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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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Search results

  1. S

    Getting to the Root of the issue - Dorsal Root Ganglionitis

    Nice one Justy, well done. Some Improvements are great. (I think recovery is a long way off, and better quality of life is so important. What area's did your chiro/mctimony work on? Did/do you have the strange flooding/trickling feeling from your spine spreading out across your back and round...
  2. S

    Activity. Weightbearing or non weightbearing

    Sorry to hear you crashed after the three weeks of gentle swimming. Did/do you alter your strokes? For example, did you swim using breast stoke for some time before changing to crawl. Or were you consistent with your choice? Am thinking along the lines of pacing the actions of the body, to avoid...
  3. S

    Getting to the Root of the issue - Dorsal Root Ganglionitis

    A while ago I learned about deep dorsal ganglionitis whilst watching the dvd Voices in the shadows. It got me thinking, as I had inflammation in certain areas of my skull and spine which seemed to feel lilke it spread from those areas, around my body. I booked myself in with a chiro/mctimony...
  4. S

    Activity. Weightbearing or non weightbearing

    A friend with cfs/me and I were discussing cfs/me yesterday. She is able to ride her bike through the village with more ease than walking the route. Was thinking of trying it, bike is sitting in garage ready to go when i am. No hurry though. I find walking tiring and then painful, not as bad...
  5. S

    Another view of adrenal fatigue

    Thanks for sharing Heapsreal, makes interesting reading, plenty to think about and lots more to learn about. :)
  6. S

    Sign Language

    Thanks Willow, much appreciated. :)
  7. S

    Sign Language

    Sushi, now that is dedication :), must have been wonderful to experience. Tell your friend from me, she is a very special person. Gracie, thanks for the link, its somewhere to get started, and a lot to take in, so will look at it little and often, rather than blow my mind. GG, there is so...
  8. S

    Voices from the Shadows

    As you all say, its well worth watching, and too think should be readily available for Everyone to see, it will raise more awareness that way. It also make me realise how lucky I am, not being that ill with it, certainly raised my awareness. Big thankyou to all involved in it. x
  9. S

    Does anyone else have chronic pain at base of skull and neck?

    Please can I ask what DO stands for? Had my 3rd session, it was fab. Very slight tweaks in vertebrae. The trigger points were fine too, AND i have more freedom in my right arm than i have had for about 10yrs so that bits a bonus! hehe. He worked on my jaw again too, and back of skull. He...
  10. S

    Sign Language

    Hi All On my not good days, when I am laying in bed unable to do anything, I always think of you who are much worse than myself, and wonder how on earth you cope. Especially with communication. This led me to thinking if I knew some sign language, it may make my life a little easier and a...
  11. S

    Does anyone else have chronic pain at base of skull and neck?

    I have had a lot of pain and inflammation in my spine, especially base of skull and between shoulder blades. Also tightness and restriction. It has taken me ages to realise the feelings I was getting stemmed from these areas.They seemed to flow or trickle from my skull, down my back, then sort...
  12. S

    Pacing

    Gosh Ukxmrv thats 30yrs too long! Thinking of you. Think I will have my vitD levels done, docs not forthcoming with help as he says i am doing really well. I have been given an address of a recommended company so will get it done myself. Just have been putting it off as not sure what tests to...
  13. S

    Pacing

    Gavman thanks, good choice of words, I totally understand. I think I am just cross with myself for a crash happening when i try hard to keep on baseline. Maybe I am trying too hard? Will put an hour of meditation into today and be kind to myself. :) Ukxmrc thankyou as well, I have been...
  14. S

    Pacing

    Hi all, Am at a bit of a standstill (excuse the pun), with my pacing. My daytime pacing has been reasonably stable for quite a few months, have been quite happy with how its been working out. Have been doing really well, but fallen off baseline a few times and not quite back where I was in...
  15. S

    Live Wheatgrass

    Thank you so much yet again, so much info with so few words, means a lot. :)
  16. S

    Live Wheatgrass

    Thanks again Xrunner for your reply With your retrospect, do you mean you were tempted to push yourself further whilst taking wheatgrass and other products? I am feeling better each day and am trying really hard to stay pacing as I was, rather than be tempted to do oooo just that little bit...
  17. S

