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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Cheryl M

    Nicotine?

    I am trying nicotine for ME for the first time, but I was daft enough to buy lozenges instead of patches, and they are HORRIBLE. (You have to dissolve it in your mouth for half an hour, there's a strong mint taste and it's burning my mouth.) Update: Oh, wow! I didn't expect ti to make me this...
  2. Cheryl M

    Can’t get the signing pf my will and testament witnessed by a doctor

    There's actually a specific section of th will where I explain why I have left people out, saying (more or less word for word) "one family member is abusive and the others have not been supportive while I've been ill". So that's very brief, but hopefully it will do.
  3. Cheryl M

    Can’t get the signing pf my will and testament witnessed by a doctor

    THanks for your reply. Citizens Advice is a UK organisation that provides people with free legal (and other) advice, so they would have no motive to make up problems to push up the costs... My will is extremely simple. Yes, I sort of see what you mean, that no-one believes me about the memory...
  4. Cheryl M

    Can’t get the signing pf my will and testament witnessed by a doctor

    I’m sorry if ths kind of post is not allwed (or if it's in the wrong place) but I don’t know what else to do about the situation. Last year I managed to get a will drawn up online for free. I mentioned that I have quite serious memoriy loss (obviously undiagnosed since doctors don’t take that...
  5. Cheryl M

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    Yes, I got the Garmin Vivosmart 5, and it's been really usefu;! I was able to take screenshts from the app and email them to the cardilogy dept to show them what my heart was doing. It's been realy handy to look at the data and see my heart rate spikingg every time I stand up (I knew it was...
  6. Cheryl M

    Adverse reaction to nasal steroids (mometasone). Angioedema?

    Thanks for responding, hope the nose things work out for you. I have used nasal saline before and it doesn't really seem to make much diference unfortunately. I'm also terrified of doing anything "weird" (so to speak) in case it makes everything even worse, and then I'll have to admit to the...
  7. Cheryl M

    Adverse reaction to nasal steroids (mometasone). Angioedema?

    Tl;dr i had a reaction to nasal steroids. I have nasal obstruction. THis has never been diagnosed or treated; two ENTs stuck a camera up my nose and found nothing. My GP basically told me "You're lucky you were able to breath through your nose for 36 years, because some people don't get to do...
  8. Cheryl M

    Does anyone know how to choose a psychotherapist?

    Haha. She was veyr young, to be fair. Perhaps she'd never dealt with somene who had mmemory loss before?
  9. Cheryl M

    Does anyone know how to choose a psychotherapist?

    O bloody hell. I thought I was starting to understand thiss talking therapy thing andnow you're teliing me maybe I just needed a differnt counsellor?? Oh dear.(Thank you, though.) I haven;t even been able to find out what sort of talking therapy is recommended for progressive memory los.. I...
  10. Cheryl M

    Does anyone know how to choose a psychotherapist?

    Ah. I think you are saying this was an idisoysnacy on the part of the counsellor rather than being normal practice?
  11. Cheryl M

    Does anyone know how to choose a psychotherapist?

    Oh dear, here we go. I'm proaably not the best person to ask lol. What it comes down to is that a counsellor is not allowed to give you advice. Theyre just suposed to help you clarify your thoughts, etc. They would spend a lot of the time listening while you talk. What happened before (a couple...
  12. Cheryl M

    Does anyone know how to choose a psychotherapist?

    Thank you, everyone. That's all very helpful. Psychotehray and counselling are subsets of talking thearpy. The one I need is pychoterapy because counselling wo’t work. I agree about CBT! Yeah, I once asked my GP to wite me some benefits evdence, and he wrote, “I believe her when she says...
  13. Cheryl M

    Does anyone know how to choose a psychotherapist?

