Diagnosed today, feeling lost - Fibromyalgia Acti...

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Diagnosed today, feeling lost

welshgirl217 profile image
6 Replies

Hi, I was diagnosed with ME 2 weeks ago and fibromyalgia today and I feel completely lost. I was expecting to feel an emotional reaction but at the moment I just don't feel anything. Is this normal? I was given a leaflet and told my GP would discuss pain relief with me and that's it so I'm confused as to what I do next? Hope this makes sense.

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welshgirl217 profile image
welshgirl217
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6 Replies
Echoblue profile image
Echoblue

Hi welshgirl217, we all handle shock in our own way so there is no right or wrong way to take news, especially so soon after your ME diagnosis.

Fibromyalgia symptoms vary from person to person so it is a learning curve to understand how it impacts on you and then what pain relief methods/products works for you.

I wish you all the very best and a big hug on your journey ...... and know that there are many people here to support you through this x

Patdoyle profile image
Patdoyle

I was diagnosed with ME in 2011 and fibromyalgia last year. The two apparently can go together.

I was referred to the CFS clinic at Liverpool Broadgreen hospital and went there for one to one counselling on ways to deal with ME. Although not a cure it was very helpful and explained a lot of the weird symptoms I was having. The fibromyalgia diagnosis was given by a rheumatologist and I was referred back to the GP for pain relief.

When you see your GP ask if there’s a CFS/ME clinic locally to you. Good luck

NB2014 profile image
NB2014

Hi

I have quite bad fibromyalgia for past 8 or so years now with severe fatigue ! Sometimes i do feel like im banging myself against a brick wall !

However you will learn to adapt to doing all aspects of your life at a different pace and need to listen to your body !

I was a nurse qualified for 28 years who was constantly busy and on the go , had to leave work approximately five years ago as I just couldn’t do it anymore and my memory isn’t as sharp as it was, I wish you all the luck in the world and accept when you feel you need to rest you DO rest , much easier said than done though, gentle hugs x

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Hello there, I too have ME/cfs with fibro I understand what you mean, in one way for me it explained all the symtoms I was having,I would make an appointment to go back and you can have a chat with your doctor about pain relief, you will read members experiences , the trials and error of getting the right help eventually, it does take awhile to process what has been said to you, take it day to day , pacing yourself when you can is really helpful with fibro.healthunlocked.com/fibromya..., I have posted a link if you would like to lock your posts as only our community can see and not open to any other site engines on the internet xx

Dinkie profile image
Dinkie

Hi Welshgirl and welcome to the club nobody wants to be in. It doesn't say anywhere how you should react to the diagnosis. I was in complete shock and sat in the hospital car park and cried. I had no idea what fibro was - the rheumatologist just wrote it on a piece of paper and said "go research it I haven't time to explain it. We don't treat it here and I am discharging you back to your GP" that was it. I gave myself a stern talking to and realised I was still the same person I was five minutes before the fibro label. Label is all it is to me, it explains to others that my aches and pains have a name and no more. It's a steep learning curve made all the more difficult by the fact that fibro is different for all of us and what helps or gives relief to one person may not work for another.

Personally I can't tolerate prescription meds so have to make do with alternatives. I do not eat any processed food or refined sugars and should I stray from this I pay big time. Others can eat what they like and not find a difference. I use supplements, epsom salt baths for muscle pain, tens machine, bio freeze gel, hot water bottles, microwaveable wheat bags, electric heated shoulder cape, gentle exercise (even a stroll down the garden path) and when I can afford hypnotherapy and chiropractor. Trial and error I'm afraid to find what works for you.

If you are working then the art of learning to pace yourself and not overdo things becomes harder. Never personally been able to get it right - still work in progress for me as when I feel ok ish then I want to get things done and that invites the fibro sprite who is always sitting on my shoulder to demand payback and leaves me shattered and unable to do anything.

I have been through the occupational health assessment and reasonable adjustments have been put in place which make it much easier for me to stay in work. Might be worth considering this if you are working. I didn't want to go through it but have to say it was well worth it in the end.

You will find plenty of help and support on here.

Dinks

welshgirl217 profile image
welshgirl217

I think it helped as I was diagnosed on the Thursday then went on holiday on the Friday until today so just focused on that and enjoyed the holiday. I’ve been feeling rough since last night with severe nausea, my joints are painful and my fatigue is at another level. Since I’ve been home today I feel really down and getting low like when my depression is creeping in. I had a busy day tomorrow but I’m going to cancel one of my commitments as I just want to be at home right now.

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