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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. EnduringAngel

    baclofen/ deep sleep/ increased igf and growth hormone

    Thanks so much. @heapsreal with the studies you have mentioned before, can you help me understand them, sorry I'm being a bit thick. Are they saying 10mg or 20mg is better for producing more GH? would even higher doses produce more?
  2. EnduringAngel

    baclofen/ deep sleep/ increased igf and growth hormone

    My GP has just agreed to give me baclofen. I also have GH deficiency so thought it may help. Can anyone advise what dosage to help with increasing GH? is this at night, or take throughout day? Any help appreciated :) And GG which anti depressant helped you? A x
  3. EnduringAngel

    zopiclone versus zolpidem which is better?

    Thanks for that people. So so true about the eating, not in my sleep though thank goodness, but after I've taken them I simply have to eat! gonna get huge at this rate. I was on nytol for like 10 years until I realised it was masking a possible mast cell disorder, still waiting to get diagnosed...
  4. EnduringAngel

    zopiclone versus zolpidem which is better?

    Anyone have any views on which is better for people with ME? Any experiences you would be able to share would be great. My sleep is so so bad.
  5. EnduringAngel

    Growth Hormone Deficiency

    Yes am def going to give it a try, just wondered if anyone had any tips on when to take it and what to expect. I have nothing to loose by trying it, but am doubting it will work, as my sleep disorder is my main problem. But the NHS dont seem to want to know about that *bangs head on desk*...
  6. EnduringAngel

    Growth Hormone Deficiency

    I have at long last been diagnosed with Growth Hormone Deficiency in the UK and am about to start a trial injecting. I wondered if anyone else had this experience? Am a bit scared as I don't know about the cancer risks, and I wonder if I should fight the NHS to sort out my other issues first...
  7. EnduringAngel

    Overactive immune system & vaccinations - advice

    Apparently MBL is high in auto immune conditions such as lupus. http://arthritis-research.com/content/14/5/R218 I wonder if this is another ME related finding many of may have, indicating a new auto immune condition. Or could be possible missed lupus diagnosis?
  8. EnduringAngel

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Just a comment about it, I havent been able to read it all, but I did notice this statment "Most people with systemic lupus erythematosus (SLE) will have a positive antinuclear antibody test (ANA), but ANA is usually negative in ME/CFS patients. Thus the ANA test is a useful tool to help...
  9. EnduringAngel

    Curcumin and HPA Axis Dysfunction

    I have read online that curcumin is good for pain, candida and immune system, is this correct? Also I seem to read conflicting info about what brand or type of cucurmin to take, can anyone help with this? I had previously been taking LDN but it keeps making me feel too viral even though it works...
  10. EnduringAngel

    far infrared saunas VS epson salt baths

    Thanks so much for your replies. Basically I am severely ill and trying to sell as many possessions as possible to get some private tests done. I hardly have used my sauna, but I paid a fortune for it, im not well enough at the mo to use it, but hope in the future I may be. I didn't sweat much...
  11. EnduringAngel

    far infrared saunas VS epson salt baths

    far infrared saunas VS epson salt baths I was just wondering which of these is better for detox? Also do they detox different things? Which is better for heavy metal poisoning? Any advice appreciated. A x
  12. EnduringAngel

    Gastroparesis, POTS EDS etc (treatment UK)

    I had terrible side effects with metoproclamide and although Domperidone is the next one used and does have less side effects I refused to take it after reading this weeks newspapers reports about it and the number of deaths it has caused and is now being investigated. Check out dr myhills...
  13. EnduringAngel

    Treatment, recovery, where to start?!!!...

