Fatigue - a major symptom of RA?

judyw5
judyw5 Member Posts: 18
edited 4. Jun 2015, 10:46 in Living with Arthritis archive
Hello Everyone,
I have recently joined the forum and and in among the posts that people sent to welcome me, there were some comments about fatigue which I found helpful and I thought others might too. Hence this new thread.
(The whole conversation can be viewed under Say Hello - Hi Everyone)

My own situation is that I was diagnosed with RA a few months ago and put immediately onto hydrochloriquin which was very effective for the stiffness and pain. I had assumed that the fatigue I was experiencing was to do with the pain and so I expected it to receed when the pain did. Ha! No way! The fatigue has steadily increased along with bouts of fever which leave me feeling ill and not a little depressed. I can only describe the fatigue as 'viscious'.

The encouraging things from your posts so far are that many people with RA ( and some with OA) experience high levels of fatigue and that , being on the right medication so that the disease is being managed well, also helps to bring the fatigue under control. Phew! So I am on the road now of the specialist finding the right second medication to bring things under control.

I came across a few points in my research on Fatigue and RA which I will mention here.

The Arthritis Research booklet on fatigue looks helpful.

There had been some recent research done on patients' experiences of the Rheumatology Team in relation to fatigue as a symptom - specialists seem not to ask about fatigue on the whole where as rheumatology nurses are more likely to ask about energy levels. (Can't remember where I picked this up. Will post a link if I find it)

Arthritis Research are now encouraging research into the effect that various drugs for RA have on fatigue as a symptom of the disease. (From their website).

So it maybe that fatigue (though difficult to measure) is being increasingly recognised as a major symptom of RA.

Hope these comments are helpful.

Blessings

J.

Comments

  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Hello again, Judy. Even when I was first diagnosed, over 50 years ago, fatigue was acknowledged as a big part of an inflammatory arthritis, so much so that my doc advised me only to go into school when I actually had an O-level exam (It was that time of year) and to stay in bed the rest of the time. There are loads of posts about fatigue on here:

    http://arthritiscareforum.org.uk/search.php?keywords=fatigue&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search

    But, maybe the most helpful is this 'letter' which was originally on someone's Facebook page. It's not just about fatigue but about the whole kit and kaboodle of dealing with an inflammatory form of arthritis.

    Dear Everyone,

    This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.

    I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?

    If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

    I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

    Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.

    Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. 

    If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.

    I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.

    Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.

    Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.

    Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same.  I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.

    Thanks for listening.
    With love
    Me xxx
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    To my way of thinking fatigue is not a symptom, it's an effect of the disease. Our bodies are fighting inflammation, pain and stiffness; when you have a creaky foot in both arthritic camps (as many of us do) it can lead a double whammy of tiredness. I can tell the difference between my PsA fatigue and the OA version. I'm currently going through a good patch in that I have something resembling energy but I know it won't last, it never does.

    Fatigue is a recurrent theme on here especially amongst the newly-diagnosed. There have been many threads about it but the search facility on here is not that efficient (I think it reflects its users' difficulties :wink: ). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • judyw5
    judyw5 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thank you both for your gentle chiding :) I realise I didn't search properly for "fatigue" but only skimmed through the titles of the threads. So thankyou for the link which I will follow up. I think I was slightly into reaction about the fact that neither of the consultants I saw nor my rheumatology nurse mentioned the fact that it could be a problem, so it's strength and continuing presence was a bit of a shock.

    I think friends and family who don't know about RA are probably as ignorant as I was and so thank you too for the lovely letter which sums it all up so well and helps to highlight the fact that effects of this are so unpredicable!

    Feeling quite good today and the nurse saw the specialist and they have put me on sulfasalazine instead of hydroxychroliquin. So we will see how this goes. Apparently the OT's at the hospital run support groups so the nurse has refered me to them for some support too.

    Blessings

    J
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Please don't blame yourself for not looking thoroughly. The search engine on this site is not very good though its value is that it does show, on the left side of results, official AC info. What I tend to find more useful though is the little blue search facility (where it says 'Register    Login    Forum    Search    FAQ' above. That will bring up any former threads that use the word.

    Fatigue is definitely a big factor but I guess, from the rheumatologists' point of view, it's not particularly helpful to them in deciding what to do with us.

    I hope the sulph works for you but it may take some weeks. Most of the meds do :roll:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I didn't mean to chide, I apologise if it seemed that way. :oops: The medics assume we know more than we do because they know more than we do and assume everyone knows what they know - I think that's true of all professions, I know I was guilty of that more than once when I was tutoring dyslexics. Nothing can be done as such to ease the fatigue but the right combination of meds may make things easier. Hydroxy is a very mild DMARD, sulph is a little stronger but you may find other meds being added into the mix. Auto-immune arthritis is a strong disease and it needs the strong meds to subdue its activity. Despite my triple therapy my PsA will occasionally have a bite at me (it has been active over the past three months ) but I've come out the other side and am feeling generally more awake and, well, not exactly energised but more able to do things. I'm still in bed by 9 however, I am far from being a Duracell bunny. :roll:

