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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. D

    What do you do all day?

    What are you symptoms
  2. D

    Head pain

    Thks for replying
  3. D

    Head pain

    Hi All I would like some advice my only severe symptoms Are severe head pain I get daily and have had for last 4 years The pain is fine when I wake up then it starts mid day and lasts till evening that goes it the worst pain Sides top middle of head I’ve tried over counter meds, beta blockers...
  4. D

    This helps me,,, but why -- [Cold showers/baths]

    Hi thanks for replying what is T3 yer if I have a cold bath my pain goes for 5/6 hrs also which I find really strange if I drink alcohol the next day again I have no pain for 24hrs why would this be It happens every single time
  5. D

    Head pain every time

    Can anyone help every time I do a little exercise or go slightly over my allowed energy level two days later massive head pains and back of eyes ache this lasts for two days then okay My doctors don’t have a clue any advice Would be nice and any pain relief suggestions because nothing touches...
  6. D

    No pain after alcohol

    When I drink alcohol I have no pain whatsoever for generally two days. Then then the pain returns. Obviously I don’t want to drink alcohol all the time I am wondering is there any medication I could try to substitute the alcohol I would love to know why this is happening
  7. D

    Who should I see

    England
  8. D

    Who should I see

    Fatigue l get only if I try to exercise which can last for 3 or 4 days. I just find it strange I only have the above symptoms from the neck up And have been told it’s CFS
  9. D

    Who should I see

    Hi Everyone I will keep this short, following a bad virus 3 years ago I was told by a specialist I may have CFS. My symptoms are for the last 3 years Head pressure pain and pain in my neck glands not swollen just pain. If I try to exercise 48hrs later the head pain and neck gland pain can be...
  10. D

    Does anyone think they could have something else?

    I have been told I have CFS by doctors I always find it strange my only symptoms are severe head pain and pain in my neck glands which are brought on by exercise very strange but it’s ruined my life not improved in 3 years
  11. D

    What did you have ruled out for diagnosis?

    Hi Your post seems similar to mine I was 100 miler Bike rider 3 years ago now if I rest enough I can work in a office no exercise if I go over my limits I get severe head pain and pain in my neck glands, I have no pain anyway else I’ve tried most things then ran out of money know I live in...
  12. D

    What effect does getting drunk have on you?

    Next day and day after I have no pain at all it’s very strange,,,,
  13. D

    This helps me,,, but why -- [Cold showers/baths]

    Hi Wookiee Thanks for replying yes the cold baths are awful But I get relief for almost a full day I submerge my full body I dread it I do suffer with high blood pressure but I don't feel this is the cause can high blood pressure cause severe head pain,,, thanks for some great advice what helps...
  14. D

    This helps me,,, but why -- [Cold showers/baths]

    Hi Hip thanks for replying,, its not like a normal headache. Its located sides of head, top of head and back of head,, never get pain in the forehead or front of head,, the pain lasts 2/3 mins then goes,, then will reappear within a few minutes feels like someone is squeexing spelt wrong,, lol...
  15. D

    This helps me,,, but why -- [Cold showers/baths]

    Hi Ruth thanks for replying, yes may look at seeing another specilist doctor,,, ive had mri scan on head,, but all seemed ok just dread during cold bath,, yes meditation also helps darran
  16. D

    This helps me,,, but why -- [Cold showers/baths]

    Hi Everyone I dont often post,,, but i know there is alot of great advice on here,, i have had this illness only 36 months,, i suffer only with severe head pain and pain in my neck glands, no pain anywhere else, and no fatigue,,, its there 3/4 hrs a day,, alot will suggest i dont have cfs/me. i...
  17. D

    This is working for me

    I would discuss with your doctor first, maybe do it gradually
  18. D

    This is working for me

    Hi Chris We are dealing with the worse illness, with very little help from the medical world Stick in there, the cold showers are definitely doing something what ? I don't know
  19. D

    This is working for me

    I have recently placed a message with regards to me having mild to moderate CFS I only have 2/3 symptoms head pain/ pressure, pain in neck glands I have tried numerous different medications and treatments all to no avail I have recently tried cold showers or cold baths twice daily I can can...
  20. D

    what would you do

    Hi Yes i get more success from cold showers then any other treatment, for an example, if i feel the pain/ head pressure pain in neck glands, soon as i get a cold shower lasting 3/4 mins, i can last almost the full day without any pain at all. i dont know what effect it has on my body but i know...
  21. D

    what would you do

    thanks for the link, will have a good read, yes i believe i have been tested for 90% of them
  22. D

    what would you do

    Hi Everyone Three years ago i was a high level road race cyclist, who would incorporate running and other sports into my daily life, like alot of people on here i got a virus, fever and severe fatigue, numerous blood test showed nothing, MRI brain Scan like wise, obviously depression kicked in...
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    Alcohol why does this work

    Hi Glyon yes i am on armtriplyne 25g
  24. D

    Alcohol why does this work

    i will drink 4/5 pints a week and did prior to my illness, i just notice the following day i feel great and have no pain, it occurs every single time time
  25. D

    Alcohol why does this work

    looking for some advice, if I drink alcohol on a night which is once a week, why the following day do I feel great with no pain, I as wondering what medication or supplement I could use to substitute the alcohol and have the same affect.
  26. D

    Who should I see

    Thanks Justy
  27. D

    Who should I see

    I live in Hessle, England
  28. D

    Who should I see

    Hi everyone I would like some advice on who I should see. I have changed my doctors twice. Because their knowledge on ME is poor. I have had all the blood tests x5 all normal, tested for lymes disease / mono etc all come back fine. One doctor told me I have ME. My symptoms are mild compared to...
  29. D

    Why does this give me relieve

    I have had blood tests done three times, tested for lymes disease, glandular fever all came back negitive
  30. D

    Why does this give me relieve

    Hi Valentijn A good example is if a went for a long walk 1hr,, two days later the symptoms of head pain, pain in glands And ear ache begins and will last 2/3 hrs a day for a few weeks then tail off if I pace myself properly Isn't this PEM