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

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  1. C

    Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist servic

    You might be interested to know that I was referred to a cfs clinic by my Dr due to "unexplained excessive fatigue and hypersomnia. At the time I was taking Fentanyl 75 patches and oral morphine when needed for severe pain. I had previously been told I had either Ankylosing spondylitis or...
  2. C

    No Further investigations

    Have you had difficulty getting your GP to perform tests after you have been diagnosed with me/cfs. Have you had to pay to get the tests done only to find you were suffering from another illness alongside the ME eg. diabetes etc. Have you, like me, found that you were wrongly diagnosed with...
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    Endometriosis, do you have it?

    Too much negativity in the world, I don't need to add to it. Besides I have no more gynae worries now, except coming off HRT.
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    Endometriosis, do you have it?

    Hi Tuliip. I have had ME according to my specialist since contracting measles at 5yrs old. The last 15yrs have been lost to ME. At least I had a life until the illness overcame me. I am now 54. I was diagnosed with endo after having two children. My second pregnancy ended at 20 weeks: missed...
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    PACE Trial and PACE Trial Protocol

    I have only been able to read a few posts so forgive me if someone has already said something similar. I had a visit from my Occupational Therapist on the ME team. She has spoken directly to Peter White via the Yahoo site for ME NHS workers. Their is immense disquiet amongst the OT's in the ME...
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    A Survey to Define the Toll Disbelief Takes on Fibro Patients - You Can Help 2/16/11

    I've done the survey. It takes about 30mins and it's something we can do to highlight the isolation and disbelief we suffer. I would encourage all sufferers to complete it.
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    Psychology Eases CFS new research pub in NY times

    I live in the UK and I feel totally without any healthcare now, completely thrown out of normal society. Totally used by people who know how to manipulate the system and keep cashing in on our misery, and abandoned by the medical profession who are fed up with us. I feel I can't fight back, I am...
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    NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

    This trial was set up by psychiatrists to ensure CBT and GET were proved to be the correct treatments. They screened out anyone with neurological symptoms, all under 18's and anyone deemed to have cfs seriously. Part way through the study the criteria were relaxed even more as not enough...
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    Phosphatidyl serine

    I started PS 2 weeks ago taking 400mgs. I am now sleeping soundly the minute my head touches the pillow until 8-9 am, sheer bliss. Not sleeping has been a real problem. I feel better, but I also started doing Rich's methylation protacol at the same time. The PS is mega expensive and I can only...
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    mitochondrial test results. need help to understand them

    Will do, and thank you all for your interest, it helps a lot.
  11. C

    mitochondrial test results. need help to understand them

    I've been on Fentanyl for 10 years, morphine for 8 yrs before that. I've just been given more and more as the pain broke through. I totally agree that reduction should be under the care of the pain clinic but I have to wait for an appt, and I've been waiting since Nov and suspect it will be at...
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    mitochondrial test results. need help to understand them

    Hi August59. I'm ahead of you---after getting my results and then the explanation from Richvank I decided to reduce my fentanyl by half. Horrible withdrawal symptoms and bad pain!! ( going to try acupunture) Then I told my GP. Not the right way to do it!!! I am now out of bed, voice returned, no...
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    mitochondrial test results. need help to understand them

    Thank you so much for your explanation Yes I was a nurse until I had to retire 18yrs ago. I've been ill for 50yrs, had to do 6 mths extra training to cover all my sick leave! We used cetrimide to scrub up at least 20 times a day. The brain refuses to remember most of my theory, it is so...
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    SODASE TEST RESULT/manganese deficiency help.

    Thanks Justy. The information is really helpful. A treatment I can enjoy!!!!!
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    SODASE TEST RESULT/manganese deficiency help.

    Hi Justy. Your thread is helping me to understand one of my blood results, thanks. The Cetrizine that is blocking my gene is detergent/disinfectant, you are thinking of cetirizine. I was a Nurse and had to virtually bathe in the stuff for years. No idea how to get rid of it so if anyone can tell...
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    SODASE TEST RESULT/manganese deficiency help.

