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I can understanding wanting to get better & improve your functioning. I would just caution that neuro-rehab is known to be intensive, because of the nature of the conditions they work with, eg stroke etc - where they have a narrow window to try to get physio done, and the patients can tolerate...

Me again.. a few people on this thread have written that they’ve tried stockings/ tights / socks /leggings etc. Have any of you been tested beforehand (by measuring blood pressure at the ankles and comparing it to the arms), apparently this is something they need to do to check your blood flow...

Ok I’ve had a chance to test it out now. They really are incredibly comfortable. I can hardly feel them. I wasn’t sure on the sizing & was worried it may be tight, but it’s very stretchy. They have a size chart with actual measurements of the item itself, so that makes it easier as well. Yes I...

yes! I found this selection of products for putting on / taking off compression garments easily, I might get one of them when I buy the stockings: https://www.mediuk.co.uk/shop/product-categories/accessories/donning-doffing.html

Do you usually use the medium level support or the light support, for the Comfizz? The company looks good as the garments do generally seem quite comfortable. And when you say cycle style shorts I’m guessing you mean the boxers...

I haven’t tried these before but thank you for posting this! I’ve been looking for new underwear for a while, something colourful but also not scratchy and feels soft & comfortable. I love modal (I have modal pyjamas and it is the most comfortable material I’ve ever worn). And this is made out...

I just saw these Twitter posts and then remembered this post here too. (thanks @livinglighter for posting this Twitter post on the other NICE thread): @strategist i think you’re right and looking at other conditions could be a pathway to understanding PEM. (another condition I’ve heard of...

I promise I’m not trying to argue, but in terms of the conditions strategist is talking about above, viral infections can trigger them. (I probably also had a viral onset - suspected but not confirmed, viral symptoms such as swollen lymph node & vertigo, no fever, later had viral antibodies)...

Will PM you as this is a non members only thread!

It’s a difficult question, but prior to last year, I had become absolutely certain that I had ME, and only ME that could explain my symptoms.. to the extent that when something else was suggested, I was in hospital arguing with a neurologist that it certainly could not be something else, and at...

I think this will be very relevant for Pw with severe and very severe ME. If you need to be admitted to hospital, you have a right under the Equality Act to have your regular carer / PA / family with you. Even under covid rules (although now it’s been changed from allowing 2 carers, to only...

I think it’d be a good idea to speak to GP about arranging vaccination in a hospital. People who have severe allergies / adverse reactions are often vaccinated in a hospital setting so that if anything happens, eg if you get an angioedema attack, they can treat you immediately. @Trish as far as...

Yes, sure.

I know it shouldn’t be the case but this is the way things are in the U.K. I’ve found that in order to get help you have to “jump through hoops”, and figure out who is the right person to see and what for. Even though I’m very poorly, I have to see people separately in order to get help, and...

that’s so interesting, I have to do the exact same thing! I’ve had severe upper stomach / acid reflux type pains since I was very young, and they never left. I get the pain if I haven’t eaten for a long time, but also if I over-eat too. Only thing that helps is famotidine / omeprazole, and...

My PoTS doctor is writing to my GP to tell them to prescribe compression tights (not stockings). So it has to go up to my waist. I had a few questions for those of you who know more about compression: - did your GP prescribe compression garments or do they get confused and say they can’t do it...

Yes good point, I’ll change it.

This is some of the information gathered when discussing my personal housing situation. thanks especially to the other members who knew a lot more than me and directed me towards these organisations & websites! I wanted all this information to be searchable on S4ME should someone else need it...

Addendum: intensive care There may be a possibility that following surgery, you may be transferred to intensive care (Usually HDU, rather than ICU). This is sometimes a pre-planned admission. There are single rooms available but it can be very difficult to be given one of those, given covid...

This is a post collating what I learned, when trying to access surgery as someone with the symptoms of Severe / Very Severe ME. I hope it is concise and can help support others who find themselves in my situation or similar situations. (Note: I had a thread on this forum where I shared all my...