• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. D

    rumatoligest sayn hurtful things

    I'm sorry you are having a hard time. :hug: Have you been on benefits and work? You have to pay to access their guides, I think it's about £20 but it is truly worth every penny they tell you how to fill out the forms to make it absolutely clear what your difficulties are. But they also tell you...
  2. D

    Childhood illness & ME/CFS ?

    I'm in the UK, we are relatively close to Newcastle now and he said it's the work being done there which is largely informing how ME is regarded locally here, and which is transmitting the knowledge relating to latest research, so all good things hopefully! :) I have tried gluten free because my...
  3. D

    Childhood illness & ME/CFS ?

    Typically speaking I don't tend to take antibiotics unless my skin is really, really bad because I do worry about what they could be doing to my gut. Possible TMI alert but I'm talking huge boils that just will not go away and keep erupting putting me at serious risk of pressure sores because...
  4. D

    Childhood illness & ME/CFS ?

    Hi. :) No I've not tried LDN, it would be interesting to try it but tbh it's only really in this past year I've started seriously researching my illness personally after being so ill for so long, so I'm still relatively new to actively trying things beyond pacing. But it could be one for the...
  5. D

    Childhood illness & ME/CFS ?

    I didn't have scarlet fever or rheumatic fever either, but I was a sickly child right from being a baby; we think there are reasons which means this makes sense due to environmental exposure to serious chemicals both before and after i was born. But while I can see a definitive point where my...
  6. D

    PEM/PENE delayed or immediate?

    Same. It could be exercise intolerance of course, but cognitive activity can trigger it, sometimes severely, and usually does because like you I'm so physically restricted. it contains the symptoms SOC lists under PEM rather than EI, like sore throat, a very specific type of pain right at the...
  7. D

    Do small doses of caffeine help energy levels?

    I can't do without caffeine I never feel like it massively increases my energy or makes me feel I can do more, but I feel so, so, so much worse in all ways but especially cognitively if I try and cut it out. My activity level remains the same whether I am having caffeine or not, but how unwell...
  8. D

    Anyone else suffer from nocturia?

    I could be totally misremembering, entirely possible with my brain! But I seem to remember the letter for my endo surgery mentioning my ureter, the surgeon wasn't very nice Tbh and I never got a follow up appointment so it kind of was left at the time. I don't know what happened with my letter...
  9. D

    Anyone else suffer from nocturia?

    That's interesting, thank you, Eeyore! I will definitely Ask my doctor about it then! I also have endometriosis and I seem to remember something in that regard last time I had a surgery, so it could well be that maybe. The reason I wondered whether it could be ME related is because this seems to...
  10. D

    Anyone else suffer from nocturia?

    I get this a lot. It doesn't matter if I limit liquid or whatever because I frequently wake up feeling like I'm desperate to go even when I can't/ don't need to. I also get this a lot, this feeling I really need to go, when I'm needing to stand up and down/ transfer a lot usually it's just a...
  11. D

    Feeling worse after waking up.

    I have this, pretty much every single day. My energy is more like a roller coaster than a curve though, my pattern pretty much goes; Feel awful on waking, especially if I wake earlier in the morning according to a 'normal' day time routine. Several hours later after waking I usually feel a bit...
  12. D

    Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

    Again, Alex. Sadly, very familiar. I too think my ME started aged seven, I was a sickly child right from being a baby, asthma, recurrent infections, bad reaction to measles vaccine etc. but in hindsight that was definitely around the time when my ME started. There was a definite change in the...
  13. D

    Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

    I was thinking that too. We used to be members of AYME, looking round their website is pretty disheartening now I'm an adult with a much better understanding of my illness. It wouldn't surprise me if that's what happened to me as well when I was fighting to stay at school. When I was at school...
  14. D

    Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

    Thank you, Effi. I always feel the same way when other people share their experiences. :):hug: That's exactly how it is with the TV, especially in the 'tired but wired' thing so many of us get. And I agree with you about how crazy it is to push people who are ill into routines and getting up...
  15. D

    Leaflet on paediatric ME/CFS circulated by AYME to 10,000 UK GPs

    Long before I fully collapsed and got a diagnosis I already had the onset of sleep reversal. Given that I was a paediatric case and was struggling to keep my head above water staying at school, you can imagine how well that fit around a school day. Had my parents not allowed me to sleep in...
  16. D

