Chronic Fatigue Syndrome/M.E. Society

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Anonymous #17
#801
Report 8 months ago
#801
Hey,

So ive just been diagnosed with CFS/ME. I have to say, I'm gutted. Ive been told i have to go to some group session in two weeks where theyre going to do a presentation and i'll be there with 5 other patients. I hate group sessions and have anxiety so really stressed about this. Did anyone here have to do this first? Also, the dr who diagnosed me today said treatment includes therapy which i knew because i had looked into it online already but im already getting therapy and i know you cant do two at the same time so is this going to be a problem? Really gutted about this and dont really see how therapy is even going to solve physical problems. Can anyone advise what their experience has been like?
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Anonymous #16
#802
Report 8 months ago
#802
(Original post by Anonymous)
Hey,

So ive just been diagnosed with CFS/ME. I have to say, I'm gutted. Ive been told i have to go to some group session in two weeks where theyre going to do a presentation and i'll be there with 5 other patients. I hate group sessions and have anxiety so really stressed about this. Did anyone here have to do this first? Also, the dr who diagnosed me today said treatment includes therapy which i knew because i had looked into it online already but im already getting therapy and i know you cant do two at the same time so is this going to be a problem? Really gutted about this and dont really see how therapy is even going to solve physical problems. Can anyone advise what their experience has been like?
Hi, I’m going to post my answer in 8 messages, as it’s quite long & I know if I saw a long message I wouldn’t be able to read it & most probably skip past it... 0/8
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Anonymous #16
#803
Report 8 months ago
#803
I was diagnosed in October 2013 & went to a group session. There was quite a few of us (not just patients but relatives also - my mum was with me). There were three nurses who talked generally about cfs/me, what it is & how it affects you. Then as we were leaving, they gave us an A4 booklet thing about it all as well (as far as I can remember). 1/8
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Anonymous #16
#804
Report 8 months ago
#804
I then went for 1:1s to see one of the nurses & she talked about Graded Exercise Therapy & setting two goals initially & building those up. So for me, it was 1 min on my parents static bike 4-5 times a week (I’d say if that sounds too much, just start with the no. of days you feel comfortable with to begin with). Every 2 weeks you increase the time by +20%, so I’d supposed to do 1 min 12 secs for another 2 weeks then increase it again. My other goal was walking. Again, starting with 1 min (or less). 2/8
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Anonymous #16
#805
Report 8 months ago
#805
This type of therapy didn’t really work for me. Some weeks I could do it, but others I couldn’t, because my mindset was not good. It also didn’t help that the nurse didn’t take into consideration (she admitted after weeks & then taking my parents in to talk with her) my other health conditions, congenital heart condition, depression & anxiety. I also have dyspraxia which again she didn’t think about. Also, she wasn’t really listening to me when I said I couldn’t do something. 🤷*♀️ 3/8
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Anonymous #16
#806
Report 8 months ago
#806
I don’t know how long after that my parents took me to my gp as I was getting worse (mentally at least) & she referred me to a physiotherapist. I remember before the appt I was thinking it was a waste of time, but after my initial 30 mins appointment, I actually felt mentally better, as I felt listened to for the first time! She put together a daily routine for me (which she said the cfs nurse should have done) & it went something like “get up” have a rest, “get dressed” have a rest, “have breakfast” have a rest, “do something small you enjoy” have a rest, and so on. She even said, which helped, that it doesn’t matter if I only manage half of the day. So she wasn’t putting any pressure on me. . 4/8
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Anonymous #16
#807
Report 8 months ago
#807
I was still seeing the cfs nurse at the same time. So I don’t know about not having two therapies at the same time. I do follow a couple of Facebook pages made by & for people with cfs/me. If you’re on FB, they are cfsunravelled (also has a website (. Com)) & Community of Recovery from ME/CFS/FM. This is a private group. There may be lots of others as well. 5/8
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Anonymous #16
#808
Report 8 months ago
#808
I hope these resources are helpful to you. It is frustrating going through an invisible illness - it’s finding the right mindset you need to be in to help you start recovery (which, to be honest, I do find really difficult even 7 years on - wow, I didn’t know it was that long!) What hasn’t helped me is my other health conditions either. Especially long term anxiety. I have recovered enough to manage uni part time though (I was housebound & couldn’t really do much). I’m just starting my first year of Level 5. 6/8
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Anonymous #16
#809
Report 8 months ago
#809
Like I said, I’m still struggling with my mindset but I’m starting to try & get into a regular routine of meditation & possibly yoga (one simple yoga movement anyway 😅). Some people swear by meditation & Nidra yoga (a relaxing yoga practise). You’ll probably find lots on YouTube. . 7/8
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Anonymous #16
#810
Report 8 months ago
#810
I hope you find the group session okay. Maybe take someone with you (if you can & it’s safe to do so). I hope my experience has helped you a little (maybe not the part about the 1:1s with the cfs nurse...😅). In the Facebook groups, there are so many people sharing their tips & advice so if you want, you’ll be able to get lots of info there! Best wishes to you. 🙂 8/8
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itsallphysics
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#811
Report 8 months ago
#811
My daughter has had ME for 2.5 years. The other replies you've had are brilliant. A few things to add. Key thing: listen to your body. Rest, rest, rest. Graded exercise therapy (GET) isn't recommended at present. The illness is widely misunderstood including by health professionals - you will soon know more than most of them. ME Association website is helpful. Tymes Trust also great - aimed at children with ME, but great for helping others to understand what you're going through. Other aspects of your health (eg anxiety) need to be taken into account at the same time to avoid a vicious circle. If group sessions aren't right for you, ask for 1 to 1. Don't be afraid to push back/keep asking for what you need. If you are at school/uni it's worth seeing what extra support you can get. All the best.
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Anonymous #17
#812
Report 8 months ago
#812
(Original post by Anonymous)
I hope you find the group session okay. Maybe take someone with you (if you can & it’s safe to do so). I hope my experience has helped you a little (maybe not the part about the 1:1s with the cfs nurse...😅). In the Facebook groups, there are so many people sharing their tips & advice so if you want, you’ll be able to get lots of info there! Best wishes to you. 🙂 8/8
Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?

