Help in the u.k ???

[Mrsbeav]

Hi I have been diagnosed with fnd after several stroke like attacks losing my sight speech and loss of strength on my left side this is on top of my ptsd , hypermobility syndrome , depression, anxiety and fibromyalgia. Ive spent years struggling I feel like I’m being emotional and physically tortured. Every time I think I’m getting somewhere the

specialist refer me back to my gp with a list of dosages and tablets to take.

Im getting no where and I’ve got children to take care of with no support I need to get better . Is there anyone in the u.k who can help me ??

[Mygeordiebud]

Hi

Have you applied for Employment Support allowance and also PiP. I get both and it’s a great help.

Regards

Mark

[Mrsbeav in reply to Mygeordiebud]

Hi I’ve been denied pip on the grounds I’m not ill enough because I’m able to care for my children with no support. They don’t seam to have understood that I have no choice no matter how much pain I’m in or how exhausted I am i haven’t got anyone to take over . I spent 5 days in a stroke unit and I come out and my husband left me . I haven’t had no rest or stopped since .

[Mygeordiebud in reply to Mrsbeav]

Hi

Have you appealed if not do so, also your local Citizens Advice Bureau will help you fill forms out correctly as it’s so easy to reply to a question wrongly as you often think I can do that but actually it causes great pain. The idea of PiP is to give you the financial help so that you can use the money to pay someone to help with cleaning house etc whatever you need help with.

So appeal and every day is a bad day. If you can get a letter from your GP staying what’s medical wrong with you it all helps. If you have any letters from hospital stating what is medically wrong it all helps. When you appeal first time it’s done by them but second appeal is done in front of 3 medical people and they can actually see how you are, if you will Money is then backdated to when you applied for PiP Same for ESA appeal I only got mine through appealing.

Mark

[Dot50 in reply to Mygeordiebud]

Sorry Mark, I didn't see your reply before I waded in! Great advice you gave - just shows you have to persevere to get the help that is due to you.

Dot

[Dot50 in reply to Mrsbeav]

Did you appeal the decision? My daughter went to the CAB and asked them to help with her appeal, and she got it. Don't give up, good luck.

Dot

[LouBL0u]

Hello

I'm sorry to hear of your illness and it has taken me a while to find treatment. I have now seen a neurologist at the Rosa Burden Centre in Bristol. I have been offered a three week in-patient rehabilitation programme at the centre. I have been searching for out patient support for 10 months but last week when I went to the Rosa Burden, was advised there is not specialist community support for this condition in the South West...it may be different where you live? FNDHope, list treatment specialists, so you might find their web sight helpful.

Good luck

LouBLou

[CreativeCraftyCats]

Hi

Sorry not sure where you live in UK but there isn’t out patient support or inpatient help that I have found or been offered in the West Midlands.

All I can offer is support and you will get lots of that on here.

Hope you find the help and support you need. Xsx

[Mrsbeav in reply to CreativeCraftyCats]

Hi I’m in the West Midlands to , it’s so frustrating that you can’t get any help. X

[Mygeordiebud]

I have been on the 3 week Rosa Burden Center and it helped me come to terms with emotional stuff.

Physio if great there and he improved my walking some who had for years walked with a stick stopped using it and walked out of the Center without help once there time was up there.

Mark

[LouBL0u in reply to Mygeordiebud]

Hi Mygeordiebud

Thanks for the post. Please could you let me know if you were able to return to work or whetehr the cenrtre was able to advise on recovery timescales? I keep thinking I'm going to be "cured" and get back to the job I love but this has been going on for almost a year (following a blow to the head) and It would be great to know one way or the other! Sorry if this is a big question but the first neurologist I saw in January expected me to recover in weeks... Thanks and have a good day

LouBLou

[Mygeordiebud]

Hi

No I was not able to return to work as I also have had a L4 spinal fusion and a L5 disc decomposition but I’m still left with severe spinal pain

[LouBL0u in reply to Mygeordiebud]

Hi again

So sorry to hear about the complications - wishing you a peaceful and happy day

LouBLou

[Mygeordiebud in reply to LouBL0u]

Pleased you got a admission date.

Every Monday you go in a room where all the doors physio’s are there and you tell them what’s happening with yourself and they tell you what they are planning to do in that week very informal so don’t get worked up when in there.

Physio is great he deals with all neurological disorders and will watch how you walk record it and play it back to you showing you where you can improve in your walking.

The neurologist is also great there and also the psychiatrist as I had a Lot mentally to deal with and a I came feeling great.

Recommend the hydro bath there really is great

Mark H

[AddNothingToIT]

Hi, I have FND too and have only just been diagnosed after eight years of severe pain. Recently I went to see my local neuropsychiatrist who ended up being helpful. They can refer you to treatment clinics in different areas but apparently your CCG (local fundingJ have to pay for it. Each area should have a Neuropsychiatry team and your GP should be able to refer you. Perhaps if you haven’t already seen them you could try that. It’s not easy to find help. I really hope you find some help soon. You have to keep pushing and chasing doctors like crazy to get anywhere, I’m pretty sure some of the specialist secretaries don’t like me very much but I don’t care. To inspire myself to keep going I actually have started a podcast about my experience over the last eight years with chronic illness and chronic pain called ‘Add Nothing To IT’. It is my way of using my voice, which is all I’ve got left, to achieve something - even if it is from bed. Lucy

[Hidden in reply to AddNothingToIT]

How can we listen to your podcast please Lucy? :0)

[AddNothingToIT]

😊 you can listen on Apple Podcasts, Spotify, YouTube, below website, by searching ‘Add Nothing To IT’

Here’s the link to it on apple - podcasts.apple.com/gb/podca...

Or - addnothingtoit.libsyn.com/

Or Spotify - addnothingtoit.libsyn.com/s...

Lucy

[Hidden in reply to AddNothingToIT]

Wow this is amazing well done! Can’t wait to have a listen xxxx thank you xxx

[Hidden in reply to AddNothingToIT]

Lucy this absolutely brilliant I love it already listening to your story and can listen it while I try to this boring resting business!!! thank you so much! Made my day!

[Greeney in reply to AddNothingToIT]

I just listened to your podcast great job and I will continue to listen to future episodes as I suscribed on apple podcast

[AddNothingToIT in reply to Greeney]

Thank you 😊 I’m so glad you like it. Lucy

[AddNothingToIT]

Thank you! 😁💕

[CreativeCraftyCats]

Thank you for the podcasts going to have a listen. Hope your having a good day. Xsx