New Diagnosis: Not much of a purpose... - Fibromyalgia Acti...

Fibromyalgia Action UK

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New Diagnosis

Cassi0 profile image
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Not much of a purpose, just an update really. I recently got diagnosed by a GP and a rheumatologist with Fibromyalgia. Honestly, there's a mixture of feelings right now, I'm angry because I've been in pain for 8 years and told time and time again there isn't anything wrong with me, but now everything makes sense. I'm sad because the thought of having to live the rest of my life like this is overwhelming and daunting. But I'm relieved to finally have my pain acknowledged.

The rheumatologist told me that medicine can't help me, which I knew really, but it's infuriating all the same. I can't afford regular treatments the nhs website suggests (chiropractor, massages, acupuncture) even though they've helped me in the past, physio on the nhs hasn't ever helped and I can't be taking addictive painkillers because I don't trust myself. I'm trying hard to regularly exercise, and sleep well but it's hard. To be honest, I need help with my mental health but I've been to the doctors countless times in the past regarding that and it's exhausting - and all they ever suggest is group CBT which doesn't work for me.

I'm learning new things about this condition, things that now make so much sense. Like why it hurts when I wear my favourite (but very heavy) coat! Or why sometimes I cant think or speak clearly - I've noticed this for years but I always just dismissed myself as 'having a dumb moment' , to the point where I think I convinced myself I just wasn't that smart. I've tried so many things for 8 years, and when the pain never went, I started to blame myself, like I hadn't done enough. I think now I need to start being a bit kinder to myself (easier said than done). After 8 years of this, I'm finally realising I'm not lazy, dumb or overreacting (most of the time anyway haha).

Trying to keep my head up at the moment and find something positive in the future, sensing this'll be an ongoing task.

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Cassi0
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4 Replies
SlothMode profile image
SlothMode

Hiya Cassi0,

Fibromyalgia is a lot to take in. We have all been there and I'm sure everyone of us remembers leaving their doctors office with a piece of paper telling them about fibro. I felt lost until I found Pinterest. So many people there to help me understand this thing I had. You can do the same here, there is so much support from people just like you. We deal with fibro, we fight fibro and we are the strongest people on the planet!

🤗😊

Yassytina profile image
YassytinaFMA UK Volunteer

Hi there, I truly get the mixed feelings, I felt yay I’m not imaging all this and certaintly made sense, great people here to chat too ,sometimes just to let out how we are feeling and also being a listening ear when someone needs that too. My biggest tip is pacing as best you can each day, warm baths, learning to say no too people when I’m not up too going out and not feeling guilty about it ,as over doing things can result in being less productive the next day. Yes differently be kind to yourself ( me when I’m able to take a short drive out results in m e treating myself to a sit down with a coffee a look around the garden centre and sneak a few plants home with me . Xx

crochetjoy profile image
crochetjoy

Hi there, can relate to what you are feelingDefinitely give yourself time to allow everything to settle and sink in

I had to wait a long time for diagnosis too and got so fed up I literally researched all my symptoms and diagnosed myself to my doctor, then had it confirmed by a rheumatologist

Best advice I can think of to give a younger person such as yourself is to work at something you enjoy and something which is not too draining physically or mentally

Also, there is research going on which will hopefully bring some answers on how to treat fibromyalgia better

It is good you have found this supportive and informative place, keep coming back whenever you need to

In meantime, take some time to absorb everything and be very kind to yourself

Best wishes 💕💕

daisiemaiskye profile image
daisiemaiskye

Hi Cassie, I can relate to you years going back and forth to doctors new pains every week …. You have your diagnosis and now you have to learn to live with it…acceptance is a big part of this… please get help with your mental health if you need a counsellor there are lots of voluntary organisations who should be able to help… hot baths, anti inflammatory foods and supplements… time out … find a hobby you love, a pet? make time for rest, listen to your body it will tell you what it needs… regular gentle exercise, yoga or gentle walks and good sleep…. Your brain will clear. - your body will have good days… enjoy them and celebrate all you can do as amazing achievements, because for people like us even getting out of bed can be a victory never mind getting our work done! Take care and try to stay positive xx

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