    Live Wheatgrass

    I can imagine how much work it is to keep a good supply of it in the bodys system. Luckily I have found a local supplier. For the first two or three weeks I am taking 2oz/30g each morning with apple and mango juice. It isnt cheap, it costs me just over £2 each day. It did cross my mind to have a...
  18. S

    Live Wheatgrass

    Well, I have been taking wheatgrass for 5 days now. I noticed I felt a bit stronger yesterday, and again today. :) I know its early days, and crashes will still happen, but while it lasts, I am going to enjoy feeling a bit better, still carefully pacing. Will try to keep you updated. :thumbsup:
  19. S

    Things I'm grateful for, feel free to add

    Grateful for being in the autumn sunshine this morning, and oh so grateful for my dog yesterday who brought me a sock when i was still in bed at 11.30am, but he did have to wait another half hour before I put it on and got downstairs and into the garden and then onto the settee back in the...
  20. S

    Live Wheatgrass

    Thanks Xrunner, where you taking any other supplements or medication in that year? Why did you stop taking Wheatgrass? How did you find it help you? (Mine comes prepared from a local company, I dont do it myself).
  21. S

    Live Wheatgrass

    Have done a search on here but not found too much info. Do any of you have feedback good or bad about using live wheatgrass? It helped pick me up a few months after I was diagnosed, and I took it for a few months.Now I feel I my body needs it again, so am trying it again to see if it wil pick me...
  22. S

    Does anyone else take ages to heal from cuts'n'bruises?

    I have heard about using tumeric before. Maybe its time i started trying it out. Good advice, thankyou. eta, I really admire you people who have children depending on you. Mine are grown up. I just cannot imagine how you cope and deal with the daily needs of them as well as everything else. I...
  23. S

    Does anyone else take ages to heal from cuts'n'bruises?

    I had a nasty wound on my shin at the beginning of September which needed stitches. I was expecting it to take ages to heal but it didnt. It healed well and in reasonable time. I was wondering if it was due to my body putting iteslf in some sort of relapse which laid me out for a few weeks so my...
  24. S

    what natural to use for pain when cant take medications at times

    Have you or are you in a position to try gentle massage or reiki or the perrin technique. Massage didnt really do much for my pains but reiki made a really good differentce. After a few sessions it improved no end and now I have top ups as and when I need them. I havent tried Perrin technique as...
  25. S

    Bloating of the stomach

    I found eating gluten free products as much as possible really helped with the bloating and feeling uncomforatable. I'm not completely gf free but getting there. I also stopped eating any processed foods as much as possible, and anything artificial. Also I stopped sugar intake unless it is...
  26. S

    Things I'm grateful for, feel free to add

    Grateful for meeting Taniaaust1 and Symphony in chat this morning, they put me back on the right track about pacing, as I have realised I need to back to basics with it. So thanks both. x
  27. S

    what natural to use for pain when cant take medications at times

    Devils claw capsules for inflammation Gentle massage or just rub oil with rosemary in Live wheatgrass each morning Sorry baths dont work for you was just going to try one with dead sea salts in, as it gives me instant relief, pain and dicomfort doesnt go altogether but makes it bearable...
  28. S

    Things I'm grateful for, feel free to add

    Grateful for my bed right now, and wondering how the heck i managed to walk the dogs yesterday with what is going on in my life at the moment. I feel so ill and I feel like I have been like this for weeks and months, not days. Am grateful for the knowledge I have learned since being ill, and...
  29. S

    Does brain fog reduce the spiritual sense?

    When in amidst the 'fog', try to feel deep for the inner light, it will still still be there, waiting patiently for the right time to shine brightly again. Wrap your feelings around your inner light, love it, nurture it, hold it, keep it safe and it will grow stronger and brighter. As you try...
  30. S

    Things I'm grateful for, feel free to add

    Yesterday I was grateful for the sun to shine through my really grubby windows which havent been cleaned for oh so long, and I was grateful that at last I dont mind them being grubby. Today I am grateful I can share yesterdays thoughts with you as now I am registered here and can post. I also...