I'm so tired

GavinMK
GavinMK Member Posts: 6
edited 4. Feb 2020, 09:20 in Say Hello
Hi All,

So I only found this forum while trying to help my wife with her studies and I think maybe it will help getting some stuff out there.

I'm 41 and have suffered from one autoimmune diagnosis or another for the past 9 years or so.

My very first diagnosis was terminal with a 3-5 year life expectancy, you can imagine how well that went down only to find out a few years later that the Dr who diagnosed me was having a mental breakdown at the time and I was in fact not dying any faster than anyone else.

However as the years pass by the general chronic pain has gotten worse and worse and no medication has helped until recently when I was put on Benepali which seems to be working so far. I can start looking forward with a bit more optimism now but it's still a struggle everyday.

I have to put together a side table for my kids before they get home from school today but I can't bring myself to do that because I'm just so very tired.

The extreme exhaustion is my latest symptom and it's easily the scariest. It got so bad that I was convinced I was on the way out. I'm not really sure if I'm not so the wife has gone back to school so she can financially look after the family if I'm forced to stop working which is doing great for her mental wellbeing which I like to see.

I never really paid enough attention to how my disease has hurt the people around me and that's been a real eye opener recently.

I think with the recent mobility issues it became apparent that as I get worse, so does her and my kids lifestyle. Walking around a city is becoming too much and that just leads to hermiting which is not good....

ag I'm rambling... anyway Hi, reading through the forum today has helped in ways and I'm glad this place exists so thank you.

I'll be lurking and will see if I can help with advice here and there as I've been on so many drugs for better or worse.

But I'm so tired....

Comments

  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hi Gavin and welcome to the Versus Arthritis forums.

    It's good that you have finally got a diagnosis that makes sense to you and explains the range of symptoms you have experienced. That's quite some story you have!

    Given the range of your experience, I'm sure you are aware of the factors that are encountered in taking Benepali, which is a bio-similar drug to etanercept. It is worthwhile taking a look at our factsheet on etanercept:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/etanercept/

    The onset of severe fatigue can be very alarming and is something to raise with your doctor. Do take along a "diary" of when this happens and any additional information that may be helpful, such as sleep and exercise patterns.

    Here is some information on fatigue that mey be of some help:

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

    Do join in across the forums and please add your personal experiences to help others in our comunity.

    Best wishes
    Brynmor
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am in week three of a psoriatic arthritis flare combined with osteoarthritis which is playing up because of the weather. One healthy husband and deliberately no children makes my life considerably easier but it still all goes wrong from time to time despite the meds. It is what it is, it does what it does, I just have to ride it out; after 23 years of living with it I know what works for me.

    In addition to the arthritis I also have fibromyalgia which, when that has a snap at me, causes extreme fatigue which affects my concentration (I don't have any) and my ability to make decisions (I can't). My muscles also become very sore and tender.

    I hope you find the forum to be of interest, we get it because we've got it. DD
  • GavinMK
    GavinMK Member Posts: 6
    edited 30. Nov -1, 00:00
    replying to my "I'm so tired" post with the fact that I've been awake since 1am and have just given up trying to sleep now and have started working.

    I used to sleep amazingly, now even if I get a full nights sleep I don't feel rested.

    Need that summer sun to come back round
  • stickywicket
    stickywicket Member Posts: 26,701
    edited 30. Nov -1, 00:00
    I'm sorry you 'qualify' to join us, Gavin. Unfortunately, as you now know, arthritis can strike at any age, especially the autoimmune types.

    You write of having “one autoimmune diagnosis or another for the past 9 years or so. “ Is that just the original 'not terminal' one or have you had others? And, for how long have you been on DMARDS of one sort or another?

    I'm glad the benepali seems to be working. Is that 'working' by the rheumatologist's definition ie your inflammatory levels are lower or is it working by the patients' definition of less pain? The two can go together but sometimes our blood results are fine but the pain still rolls on.

