Struggling with tiredness: Hi, I am new to the group... - NRAS

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Struggling with tiredness

Hi, I am new to the group. I am currently on Methotroxate and thankfully this appears to keep flare ups at bay so I am incredibly lucky. However, one of the things I really suffer with is tiredness. I have spoken to my consultant about it and he was very unsympathetic telling me that RA doesn't affect you in that way. Does anyone else suffer with the same and if so, how do you help yourself. I am nearly 55 years old. I eat a well balanced diet, regularly walk our dog and try to look after myself the best I can. Someone suggested Enchinacea to help with low immune system but when I looked into it, it says that you have to be careful which ones you buy as some are useless. I have been off work now for two weeks with a respiratory tract infection and have spent most of that time sleeping. If anyone suffers with anything similar please help as this is really getting me down. Thank you for reading my post.

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I feel the same !! Definitely more tired! I was told RA causes this as so do the meds x I am just getting over a cold and I get so unwell even with a cold and it affects my chest every time x I was so healthy up to 55 now I’m on so many meds !!! Thank god for this site it keeps me sane xxx Make sure if your body is saying rest then you must xxxx

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Thank you Doughnut61 for the advice. I'm also on Lisprinol for blood pressure and going through the menopause so there are other factors. Very much looking forward to the weather changing and getting the spring back in my step x

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Elaine. Fatigue is very common with RA. You have a chronic illness causing pain that is wearing, plus anaemia is a very common symptom. A side-effect of the body's immune system constantly fighting a battle; ie attacking one's joints. Anaemia makes you sleepy, it means you have less energy and feel worn out all of the time. I was severely anaemic and the nurses just dismissed it saying tiredness is "normal" when anaemic. When I was put on Humira, my fatigue/sleepiness improved with 1-2 weeks. I'm only tired now for normal reasons.

As for Echinacea, I have no idea if it works or even why it could work. I a very sceptical of these alternative-type reatments. Snake-oil probably, I suspect.

Hope this helps.

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Hi hawker955 thank you for replying. I was on ferrous sulphate for the anaemia but my GP took me off them after a while. I will make an appointment and suggest a blood test. Since being ill I have been sleeping 14 hours a day!! I had a similar experience in January 2017 and was off work for 3 weeks.

I think they suggested Echinacea to help with my low immune system hoping that it would keep illnesses at bay?

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Please don't. RA means you have an over-active immune system so the absolute last thing you want to do is boost it! Yes make sure you have good nutrition and so on to keep you as healthy as you can be, but echinacea is contraindicated.

Methotrexate has a very small effect on the overall immune system, it compromises it rather than suppresses it. But the way I see it is since your system was over-active it's probably only taken it back to "normal".

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Beware of iron. If your diet is okay you will not have iron-deficiency anaemia but our anaemia is a side effect of the inflammation on our bone marrow. Extra iron is associated with heart attacks as shown by both American research and Japanese work done in the 1990s. Men who donate blood regularly have he same heart-attack rate as young women. This was their first clue to trigger the research. Excess iron is dangerous for various reasons.

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You should have blood tests every 3 months if you are on Methotrexate and one of these is for anaemia. I too get fatigued, but try to soldier on, Some days though I know it's hopeless and give up and have a duvet day, sometimes 3. Luckily 'though I have retired. I am on Methotrexate and now Benepali too. Would love advice on how to manage fatigue better.

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Hi vonniesims, I have blood test every 2 months. Maybe that is why my GP took me off of iron tablets as I didn't need them? I would like to know how too as I work and it is frowned upon being off sick :(

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I'm cream crackered all the time. I reckon it's the illness itself, combined with the meds.

Do get bloods checked for deficiencies though. I was anaemic for ages before anyone bothered to tell me! Was put on iron tablets. Came off them as soon as iron improved.

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Fatigue is a recognised part of RD; don't understand why your consultant would say that. My rheumatology dept actually run courses on fatigue for patients. X

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That sounds really good. If they did courses in my area I would definitely go.

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Tiredness is a very big issue with RA. It a well known fact. Your consultant isn’t very helpful !

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Hi there, I find fatigue to be my main issue with RA. Firstly, the meds take a while to make any difference. I’ve been taking Plaquenil for 6 weeks, and I’m only just starting to see some benefit. The other cause of fatigue is depression, which is entirely understandable, and is something I suffer from myself. The fatigue (or what I call the “can’t be bothereds”) from depression is very similar to that from RA.

An RA diagnosis, with the illness, plus lack of certainty of meds working can certainly lead to depression. Usually with depression, the prescription for lifting low mood is exercise etc, but the RA can make that difficult, which leaves you in a Catch 22 type situation.

Certainly, your Rheumy should understand that fatigue is a symptom of an auto immune disease, and therefore RA. You may want to change Rheumy if possible. I would certainly suggest some help from someone on the mental health side of things. There is no shame, it’s awful feeling like you’re dragging yourself around the place and suffering from a complete lack of motivation and a body that’s won’t comply.

Hope this helps, cheers Deb

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Thank you. I was really pissed off when I received his letter because it was different to what he said in the consultation. I am going to speak to him about it at the next consultation as he is going against everything I have read about RA.

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I was told to definitely avoid echinacea if taking methotrexate. Research it but be careful x

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Thank you

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I find that after the MTX injection on a Friday I have a very bad Saturday very tired and want to sleep all the time this gradually improves till the next Friday but MTX does make you tired. Blood tests are recommended on a monthly basis.

