FND and scared of future.

[Arlo31]

Hi, haven't posted for a very very long time. I have CFS/Fibromyalgia and now FND. I'm so scared of my future as I know I will not be able to continue working. I'm again signed off work as my job (NHS) is to stressful and harming my body. (Consultant has said so) Will I be made to medically retire? I'm nearly 54. My husband works and carers for me. (Even writing that sentence makes me feel sad) We can't afford to lose money! Will I get support from benefits? I get PIP already. My body is broken and now my heart. I'm 54 and feel like I'm ready for the knackers yard. So much worry and stress which is obviously not good for my conditions. I never thought I'd be in this situation so broken and in constant pain with this now stupid FND. (Functional Neurological Disorder)

I'm waiting for the next saga in my life to unfold. ( Sorry I sound so gloom and doom guys) It's just exploding in my mind/thoughts all the time.

Recently had to have an operation on pinkie due to FND as brain didn't send message I was holding carving knife and nearly chopped it off.

Fractured elbow as legs have way.

On housing list for lower floor living and no help.

Vicki

[Sparkimoore]

Morning Vicki. Ive just seen your message & just had to reply with a bit of support my love. I had a similar situation back in 2010 after falling ill out of the blue in 2008.. It was finally diagnosed as a severe auto immune disease initially Showing as severe uncontrolled asthma, which was terrifying, esp as living alone as newly divorced.

It wasnt long before work were onto me re attendance & i was forced to apply for Ill Health Retirement, which broke my heart. I also was worried sick that i wouldnt be able to afford my mortgage on my little flat, and so many other things, like how was i going to cope with just life itself. I was so bad I dare not look to my future, as i felt i didnt have one. 14 years later, somehow Im still here. Beyond all expectations, Im more stable but still far from well, & thats how its going to be. All i can say is BE KIND TO YOURSELF, & go easy on yourself. This isnt your fault. All you can do is take things a day at a time. Im in Jersey, Uk, so not under NHS or the DWP ( if that s correct.. I mean benefits etc) There may well be changes because of your deteriorating health, but just accept all the support you can get, & im sure they arent going to let you lose your home, or they will find you something more suitable. I know these things dont happen overnigjt & are a huge worry. You must focus on yourself, & coping with your so painful condition. Make sure you get all the medical help you need and deserve. The situation will settle, and this will help you cope.

Im sending huge GENTLE HUGS!

Take care…

Rose

[Arlo31 in reply to Sparkimoore]

🌹Thank you Rose,Such kind words you have written ❤️

Really appreciate you taking time for me.

Unfortunately there is no support in my area for FND and my gp is and has been great.

Just feel angry that I've worked my adult life and now because my husband is still working im going to be penalised because of his income in not being able to claim benefits. We are not wealthy just working class with no luxuries, which will be see us further in debt now.

I hope something turns around for us.

Good luck in your future Rose and thank you again

Vicki

[Sparkimoore in reply to Arlo31]

MEVER EVER GIVE UP!!

[Fedupandtiredout]

I'm sorry to hear you're struggling with it all. I was given an ill health retirement in 2017 and I think it was the FND that clinched it for me. I didn't have a fibromyalgia diagnosis then, but I was losing the use of my arms, and struggling to walk. Once the stress of work had gone, the worst of it resolved, slowly over time. I didn't have enough money to keep my normal life going, so had to start again with a different one. I can say that seven years later, I am massively improved. And although it wasn't what I expected, I have a lovely, rewarding life now. Chin up!

[Arlo31 in reply to Fedupandtiredout]

Thank you 🌹😘

[bookish]

Hi, I just wondered what your last vit B12 blood test was like, or do you already get injections? Many of your symptoms could be B vit metabolism issue or straight deficiency. Best wishes

[Arlo31 in reply to bookish]

Hi, I've been taking B12 tablets for a long while prescribed from my gp. I've had blood tests and it's border line. Fed up with needles to be honest now. 🙄

Have another appointment with my gp soon so I'm just seeing what he says and he's amazing ( thank goodness)

🌹

[bookish in reply to Arlo31]

Hi, if your B12 is still borderline on tablets then you clearly can't absorb it. If it was borderline before the GP gave you tablets then you need to know why - if you are on metformin or methotrexate or a PPI or are vegan/vegetarian/meat avoiding or have had stomach bypass or other surgery, or Crohn's or coeliac or other autoimmune, or family history of B12 issues (Pernicious Anaemia or other). It is very hard to be certain that a deficiency is purely dietary (and therefore may respond to oral B12), and the only way to know for certain that B12 cannot help you is to have a trial of loading doses (6 jabs over 2 weeks) and it make no difference. Blood level does not correlate to symptoms as you can be deficient at cellular level and have low, normal or high serum B12. Mine was top of range from taking vast doses of oral supplements but the injections are not just stopping me getting worse but starting to repair years and years of damage. Good luck with GP.

[CheetieCat]

Hi Vicki, I faced a similar situation around 20 years ago, went from 2 wages to just mine, my partner has been unable to work since he was 35 so I've been keeping everything together since then. He's never had any benefits, only low rate DLA care & still hasn't been reassessed for PIP or the new Scottish one. It's a horrible position to find yourself in, I can totally relate but you will find a way to manage. Try not to stress and look too far in front, it's too much. Take care x

[Arlo31 in reply to CheetieCat]

Hi, it's so incredibly unfair isn't it! I'm trying not to look to far ahead but I could just scream at how some people play the system and live so well. Oh well in the end they can't have what we haven't got!

Take care 🌹

[CheetieCat in reply to Arlo31]

I know, honestly have no clue how they do it?? And trying not to stress is so easy to say but so hard to do! Think I was like something possessed for a while, poor partner was scared to look at me!👿😂You too x

[Yassytina FMA UK Volunteer]

Hello , I have CFS /Fibro , not the best combination is it 😞,I seem too be constantly fighting ,either my body is catching viral bugs, constantly or just really feel unwell ,no job for a few years as un reliable with these conditions, I live for descent days and the things that make me smile(,my little grandboys) its okay too pour your feelings out , we need to tell someone for sure. ,I hope members replies of advice is helpful , take care xx

[Arlo31]

Yes! That's so right, I get every flipping illness going. It's almost comical!! It hits hard as well, knocks me for six. Now having this FND well icing on the cake, stick me out to pasture. My grandchildren keep me going as well " Irish Twins coming up 2 and 1... 5 days between them. I use the double buggy as a mobility aid.

Take care