Just been diagnosed. Have a few questions if that's ok.
Any tips on what helps with fatigue and pain? Tried and tested methods.
Also is anyone that has claimed pip and working. I am a mental health nurse working in A&E. I am really struggling to cope with hours, pain and fatigue but cant afford to drop my hours as I am the main earner. Any advice gratefully received. X
Hi EllaDily and welcome to the club nobody wants to be in. Ahh the million dollar question - fibro affects us all in different ways and what works for one might not necessarily work for another. Personally, as I am unable to take prescription meds, I rely on diet (processed foods and refined sugars are a definite no-no). If I stray from this and lets face it we all fall off the wagon sometimes, I pay for it in fatigue, IBS and general aches and pains. I also rely on heat pads, tens machine, hot wheatbags, epsom salt baths, bio freeze gel and when I can afford it hypnotherapy and chiropractor.
I also use various supplements, and vitamin D, as my levels are always low.
Like you I have to work as my husband has severe health problems. All I can say is I didn't want to have an occupational health assessment but it really has helped me, I have a modified uniform (can't raise my arms so everything has to have full length zips or poppers), car parking space nearer, various handrails, extra breaks, special chair and hours flexible (within reason as the needs of the employer also need to be met).
It doesn't matter if you work or not PIP is not means tested and some folk work and receive PIP. Have a look at the criteria on the website, there are lots of on line forms you can fill in to see if you would qualify. Actually getting the PIP payments however is another story as many of the posts on here testify.
Keep posting and I am sure that some of the other regulars will be along soon. No question too silly to ask as you can bet someone has already asked it or thought it before. We are a generally happy bunch willing to lend a listening ear, shoulder to cry on, share a giggle, joke or even a knitting pattern or two. It's a safe place to have a rant if you need to.
Take care and again welcome to our happy band.
Agree with all of above , deep relaxation , awareness of body , voltorol, physio tape ! Physio , Pilates x
Thank you so much. I too have really low vitamin d and take supplements. I do yoga. Mindfulness, take pain relief as I also have a back problem. Cant take anti inflammatories unfortunately. I did try pregabalin but found I couldn't function at all. I also go to the gym as I find exercise helps my mood as well as maintaining my health. I find I spend all my time trying to keep myself well that's there is no time for anything else🤣.
The diagnosis wasnt really a suprise and I am grateful that it's not anything terminal, I feel like I have no right to be gutted but spent most of wednesday in tears. There is no fix, no cure and still so little support available. I feel lost with it and not sure how to improve my symptoms other that what I have been doing.
I am a glass half full kinda girl and will get back to it but the moment feeling quite grumpy. 😱. Which I hate!
Love to all and thank you again.
Don’t be too hard on yourself - you will still be grieving for the old you. Give yourself permission to say no if by saying yes it will leave you shattered and likely to go into a flare. The art of learning to pace yourself is so important- still work in progress for me😁 Like you I have back problems and am waiting for two new hops but life goes on and I have found less strenuous hobbies and interests to keep the brain ticking over.
Good morning EllaDily,
Welcome to our wonderful forum.
No specialist in the world could give you better advice and support than the people of this group.
For many of us, finally getting a diagnosis, is a double-edged sword!
At last we have confirmation that we are genuinely struggling and there’s a name for this complex mix of seemingly random symptoms. Then comes the realisation that there is no easy way to navigate the condition as doctors are still learning and fellow sufferers will tell you that we’re all different!
So far I haven’t come across any symptom or issue not experienced by someone else on this forum.
What I’m trying to say is that you can expect someone here is feeling as you do.
Dinky has given great advice, as ever. To pick up a few points - learning to pace yourself is a game of trial and error and takes practice to find that fine line between activity and rest.
Acceptance is a huge challenge. Letting go of the old you and embracing the new takes guts and patience. Don’t beat yourself up!
Keep your cup half full and a smile on your face whenever you can.
We’re all here for you. There are some real night owls ,( naming no names 😂), so even if you’re having a bad night, there’s usually someone else awake who’ll be pleased to hear from you.
Happy Sunday,
Jan xx
Thank you Jan. My name is Lisa by the way. I meant to put it on my initial post. X
Hi Lisa, don’t be afraid to ask anything on our forum, or you can PM me anytime.
Take care lovely.
Janxx
Hi, the best thing I have ever done wrt pain has been giving up diet coke and anything else with artificial sweeteners in. It's a well known contributor to pain. Check everything you eat/drink. Artificial sweeteners have been added to so many more things since the sugar tax!
Good luck
Hey Lisa
Welcome. I was never one for internet groups until I got Fibro and found this one... lovely to be about people who understand and can also have a giggle 😂.
I have been diagnosed for 18 months and still learning so so much. Took a long time to accept but now I kind of enjoy taking things a bit slower. I have rediscovered reading...You also notice things you don’t see when running at 100mph!
So, yes learning to pace and prioritise. Relax and keep as active as possible. Eat well and keep connected with folk... but all dead hard to achieve, and some days just have to hibernate (particularly at this time of year) and not feel too much guilt.
Just take each day as it comes and be kind to yourself. 😊🦋
Hello nurse, sorry to hear of your condition. My problem was worse than yours but I found the answer. Try MILK THISTLE in tablet form or pils from Holland and Barat or online. Give it a week before you feel better. I am almost pain free. Well I am pain free from Fibro pain. It really is the answer. Give it a go and please let me know. I take two tablets every day. Kind regards john
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