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With me I think that tiredness to the point where I slept all day every day was the first sign of having RA. I am not usually as bad as that these days but just at the moment, I am having a bout of it. For instance, yesterday, I slept all afternoon and then I couldn't even stay awake to watch a programme I wanted to see on TV in the evening. I have always been told that tiredness is part and parcel of RA and related illnesses. You shouldn't really need to ask for a blood test as you should be having them regularly anyway. I have to have them done every month because of being on methatrexate. Maybe you should query if you should be having regular blood tests with your doctor.

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After taking Plaquenil for 3 months it finally kicked in. Fatigue has improved tremendously as has brain fog. It took along time but plaquenil really helped.

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On MTX for a couple of years with increasing tiredness and also nausea. Found the best way of dealing with it was to divide my day up into 3 periods.

For one of these I could be active; for the second, it was possible to remain active and for the third I would sleep wrapped up in my rug. With one such active period daily I can continue almost indefinitely but for two or more, I need to pay back the time owed with a longer sleep the following or even subsequent days

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I like this idea and will certainly try it. I am fortunate as am retired so most of the time resting not too much of a problem for me. Thank you widgie.

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I must try that. Im so very tirex as have over done things. It was worth it tho as helping family. Pacing is my biggest challenge. Also just off steroids so down from that. I now am on payback. Interesting as we go away tomorrow with family and im supposed to be helping with grandchildren. Tomorrow is another day.

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Yes... pacing is my problem. Family lives far away so when they come they stay for several weeks .It's hard to be a fun grandmother to the grandchildren under such circumstances. Fortunately, my son understands and takes them all off on prolonged shopping expeditions

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Yes my family are very understandable, but I dont know about you it raises my frustration levels if I cant do things or need to rest. As I write my OH is making omlette for our tea. Hay ho. Cant change it so must embrace it but I am going to try 3 stages to the day. Enjoy your gchildren ☺

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Thanks Apropos husband. When I was in hospital 50 years ago He fed the 3 children on lettuce and gravy When I discharged myself, he said, in amazement' Why,they are too fat anyway'. Oh some men are so canny but fortunately he, too is on a medication regime which saps his energy so we can do nothing together much of the time. Strangely, life is good if you seek the advantages. Hope all goes well

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Well that is a new menu on me 🤣☺🤣 . Yes men are interesting with their dicisions. Food usually ok as my husband can cook.

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How things differ, my Consultant told me extreme tiredness is part & parcel of Rheumatoid. My Rhumy nurse has said pace yourself, when you feel really tired just take a rest. I am also on Methotrexate. Hope you feel better soon.

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Hi horneselaine - Absolutely your doc (with all due respect to the profession) is wrong. Pain and tiredness are the two primary symptoms after the inflammation is gotten under control, and it is very persistent. If you want to try any herbs, look for something similar to Rose Mountain Herbs here in the US that sell organic or wildcrafted products. I would go to a company that is large with an active turnover so you know they are fresh.

I would also look at your sleep quality. It helps if you get enough sleep and are able to sleep deeply. Best of luck there!

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Last year a blood test revealed I was Vitamin B12 depleted. This indicated why I was so low and constantly fatigued. For a Consultant to say this has nothing to do with RA indicates that he should not be drawing an NHS salary IMHO.

Ask for a Vitamin B12 blood test from your GP who can provide a course of B12 injections - first 6 in 3 weeks and thereafter quarterly for life.

Research Pernacious Anemia , common later in life, especially with an auto-immune inflammatory condition when the stomach fails to absorb enough B12 from digestion.

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Thank you. I work full-time and am unable to take rests during the day. The Vit B12 injections sounds good. I have never heard of Pernacious Anemia either so will definitely have a look, thank you again.

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Yes, B12injections help a little ( Have family history of pernicious anaemia) but they are not as restorative as I had hoped. Had been interested to read that in some parts of Europe the injections are 2 monthly and that is what I asked for. Oddly, the effect seems to take a while to kick in and then starts to diminish after a few weeks, so the 2 month regime would suit me better

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Unfortunately extreme fatigue is one of the most common and worst symptoms of RA. Your rheumatologist should know this.

I can’t give any help as I haven’t learnt to cope with it yet but I do try to pace myself. If one day is busy I try to do less the next day . Also I try to have a quieter day the day before any activity. I know it’s not easy , I have horses and look after them myself as much as I can but get help on the days I can’t. Good luck

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It said on the echinacea I bought that you shouldnt take it if you are taking methotrexate

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Had anyone mentioned Viramin D? Often goes with RD - mine was very low- felt much better after treatment. As others have said, fatigue is def part of this disease- I am off meds and totally exhausted still.

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I need to move to somewhere where the sun shines all day :)

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Hello. You might want to have a look at this article from NRAS nras.org.uk/invisible-disea... Your consultant is clearly clueless. My RA team always discusses fatigue with me and have had me keeping a sleep and activity diary to help me understand when and how I need to pace myself. I was also given a leaflet on managing fatigue. You can also download this booklet and present a copy to your consultant file:///C:/Users/mark/Downloads/2269-Fatigue-and-Arthritis-inc-excercise-book%20(1).pdf

Good luck and don't take any more of this nonsense

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