(Original post by itsallphysics)
My daughter has had ME for 2.5 years. The other replies you've had are brilliant. A few things to add. Key thing: listen to your body. Rest, rest, rest. Graded exercise therapy (GET) isn't recommended at present. The illness is widely misunderstood including by health professionals - you will soon know more than most of them. ME Association website is helpful. Tymes Trust also great - aimed at children with ME, but great for helping others to understand what you're going through. Other aspects of your health (eg anxiety) need to be taken into account at the same time to avoid a vicious circle. If group sessions aren't right for you, ask for 1 to 1. Don't be afraid to push back/keep asking for what you need. If you are at school/uni it's worth seeing what extra support you can get. All the best.
Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea
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itsallphysics
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#813
Report 8 months ago
#813
(Original post by Anonymous)
Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?


Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea
I understand your reluctance to turn down the session, especially as you've just been diagnosed. It's hard when you're feeling unwell and uncertain. None of the medics knows what it's like to be inside your body and mind, and they rely on you to tell them. My daughter's experience has been that body & mind are very tightly coupled with ME - a bad mental experience can result in greater fatigue. Here is some additional info that you can ignore if it's not useful. If you think your anxiety will make a group session counterproductive, it's ok to say so, and one would hope that the Dr would talk about that with you and find a better way forward. There's a formula for being assertive in a nice way, that goes something like this: W is the situation. X is how I feel about that. Y is the outcome I would like. Z is the likely outcome if we don't achieve the outcome. eg "I bought this bread which is mouldy. I feel that I cannot eat it. I would like a replacement or refund. I won't want to shop here again otherwise."
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Anonymous #17
#814
Report 8 months ago
#814
(Original post by itsallphysics)
I understand your reluctance to turn down the session, especially as you've just been diagnosed. It's hard when you're feeling unwell and uncertain. None of the medics knows what it's like to be inside your body and mind, and they rely on you to tell them. My daughter's experience has been that body & mind are very tightly coupled with ME - a bad mental experience can result in greater fatigue. Here is some additional info that you can ignore if it's not useful. If you think your anxiety will make a group session counterproductive, it's ok to say so, and one would hope that the Dr would talk about that with you and find a better way forward. There's a formula for being assertive in a nice way, that goes something like this: W is the situation. X is how I feel about that. Y is the outcome I would like. Z is the likely outcome if we don't achieve the outcome. eg "I bought this bread which is mouldy. I feel that I cannot eat it. I would like a replacement or refund. I won't want to shop here again otherwise."
Wise advice. Thank you
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shuvasishgraphy
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#815
Report 7 months ago
#815
Excellent Blog! I would like to thank you for the efforts you have made in writing this post. I am hoping for the same best work from you in the future as well. I wanted to thank you for this websites
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Anonymous #17
#816
Report 6 months ago
#816
Dumb question i know, but how do you pronounce the words what ME stand for? I dont like calling it cfs and everyone thinks its "just feeling a bit more tired" so id rather call it by ME but have no idea how its pronounced?!
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chelseadagg3r
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#817
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#817
(Original post by Anonymous)
Dumb question i know, but how do you pronounce the words what ME stand for? I dont like calling it cfs and everyone thinks its "just feeling a bit more tired" so id rather call it by ME but have no idea how its pronounced?!
https://www.youtube.com/watch?v=uL8Q3n82ac0 this might help! This is how I say it too. It took a bit of practice though
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chelseadagg3r
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#818
Report 6 months ago
#818
(Original post by Anonymous)
Thank you so much for that. I'm really stressed about it which I know is stupid. Part of me feels like i dont even have it though because i don't feel as bad as others who have it say even though theyve formally diagnosed me?


Really? I didn't know that. It was the first thing my GP said they'd do, but I have no idea. Actually stressed about this meeting, I really don't want to go but feel like I cant really say no and demand a 1-2-1 when i Can go. I told them my concerns initially and they just said I didnt have to speak and it was a one off? Urgh i have no idea
Just so you're aware, the charity Action for ME has been working tirelessly on getting GET removed from NICE guidelines for years and they've only very recently managed it. You can read about it here: https://www.theguardian.com/society/...recommendation
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Anonymous #17
#819
Report 6 months ago
#819
(Original post by chelseadagg3r)
Just so you're aware, the charity Action for ME has been working tirelessly on getting GET removed from NICE guidelines for years and they've only very recently managed it. You can read about it here: https://www.theguardian.com/society/...recommendation
Thank you for sharing that with me, much appreciated!
Also thanks for the YouTube link, i cant believe i didnt think about that myself haha!
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