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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Ellie_Finesse

    Is there anything I can do to reduce PEM?

    I know how you feel, I am in the same position as you. I don’t think there is much you can do apart from resting, pacing and staying within your envelope. That’s what I have done. Whilst I am unable to do much and often bedbound, by doing the above I have managed to lesson the crashes so it’s...
  2. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    It’s quite common for people to have receding gums, although in EDS more common. There is quite a strict criteria for EDS diagnosis now. You are probably right and it’s more deconditioning/ME why you have weakness.
  3. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    No it’s not an EDS problem. I have EDS and have no problems giving blood. My husband never used to have problems giving blood, but now he does and he doesn’t have EDS. With EDS you bruise easily though, I’m always covered in bruises and usually have no idea how it happened lol.
  4. Ellie_Finesse

    Brain inflammation & temperature

    I have a lot of triggers for my Migraines, heat being one of them. Heat also worsens a lot of my ME symptoms, dizziness, vision, sickness, migraines etc. I find an ice pack does help in those times for those symptoms, but whether it helps with inflammation In the brain, I don’t know. Edit: I...
  5. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    @Rufous McKinney I am just trying to working out what you meant by: Do you mean you have had genetic testing done to determine you have EDS or that you did something like a 23Me? My understanding is that with 23Me, it doesn’t mean you have what is found. I don’t really understand how 23Me type...
  6. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    @toyfoof mentioned does it mean she has EDS, I answering that and giving an opinion of what I think about weakened connective tissue being due to ME. Connective tissue is something that goes right throughout your body which is also attached to organs, veins etc. The only information I have ever...
  7. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    Gut issues don’t mean you have EDS neither does having migraines. As for the scarring finger tips hands and papule’s, I’m sure lots of people have those without having ME or EDS. our hands are usually the first to age quickly. Hypermobile EDS (HEDS) has no genetic testing as of yet but all...
  8. Ellie_Finesse

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    Yes but then I have EDS as well, along with chronic migraines. I don’t think connective tissue issues have anything to do with ME. There are many people that have EDS and ME. What I will say though, is that for me, ME EDS and migraines feed into each other, making my ME symptoms worse and my...
  9. Ellie_Finesse

    PIP Assessment-am so nervous

    Hi @lior have you got someone who lives with you, who maybe able to help with helping you collate the information? I was lucky because I have my husband who often butts in when he sees that I'm struggling to explain or can't concentrate. I am also fortunate to have good friends and family around...
  10. Ellie_Finesse

    PIP Assessment-am so nervous

    @hellytheelephant I am so sorry that it's taking so long, it's so unfair, it beggars belief how they get away with doing this to genuine people that are in desparate need for help. Do you have any idea of' how long it takes to go through appeal? Good luck with your Claim, I hope it isn't too...
  11. Ellie_Finesse

    PIP Assessment-am so nervous

    I am so pleased for you @trishrhymes it was relief for me too, have been stressing over it over last 3 months lol @hellytheelephant how far are you into your claim? I hope you don't have to wait too long, good luck :)
  12. Ellie_Finesse

    PIP Assessment-am so nervous

    Just wanted to let you all know that I got PIP :) not sure what rate I have got but it looks like I have got higher rate mobility and lower rate for care. I can't believe I got it first time without any problems. Have heard so many stories of how claimants have struggled to get it! For all...
  13. Ellie_Finesse

    A question for you lovely people please? About something I read on FB in the ME chat room

    Someone wrote this on there:- 'Hi guys I'm looking for some retweets and sharing of this if possible. Our lovely taoiseach or prime minister was quoted as saying that the cdc says there is no chronic lyme disease and that people who say there is are on par with people who say they have chronic...
  14. Ellie_Finesse

    PIP Assessment-am so nervous

    Thank you everyone for your kind words it is very much appreciated :) I had my assessment this afternoon, I think it went ok although I worried throughout that my words word get twisted but think she got what I was trying to say. She asked lots of questions which sounded like she wanted a more...
  15. Ellie_Finesse

    PIP Assessment-am so nervous

    Today is the day of my PIP assessment, I am so nervous! I have heard so many stories of people's experiences, and not good ones. I am assuming they just talk to to you to see if either you have more information and/or if what you said on your forms is correct? I know I have to stop fretting...
  16. Ellie_Finesse

    My son has just been diagnosed with Autism

    Hi @allyann I am really sorry to hear about your son and my heart goes out to you! I also have a son who has autism, so I really do understand what you are going through right now. There is lots of help and support out there, from information and support from support groups. I'm not sure how...
  17. Ellie_Finesse

    Struggling with work at home

    Hi @wearywriter I am really sorry that you are struggling at moment. I have been too tired to read everyone else's advice so I skimmed over most of it to see if anyone mentioned about a software you can use to help with your writing. The software is called Dragon, It turns spoken words into...
  18. Ellie_Finesse

    Have you tried Oxygen Therapy and did it help you?

