• 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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Search results

  1. Sallyagerharris

    Hypersensitivity to dental treatment

    I have not been to the dentist since i got ME In 2006. I used to pass out at the dentist before I got ME and i now have severe ME but know I’ve got a couple of broken teeth and need couple of fillings. I have severe ME and know I must go to the dentist but easily get sensory overload. I’ve...
  2. Sallyagerharris

    Partial hip replacement and ME

    My bone scan score 3.6 which is just so so rubbish as 4.0 is the highest reading they give. Bit upset as another life blow …
  3. Sallyagerharris

    Partial hip replacement and ME

    Just an update. I had my bone scan yesterday which revealed severe osteoporosi!! I just laughed as I had a stroke at 55, my hip this year …. Plus super ME. I use a powerchair as cannot stand of walk much. Anyway I’ll now be researching all the treatments. Sort of hoping they find another...
  4. Sallyagerharris

    Partial hip replacement and ME

    Hi Leonora, the nurse practitioner I chatted to has said it’s likely to be zoledronate. 50% reviews fab 50% terrifying!!! Apparently you have it intravenously once a year in hospital and think she said every 3 years.
  5. Sallyagerharris

    Breathlessness and blood oxygen

    I have a smart watch forerunner 255 I think vivosmart. I have severe ish ME since 2006, am 57 and in bed 2-3 days a week with about 2 hours of morning energy so I can sit up and have the very occasional outing … breakfast locally once a month for example. Any exertion mental, physical or...
  6. Sallyagerharris

    Partial hip replacement and ME

    I’m glad to say I seem to be through the worst. Bed / recliner enforced rest is defo helping my ME!!!! The hip and leg are healing nicely. I have a bone scan tomorrow so I can compare the results to my last one a few years ago now. It’ll be interesting to see what they recommend for the...
  7. Sallyagerharris

    ME payback trauma recovery timescale

    Pain and numb mouth and ME brain fog affecting my speech and ability to think, the pain being 7/8
  8. Sallyagerharris

    ME payback trauma recovery timescale

    I broke my HIP on 3rd January and am already way behind on recovery. I’ve noted Alex’s thread on actual healing time. I’m also looking for help on potential timelines on ME recovery times. The trauma I believe was my actual fall, 1.5 hours turning and crawling to phone, 3 more hours until in...
  9. Sallyagerharris

    Partial hip replacement and ME

    Unfortunately on 3 January I fell whilst at home alone, took 90 mins to turn on floor and inch to phone to call my husband. Anyway I’d badly broken my hip at the age of 57 (ME since 2006, stroke 55). Apart from lack of pain relief the care was amazing and 10 days later I was home and now...
  10. Sallyagerharris

    Memory … short term and longer term

    Ok … wee bit of panic and I prefer to quickly know the truth. I’m 57 had ME since 2006 and am medium to severe, powerchair for mobility mostly outside, always feel horribly sick. Not often out and rarely meeting up with friends. My recent concern is dementia and Alzheimer’s… my husband today...
  11. Sallyagerharris

    Comment by 'Sallyagerharris' in 'Trusting the Numbers 6: A promising beginning, and a setback'

    Ha ha I’ve thought about that but will let others try it out firsr
  12. Sallyagerharris

    Heart rate variability and para v sympathetic nervous system

    I’ve just started with a Garmin watch and looking at my HRV plus heart rate much more seriously. I’m trying to work out my next steps … I’m 57 and have had ME since I was 41. Plummeted mentally after the rituxamib trial failed and withdrew from forums. Now I’m like blimey with long covid and...
  13. Sallyagerharris

    Comment by 'Sallyagerharris' in 'Trusting the Numbers 6: A promising beginning, and a setback'

    How are you doing now? I ask as I’ve just started with a Garmin watch and looking at my HRV plus heart rate much more seriously. I’m trying to work out my next steps … I’m 57 and have had ME since I was 41. Plummeted mentally after the rituxamib trial failed and withdrew from forums. Now I’m...
  14. Sallyagerharris

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    Thank you
  15. Sallyagerharris

    Helpful Android phone apps for symptom tracking, health history, etc.

