Fibromyalgia

[Cat29021992]

Hi Guys...im new here,was diagnosed in January, believe ive had it for years, I am a careworker but reduced my hours and now on sick leave as the Pain ,IBS, and Brain Fog was leaving me exhausted. Im really worried i wont be able to return to work , i have applied for PIP , just dont know where to go from here? Feeling really low ,any ideas would be great, hope everyone is ok and not suffering to much.

[Hazel_Angelstar Administrator FMA UK Staff]

hi and a warm welcome to our community. Here you will find information, support, friendship and laughterj too. You will find general information on fibromyalgia at our website fmauk.org

sorry to hear that you have had to give up your work - if you need any benefits advice you can contact our benefits helpline on 0300 999 0055 (Mon, Wed, Fri 10.00-12.00) or [e-mail]

re generally managing fibro there are a few things you can try

- pacing (key to managing fibro so you do not overdo things on your better day then crash)

- activity/exercise (important to keep moving as much as you can. lack of movement causes muscle stiffness/weakness which leads to increased pain

- medication (medication works for some people, but not all. there is no medical cure for fibro but some medications can reduce the symptoms

- self management techniques (meditation, mindfulness, relaxation, distraction, holistic therapies, cbd, heat/cold etc can all help with short term relief

it can be trial and error finding a plan which works for you - but it can be done where you have your fibro symptoms at a manageable level xxx

[Dids92 in reply to Hazel_Angelstar]

Thank you so much for all your advice and help ... I have written it all down and will put it into practice, thanks also for the phone numbers.

[Fibroska]

Hi there,

Firstly please know that you are not alone, we may not know exactly what you are feeling but we empathise, because we are all suffering from Chronic Pain & Fatigue.

Like you I was diagnosed quite recently but have been living with Fibro. for many years, only really educating myself this year. Unfortunately this is an extremely complex condition which is totally unpredictable; educate yourself and those around you, the more your loved ones know about the condition the more supportive they can be.

I recently completed a Pain Management Program which was extremely beneficial, you could enquire with your GP regarding a referral.

The PMP included: mainly changing one's thought process towards pain, how the brain reacts to pain, learning to focus on one's Values, learning to Pace activities, how important Positive and Stress Free Living is as well as Exercise; learning to use Mindfulness and Guided Meditation. I won't lie, it is hard work, it does take quite a lot of effort; as does anything worthwhile. I don't want to ramble on (I had a bad flare up recently, maybe read my post "Proof is in the pudding").

Don't be too hard on yourself, we are all too bloomin' hard on ourselves, make life as simple as possible, communicate with those around you, if to sore or fatigued to do something; let someone know you need assistance or it done for you (I know that's easier said than done, my thoughts on this changed when someone put it to me "How good do you feel when you are able to help someone, it's not really fare that you take that feeling away from someone" now I can both ask for help and accept it when offered, and life is richer for it. Learn to Pace activities, break them down into bite sized chunks, yes things will take longer, but you will feel better after. Use Guided Meditation, you will find good videos on 'You Tube' and most important, do something enjoyable every single day.

With regards to work, i think you are going down the right thought route, I would suggest taking something part time to begin with.

Sorry, did ramble on a bit.

I hope your symptoms ease soon, good luck with everything in the future and remember and be kind to yourself.

Stay safe, keep well & be strong.

[Dids92 in reply to Fibroska]

Hi ... Thank you so much for your lovely long message ... and no you didn’t ramble on, it’s so nice to get some help ... I have noted down everything you said...I will definitely ask my doc about the Pain Management program, and will look up the Meditation on You Tube. It’s so nice to know I’m not alone ... I’m also going to ask to reduce my hours at work , thanks again and you take care also.

[YASMINTINA FMA UK Volunteer]

Morning and welcome, I can see you have already been given some good advice, it’s proberly best you are resting at home as trying to work has taking a strain , you will read a lot of posts here , people finding ways to cope and useful tips, I’ve found it very comforting being part of the forum and made some lovely friends too xx

[Dids92 in reply to YASMINTINA]

Hello , yes I have had some amazing feedback and advice , Thankyou so much it’s so lovely to get some support, so glad I found this Site.

[snowyday2020]

You are on a good start. You have done a lot of thinking

Filling out those forms are tiring. I made sure I had someone with me anytime I went near those papers.

[Dids92 in reply to snowyday2020]

Hi , Yes it took me a couple of days to fill them out ... I had my husband with me and like you found it so tiring .

[Hidden]

Hi Cat, you can claim "new style" ESA (employment support allowance) which is contribution-based. This can last up to 12 months but you will be assessed by DWP in that time & either be deemed fit for work or put in the "support group" for 3 years. The benefit is means-tested if in support group but may be little deduction if you plan to reduce working hours. Look on gov. uk website.

I had to stop work 2 years ago & the ESA/PIP process was really draining, especially as I had to appeal after ESA assessment & money stopped but I don't need to worry for another 2 years when next one due.

[Cat29021992]

Hi Floofer , looked into ESA , but didn’t think I could claim while I’m on statutory sick pay ? Is this right or can I still put claim in? If so I will do this. I’m glad you got yours sorted out, and yes I have heard it’s really draining. Thankyou so much for all your advice.