I am struggling increasingly with extreme fatigue which I imagine is down to scleroderma. I try to limit myself to one outing/activity a day but even that's too much – I am tired enough to stagger when I walk. But if I "give up" and stay at home for a whole day I get very distressed – my body might be tired but my mind is very active and I get bored, lonely, fidgety, anxious – too much adrenaline – I start brooding and get even more depressed. My GP can find no obvious physical reason for the fatigue. How does anyone else deal with this? I am at my wits end – I can't live like this – and there's no cure, I feel it can only get worse.
Scleroderma and fatigue: I am... - Scleroderma & Ray...
Scleroderma and fatigue
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volvox45
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Volvox45, Hi, I am a similar age to you and the fatigue is what troubles me most. Struggle to walk more than a few yards some days. My thoughts are with you.
Thank you Claire. I've had to cancel a holiday this year because I don't think I can manage it – it's so upsetting.
Hi, and sorry to hear you are struggling so much. There are two things I would do:
1. Review the medication you are on, especially if you take any immunosuppressants. Many can cause or add to you fatigue symptoms. It may be that a dosage adjustment or switch could help.
2. Ask your consultant or GP to refer you to an occupational therapist. I was referred to one about wrist splints but she also asked me about fatigue and she had a lot of really amazing information and advice about combatting fatigue, based on research that has been done on people with autoimmune diseases. It has really helped me to get the balance right between doing enough and not over doing things, which can get you into a negative cycle.
All the best
Hi Sosie: I am 75 and also suffer from severe breathlessness and fatigue. My salvation has been my pavement mobility scooter which enables me get out.
Thank you, Sosie. I'm not on any medication for scleroderma – haven't been offered any. An occupational therapist is a good idea, but I am normally so active that I don't think I'd be taken seriously. I'll give it a go, though!
You might be surprised. I am a single Mum and work full time but my OT could still recognise that educating me about things like “boom and bust” would be helpful. Like you, I am a very active person and get very cross and frustrated when I can’t do everything I want to, but I have (finally) learnt that some small adjustments can go a long way! Good luck with it all x
Has your Gp checked your folate, B12 and vitamin D and also your thyroid function? If all ok, SSc itself can cause fatigue. My rheumy put me on plaquenil and it is a God send for me.
Yes, all those have been checked, and all fine.
autoimmune fatigue is truly debilitating. I had some help from an occupational therapist years ago and he helped me a lot with finding strategies for pacing and not fighting it all the time. I’m older now and have extra reasons for fatigue such as trying to manage overflow incontinence. But when my disease is better controlled I do get surges of energy and have learnt to use these wisely.
As with all things relating to autoimmune disease symptoms, I’ve got used to the fatigue and have found ways to accommodate it. For eg I’m extra tired now after 9 days in hospital on IV antibiotics and then Iloprost so I’m resigned to a wearisome week in bed near toilet. I couldn’t even walk dogs or stay awake for long enough to watch tv yesterday. This link has helped me although it’s about Sjogrens (which I have as well) but can apply equally to any autoimmune disease. It may help just to know that you’re far from alone with the chronic fatigue side of things. I used to hate it when my brain works overtime as you describe but now I just write down the constructive thoughts and use them when I do feel well enough x
OT60
sjogrens.org/blog/2019/13-t...
I’m so sorry you’re having such a rubbish horrible time oldted 😔. You always give great replies and thank you for mine about splinter hems. You take care of yourself and sending you a big hug 🤗 and just wanted to say thinking of you xxx
Make sure to get your bloods checked. Especially a deficiency in iron or B12 can wreck havoc!
hi Volvox you’ve added a really good post that I think is so relevant to so many of us . I’m so sorry you’re struggling and the fatigue is horrible isn’t it 😔.
You’ve had some really good replies and I’m afraid it’s all about pacing (which I used to roll my eyes 👀 at but it really does work) . I’ve been having talking therapies and like the occupational therapists people have mentioned we talk a lot about pacing and self compassion . Boom and bust aswell where we all do too much on the days we feel “okish”.
I totally understand what you mean about the walk .. I’ll get to the shop down the road then my legs say no more and I think how will I get back !!!🤦♀️
If you are in the UK I would definitely ask your GP to refer you to Talking therapies (a lot of funds have been injected into this so the wait to speak to someone wasn’t long at all ) I was referred to chronic fatigue Clinic (you can ask for that too ) but the waiting list is 50 weeks where I live in South West .
Take care of yourself xx
Thank you, Tiggy. I've had loads of talking therapy both on the NHS and privately, and find it very helpful, but I rather feel I've said everything now! I find it so difficult to predict how I'm going to feel and I absolutely hate cancelling things at short notice and letting people down. I have three volunteer jobs, two classes, two book groups, and countless outings with friends. I only retired from work three years ago and I can't come to terms with the idea of doing not much!
