Fibro clinic

[Edenstar]

Hey all,

Ok so I’ve been sent my pack for fibro clinic (because of all this virus stuff) and have videos on YouTube I’m supposed to watch,

Now although I’m trying to do the exercises and watch the videos I’m finding that I’m always in so much pain that I can barely move , as for the videos I have three kids and they all need the internet for school and when they are finally finished I’m so drained I cannot watch them without falling to sleep before it even gets started xxx

I don’t want the doctor or hospital to think I’m not trying because I really am but I’m not being able to keep up with the work I’m supposed to be doing for it within the time frame they have given me xxxx

Does anyone have any advice? Has anyone been to a fibro clinic?

Sorry for being a pain

Xxxx

[YASMINTINA FMA UK Volunteer]

Morning, no I have never been to a pain clinic but I know members that will hopefully come on and answer your post, yes with a lot of children being off school at the moment parents are very tired and that’s without having fibro to contend with, could you in the morning get ahead of them whilst they are having breakfast and have alittle look then, the best thing my hubbie got me was my iPad as it enables me on a rough day to use in my bedroom to answer any emails for appointments, like you say videos to watch, while worth investing in one been a life saver for me , and don’t have to wait for someone in the household anymore when on computer. Xx

[Edenstar in reply to YASMINTINA]

Thankyou for your reply xxx

Firstly it’s nothing like pain clinic unfortunately 😔they are different and we can’t afford a tablet atm but the breakfast idea is good xxx I will try that definitely ☺️ xxx

I just seem to be getting disheartened recently xxx

[YASMINTINA FMA UK Volunteer in reply to Edenstar]

Try and pace yourself your doing your best, doctors and hospital will understand, having children off school and putting meals on the table etc is tiring enough, don’t beat yourself give yourself a pat on the back , you sound like a good mum who trying to make sure they keep up with home schooling , some people have giving up trying I hear, sorry you said fibro clinic (my mistake) I hope you find it beneficial as I’ve never been for any clinics for help. Xxxxx

[Edenstar]

Thankyou xxx I appreciate your kind words xxx I just keep beating myself up because I’m not doing it as well as I should xxx

[Dizzytwo Moderator]

Hi there, is it not possible to do the work and watch the you tube on your phone? I seem to use my mobile for almost everything these days

Momo

[Ninapod]

What sort of videos and exercises are there? I was diagnosed with fibromyalgia at beginning of lockdown so haven't seen doctor or a Fibro clinic. Do I need to to access the videos? Struggling a bit at the moment as back to work full time so weekends are a bit of a washout!

[Tel30]

Hi there, I got sent all that stuff as well, and oh my I was more stressed and in pain after week three of all the stuff I had to read and videos to watch it was impossible. for one I possibly can't read anymore, as soon as I read a sentence I forgot what I'd read because of my brain fog and the videos were impossible to hear I tried them on YouTube on the telly and YouTube on my phone and I still couldn't hear, I even got my brother to get me some earphones to see if it made any difference but it didn't. With what's going on at the moment and I'm shielding I found my stress levels went sky high with what they expected me to do every week it was impossible so do not beat yourself up the lady was very very understanding when I told her that I just couldn't do it anymore , she did say that some people just can't do it and some people can, I was worse of trying to do it then I wasn't, if I had been in bed with a flare up for 3 days I just could not do all the stuff they kept sending me every week. I was crying and getting myself so much more worked up when I was still on the induction in week three and had a backlogged of stuff to read and watch

What with me having to be shielding due to my health conditions and being on my own this terrible virus going on and not being able to see my family it's awful I just couldn't do it so please don't get yourself worked up, if you can't do it then you just can't do it.

😘😘😘😘

[Julesubu]

I went to one weekly and was exhausting getting there, parking walking to venue. I stopped after few weeks as work pert time and needed my day off to rest up. Was some good info but didn't really tell me anything I didn't know after 20 years + of Fibro

[stevebran]

You are doing the best you can. Sadly the approach to dealing with fibromyalgia is very broad and not at all personalised but in fairness this is probably due to so much being unknown. I had 2 phone appointments with a fatigue clinic before realising that I was only being offered CBT and pacing, which may be good for some but only made me feel more inadequate as I found it impossible to find a level of activity that didn’t lead to consequent fatigue, therefore increasing my anxiety and making things worse. And I am retired and do not have your workload or responsibilities.

These things do not work for everyone, it’s just a pity that there seems to be so few options for us. Remember that the good people who try to help us can mostly only imagine what it’s like, we are only all too familiar with our limitations.

Best of luck and I hope you find answers. Maybe now isn’t the best time and you will have more success later when your circumstances change.

Steve