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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. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    I did ask and they told me it was a standard one and that it's used in most operations. I could request the papers from the operation. I was able to walk around the hospital after id woken up. It was astonishing how all of a sudden id improved. The only things that help ease my fatigue are...
  2. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Hi guys Its been a while since i visited here. Since i last posted i had a lump removed from my thyroid. It's not stopped the swallowing and tongue spasms however. The swallowing condition is still an issue if im trying to eat anything that requires a lot of chewing. It's been a miserable...
  3. AndrewB

    Testing for Difficulty Swallowing

    Hi all, I recently posted that ive been having extreme difficulty swallowing and mobility problems with my tongue (my tongue also sometimes tingles, like nerves are moving kind of feeling, hard to explain) all of which started during treatment for a chest infection. (antibiotics). When it...
  4. AndrewB

    Swallowing

    apparently the antibiotics i was on when this swallowing issue developed are known to aggravate a bulbar reaction in some patients, i tried to tell the docs this in hospital but with my not being able to speak due to lack of tongue mobility and swallowing being so tough, added to the fact they...
  5. AndrewB

    Swallowing

    hey Flashster im having the same problems, on top of being bed bound. i cannot swallow solids and my throat feels too weak to get anything down. i live in manchester and this developed during a course of anti-biotics about 4 weeks ago now. my gp told me to present myself at A & E which i did...
  6. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Hi Willow, My tongue isn't swollen, nor is my throat. It's the mobility in my tongue ive lost, and the ability to move my throat muscles in order to swallow. Im getting enough liquids down me to live at the moment, but should this problem get any worse, i wouldn't be able to swallow anything at...
  7. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    He was expecting those things would have been done on Monday. Im just not physically able to return to the hospital at the moment, im completely fatigued, i couldn't tolerate the travel at the moment. My GP says im the worse case of M.E he's ever seen and wants to pass my medical care to an M.E...
  8. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    no x-rays or MRIs i told them ive been getting painful 'pressure' headaches, and that ive been getting an odd pain in the very centre of my chest. They took blood and i had a camera look in my throat by an ENT specialist, but that was all. the only abnormality in my blood was a raised white...
  9. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    There's an M.E specialist coming out to see me next Monday. After the hospital visit ive now fully relapsed into being completely bed bound, and my throat is getting worse. My GP was appalled at the Hospital for discharging me so soon but he said not all Dr's accept M.E as a physical illness...
  10. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    ive not idea what to do now. should i demand a scan in case this is cranial nerve damage ? of the 3 years ive had M.E ive never been unable to swallow or had mobility problems with my tongue.
  11. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Ive just returned from the hospital and i basically wasted my time. They put a camera up my nose, saw nothing, took a blood test, said aside from slightly raised white cell count nothing is wrong. The Dr told me it must be part of the M.E and tried to give me antidepressants, which i wont take...
  12. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Change of plan, my GP want's me to go direct to ER so that the testing for M.Gravis can be commenced straight away. If it turns out that it's not M.Gravis, then i really dont know what i'll do.
  13. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Ive booked an emergency appointment with a neurologist in a private clinic. The appointment costs £225 pounds and any testing would cost even more, but i just don't think i have three months to find out via NHS as this is getting worse each day. Thank you everyone for you replies and i hope to...
  14. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    My Dr visited and he didn't really know what to suggest. He gave me the same antibiotics ive recently had, which i was taking as this throat muscle weakness developed. I took some today as prescribed and it made my throat and tongue worse i took some Zopiclone and the choking and tingling tongue...
  15. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Hi Kara, I replied PM. Still very much having problems.
  16. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    im resting in bed. i feel really ill but im scared to go into hospital. last time i had to go in they ignored me and i nearly died of potassium loss. they know i have m.e and its still ignored
  17. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    i think i may need to go into hospital my right side of my face is somewhat numb, and the right side of my tongue is tingling. i awoke not being able to swallow and my tongue and throat feel fatigued and numb.
  18. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    Im allergic to anti-histamines, Steroids and NSAIDs as well. That's why i was taking Tramadol for the pain. My tongue has been like this for about a week now. I also had a chest infection prior to stopping the Tramadol. Ive had this before but not as severe as this. Could this be some kind of...
  19. AndrewB

    I cannot move my Tongue and Swallowing is difficult

    hello all, Ive been in severe back pain and was given Tramadol, which i was taking for several months. I was also taking Zopiclone for sleep. About a week ago, i noticed that i was having trouble swallowing. I also noticed that the Tramadol seem to make this worse, so i stopped taking the...
  20. AndrewB

    Candida Symptoms and Testing

    i called and spoke with the main clinic trreating candida for cancer and fatigue illness. they asked if id already tried any treatment, i havent so i told them this. they were pleased to hear this, and told me not to only try proibotics alone, as that wont cure anything. they informed me that to...
  21. AndrewB

    Candida Symptoms and Testing

    I visited a site that explained the various problems that people get when they develop an overload of Candida. The symptom list is pretty much the precise list of symptoms i get. I took the spit test and it came out just as they said a Candida sufferes would. I juat wanted to ask if anyone...
  22. AndrewB

    EBV and M/E

    hi, ive found this link where people have researched where she was treated, and what possible forms of treatment she under went ; http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1228881 Now i could be wrong, but i thought lots of people, both well and unwell could test positive for EBV...
  23. AndrewB

    EBV and M/E

    How closely are EBV and ME linked ? Ive read that they are two completely different conditions, but ive also read that they are one in the same? Reason im asking, is that when Cher was bed bound, suffering from all of the symptoms that are common in M/E, she was diagnosed as having EBV and...
  24. AndrewB

    activan and aspirin treatment

    hmmm doesnt look good does it. i got a text from my brother saying he saw a news item on these drugs being used to treat M.E. i'll get more info from him and come back if theres anything worth sharing. andrew
  25. AndrewB

    activan and aspirin treatment

    Ive just heard that activan and aspirin used together are being considered as a treatment for ME/CFS ? Has anyone heard this and do we know if it could work ? Andrew
  26. AndrewB

    Article: ME/CFS Recovery/Recovering Stories Requested

    Type of onset acute, fatigue, pain, constipation and feeling sick amonst many other symptoms Age at onset 30 Length of illness first bout, 6 months Effective treatments complete bed rest, zero undue exsersion and no undue medications, d-tox. healthy fresh food and lots of water. Degree...
  27. AndrewB

    Peitition asking for Bio-Chemical research on ME in the UK

    I'll just keep plugging away and making as many people aware of it as possible. Ive got a year to try and amass all the signitures needed to have this kind of debate in parliment. Thanks to anyone who signs it, its in all our benifit to sign as many of these petitions as possible. Andy
  28. AndrewB

    Peitition asking for Bio-Chemical research on ME in the UK

    Hi all, i hope this is the correct forum to use. Im asking all ME patients in the UK to sign this petition asking for proper research to be funded and carried out. Im sure there are lots of petitions set up by the various charity organizations, and they do a great job, but i don't think anymore...
  29. AndrewB

    exercise....doctor keeps suggesting but so hard

    I think everyone's covered all the important info already, rest, pace yourself, don't over do it, as if you end up bed bound your going to feel worse about yourself as a parent. Over doing it is what caused my second crash, i know many of us have different tolerance levels, but i think as a...
  30. AndrewB

    Feel better on Prednisone?

    Hi was given Prednisone before i was diagnosed, after my first bout of M/E illness, and it made me really mentally unwell. Prednisone is known to effect a certain percent of people in a very negative way, i was 'not thinking right' whilst on it, and those symptoms stayed with me some weeks...