    I have been ill for a decade now and each year have declined more and more. Am now at around 10 or 15 % on Dr Myhills fatigue scale. Nothing I try works, I have no family or friends and am struggling to get online much or do my own research anymore as its hard to take in. I really feel I need...
  14. EnduringAngel

    ?underlying connective tissue disorder

    Dr Byron Hyde in his book mentions the link between ME and connective tissue probs, esp EDS3. Professor Rodney Grahame mentioned above is Europes top EDS person, he works in UCH London. You can be genetically tested in the UK for four out of 5 types od EDS. EDS3 is the same as hypermobility...
  15. EnduringAngel

    Duloxetine/Cymbalta and ME/CFS

    I think LDN may be a good alternative. Thanks so much for comments. X
  16. EnduringAngel

    Breakspear Medical in the UK

    I use a blanket I don't get to use it often as don't have much space. But when I do it's great. I hope one day to move and get a bath as epson salt baths are awesome. A x
  17. EnduringAngel

    Duloxetine/Cymbalta and ME/CFS

    Yes I agree with you now, since I posted that message I took an overdose trying to come off it. Am fine now I've been without it for months. I looked into it and several people committed suicide during duloxetine trials, am shocked it made it to the market.
  18. EnduringAngel

    Question your ME/CFS diagnosis any medical persons please read

    I know, its crazy!! but that is the British NHS for you!! we are all label seeking hypochondriacs!
  19. EnduringAngel

    Question your ME/CFS diagnosis any medical persons please read

    I think it can do, certainly more than ME in terms of being taken seriously, it also meant I was reffered to a neuro gastro drs about my stomach which turned out to be gastroparesis. No I haven't removed the other diagnoses as I still believe I have them and they are seperate illnesses...
  20. EnduringAngel

    Question your ME/CFS diagnosis any medical persons please read

    My advice would be to see prof graham, uk top specialist, as some people dont dislocate and are borerline, another dr, a member of his team said I didnt have it, or actually said they wouldnt diagnose with me with it as I had too many other diagnosis!! :O I complained via pals, dr was lovely...
  21. EnduringAngel

    Question your ME/CFS diagnosis any medical persons please read

    The same thing happened to me, but you could still have ME as well as EDS, Dr Hyde says they can often go together. The people in london NHNN treated me like poo, and it's been two years and still don't have my meds, as the waiting list is so long. I wish I was well enough to go back up north...
  22. EnduringAngel

    Comment by 'EnduringAngel' in 'Diagnoses To Date.'

    They will only prescribe me that one. when i had my DHEA levels tested by dr myhill I think they were ok. Its just low dose hydro, I thought under 15mg was ok? A x
  23. EnduringAngel

    Circadian Rhythm Problems

    Do you feel you have any problems breathing at night? may be worth looking into nasal resistance and using something like a nosovent.
  24. EnduringAngel

    ME, EDS, fibro BREATHING/SLEEP PROBLEMS, PAIN, NARROW NOSTRILS, JAW ETC

    Hello peeps. I was wondering if you could help me, apologies in advance if this doesn't make much sense, my brain isn't working great today. I have had breathing problems since I was a kid, but even after I had my tonsil and adenoids out, I still remained a mouth breather. Since getting sick...
  25. EnduringAngel

    Should Vip Dx have any obligation to refund patients that were tested for XMRV?

    I realise this thread is old now, but was wondering if anyone has bad any luck in trying to get back a refund from VIPDX? I understand what you say about about it being difficult to prove intent to defraud, however if dr M is right then there is, as she says they continued to sell tests after...
  26. EnduringAngel

    POTS DOCTORS UK

    Thanks so much for the advice, yes I do tell them all what I'm taking, but I often wonder how much notice they take. The UK drs are so ignorant of ME that I'm left trying to play at being my own drs but its hard when my brain is so confused I can't read much as cant take it in. They never told...
  27. EnduringAngel

    POTS DOCTORS UK

    Hiya well that is their view but its not mine. As I also get so many symptoms of ME, painful glands, lymph nodes, problems with thyroid, adrenals and sleep. EBV problems. Dr Hyde says a sub group of patients get both EDS and ME and I think I'm one of those, as I also have positive ANA and HLB27...
  28. EnduringAngel

    POTS DOCTORS UK

    I am so sorry to hear ill you are. I did ask the NHS POTS nurse about IVs and she said they didn't believe they were helpful, which I think is rubbish and just NHS code for we won't fund it! I have some stockings on order so will wait and see what happens. :) Do you find salt helps?
  29. EnduringAngel

    POTS DOCTORS UK

    I have been on ivabradine for years, and now they want to add midodrine to it, and get my GP to monitor me. But the problem is they have told my already skeptical and scathing GP that the diagnoses of EDS, POTS and gatro, explain all of my symptoms, and there is no point in doing any more tests...