• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. M

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    I read an on line newspaper every day but I don't read it in depth; I skim. I've probably read 2 novels since I became ill. I still buy them with the intention of reading but find reading really, really tiring. When I read its as if I can actually physically feel my brain straining to work. As...
  2. M

    Dog breeds that can be housebound only?

    I got a puppy last year, rather impulsively. I have a chorkie- chihuaha/ Yorkie cross. She's 3/4 Chihuahua (I still don't know how to spell it!), and 18 months old. It was quite overwhelming getting a puppy. It felt as if I had a new born baby to look after, and I couldn't have done it without...
  3. M

    Pre period window of improvement.

    That doesn't sound right at all! My memory isn't great but I think mine got progressively better after 5 or 6 weeks. One thing I have learned with this illness is to listen to my body. It certainly sounds like yours is telling you to get that mirena out! Hope you feel better soon
  4. M

    Pre period window of improvement.

    Hi people! It's funny to visit this thread again. I wrote the original post 18 months ago, and had forgotten all about it! To update, I'm now 50 and I don't think I got another period after I posted the thread. However, I decided to have the mirena put back in again partly because I realised...
  5. M

    Protein shake anyone?

    Hi there people I bought some whey powder at new year when it was on offer in my local Spar. I bought it impulsively having read a few positive comments on here about it making a difference, and branch chain amino acids being mentioned in some research (forgive my vagueness; I am quite badly...
  6. M

    Leeds ME/CFS clinic (UK)

    http://www.yorkshirefatigueclinic.co.uk/step-programme
  7. M

    Do Chronic Lyme Patients experience Post-Exertional Malaise?

    @GodGenghis that's a question I've been pondering too. I recently got a 'strong positive' Lyme result from Armin Labs. I was quite shocked by the result and still don't know what to make of it. My PEM has definitely improved over the last year, although it's still there. I was diagnosed with...
  8. M

    Arminlabs results help please

    Thank you so much for your responses to my original post. I am still not sure what to think about the results. I have read about false positives and conclude that my results are too high for this to be likely, but it does seem that the test could be picking up something other than Lyme. My...
  9. M

    Arminlabs results help please

    I tested negative on the standard NHS test a few years ago. I became properly ill 4 years ago, but my last tick bite was a few years before that. I'm pretty sure I have had more than one tick but one of my symptoms is memory loss, and people I have been with have had ticks. We never thought...
  10. M

    Arminlabs results help please

    Hi Daffodil, sorry I thought I'd power this in the wrong place so now I've posted twice with an extra bit! Thanks for your reply. I'm really quite shocked at my result and have no idea how to proceed! I think my GP will dismiss this.
  11. M

    Arminlabs results help please

    I recently got awarded a grant for Lyme disease testing. It was well over a year from applying and the charity are no longer accepting applications. I just got my results back and would be grateful for interpretation. Borrelia EliSpot 1 Borrelia b. Full Antigen ! 23 SI 0-1 = negative 2-3 =...
  12. M

    Ill health retirement

    Sally I retired on ill health 4 years ago under the Local Government Pension Scheme. My diagnosis was CFS/ME and I was assessed to be unlikely to recover sufficiently to be able to work full time again, due to my illness, as well as being unable to continue in the post I was in despite any...
  13. M

    ME Assoc. June survey - Vit. D testing

    I am in the UK, white with Scottish/ Italian heritage, tan easily. I have always liked to spend time in the sun and am not really home bound, having 2 children, although I struggle to be out and about with my energy levels. My vit D was routinely tested by an endocrinologist, after...
  14. M

    One sided symptoms?

    Fredd's protocol is way beyond me. My limited energy and brain function is spent on parenting and keeping myself dressed and functioning. I take thyroid meds, topirimate iron and vitamin D. These are in a dosette box, provided by the chemist. Despite this, I often forget a dose. I try to take...
  15. M

    Brain Stuck

    I recognise your description @Catjbro. It's part of a bad crash for me. All I can do is rest until it passes- I usually manage to sleep so I imagine it must be frustrating if you can't. Meditation helped me get to a place where I can switch off better. I don't really meditate now, but I can get...
  16. M

    One sided symptoms?

