Utter exhaustion!

Hi All,

I would appreciate it if anyone can advise me whether lymphoedema is associated with absolutely crushing fatigue that affects me all the time. I'm having real trouble staying awake at work and fall asleep at the drop of a hat. Really embarrassing - can anyone advise whether this is normally associated with lymphoedema, and if so what I can do to help myself?

Many thanks

10 Replies

  • Get yourself checked out - there may be an hormonal imbalance which could be corrected via your GP. Do you have secondary or primary lymphoedema?

  • Thanks for coming back to me Lynora. I have primary lymphoedema, and was quite recently diagnosed after having lived with this condition for around 20 years. I have had on-going issues with fatigue for years but now it's the worst it's ever been.

    I have a goitre but was told that thyroid levels were normal. I feel like I'm dying, just kind of fading away gradually without even knowing the reason why.


  • Have you checked out thyroiduk? they have a community on here too. I have learnt loads from them. some Doctors in uk don't treat thyroid problems until TSH (thyroid) levels reach 10 but thyroid uk believes this to be incorrect and treatment should start much earlier. Joolz.x

  • Hi Joolz,

    Thanks so much for the advice. I will take a look at Thyroid UK and go back and challenge my GP.

    Just started a new job and am constantly more sleepy and dopey than some of the clients of the service I manage. They are elders with various conditions so often are justified in being sleepy all day - not so for me!

  • Hello

    I have bilateral full leg Primary Lymphoedema Tarda. The specialist scans I've had show that my legs have an absence of and abnormal lymphatic vessels; as well as failing lymph valves and nodes. However these impairments didn't start to wreak havoc on my functioning until my early 40's which is when investigations started at St Georges Hospital London. I had been a very sporty extremely high energy person before LE started to undermine my mobility and daily functioning. My energy levels are MUCH lower than they used to be before my LYmphoedema morphed in 2014. My friends and family have also observed and commented how much lower energy I am now and that I wear out so much more quickly each day. Also, I used to get through my busy days with 4-5 hours sleep and would go non-stop all day, whereas now I need 9-10 hours of sleep/rest at night. Since the LE took over my legs I don't feel like I'm dying as you described you feel, however I do think LE can for some of us hugely impact on our energy, daily stamina and sleep requirements.

    I think it's likely that some of your tiredness is attributable to LE. However as others have commented here, it's important to rule out or in other possible health difficulties that may also be impacting on your energy levels. Cat x

  • Thanks so much Cat, I had tried researching this on the Web, but the is very little information on it. Thanks also for sharing about your L E journey - that and all the kind support from you and other members of this forum is invaluable and has made me feel less isolated.

    Thanks a million 😃

  • Sleep apnoea can have this effect. Have you been checked for this? Are you able to get outside for some gentle exercise every day? It may help with your energy levels.

  • Hi White Sugar,

    Many thanks for your post. I have been tested for sleep apnoea and they said I didn't have it, despite my poor hubby saying that I regularly stop breathing during sleep which freaks him out.

    Think I'll revisit this with GP again. Really appreciate the advice and support.

    Stay cool ☺

  • If there is a choice of GPs in the surgery, I would try and see another GP as sometimes one might be more knowledgeable in one health problem than another. I agree with someone else who suggested you ask this question in the Thyroid forum.

    Also, maybe in change in your diet could also help.

    Good luck!!

  • Many thanks for your post Rebecca, will try to see another GP and have started making changes in diet already.

    All the best.

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