    Hello. I need talking therapy. It cnanot be counselling because I have quite serious emory loss, and I’ve tried counselling, and itdoesnt work because I need the therapist to direc the sessions. I can’t diretc them myself because I can’t remember things from one week to another, and it’ll only...
  14. Cheryl M

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    The Garmin Vivosmart 5 has some rather small lettering, I've got to say (though the heart rate itself is pretty big and readable).
  15. Cheryl M

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    Thanks to everyone who offered advice. I have ordered a Garmin Vivosmart 5 and hope I'll be able to get some data in time to show the cardiologist. I can always buy an Oura later on if I think that's going to work beter. Thanks again.
  16. Cheryl M

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    Wonder if someone could please help me… I have realised that data from a fitness tracker might be invaluable, so want to buy one. Unfortunately my cardiology appointment is on August 17th. Apparently there aren’t really any devices that reliably measure blood pressure just yet, apart from...
  17. Cheryl M

    [Efficacy and safety of noophen in treatment of CFS in patients with cerebrovascular insufficiency]

    I don't know how Kenshin's getting on, but I'll answer the question myself if you want... I'm still taking pregabalin. The GP surgery has been onto me telling me that I've been taking it for too long (8 years) and I myabe ought to stop, so I just ignored them. I have akathisia, which I hadn't...
  18. Cheryl M

    Attendance Allowance (UK)

    Righto, thank you.
  19. Cheryl M

    Attendance Allowance (UK)

    Ah, I've just read that nearly a million people have applied for Universal Credit in the last fortnight, so the DWP is probably overwhelmed and operating even more slowly than usual. That still doesn't tell me whether I should go ahead and get the application in the pipeline, though.
  20. Cheryl M

    Attendance Allowance (UK)

    @Wolfcub It is very hard to know what to do about all sorts of things at the present time, isn't it?! It's also difficult to know who to contact about medical evidence. The person for whom I am filling in the form never goes to the doctor if they can possibly help it, and is claiming to have...
  21. Cheryl M

    Attendance Allowance (UK)

    I now have the problem that I can't gather evidence because al the medical workers have more important things to do. I wonder if I should go ahead and submit the claim without much evidence? The alternative is waiting, perhaps for months.
  22. Cheryl M

    What do I do about my dementia? (UK)

    Hi, I will update about the memory loss stuff. (I’ve been told I cannot call it dementia since a specific disease process has not been identified in my brain.) Firstly, to put it bluntly, everyone went bonkers when my memory loss became pronounced; they all started acting in incredibly bizarre...
  23. Cheryl M

    alcohol helps me?

    @Anetta Alcohol is listed as "ETOH" (a shorter way of writing "ethanol")
  24. Cheryl M

    alcohol helps me?

    I have been on pregabalin (Lyrica) for five and a half years. I was put on it after undiagnosed akathisia caused a suicide attempt. The psychiatrist then legged it because hardly anyone wants to live in West Cumbria, and certainly not psychiatrists apparently (I don't think I have ever seen one...
  25. Cheryl M

    Attendance Allowance (UK)

    @Celandine Thanks for being so helpful. I'm filling in the form for someone who is unable to fill it in themself. This makes me think all the previous COI restrictions apply. The district that has been helping me says that they are not able to offer home visits, so I'll have to keep on travelling.
  26. Cheryl M

    Attendance Allowance (UK)

    Going to the CAB is a huge effort because I have to travel 20-30 miles to get to the next district. I need to warn anyone who has an abusive relative that the CAB has conflict of interest rules, meaning that if a particular CAB district have advised your relative they are not allowed to advise...
  27. Cheryl M

    Attendance Allowance (UK)

    @Wolfcub, I would like to express my solidarity with your aunt because THE FORM IS TOO BLOODY LONG!
  28. Cheryl M

    Attendance Allowance (UK)

    I don't know if someone can help me here? How on earth do you play the Attendance Allowance game? (I'm filling in the form for a pensioner.) The whole form is littered with boxes saying, "How many times a DAY do you need help with this activity?" when it's something that occurs a couple of...
  29. Cheryl M

    Why would X-ray cause improvement?

    Mmm, well, the foot only had synovitis so maybe I should actually try breaking it sometime :rofl:
  30. Cheryl M

    Why would X-ray cause improvement?

    Yeah, that sounds as if it might well be exhaustion from the demanding journey. I hate it when they give us really early appointments; I was once given an ME appt at 8:30am at a hospital 80 miles away. (Should have stayed overnight near the hospital, I now realise.)