    Fatigue, as you will know, is part and parcel of the disease though much worse when we're flaring. Perhaps the benepali isn't working at full strength yet. Or perhaps your fatigue is, at least in part, due to other things. You don't say why you are lying awake at night. Is it pain? If so, your GP could probably help. But, if it's due to other causes eg worry about the future etc then perhaps you have just got yourself into some bad sleeping habits which make you lie awake at night and so cause exhaustion during the day – maybe especially at the thought of the children arriving home – always an exhausting prospect I found when mine were young and my RA at its worst :lol:

    Our disease certainly affects the people around us. It affects everyone in the family albeit in different ways. But it doesn't have to hurt them. We just have to adapt our behaviour. When I got so that I couldn't do all the walking was when I first hired a wheelchair for a holiday. Pride might stop you doing that but the arthritis won't. My three year old loved travelling on my knee and so, in later years, did both my grandsons. Their Dads love to terrify me with 'creative pushing' - “Look, Mum, no hands!!” We still have lots of fun together. Sitting down , with all our baggage, I used to be stumps and keepr at beach cricket. And I was always a good scorer for them at snooker or table tennis. Just think outside the box. Why, I wonder, do you need to get out a side table for them? Can they be taught to get their own?

    Don't 'hermit'. Don't shut them out. Don't think “I can't” think ”How can I?”
  • GavinMK
    GavinMK Member Posts: 6
    edited 30. Nov -1, 00:00
    I'm glad the benepali seems to be working. Is that 'working' by the rheumatologist's definition ie your inflammatory levels are lower or is it working by the patients' definition of less pain? The two can go together but sometimes our blood results are fine but the pain still rolls on.

    Sorry it's been a very busy week so slow to get around to my emails here...

    It's 'working' by my definition, I don't see the rheumatologist for another month. I've still got a lot of difficulty walking as I'm currently having a flare in my achilles.. well I say currently, it's been 7 months now
    You don't say why you are lying awake at night. Is it pain? If so, your GP could probably help. But, if it's due to other causes eg worry about the future etc then perhaps you have just got yourself into some bad sleeping habits which make you lie awake at night and so cause exhaustion during the day – maybe especially at the thought of the children arriving home – always an exhausting prospect I found when mine were young and my RA at its worst :lol:

    I think the sleeping problems are very much due to stress at the moment, I do still work a lot as my kids are heading towards university age and my wife is returning to university so that she can finally study her medical interests (and guarantee an income) in the future.

    All of which is amazing but at £9250 a year each I feel the need to double work to ensure everyone isn't saddled with decades of debt simply for having an education. Why any government thinks saddling people with debt for educating themselves is a good policy is beyond me but that's for a different forum :lol:
    We just have to adapt our behaviour. When I got so that I couldn't do all the walking was when I first hired a wheelchair for a holiday. Pride might stop you doing that but the arthritis won't.

    I'm only 41 and thankfully not at the stage where a wheelchair would be required. But we went to the local lake this weekend for a walking event and while I used to be able to do 5+ laps of the lake I could only manage one this weekend before coming up with an excuse on why I needed to do something else. It's difficult
    Why, I wonder, do you need to get out a side table for them? Can they be taught to get their own?

    Oh no, I meant I was building one of those flatpack things for their hallway, it only took 30 minutes in the end but getting the motivation to move sometimes is incredibly difficult.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hello Gavin. Sorry to hear you are struggling with fatigue, it's hard isn't it?
    If your children are coming up to uni age then could I respectfully suggest that assembling a flat pack shouldn't be beyond their capabilities, and is also a useful life skill! If you are on hand to advise/help out then the job gets done without all the effort falling on you.
    In the summer before my son went to uni I taught him how to deal with his laundry, budget, and cook. He enjoyed the challenge of making his money stretch and I enjoyed having meals cooked - and cleared away - and made the most of his company.
  • stickywicket
    stickywicket Member Posts: 26,701
    edited 30. Nov -1, 00:00
    It's good if you're actually feeling better on benepali. I doubt it'll help the Achilles as that's a tendon. Isn't it rest and exercises for that? Sorry, can't remember.

    Stress will not help you to sleep but also arthritis thrives on it so anything you can do to 'de-stress' (eg sleep :wink: ) would be good. Have you tried relaxation techniques?

    You sound like an energetic familt, which is great, but we can't protect our kids from our disease for ever. I never could as I got RA at 15 so was well in before the boys arrived. My toddler loved that first wheelchair ride :lol: Exercise is essential but it does have to be the right kind not the punishing kind. I guess my kids always knew that Mum couldn't do everything but I did find other ways of joining in. Arthritis does lead to lateal thinking :lol:

    I think it's best not to be making excuses. OK we draw a fine line between that and moaning on but a simple "I can't do it today" or "That's me finished for now." helps them to understand which is good for everyone. It's so easy for our loved ones to feel excluded as if we are simply choosing not to do things with them. Try googling The Spoon Theory. It's a good way of explaing some of the problems.