    Taking sulph qualifies you for a free 'flu jab come the autumn so please ensure your GP knows you are on this medication so you are included on their list. All the meds for auto-immune arthritis subdue the immune system so it's time to increase your hand hygiene, encourage family members to improve theirs and to avoid people who are ill; we are slow to produce symptoms so infections can get a good hold on us before we are aware that we're extra poorly. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • juliep123
    juliep123 Member Posts: 40
    edited 30. Nov -1, 00:00
    I actually find the fatigue one of the worst symptoms of RA but I am rarely asked about it by my rheumatologist . At least if you have pain you can take something for it, when I suffer fatigue there is nothing that I can do but rest. I think one of the things that you learn early on with arthritis is how to pace yourself.
    I see DD has mentioned getting a flu jab- I was also advised to have a pneumonia jab.
    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    As fatigue is an effect there is little they can do, I think it's tacitly accepted as an on-going issue which is very hard to tackle. apart from resting as and when we need (and even when we don't think we need). I sometimes wonder if we expect too much of our doctors and what we think they should be asking of us; when we see them it's a one-to-one for a short while so memorable for us, especially if we haven't seen them for a while, but from their side of the table we may be the first (or the last or somewhere in-between) of a day of one-to-ones of patients they haven't seen for some time. I am sure that faces begin to meld into one and why wouldn't they? They are human and humans are fallible.

    I take a list of issues I want to discuss - they may or may not be relevant but I am not the one to determine that. Over my years I've learned a fair bit about my conditions and how to live with them, sometimes I can be guilty of putting up with something which is un-necessarily difficult because I am used to things being difficult but I do not expect my rheumatologist to divine through the ether what's bothering me. Since my hospital 'improved' their patient services in rheumatology I'm lucky to see her once a year so all the more reason for me to ask the questions. :) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Jaclyncollin
    Jaclyncollin Bots Posts: 36
    edited 30. Nov -1, 00:00
    juliep123 wrote:
    I actually find the fatigue one of the worst symptoms of RA but I am rarely asked about it by my rheumatologist .
    x

    I absolutely agree here. Even my rheumy always underrated my complaint of fatigue in every appointment of my early days. That's because fatigue is not something you can put your finger on. In fact, i am sure there will be many like me who do not discuss anymore about fatigue with their healthcare professionals because they feel it is dismissed or they simply accept fatigue as being part of the disease. Now, over the period, I have trained my mind to allow this level of fatigue and no more try to control or predict it. Since I don’t work full time, I can afford to rest when I have flare. It’s important to learn act of ignoring the other people’s responses like “you’re nothing but a lazy fellow” or “I am tired too”
    Someone mentioned here on forum a great idea of slippage list. It also seems to be one of the best self-management strategies in this regards.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Judy,

    I think like you fatigue for me is one of the most frustrating elements of RA. The pain can to some extent be dealt with in terms of pain relief of one kind or another, but the fatigue is fairly relentless. I can start the day feeling ok, go out with my hubby for a walk and suddenly hit the brick wall of fatigue which makes it a huge effort just to put one foot in front of the other....indeed I have been known just to stop and send him for the car because I simply can't get to it.

    You may well find yourself on 2 or 3 different DMARDs together as time goes on, research has shown that this is often a more effective way of treating the disease, which whilst it isn't curable, can be held in check to enable us to live full lives. I currently take hydroxy-chloroquine, sulphasalazine and methotrexate...they sometimes mess with my stomach but I am relatively stable on them, and the fatigue is better since the meds were sorted. I think it's also true that sometimes meds which have given us relief can become less effective ,maybe because our bodies get used to them, and then newer drugs can be tried. Unfortunately for me the RA had given me lung damage so I am unable to take the newer more effective drugs, but's tthat's life so I just thank heaven that I live in an age when there are so many options, unlike my grandma who was crippled with RA at my age and had a horrendous side effects from the aspirin which was her only option.

    Hope your meds get sorted, and that the OT helps too, in my experience they offer lots of support and good advice.

    Deb x
  • judyw5
    judyw5 Member Posts: 18
    edited 30. Nov -1, 00:00
    Everyone, thanks for you information and suggestions and just for responding so that we are not alone in this.
    Feeling somewhat better fatigue wise though it's a bit early for the sulphasalazine to be making a difference yet. I understand it can take up to 3 months. But no side effects so far so that is great. The depression seems to come in short bursts and definitely seems to be physically triggered and based. It helps to recognise that. There can be no change in circumstances but suddenly everything feels too much then two days later it is fine! It reminds me a bit of PMT which was again purely physical. Anyway the black dog is back in his kennel for now.

    Read an interesting piece on dealing with grief recently. Firstly don't Personalise it, I.e. it is not your fault that you feel like this. Secondly don't think of your present emotional state as Permanent, it will get better than it is right now. Thirdly don't let it Permeate everthing you do and/or think about, try to compartmentalise a bit so that you have some time, some interests that are absorbing and not grief related.
    So not Personalise, not Permanent and not Permeating everthing. I found that helpful if rather challenging (particularly the first bit which was a surprise) and I suppose too that for all of us a diagnosis of arthritis involves a sense of loss, greater for some than for others.

    Blessings

    Judy