Fatigue. How much is normal?

PeonyFlowers
PeonyFlowers Member Posts: 3
edited 27. May 2019, 07:09 in Living with arthritis
Hiya

I've been diagnosed with RA, and have been on Methotrexate for about 6 months. I have no real pain and didn't before but I'm so fatigued, real crushing fatigue. I'm not tired, I'm broken. I just don't have the energy required to get through my life, and I've already cut every corner and asked for as much help as I can. I have young children and I want to enjoy my life with them, not just 'get through it'.

Is there anyone else out there with young children, how do you cope?

Are there other people out there feeling this tired?

Is RA and ME a common combination? Should I talk to my rheumatologist about the possibility of my having ME in addition to RA?

TIA

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi peonyflowers
    Welcome to the forum,I am so sorry that you are suffering at the moment with fatique with children that must be very frustrating. Everyone on this forum is friendly and understanding and will try and help in any way to make you feel part of the forum the most popular forums are Living with Arthritis and Chit Chat. It won't be long before someone replies to you. If you want to talk to some one please ring this number 0800 520 0520.
    All the best Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The first person to define normal should win every prize under the sun. My normal is different to everyone else's; many of them would not be able to learn to cope as I have been forced to thanks to ill-health from birth because they have no grounding in adapting their behaviours.

    I am lucky to be in the early days of my 23rd year of psoriatic arthritis, I also have osteoarthritis too which was diagnosed in 2011 but must have started a few years before: I use the term 'lucky' with irony :wink: Extreme fatigue is often a sign that auto-immune arthritis is not under proper control, what are your bloods showing? I have never been able to get by on just one medication to control my PsA and being tired is now a way of life but, as I say, I am much further down the creaky road than you and used to dealing with the meds and the general nonsense.

    I am also used to organising my life to cater towards coping with my health so I cannot envisage being in a situation such as yours. I think delegation is one way to go, also rest as much as you can. Over my years I have made many changes to how I do things - a simple household job might take me all day but it gets done in the end. I began with one affected joint, now it's around forty so I have learned to do a little, rest a little then do a little more. I've changed all our pots and pans, bought a steam generating iron, gone cordless with vacuums and am now considering changing our superking duvet to two singles for easier management of bed-changing and laundry. It also means he can return to a 13.5 tog and I can drop to a 2!

    I am very tired and my hands are giving up so I'm off. I hope that something I have typed has been of some use. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I immediately find myself wondering what your blood tests show. Pain isn't a reliable guide. We can feel good and still be told the meds aren't working and, similarly but more frustratingly, feel dreadful and be told the blood tests show the meds are doing their job. In your situation I'd want a close look at my CRP results.

    I'm also wondering how you came to be diagnosed with little or no pain.

    I think the combination of RA and ME is unlikely. Again, going back to the bloods, how are your iron levels? RA can deplete them.

    Kids are enough to exhaust the healthiest of parents but I think you need to sort out what your blood tests are showing and if your disease is flaring which would easily explain the fatigue. If so you might require more meds.
  • PeonyFlowers
    PeonyFlowers Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you for your responses.

    DD - I think you're right in that I need to get used to reorganising my life a bit more. It's just after work and the kids there's very little energy left over to spend on doing things I want to do, and I'm reluctant to give up 'my' things (not that there's a lot!)

    SW - sorry, my post was a little misleading about the lack of pain. Prior to my diagnosis of RA, I had Palindromic Rheumatism and Hydrodroxychloriquine as meds. So I guess the meds had the pain under control already. The RA was picked up during scans on my hands.

    My bloods have (annoyingly) always been fine with nothing even borderline. I'm always hoping that they'll come back with something minor and easily corrected! That said, I haven't asked about the CRP specifically so perhaps that's something I can do at the next appointment.

    I just find the fatigue, not only inconvenient, but also frustrating as no one around me expects it as a side effect of the RA so I need to explain a lot and it feels like I'm making excuses.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The meds have never done anything for me re. easing pain, you are fortunate on that front (although you won't be feeling that way inclined). Because blood test are so run-of-the-mill to health professionals they often don't tell us things either because it doesn't occur to them or they presume that we also know what's what. One of my clearest memories from my childhood is my mother challenging doctors etc. by asking them questions, many of them did not like because it sounded as though she was disagreeing with their lordly judgements: far from it, she was informing herself so she had a better understanding of what was being done to help me. I carry on that fine tradition so I have a better grasp of what I am dealing with, I find that understanding helps and informs managing.

    I have times when I have felt dreadful and my bloods have been perfect and times when I have been fine and my bloods have gone really haywire (we had to interrupt a holiday so I could go for a blood test at the local surgery (arranged by my hospital).

    I am not a doc but I find myself wondering if your PR was in fact the early stages of RA. Is there a family history of auto-immune conditions? My eczema and asthma same from my Ma's side, PA contributed the psoriasis, they were both too lazy to bother having any of that themselves. :lol: DD

    PS. I'm still tired.
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Palindromic Rheumatism often seems to be a precursor to RA. one theory is that it was always RA but only got more aggressive over time. Hydroxychloroquine is a mild DMARD but mostly, I think, used alongside methotrexate. That's how I take it and the combination works well for me. I think, if hydroxy alone has more or less kept things under control for you up to now you've just been lucky and maybe now the luck has run out and you do need to re-organise your life. My RA was really bad when my kids were young. There was no question of gainful employment. I could still play and do things with them but it all had to be modified. It doesn't seem to have done them any harm :wink:

    I guess it's worth checking your blood results, though. My GPs have always been quick to inform me if they suspected a possible problem and wanted another test and, as I said, particularly the haemoglobin levels as RA can deplete them and anaemia does cause fatigue.

    But so does RA :roll: Here's a good way of explaining things to your friends without resorting to moaning :lol:https://en.wikipedia.org/wiki/Spoon_theory

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