I had a period like this a few years ago, in the end I was diagnosed by my rheumatologist with secondary fibromyalgia (apparently the majority of people with autoimmune conditions have secondary fibromyalgia) and depression. I found that mindfulness and CBT really helped. The mindfulness really helps with the racing mind and the cortisol rushes which lead to increased anxiety. I use an app called CALM to help me focus. I still get very fatigued and have to plan activities but on the whole I no longer feel like I have to sleep during the day and definitely function better.
I hope you find a way to bring it under control. I was on fluoxetine (Prozac) for a few years previous to this episode but found they didn’t help me and I had an awful time coming off them.
Thank you Midgebite. I have a phone appointment with a rheumatologist in July but no help till then. My GP could find nothing wrong and doesn't want to see me for 3 months. I think one problem may be that I can't accept that I have a chronic illness. I have been getting episodes of extreme weakness and bought a blood sugar monitor yesterday which confirmed that my blood sugar does drop at these times. I don't know if that's connected to SSC.
that’s really interesting about the blood sugar levels and that will definitely be affecting your energy levels for sure. X
another thing that I have found beneficial is cutting out ultra processed refined sugar heavy foods. I did Keto for a while as it’s proven to reduce inflammation and did feel amazing (it’s quite restrictive though unless you have iron will power) therefore I have now changed to a more Mediterranean approach to eating which is easier to sustain.
Hi I totally understand what you are experiencing with this dibilitating disease.
It's so hard to accept the constant fatigue. Having to change plans at the last minute is so frustrating.
It's a long road but please seek advice from your team how to come to terms with the "new me".
Your Dr & Scleroderma specialist can offer help as others have mentioned.
Ask for a referral to help you manage the distress & change of lifestyle. There are numerous sessions e.g 1 to 1 counselling etc.
It may take a while to arrange these but keep trying. It really does help.
Take each day at a time & praise yourself when you have a good day or have achieved more than you expect.
Ask family & friends to help & offer support. Please note not all can support you so try not to be too down if this happens.
This group is great for support & to vent when you feel frustrated.
We're all here to help you!
Xxx
Yes… I think I'm constantly trying to "get better" rather than come to terms with the "new me" who actually I can't accept! I haven't seen a scleroderma specialist for three years but have finally (after chasing) got an appointment in September.
I'm glad you have an appointment soon. You really have to fight tooth & nail with this disease! Keep strong & get the referrals.
You may find some of the sessions don't work for you. I found the 1 to 1''s invaluable.
Good luck & keep positive! Xx
My other problem is that on the odd occasion when I have to "give in" and cancel something, I feel doubly punished because I only do things I really enjoy and it doesn't seem fair that I miss out on pleasures just because of this stupid disease!!!
Yes I totally agree as I've felt the same in the past!Learning not to be hard on yourself takes some doing! With the right support you will get there & learn to take each day at a time. Xx
I also struggle with fatigue but I take steroids 10mg prednisone per day & this helps a lot.
Stuck on my kitchen cupboard I have a card which says, "Healing is not going back to how things were but embracing how things are". It doesn't always make me feel better but does remind me what I'm aiming for after I've had a good swear over something I can't manage.
Oh gosh, I've got a long way to go then… I don't want to embrace how I am now! It's not me!!
It's not me either, but there's no choice. At least it's better for our mental health, all that anger and fretting doesn't do anything any good, in fact stress makes things worse.
You are completely right, of course… I haven't got over being post-menopausal yet though, and that's 20 years on!! 😂
It's hard when my husband keeps emphasising the importance of a positive answer
Yes it's hard to be positive. Not sure if it's better or worse when you live alone and have no option but to try to do things yourself. I try to be positive with friends because they don't want to keep listening to all my troubles, and most of them have their problems too. I have the myth that by being positive with them I'm helping myself. It doesn't help when I have to find tradesmen to do all the things I used to do myself. I find that very frustrating.
Thanks ,I too get frustrated at my inability to do jobs round the house ,not helped by a recent hip replacement,which seems to have caused a flair up with my other joints.My husband is doing his best but the garden and house are looking sorry for themselves and we are trying to find a gardener and cleaner.....
Not easy. I have found a cleaner which means I can still potter in the garden without feeling guilty that I'm not cleaning the bathroom. The garden is a real frustration because I've been a keen gardener since primary school days. I've had the front garden completely made over so that it doesn't need any attention-not my idea of a garden-but needs must. I can still do bits in the back with a short burst and long rest. My neighbour jokingly said every time they see me I'm sitting.
I know the feeling and empathise.Wish I knew the answer
Thank you! Any empathy most welcome.
I had an early menopause and just loved it, being rid of all that palaver. Don't know if that helped ease the other symptoms, but I didn't suffer unduly so was lucky.
