Fibromyalgia Action UK
39,160 members51,346 posts

Recently confirmed FM and really don't understand it

Hi Lou here, bit of a moan but here we go. What is this strange illness the only thing I can read at the minute is that it is all in my head. This pain as you all know is horrendous, cant get out of the bed because my hurt so much, my feet are swollen along with my hands. Took my grandson out yesterday and 15 minutes in I was a mess in agony, as white as a sheet and my daughter (who is a nurse) was worried and we came home. Had my own business dog walking that's stopped, was a full time carer for my dad as well and he passed last yr. Life was hard but good, then one day I was dog walking and found I couldn't walk. The best way describe it is like having the worst hang over and crawling through mud at the same time. Sorry for the rant but how can this all be in my head.

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Hi! Welcome to the group.

I think we've all felt like that at one time or another. It's definitely hard when you've just been diagnosed.

The NHS website is quite helpful.

It's important to remember that while it may be 'in our heads' it doesn't make it less real. It's a neurological symptomatic illness - not one that we have made up.

I hope this group helps you understand it a little more. It certainly helped me when I was diagnosed.

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Sorry if I upset anyone with my post, but truthfully everyone is making me think I am making it up and I am sick of it. As you all know this is so painful. Started of with an RA diagnosis through blood results but because I only had a finger swell and ankle swell they said I hadn't got it. They even put I can get out of bed easily get out of bed in the morning, what a load of rubbish I struggle to move in bed let alone get out of bed. Guess I am not ready to fight back yet but I am reading everything on here and hopefully can get some clarity on it all.

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You haven't upset anyone, Fibromyalgia is a debilitating condition and very real, you will get lots of support here x

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I agree that when your symptoms are mis reported by different medical reports and agencies it can pull me down when I’m feeling so low! This site and ongoing counselling really helps with that and I have started to challenge medical opinions - I make a list of my most debilitating symptoms just to clarify my situation and hand it over at the end of the appointment so they have a written reference point and don’t make their own interpretation of the conversation. Afterwards I have the confidence of knowing I have accurately represented myself and my symptoms which helps ease my stress and anxiety. Learning to be strong and assertive whilst dealing with fibromyalgia fog and pain is really hard but this site and counselling have really helped me. My thoughts are with you.

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Thats a great idea! Thank you.

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I felt I was losing my mind at the beginning. Couldn’t walk more than a few steps before the pain and exhaustion kicked in. Support sites like this help by hearing you’re not alone and you’re not imagining things

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That is exactly how I feel. I cant walk far and like I said I had my own business dog walking, loved it out in all weathers and had grandson in his pram and of we went. Now I cant run round with him and cant walk my own dog let alone run my business. Enough moaning time to read positive posts. Thank you for replying it does help doesnt it knowing your not alone

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Your not alone.quite a few of us also know how it feels with friends and family not understanding. Mornings are the worst part of the day for me, I take my meds 1/2 hour before I try to get moving!😟 Take care. Chris

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Thank you Chris. I am feeling brighter now I know its not just me

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It is not in our heads. My doctors made me cry but he has left now. I will write down everything I suffer and give it to New one. I will fight this time. Would like them to walk in my shoes. All the best to you x

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Was you diagnose fibromyalgia. I use work as teacher Secretary assistant not walk much not go outside much stay in my bedroom not feel safe anywhere have walker with seat 4 wheel use for balance have superventrical tachycardia stay tired all time not feel rested even when sleep. High blood pressure high cholesterol social anxiety avoidance social activity not handle noise loud sound hypervigilent agoraphobia claustrophobic anger disorder asthma allergy type 2 insulin dependant diabetic. Have 2 companion doggie daughter is care taker love her more she know tell her lot.

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No upset me been still there have some in family not believe I hurt always pain. Meds have not help have pain numbness tingle pin needle feel feet above ankles in thigh both legs take Lyrica ever since diagnose back 2010 not help tell Dr she do nothing. I suppose to have Humolog need prior authorize she refuse to try get it now have wait see new Dr tell September 17 2018 3pm. Put wait list for appointment cancellation they put me in. Anyone go through this Have Medicaid Anthem Blue Cross Blue Shield.

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