    I was tested for sleep apnea recently and turned out I didn't have it. Although I do have some sort of sleep disorder which I think needs further investigation. Tackling one thing at a time is what I am trying to do, but its hard taking the slower path. I tend to get extremely frustrated...
  19. Ellie_Finesse

    Have you tried Oxygen Therapy and did it help you?

    A friend of mine who has ME and Fibro went to a charity run MS Centre, where they offer Oxygen Therapy as a treatment to help alleviate symptoms. They also take on patients with fibro and ME. I am considering giving it a try, and I was wondering if anyone has tried the above treatment and...
  20. Ellie_Finesse

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    I am really sorry this happened to you @PhoenixDown. I have read way too many stories on here that are shocking am appalled that in this day and age people are being treated like this. Sending you and everyone else a much needed hug. :hug::hug:
  21. Ellie_Finesse

    Please help with my postgrad diploma psychology research project!

    Done @seekinganswers789 All the best with your studies
  22. Ellie_Finesse

    Leeds ME/CFS clinic (UK)

    Hi @katiecupcake At the end if the day you have to do what you feel is right for you. Everyone who has commented on this thread are giving words of caution, in regards to retraining the brain to cure you. Sometimes it may not come accross that way because its so easy to misinterpret text...
  23. Ellie_Finesse

    Hepatitis B/other vaccines! Are they ok to have for PWME?

    When work hired a nurse to come in and have the next wave of vaccines done those that had already had it were asked to have a blood test to see if they were immune. Mine showed up that I wasn't. So I was put forward to have it done again.
  24. Ellie_Finesse

    Hepatitis B/other vaccines! Are they ok to have for PWME?

    SEN = Special Educational Needs I forgot to metion that we also have children with severe behavioural and unfortunately some of our children bite. They offer and pay for Hep B vaccinations because there is a risk we can contract it. Sorry should of made that clear when explaining. I have...
  25. Ellie_Finesse

    Hepatitis B/other vaccines! Are they ok to have for PWME?

    The school I work at is a mainstream school with specialist unit attached. I work with children from mild to severe SEN. We have a mixture of SEN children at our school. You are right when you say usually working with children wouldn't require having Hep B. But the children I work with are high...
  26. Ellie_Finesse

    Hepatitis B/other vaccines! Are they ok to have for PWME?

    After seeing @charles shepherd thread, I was wondering what the thoughts were of everyone here regarding the thread title? Maybe they have some experiences that they wouldn't mind sharing! Just a quick background as to why I have given this thought! Within my job their is a risk of getting...
  27. Ellie_Finesse

    Fatigue torture- how do you deal with it?

    You are not alone! The last bit of the paragraph hit a core for me, its exactly how I feel. 'Its not so much the weakness itself, but the intensity is so great its unbearable'. Explaining what it feels like to people who don't understand is really difficult. When I experience it, I am not...
  28. Ellie_Finesse

    ME/CFS Doctors/Clinics in UK

    Sorry @Hilary I was meant to tag and direct question to @Uno..... Duhhh silly me lol I had a lovely Christmas thank you, despite another bad crash :(....... I miss that too, my kids are a lot older now 15 and 19! Hi @MeSci, when I was searching the internet for NHS specialists in ME, I came...
  29. Ellie_Finesse

    ME/CFS Doctors/Clinics in UK

    Hi @Hilary have you seen Dr Chaudhuri before? It would be interesting to know other peoples experiences when seeing him. I know he does CBT and GET, its not why I am going. I to go anywhere else where a Psychologist or Psychiatrisy was clinical lead! The main reason is to get a diagnosis...
  30. Ellie_Finesse

    Brain replacing something you're trying to recall with something else

    I can echo what everyone has said...... My husband is sweet, he smiled and finished off my sentence when I was having a convo with my sister. It was so frustrating, one minute I knew what I wanted to say and within seconds it was gone..... o_O