had had some experience of the terrible tiredness. I never experienced not being able to eat and so I’ll leave a a that for others to advise you. Good luck.
It does get easier as your disease becomes under control. Have you started any treatments yet? I’ve just had my two main treatments tonight weekly Methotrexate and fortnightly Idacio. Three weeks ago I had a knee replacement and so this is my first injection after that as I was advised to stop the Idacio until after the operation. I was actually looking forward to it as I know it helps me! When I was diagnosed the thought of injections was difficult but they really have given me my life back and made me feel normal (as normal as I’ll ever be!)again.
I hope you have good support at home but if not this website is also good for support too. Keep fighting and you’ll find the right treatment for you. Make sure you are very honest about your aches and pains and your feelings with your rheumatology department as they can’t help if they don’t know you are suffering. Don’t be scared to ask for help in between appointments either. Most Rheumatology departments have a telephone helpline nowadays and I hope yours has. I now have really good treatment but it hasn’t always been like that. Join NRAS as they have excellent information for you at the start of your journey. There may be an NRAS group nearby too and they give excellent help via their helpline too. I hope you feel much better very soon. C
Hi Crinkle! Thank you very much for your feedback and sorry to hear of your symptoms! It sounds like you are having your own battle too! How comes you had to have a knee replacement? Apparently I need an elbow but I have to wait as I’m only in 30’s and they want hold off!
I am on methertrexate and they put me on 20mg and then I lowered it but I can’t handle it… I have asked for the injection as think this might help with my sickness and perhaps I can eat again. What is Idacio?
I am constantly in touch with my doctor and emailing them often as my mental health is deteriorating and I’m feeling rather low. I just want to eat more … as if I don’t eat I’m tired!
Thanks for your advice x
Shireen has your rheumy prescribed folic acid too? If not it’s worth giving them a call to tell them how you are feeling, not being able to eat isn’t something you should put up with. Let us know how you get on. 🤗
Ask for an anti-emetic. I take cyclizine (?) an hour before my Mx. I had nausea for a few years before this was even suggested 🙄. I also take folic 6 days a wk (not Mx day).
My RA doctor literally gave me that on prescription I’m going to get it tomorrow! They don’t tell you anything these days! How are you feeling now? Has the sickness gone away x
Yep. Works, but tastes horrible, so put it at the back of your tongue.. Also. Make sure you take your Mx with a ‘big meal’ as this makes a difference. I take mine at teatime.
Hi Shireen, I am much older than you - 75 next week. My knee was destroyed by osteoarthritis and made worse by RA. That’s quite common in the older age group. My new knee is already so much better and I do feel better today.
Idacio is one of the biologic drugs available to us. It works for me as does Methotrexate. You may be offer this type of drugs at some point. I do remember when I first took Methotrexate it took a full 12 weeks before I felt better. Hang on in there and that will most likely happen.
Tiredness is part of the actual disease of RA and so even if you can eat you may find that you still feel tired. Sorry to say that but it is true. NRAS have a leaflet about fatigue and RA. That may help you to realise you are not alone. I always find that information is power.
If you can distract yourself doing stuff you like doing it’ll help. Binge watch tv or whatever takes your fancy. You certainly deserve any treats you can have with all the pain you are feeling. Life really is not hopeless and you will feel better. I hope you get some relief very soon. I’m glad you are getting good medical help. Take good care of yourself. C
Hi Crinkle - thank you for your feedback and your message means a lot 🤗I am sorry to hear of your knee and wow you are one strong lady I’m glad you are feeling better now and I have been told I need an elbow replacement when I’m older so I will deal with that when it comes x
I’m glad I have done my partying days! I have no energy and I’m struggling to work a 9-5 job! I’m hoping things will get better!
Thank you 😊 And you Crinkle!
Hello Shireen, So sorry to hear about your experience. I also have RA and this time last year completely lost my appetite, I was unable to sleep and feeling very low. I was diagnosed by my GP with depression and anxiety. I found medication (citalopram) and counselling really helped me.
The NRAS helpline has also been a great help at my lowest points. Might be worth a call?
I very much hope you feel a bit better soon, there is light at the end of the tunnel!
Hi Katie! Thanks for your reply! Sorry to hear of your symptoms and I’m glad you’ve managed to find a way.
I have always had low mood but it has got worse due to not eating etc! How did you get your appetite back?
I think when I go to the gym and walk this helps me … but again it is up and down!
This can happen but also mood can affect your eating habits too so like the others have said worth speaking to someone. I also find I have waves of not wanting certain foods or taste of food has changed and can hardly taste anything so this puts me off eating too.It's trying to work out what makes you feel good. Homemade smoothies packed with fruit or veggies is a good one to sometimes get the taste buds going.
Thank you Deeb! I have takeaway food sometimes as nothing at home is satisfying and I don’t like to cook much! Going to the gym helps so I will keep this up and I am trying to get counselling x
There are medications that can stimulate appetite. Also ginger, fennel and coriander are good. Perhaps try some ginger herbal tea before you want to eat. Also eat smaller more frequent portions, but include protein. Things like soup or scrambled egg would be good choices for giving you nutrients without leaving you feeling too full. Also try and do some gentle exercise prior to meal times, perhaps a walk round the block. You can also get supplement drinks in both savoury or sweet, as well as little desserts that have all the nourishment of a full meal, which may be handy to have for worse days.Fatigue is the one symptom even specialists find difficult to treat unfortunately. Try and keep to a regular sleep pattern re time and winding down. If pain keeps you awake amitriptyline is a good choice to take at bedtime, easing pain and improves sleep. Is your rheumatologist aware of your surgery, if not I’d tell them, as it sounds like you have adhesions resulting in worsening stiffness, so you may benefit from physio to prevent similar issue with other joints. Hope your surgery goes well, take care 🤗
Hi Maureen!
Thank you so much for your advice as this is so helpful! My RA doctor said she would I am trying to eat small frequent meals when I can as I can’t seem to eat full meals. I hate being slim and desperate to put on weight so I am going to try and eat more eggs and have protein shakes … I have always gone to the gym regularly for my depression so I will keep this up and I also agree with walking/exercising!
I have got ginger and will be making smoothies to give me more energy as I know this helps with sickness.
Re surgery- I thought I had a gym injury and initially got assessed in another department, however they quickly found out that I had RA due to blood tests.
Thank you 😊 x
Sounds like you are doing the right things. I buy some crystallised ginger as I have adrenal insufficiency and get nausea whenever I’m exposed to good or bad stress, as my body doesn’t produce cortisol. I’ve found it very good at easing the nausea. Wish you well, but you are doing all the right things. I was a nurse for 34yrs, and these are some of the tips we found helped our patients. Take care 🤗
Hi Shireen
Hi Shireen get some help with the low mood from your GP also try ENSURE drink around 3OO calories things do get better takes time
Thank you 😊 I will try that! Hope so
Hello Shireen, you are having a tough time and can do with some help. Calling the NRAS help line 08002987650 might be a good thing to do.Having to deal with fatigue is sometimes just too difficult on your own. I wish you all the best.
Thank you 😊
Hi. My fatigue used to be quite ridiculous. I take Amitriptyline now, 20mg at 7pm and sleep really soundly. It is an anti-depressant also, so maybe give that a go. I have also put on weight with it, if that helps you too x
Hello Crip lady!
Many thanks ! I will try anything to put on weight as I hate being slim! And I suffer from depression too so it will help - I will speak to my pharmacist/doctor tomorrow x thanks again
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