    Dizzy and tired after eating

    I get this often, along with various other symptoms. Stomach ache where it feels like I've eaten a cheese grater, nausea, feeling breathless, bad bouts of vomiting in the past etc. my heart rate can also go way up when I've eaten too, and I can get chest pain. I didn't know for sure, but I...
  17. D

    Wheelchair advice pls (UK)

    I'm not 100% sure of the actual cost that it would cost you to purchase privately, as we had a couple of makes supplied to us over the years we had one. A quick Google shows that the types of ones we had, seem to start from around £550 upwards. We had this type of thing...
  18. D

    Wheelchair advice pls (UK)

    It is a lot of money, as I said we couldn't have afforded it if motablity didn't make it possible, but I know not everyone could do that. I thought I'd mention it just in case. :) Something I do know you can get which will attach to a regular self propelling wheelchair is something called a...
  19. D

    Wheelchair advice pls (UK)

    Hi, plum I have this one http://www.gerald-simonds.co.uk/catalog/product.php?CI_ID=216 from that dealer rented through motablity as buying outright would have been impossible for us. We needed a wheelchair that would fold to go in our car which isn't huge, but which could be used by a carer...
  20. D

    Sick but never sick

    Exactly the same. At school just before I was diagnosed, I was in a constant cycle of getting a cold/ bug/ virus, crashing out, struggling back to school working myself into the ground trying to catch up again, getting a cold/ bug/ virus, crashing out, struggling back to school working myself...
  21. D

    Social Media - Community advocacy fail. Why?

    Yes, that's a very good point, Bob about things getting lost amidst all other requests. That's why I thought it might be interesting to try it with the chilli challenge first specifically aimed at the YouTube crowd, and see if people pick it up? Vloggers for example, are always looking for...
  22. D

    Social Media - Community advocacy fail. Why?

    Like many others I dint have social media pages myself. While I will browse them occasionally, i don't have FB or Twitter or anything else like that because energy is a finite resource (don't we all know it!) and I just don't have enough to juggle several accounts and interact on all of them. I...
  23. D

    Has anyone appealed to celebrities/philanthropists to help us?

    I'm certainly willing to try my best if you think it would help, as I say I've never really done much of this kind of thing myself but I'm certainly willing to give it a go where I can. I think you've done great work on this so far by the sounds of what you've said, so I'm totally willing to...
  24. D

    Has anyone appealed to celebrities/philanthropists to help us?

    I would think that if he's gone to such lengths to preserve the privacy of his partner then we should respect that. Others may disagree but I would find it massively inappropriate about trying to approach him if he's a very private person and doesn't want a public presence. Just my two pence...
  25. D

    Has anyone appealed to celebrities/philanthropists to help us?

    Good point! I'll edit the Main post. :) Many thanks again to Red Viper, you are doing some great research work by the sounds of it!
  26. D

    Has anyone appealed to celebrities/philanthropists to help us?

    I kind of tried to weave that thought too with; "Such patients beforehand often spend years, and even decades, trapped without hope of recovery or sometimes even understanding, while they suffer neglect or even abuse because they have the misfortune to suffer from a neurological disease which...
  27. D

    Has anyone appealed to celebrities/philanthropists to help us?

    Sounds like a good plan of action. Thank you once again for your efforts in providing a template for me to offer my thoughts, i'd never have had a clue to how to get started you inspired me.:) I thought I'd leave it with other people to do with it, I.e. Editing, re-writing and sending on, as...
  28. D

    Has anyone appealed to celebrities/philanthropists to help us?

    Here's my attempt. I've taken Red Vipers terrific efforts and adapted it, mainly changing 'I' to 'we' as I think it's more powerful and adding detail about children etc. many thanks for the structure, I wouldn't have known where to start! :)I hope others will do the same to mine if they think...
  29. D

    Has anyone appealed to celebrities/philanthropists to help us?

    I think it's very very, good. I would suggest changing the wording from 'I' to 'we' making it clear we are a collection of voices, and making it clear that this affects hundreds of thousands in the world, and a lot of children. I spent this morning writing my own version based on red vipers, but...