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Merged thread Does anyone suffer from extreme what feels like the body and brain becomes inflamed and I get massive pain and I hate touch and just need a quiet dark room. Nothing seems to help it

Can I ask if anyone has been given morphine to help with their dire pain and malaise. I’m taking codeine and pregablin plus duloxetine and nortriptyline. But I’m in dire agony now nearly all of the time. I’ve had a small bit of a friends morphine which helped me immensely but as yet cannot get...

My ME seems to involve horrific amounts of pain. I think via pregablin that I can deal with the nerve pain. I’m looking for recommendations I can discuss with my GP in the UK for agonising, soul destroying ongoing PEM but the malaise with hideous aching all over (worst flu type) plus the...

I’ve found out that the drug they are trialling is amifampridine used for LEMS

Feeling a wee bit desperate. I’m finding my Jazzy Pride “shopping” Powerchair’s suspension is just not adequate with going over the very bumpy pavement in the historic market where we live. For me the bumps make my ME much worse I’m bedbound at least 3 days a week and limited to a couple hours...

Thank you so much for your replies. I’ve always had nausea come and go with the ME. It’s definitely not from medication and gets worse and almost acute withl more pain or sometimes just severe bouts of nausea. I’m just so exhausted of it all … I know we all have had enough. Last night was...

That sounds a great suggestion. I used to have ideas but these days my brain just doesn’t seem to work or think in the same way as it used to. Common sense ideas are elusive for me now so it’s always good to put ideas out there. Thank you.

Thank you so much for your replies. I’ve always had nausea come and go with the ME. It’s definitely not from medication and gets worse and almost acute with more pain or sometimes just severe bouts of nausea. I’m just so exhausted of it all … I know we all have had enough. Last night was...

I’m just entering / experiencing OI hypotension, fainting, big black blobs in my vision on standing or delayed and then start to black out. I also seem to have cold layer on the exterior of my brain. I’ve had progressive ME since 2006 become more severe in the past 6-7 years. I’ve used a...

Thank you so very much for this as I had no idea that this exisits. I have an appointment with my local NHS dentist and have emailed them. But I’ll print this off and take it with me. Huge thanks x

Merged thread 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...

Super thank you and do message me with any other thoughts as all info is useful. I had a bone scan due to a broken hip and then operation on 4 Janusry and had be bone scan yesterday which revealed severe osteoporosis. My birthday tomorrow and will be 58!!! I had a minor stroke when I was...

I also note that most oxygen compressor hire places need a GP / hospital approval … can I ask if your GP helped with this? Also how long have you been trying it and when did you notice a difference? Sorry for so many questions. And I appreciate all your kindness in answering. I’ve just...

Can I ask where you hired the oxygenation compressor from and the model. Thank you

Hmmmm very very interesting …. How have you measured your blood oxygen to know you needed an oxygen compressor and may I ask how it’s made a difference to you? Also which model have you hired? Thx Sally

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...

I broke my HIP on 3rd January and am already way behind on recovery. I’m 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 ambulance 24 hours in A&E on a few painkillers but not...

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...

Merged thread 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

Thank you for the advice and replies. My doctor just asked me to try nortriptyline but nothing is softening or alleviating the brain stuff ... need energy to get back to doctor to tackle it and get help ... if there is any ... trying fish oil supplements ... feeling so horribly scary unwell...