    Acumen Lab in Tiverton Devon do the DNA adducts test at a cost of 95. Mine showed cetrazine stuck on my DNA at the gene point that deals with cortisol and aldosterone. It explained a lot! try to save up, it's worth it.
  17. C

    Website explaining blood test results

    has anyone found a site explaining mitochondrial function test
  18. C

    All the different test's, can we list them?

    one more Mitochondrial function test by Acumen Ltd Tiverton Devon England Including DNA adducts, and mitochondrial membrane TL protein studies
  19. C

    mitochondrial test results. need help to understand them

    I've just had my mitochondrial function test results back and I'm all at sea. Is there a molecular biologist out there who can explain in baby language!!! Or someone who understands these things. My Dr only gave me the briefest of explanations and I've forgotton it !!!! Any help would be...
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    Selenium helping nerve pain/mood? Also: why does hot water help bring relief from ME?

    Hi there. I am very lucky to have a jaccuzzi, ( ebay). It is the one thing I could not give up. When the pain starts I get in it and the pain nearly always eases after an hour. My spinal pain is intense between the shoulder blades like a hot hard ball pressing in and a steel band around my chest...
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    Blood Pressure Medication Breakthrough by Michael H. Alderman, MD

    That was fascinating reading!! My mother in law has had her compliance questioned, and I know she takes her meds. This could explain it. Why is it that changes to medical practice take so long? Treating stomach ulcers with antibiotics took 17yrs before the medical profession listened to the...
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    Age Of First Symptoms?

    I was diagnosed with ME a year ago but the Doctor thought I'd had it since the age of 4-5 when I had measles. Since then I became ill with numerous viral and bacterial infections plus bouts of abdo pain(one ended up with an appendicectomy). I've had endometriosis and had all repro organs removed...
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    Dr Meirleir can you recommend him?

    Hi Sushi. Sorry I haven't got back sooner, I've not been too good. The problem I have is that I am bedbound so train travel is out, I was going to travel in the bed of our campervan, daft idea, but I am so ill and want so much to feel better. I've been really bad for 2yrs but have had ME for...
  24. C

    Does anyone get dry eyes

    Hi 3CFIDS@ourhouse. I totally understand the sneer. The rheumatologist I saw couldn't get me out of his clinic quick enough. Gave me the diagnosis of fibro and told me he didn't need to see me again. No explanation, help of any sort, just there's the door!! In 2011 it will change, it must...
  25. C

    Does anyone get dry eyes

    Just read what you said about lupus. I asked rheumatologist if I had lupus he said no, but then I didnt help him with brain fog interference!!!!!
  26. C

    Does anyone get dry eyes

    Hi Ric. Thanks for your info. I've had intermittent leucopenia, all tests done were 6+ years ago when on sulphasalazine so could have been a result of meds. I have peripheral motor and sensory dysfunction mainly on the right side lower leg/foot and arm/hand. Dry mouth with added blessing of...
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    Does anyone get dry eyes

    forgot to add, I'm ANA pos, speckled pattern, already got ankylosing spondylitis, and have reduced kidney function with intermittent glycosuria. Should have posted when I could think a little. Is that all ME? This disease is a b******! I pee very little, (fluid hangs around my hands and legs)...
  28. C

    Does anyone get dry eyes

    Oh heck! Thought I'd found a better illness to have! Still I might ask my opthalmologist to test me cos all my symptoms got worse when I had to stop sulphasalazine 7 yrs ago. Thanks for the feedback. I'm still at junior stage for learning about this disease.
  29. C

    Known cases of CFS misdiagnosis.

    An opthalmologist has just told me I have seriously dry eyes,and now my husband thinks I may have sjrogens disease and not ME. I have to go back in the new year so I'm going to ask. It took 6yrs of red sclerotic eyes and numerous trips to the surgery before I got referred,and then 4trips to the...
  30. C

    Does anyone get dry eyes

    I had to go to the opthalmologist and he says I have seriously dry eyes. I'm now having to put eye drops in every 2 hours and gel at night. Is anyone else affected. My husband is now wondering if I have Sjrogens disease and not ME. I'm seeing the specialist again in the new year and will ask him.