Hi, I have severe ME. I have been affected for most of my life and have been mostly bedbound for the past 13 years. Is there anyone else on this forum who is severely affected or who needs advise on the challenges at this level?
Wishing everyone good days a peaceful life.
ME65
Hello. Good to hear from you. I am a Volunteer for an ME Group. I meet a lot of people with various levels of ME. It is always good to talk to other people and great that you are offering your support to others. Do you have the chance to see a Specialist. There is no Specialist in our neck of the woods.
Hello. Thanks for your reply. Yes I have been very lucky with the support I've had. I had to be a bit firm with my GP to get a referral to the nearest ME specialist centre which is in Bristol. She said they wouldn't do a home visit, but they do for anyone who is totally housebound. I was sent a very long and daunting form to fill out prior to the visit but I took my time and got it all done. A lovely specialist OT came to visit me. It was the first time I'd met anyone professional who could really understand what I was experiencing. She supported me through phone consultations for a couple of years which helped me to sort out the best way to manage my life. I would encourage anyone to find out where their nearest centre is and get whatever support you can.
I'm not in contact with her now but I was assured that I could ask for help at any time in the future.
With the NHS cuts I doubt any new centres will be opened so if there isn't one covering your area I don't know what you can do apart from nag and complain to your local NHS board.
hi there how are you, hope you are having a good day. I struggle with sleep and pacing, and energy levels. I have read sarah myhills book and she recommends vit b12 injections despite your blood levels. Have you had any experience of this?
Hi ladybabe, good to hear from you. The trouble with vitB injections is you have to pay privately unless a blood test shows vitamin B12 related aneamia. I am convinced B12 is one of the things that helps my energy level. I take a tablet once a day of 1000ug (u is not the right symbol but the nearest on the keyboard). I also take L-carnitine 500mg once a day, D-ribose 3 times a day
and CoQ10 100mg twice a day. This has made a difference to my energy levels. I think I found this combination on Dr Myhills website, but can't honestly remember. For me B12 on its own was not enough.
As for sleep - this is a real bugbear. When desperate I take Nytol but even then my brain fights it and it can take hours to drop off. And it's only good for 3 nights in a row as you get used to it. I find I have to settle down to sleep at 10 in the hope of getting 8-9 hours of some kind of sleep by 10 the next morning. I read a bit or listen to meditation tracks when I get restless while my brain s l o w l y winds down into sleep mode.
When you say you struggle with pacing what do you mean?
Hello there, Can you get the L-carnitine, D-ribose, CoQ10 from the health shop? The pacing, I really struggle with as some days I can do nothing, even if I have done nothing the previous day. Other days I can do something for 10-15mins minutes. I would really like to achieve a balance and be able to do something for short time everyday and increase it slowly.
What do you take for pain? if anything. I take temegesic (sublingual)which helps with some of the pain and I put up with the rest. The muscle pain drives me daft. (if I'm not daft enough already LOL)
Regards
Hi Ladybabe. don't know what's available in health shops as I don't go out anywhere! I get the vits and L-carnatine from naturesbest.co.uk and the D-ribose I get from muscleform.co.uk. D-ribose is taken by body builders to boost performance so it's available through sports nutrition outlets.
Pacing has to be the hardest aspect of ME. It's easy to take a tablet or some potion and believe that this is the magic trick that will give you your life back, but pacing is the mainstem and nothing can take its place. Do you belong to Action for ME? If not it's well worth joining. They have lots of information on managing ME and a leaflet on pacing with charts. Even better would be to get a referral to a specialist ME clinic. As I said in another post, they will do a home visit for those who are badly affected, and if you can only do something for 10 mins before crashing for days you are definitely severely affected.
For pain I am prescribed Zapain and I also apply Ibuleve max gel to particularly painful areas. This is usually sufficient - if not it's because I've overdone things!
Take care x
hi
I'm mostly up and about and very grateful for the ME specialist (also trained as OT, counsellor and supervisor) in Cornwall.
Hi friendlylion. Glad to hear you found some specialist help too. It's a shame that some are not able to access any. It is terribly isolating with no professional support.
Wishing you lots of good days.
Absolutely. And i guess I could mention that whilst this person wrote a 'perfect' report for my ESA form last year, i could have done with her for many years before.
I have only had her for a couple of years.
Before that there were various GPs or nurses 'with a special interest in ME' and some of those i would not deem appropriate at all.
At that time there was very much the opposite of joined up thinking with certain people refusing to communicate with others.
Previous to that i have had GPs laugh at me and the only 'support' i had was increasing doses of pain-killers that made things worse.
I'm 48 and have been affected since about 16. i have certainly had enough bad days to hope the best days are yet to come.
Incidentally along with massage, tai chi, person-centred counselling, all sorts of potions from a Mexican currendera and all the time i spend working out what I need to do (i.e. my ME is my Medicine) etc. the product on the market that i have found most helpful is ForeverGreen's FrequenSea which is made from more than 250 strains of marine phytoplankton (you probably know spirulina, this is 250 + different types). Those plankton keep huge whales going for up to 200 years, so i guess there is a good chance it can help us too.
Hi friendlylion. Glad that you have been able to find things that help you. Sounds like you've had a few years to try things out, but what a lot of money we spend in our desperate bid to end the suffering? I once spent hundreds of pounds on some magnetic therepy. I had to wear a specially tuned pendent around my neck which would rebalance my brain. I know, I can hear you laughing, but that's how desperate I was, common sense leaves the room in these circumstances!
hmmm, I'm not sure.
I have a magnetic belt and patches, also bought a couple of Bioflow bracelets that broke but i couldn't get replaced for free because i didn't know where the receipts had got to.
But I generally don't regret most of my purchases (although Drs have told me vitamins / minerals etc. are bunkum).
Desperate times demand desperate actions.
I met a woman last night who sold her house to provide the readies for treatments...
I'm and 14 need support :)
How do I get a diagnosis?
guillaine barre syndrome...gbs
Do I have CFS and Should I mention it at my next appointment?