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  1. PrairieLights

    Sore back of the knees

    I seem to have solved my knee pain, well not why but solved the pain. Back in November I stopped taking my evening primrose oil because I felt like I was paying for too many things. I've had knee pain and stiffness since December, one more than the other. I suddenly started wondering last...
  2. PrairieLights

    Coping with heat

    I don't understand this whole discussion on fridges and freezers. I don't think we're going to start getting rid of them. I have three, by the way. We rent and they provide a fridge that is tiny that I am stuck with. I have a proper fridge/freezer in the garage and an under counter deep...
  3. PrairieLights

    Coping with heat

    I guess I am lucky my cat insists on only sitting on my literal knee and not the rest of me that doesn't want more heat. Haha
  4. PrairieLights

    [Recruiting Research] Disabled People’s Experiences with Physical Activity

    When the paralympics was on they promoted a group with exercises for those with varying disabilities. I was so disappointed when I got the energy to look and nothing seemed appropriate at my level.
  5. PrairieLights

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    That's exactly the level of thought it felt like they were putting in.
  6. PrairieLights

    Coping with heat

    I didn't know about that. This is my second year putting them up. We have double glazing.
  7. PrairieLights

    Coping with heat

    Yes, I find perfect air flow seems so critical in the UK else problems spiral fast. Also have a bit of a mold allergy
  8. PrairieLights

    Coping with heat

    I might try the bottles idea, I get paranoid about mold. I'm not originally from the UK and never had mold growing up. I know it's summer but I don't really get out of the mindset from winter of preventing mold.
  9. PrairieLights

    Coping with heat

    I remembered another thing I do. I have one of those hot water bottles wearing a sweater. I fill it about 1/3 and freeze it and then sleep snuggled with it on bad nights. It lasts 3-4 hours.
  10. PrairieLights

    Coping with heat

    I will do that and see next time!
  11. PrairieLights

    Coping with heat

    I think I have issues with where our house is or something. Our house faces norh/south, but somehow the wind goes east/west past the windows rather than into them. Last year I even was putting the tower fan on the ledge and it didn't seem to bring anything in. I am baffled by that. I'd love...
  12. PrairieLights

    Coping with heat

    I'm going to start feeling my walls. I often feel somehow my house doesn't cool.
  13. PrairieLights

    Coping with heat

    We rent and with the type of windows we have it's hard to get a unit that fits. Even the kind with that big hose thing requires something fitted to block the window and I can't stick anything on. Plus it's a big expense since being unable to work.
  14. PrairieLights

    Coping with heat

    Heat is one of those things that leaves me struggling more. I have no access to air conditioning. I thought maybe if there are others who also struggle we could share some tips or ideas that help us. Last year I bought these window heat reflecting things for the window. I have them in my...
  15. PrairieLights

    Trial Report Heart Rate Lowering with Ivabradine and Burden of Symptoms in Patients with Postural Orthostatic Tachycardia Syndrome, 2025, Marchetta et al

    I have been wanting to try ivabradine but also scared to change my medication at the same time. I don't have POTS but have dysautonomia. I have tachycardia upon moving not upon being upright.
  16. PrairieLights

    Why are pwME not offered an annual review/checkup in UK?

    I don't get annual reviews on any of my conditions nor medication. Annually they take my medication off repeat, I discover this when I need to order a prescription ... then they get the GP to review and put it all back. I have personally asked to be sent back to cardio to be reviewed and...
  17. PrairieLights

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Can people recover from me/cfs like that or is it more likely she was misdiagnosed? Seems the diagnosis is a guessing game. I can't imagine doing a marathon ever.
  18. PrairieLights

    Review Impact of Exercise to Treat Postural Orthostatic Tachycardia Syndrome: A Systematic Review, 2025, Cortez et al

    I have heard accounts from people with POTS (not seeming to have known comorbidities) that increasing exercise did help them but it was a long process. From what I understood from them was they also increased other things too such as salt intake and some took medications to help in that area.
  19. PrairieLights

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Thank you, if I get one I will pretend it must have gotten lost in the mail.
  20. PrairieLights

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    I did the survey. It's nice to feel I'm adding my voice to something as I feel quite powerless.
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