    That's interesting @Old Bones. Yes, I'm right handed. Your reply reminded me I had two episodes of localised numbness on my chin about 2 years ago. My chin went red and then went utterly numb, in one particular area. I have no idea now whether it was more on the left or the right!
  17. M

    One sided symptoms?

    I've noticed recently my symptoms seem to be settling into a more clearly defined pattern. I've added T3 to my levothyroxine (under the supervision of a NHS endocrinologist) and I feel less brain fogged and a little more energetic. My body can't quite keep up with me and I seem to be stiffening...
  18. M

    Probably Sjögren's Syndrome all along.....

    Hi @Megan17 and others on this thread I had my Schirmer's yesterday at the eye clinic. The doctor didn't actually bother measuring the result. He just laughed and said 'There you go, you can see there aren't many tears being produced there!' He was quite jovial. The end of the paper was just...
  19. M

    Rest PEM?

    I took topirimate as a prophylactic for chronic migraine for a few years before I became ill. I still take it despite wondering whether I might feel better without it in terms of brain fog and fatigue. My migraines return with a vengeance as soon as I try and reduce for any length of time. I...
  20. M

    Odd Symptoms

    Hi there That all sounds horrendous. I'm no expert but everything you mentioned made me think there's something going on with your thyroid, or some hormonal problem that could be affecting thyroid too. There are some thyroid specialists who treat on symptoms and believe that you can have...
  21. M

    Horrible Stress?

    My brain fry is probably my most debilitating symptom, along with fatigue. My physical symptoms aren't as bad. I hardly post on PR despite reading quite a bit. I don't know how people cope with the responses when people reply. That in itself is paradoxically so exhausting, despite being...
  22. M

    Probably Sjögren's Syndrome all along.....

    @Andielyn Thank you- I hope you get some answers too. I'm also on topirimate for migraine. My dry eyes pre- date my starting that however. I stopped it for a while but am back on it now as the migraines returned with a vengeance. The blurred vision rapid onset you mention is also interesting-...
  23. M

    Probably Sjögren's Syndrome all along.....

    Thanks @charles shepherd I'm expecting the Schirmer's test is what the Eye specialist will perform following my optician's referral. If not I'm half considering you-tubing a DIY test!
  24. M

    Probably Sjögren's Syndrome all along.....

    Thank you @charles shepherd Just for information in case others are wondering about a diagnosis... Although I am registered with a fairly forward thinking GP practice, since the GP first mentioned Sjogren's, it has involved several return trips to get to the point I am now, and I'm still not...
  25. M

    Probably Sjögren's Syndrome all along.....

    Hi @Megan17 I wonder if having a diagnosis of Sjogren's means you can start some treatment that will help with your symptoms? I am currently awaiting tests for Sjogren's. I was diagnosed with CFS just over 3 years ago, then Autoimmune thyroiditis about 18 months ago. My ANA and other...
  26. M

    Leeds ME/CFS clinic (UK)

    I had a year at the NHS ME/CFS clinic in Leeds. Like Katie I was seen 4 to 6 weekly by an OT but never once by a doctor. I found the support helpful and I'm not sure what I've done without it. I was very much on my own with this illness, and felt quite desperate. I was off work from a job I...
  27. M

    Neurological basis for CFS?

    I had those symptoms too and wanted to reply as I recognise exactly that description. My mental symptoms were exacerbated by physical or mental exertion and felt more disabling than the physical symptoms, causing me to stop working in a mentally demanding job but one that I really quite enjoyed...
  28. M

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Deprivation of Liberty orders (DOLS) are used to treat people with physical illnesses or to keep them safe in the absence of mental capacity. They are often used for older people with Alzheimer's. The law used for DOLS is the Mental Capacity Act. An individual's capacity must be assessed...
  29. M

    Pre period window of improvement.

    I was perimenopausal when CFS hit, now Im officially menopausal and I'm feeling a bit better overall, as long as I pace. I have no idea whether the improvement is linked to the menopause but it would be nice to think that the end is in sight! I sometimes think that hope is not a bad medicine in...
  30. M

    Possibly positive news on Lyme treatment UK?

    http://www.theguardian.com/society/2015/dec/04/surge-in-acute-cases-of-lyme-disease-in-britain-spurs-ministers-to-act I've searched to find the source for this article, but gave up. Looks like it might be a step in the right direction though ... The case study sounds alarmingly like me, except...