CFS symtoms for 3.5 years looking for advice re CFS and amitriptyline

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I'm aware that a diagnosis of CFS likely best fits what I am experiencing. I've had terrible fatigue for 3.5 years, alongside some other symptoms which have been less persistent- abdominal pain/bloating (now resolved), rashes, eye twitch, tingling fingers, mouth ulcers, hip pain (although a recent xray has shown I do have something wrong with my hips so this might not be related- I'm awaiting an appointment with orthopedics). I have been tested for lots of illnesses over this time and had lots of blood work done but nothing seems to point to anything specific. After going through a very frightening time when a GP thought I had ovarian cancer, which led to an unnecessary operation, I've backed away from looking for a medical answer and have been trying more lifestyle changes and just learning to cope with the fatigue. That's been about 1.5 years now and I now do all the things that have been shown to help lower stress and improve general wellbeing- I practice yoga and meditation daily, I'm vegan, have therapy etc, etc. Although I've improved a little over this time, I still really struggle and feel I'm only half living my life. I can be knocked sideways by any small thing- like having a slightly stressful day or getting a less than ideal night's sleep. I am 39 and have no children and can only cope with working 3 days a week- many weeks this is beyond what I feel I can manage. I was working full time but dropped to 3 days to try cope so this has been quite a financial loss. 

The reason I'm posting is that I read somewhere that some people can benefit from antidepressant medication (specifically amitriptyline). So I have been considering going back to the GP and seeing if the medical world has anything to offer me. I'm definitely not depressed but I have had a tough childhood with a lot of trauma which I'm working through in therapy. Although I sleep 'well' for 8+ hours most nights, the quality seems to be an issue- I am restless and I'm aware I feel tense at night. Although all my meditation etc does help, the quality of my sleep still an issue, which affects my fatigue and I feel I'm stuck in a bit of a vicious cycle with it sometimes. I wondered if this is where amitriptyline may help. 

I would be very grateful if anyone could share their own experiences of using amitriptyline for CFS and if anyone has any advice. 

Thanks!

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  • Posted

    Hi Betty,well done for managing to work three days a week. It's not easy is it? Even with a "non-stressful" job, there's usually something to wind you up and make you anxious, at least that's what I found. I had to go down to one day a week, and then luckily could retire, and it is MUCH better not working.

    I was prescribed with amitriptyline when I had a lot of pain with an arthritic hip, before a hip replacement, for pain and sleep rather than as an anti-depressant.  It did help me sleep at the time, but also made me a bit dopey in the mornings. I don't want to take it now as I am trying to avoid chemicals as much as I can, and I'm sure people with CFS sometimes react differently to medication. But I can only say try it and see, we are all different.

     

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    • Posted

      Thanks for taking the time to reply.

      Unfortunately my job is very stressful. I find it emotionally exhausting and know I need to find an alternative but I'm a bit stuck at the moment as it does pay well. I'm working to change as I do feel this will ultimately help.

      I'm also very reluctant to add any chemicals into my body as that's one of the things I've been doing over the past while. But I'm wondering if, as a short term measure, it might be worthwhile.

      I usually tolerate medication fairly well so fingers crossed I'll be ok.

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  • Posted

    I TOTALLY UNDERSTAND.   I identified with everything you said--especially living a half life-which I spend trying to make up for the half I lose.  I'm a mom and am really trying to be as present as possible.  I also believe that my husband is super resentful for having a wife that is nearly always sick.  I'll ask my doc abt amitryptiline.  I just returned from Stanford and that wasn't included in my cocktail. 

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    • Posted

      My husband feels resentful too (we've had some frank discussions!). In a way, I think it's normal to feel that way, their lives are affected by it too but I think it's really important that they realise the problem isn't US, we aren't the cause of to blame and that it's affecting us a lot more than them. They can go have a break from it all but we can't. My husband struggles with feeling 'hard done by' and that is not fair when he has to leave a party early, miss an event or alter his experiences because of me. It's something I've struggled with because I'm such a people pleaser but my experience of having this has taught me to look after myself and meet my own needs (or at least, that's what I try to do). I guess that's a lot easier without kids though!

      From what I've read, I think amitripliline is recommended when sleep and/or pain are issues so I guess depends on personal circumstances.

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  • Posted

    My GP suggested Citalopram instead. I think it helped but for me the solution was pacing. I gave up work and lived off savings and a year of saying no and doing things in very small steps I now have made a huge recovery
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  • Posted

    There's now some good evidence linking drugs like amitriptyline to the early onset of dementia, so it could be worth trying other things first? There's a decent discussion of the evidence in an article titled: 'Strongest Evidence Yet' Links Anticholinergic Drugs, Dementia

    ?The evidence we have seems to indicate that antidepressants generally aren't useful for CFS, other than for those patients who suffer from depression. Some antidepressants, like amitriptyline,? can also be used to help with sleep problems, so it could be worth talking to your doctor about what options there might be for that. A lot of the sleep-medications available seem to come with side-effects. Have you looked at autonomic issues, like Postural Tachycardia Syndrome?? That relates to changes in blood pressure meaning that standing is particularly tiring, and can be associated with poor sleep, CFS, and periods of anxiety.

    ?Sorry to hear that you're having a hard time. Best wishes.

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    • Posted

      I wasn't aware of the link to dementia so I will keep that in mind when balancing things out. I definitely wouldn't be looking at long term use as I know it's not a fix and I do feel that most medications come with an element of risk that we have to weigh up. I just feel I'm stuck in a vicious cycle at the moment and wondered if this might help me get some better quality sleep, I which will help me function better etc.

      My blood pressure from lying to standing was actually one of the first things the GP tested with me way back. I really have been tested for many things and I've paid for my own screenings too. I've found the endless search for a physical cause quite exhausting and stressful in itself. I suspect there's not a specific medical condition that will explain everything. My gut feeling is that I have been coping with excess stress as a result of childhood trauma, which was exacerbated by intensely stressful work plus a few stressful life events. I think this all caused a hormonal imbalance creating many of my symptoms and what essentially was just burnout. I think I've never really had an opportunity to fully recover from all this, particularly as I've tried to continue working throughout all this.

      To be honest, if I was given the choice of an improvement in my fatigue and quality of life for the rest of my life but to end my life with dementia or to continue feeling this way for the rest of my life but to not have dementia and die from something else, I I think I'd choose the first option.

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