    This is brilliant but couldn’t alter anything after doing the symptoms. It wouldn’t let me edit activity onwards … help and big thank you
  16. Sallyagerharris

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I would love to know which wrist heart rate monitor has audible heart rate alert zones plus constant heart rate display if possible and large font size. Help and thanks
  17. Sallyagerharris

    How to use Garmin watch to reduce stress, charge body battery

    Super and thanks for all the info. Trying to work out whether I use a heart rate record sheet to help. Has anyone found any type of record keeping or just looking at the garmin info. One hard bits is how to start doing this seriously as I do love my few times I walk my dog in my powerchair in...
  18. Sallyagerharris

    How to use Garmin watch to reduce stress, charge body battery

    Dear All, Apologies if a thread on how to do this exisist. i have just bought a Garmin 5. Ive set the heart rate monitor alam to monitor that part. But beyond that I am just not that tech related to health savvy and just do not understand how to utilise but also affect the Garmin info. My...
  19. Sallyagerharris

    vitamin b12 injections

    I have ME and am looking to book a Vit B12 injection. I’m not deficient but have heard this can help with debilitating fatigue. I know private energy injections are becoming a bit of a celebrity fashion purchase but just wondering if anybody has ever tried ... Also wondering if we know if...
  20. Sallyagerharris

    Severe brain fog or TIA / mini stroke??

    Huge thank yous. The good news is that I’m being referred to another neurologist ... non-ME for just understanding what my MRI showed and to look at strokes v TIA v other types brain dysfunctions ... it might take a while but I’m resolved in the meantime to scale back a bit on what I’ve been...
  21. Sallyagerharris

    Severe brain fog or TIA / mini stroke??

    I am waiting to see an ME neurologist via my London ME consultant but the appointment isn’t until February. Sadly recently postponed as it was supposed to be last week. I am also waiting for an appointment with a local ME neurologist as well. Trying to cover all options. My neuro Pyschologist...
  22. Sallyagerharris

    Severe brain fog or TIA / mini stroke??

    I think what I’m partly trying to find out is whether others have had similar symptoms but ME based ... I think it’s the potential overlap in symptoms which throws me ... still very emotional which is natural and taking it very easy! I appreciate the feedback. Sally x
  23. Sallyagerharris

    Severe brain fog or TIA / mini stroke??

    I had a mini stroke in July and a suspected TIA about 5 weeks ago. It sounds mad not being sure but may have had another TIA yesterday or was it nightmare extreme brain fog. Over aboit 2 hours I became extremely confused, slurring speech to extreme if I tried to speak, missing words couldn’t...
  24. Sallyagerharris

    ME and potential stroke or TIA currently in hospital

    Sorry I’ve been a wee bit absent ... So at the Grand age of 55 I have bad ME and now have had a stroke. Originally I was told I hadn’t had a stroke but now the final report from the MRI says I have had a stroke. This week I had the follow up consultation to my MRI with the neurologist. I have...
  25. Sallyagerharris

    ME and potential stroke or TIA currently in hospital

    Hurray I am back home. My lhs is recovering with speech coming and going with heavy or light slurring. I have an MRI which is showing no stroke ... thank goodness ... but cerebellar white matter flair ... waiting to see a neurologist that ive been put under as the hospital did not have the...
  26. Sallyagerharris

    ME and potential stroke or TIA currently in hospital

    Left hand half of body numb, weak with facial muscles on lhs droop and mouth coordination issues ... but improving after initial onslaught of 18 hours ... then about another 12-24 ongoing but much much better. It’s the ME cognitive stuff, weakness, numbness that made me question myself. A...
  27. Sallyagerharris

    ME and potential stroke or TIA currently in hospital

    I’m currently in hospital awaiting results of MRI. I came in 48 hours ago after 18 hours of not being able to talk at all apart from dreadful slurring and not being able to form words with jaw or brain. Lots of pain, bad breathlessness, tightness in chest, numbness, tingling, weakness...
  28. Sallyagerharris

    Coronavirus: what your country is doing, how you feel & general discussion

    Thank you all
  29. Sallyagerharris

    Coronavirus: what your country is doing, how you feel & general discussion

    I have severe ME but do not have any of the conditions listed by the government to put me on the extra vulnerable government list. Does anybody else know if we qualify for this group ... I suffer a lot with breathlessness, lung construction plus POTS ... use a powerchair full time ... any...
  30. Sallyagerharris

    ME and Coronavius

    How the heck are we supposed to know if we have symptoms of Coronavirus. My ME symptoms mimic exactly those of Coronavirus but as this is normal for my ME and basically I don’t think I’ve been out for 10 days and even when I last went out I’ve hardly been in contact with other people it’s...