Hello, I can totally relate to everything you have said. My advice to you is to contact your rheumatologist. I stopped going to my GP a while back as they're not the best people to talk to, and like you got very frustrated. I was diagnosed 6 years ago, and unfortunately, my Systemic Sclerosis has been rapid. It doesn't stop me from traveling by train to visit family. Passenger assist is a great help, and they're always very polite. I use a walking stick around the home and a 4 wheel stroller when leaving the house. You can contact your local council and speak someone regarding your condition. I am 54 and had to swallow my pride when asking for help, but I am glad I did. Are you under a specialist? If not ask your rheumatologist for a referral. Have a lovely day.
Oh gosh, I don't know why I'm complaining. I'm 77 and have just done two hours' volunteering on my feet as a room explainer followed by a mile walk (downhill!) home – and I'm complaining because I'm absolutely whacked! I just don't like admitting it, and I find it hard with a condition that's completely invisible, to tell friends that sometimes I just can't do things. I really must stop complaining, just because things ain't what they used to be!
it’s interesting about the relativity thing isn’t it? Perhaps a lot of the being in denial is about how long we’ve been chronically unwell for - diagnoses or undiagnosed? I’m 60 and, with hindsight, I’ve always been an autoimmuner since I was wee. But diagnosis has taken many decades and correct diagnosis, even longer and in some ways, still a work in progress!
When in hospital all of last week and week before - I briefly shared a bay with three older people. Two were just their pre and post scope so only for the day, both quite vocal (hard of hearing) and both in their late 70s. The woman was loudly saying that she hates hospitals and hates needles, listing off all her conditions, eking out a few more from the endoscopy nurse too. As a longer haul patient I tried to block her out but she was actually perfectly friendly - just very loud.
Then there was a chap opposite her who also had a scope - think his was a colonoscopy. He was hilarious - got undressed and dressed afterwards without curtain for privacy which made me and my visiting husband giggle. At one point he wandered off without telling any staff and when I was asked I said “he’s gone back down to “that horrible place” to find his glasses - apparently they took them off him?”.
When returned, wearing his glasses, he then started tugging at the plaster surrounding the cannula in his wrist until a nurse told him to leave it and she’d be back soon to take it out for him. He ignored this as it was annoying him so the older woman said “hey leave it be - the nurse said she’d do it!”. He laughed and said “I won’t pull it out but I’ll just take off the stupid plaster!”. I suddenly found myself sitting up and saying in a really eye roll manner - “if you keep picking it will slide out and there will be a blood fountain - which will make more work for the nurses, more washing and possibly incinerating of sheets and then you’ll take them away from patients who need them more”. Very unlike me but the unscheduled hospital stay was clearly taking its toll! He stopped picking, apologised and and the woman exclaimed “well that’s you telt!” And we all laughed!
After that all three older patients chatted to each other and I murmered occasionally from my pleasant fog of Oramorph or Cyclizine. We all agreed that when what we’ve had is lost it seems very unfair. I told them I’d always been fatigued - always struggled to keep up even as a tot. Same with itching and pain. So I have no expectations of freedom from these now. But nor do I notice them much. Whereas my eyes and hearing have always been my superpower and when told I suddenly have cataracts recently - with a shrug and “well you are 60” from the optician - I was really upset and annoyed! In fact I cried afterwards because I know I won’t get them done on nhs for years and I can’t afford to pay for them to be done privately. Something small and fixable seemed far more burdensome to me than it would to most people I guess.
Lovely post, thank you Old Ted! I had no symptoms till I was 70 (2016) and it only took a couple of years to diagnose so in a way I haven't had time to accept it. I am angry that it's not curable (sometimes I wish I had cancer instead!), hardly treatable, and invisible; and confused because I don't know whether the fatigue is because of SSc or something else, so I don't know how to deal with it. In fact I realise now that I'm angry all the time and it's making things worse, so that's one thing I can tackle – I've stopped listening to Today and any other news 😆 !!!
I do understand although I’m a decade or so younger than you. I too have seriously major bouts of anger! I had several very rational and proportionate episodes of rage while hospitalised last week and some of this was scleroderma related - in part for the reasons you mention ie rarity, invisibility, lack of research, lack of understanding and no cure.
But my scleroderma and sjogrens is mostly in my gut and there’s nothing more infuriating than being presented with hospital food I’m not allowed, systemic incompetence and wastage for me!
But then thankfully the fury passes - perhaps diffused by meeting another patient who seems to have it worse. Or just having a belly laugh with someone who understands.
I have no real advice for you about the awful fatigue and anger combo. But personally I have found that making close cyber friends with same or similar has been the best tonic as my other long term healthy friends fade into the background. Maybe just me but acceptance of living with uncertainty and reconciling myself a life that’s become increasingly medicalised - has given me other reasons for wanting to stay alive. And accepting the bad days has helped me embrace the good ones. X
I'm with you on GPs. I reported the fatigue to mine and she said it could be my age (!), depression, or being undernourished due to scleroderma (I am under a dietician), and to come and see her again in three months if I don't feel better! No mention of the possibility it could be caused directly by SSc, and I'm not clear if/how it can? I shall save all these questions for my rheumatology phone appt at the end of June.
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