Diagnosis.... Or lack of.... Help 😭

[Maddy1974]

Hi. I was diagnosed with Fibro back in 2005. In the last 14 years I've been on Fluoxetine, Amitriptyline, Diazepam, Paracetamol, ibuprofen, Naproxen, Codeine, Gabapantin to name but a few. Hit and miss to which has worked and when.... None of them touch the pain now AT ALL! I've never had a scan and only had blood tests last month (which came back clear). The practioner nurse has referred me to the James Cook Hospital in Middlesbrough and they've rejected by referral request by saying "if its Fibro we can't help so we will not accept the referral".

I'm at a loss! I am currently on universal credit but declared fit for work after my assessment where they lied. I can barely walk 2 meters, cannot lift anything, can't get in the shower and cannot dress unless I have help. The pain is horrific. More recently I've fell several times attempting to walk. I have no sick note and my universal credit is stopping unless I find employment. I had been self employed upto 3 years ago so it has never been a problem as I chose my hours to work and could work from home if I needed too. Its now an issue.

I do not know where or who to turn too. I am a single mum with two boys aged 5 and 11. My 11 year old does everything and it's just too much to put on him. My closest family live over 100 miles away.

Can anyone offer any advice please? I'm really struggling.

Manu thanks.

[YASMINTINA FMA UK Volunteer]

Hello there, healthunlocked.com/fibromya..., I have posted this link for you there is a helpline open during the week, I would definetly call for some advice, what sort of referral was it for ?? Perhaps let the practioner nurse know about the refusal she may be able to help and I am thinking you may have already told her about your 2 young children, it really is not fair on genuine people that need help and a young family as well. Xx

[Hidden]

Absolutely dreadful I feel ur pain and how can you be treated like this. More and more people appear to be struggling with fibromyalgia ! It’s scary when you get no support. All this is added stress to the condition. Iv never felt so low in my life with how I have been treated but thankfully I have a loving husband and fantastic family but without them helping me god knows what I’d be capable of doing to escape this miserable condition that no one seems to be able to help us all we get is UNKNOWN or go away and exercise ! It’s a total nightmare!!

[Hidden]

Hi Maddy1974, I am so sorry to hear what they have done. These assessors are evil, they have no compassion and they fabricate things.

I had my esa assessment and was told on Friday I am fit for work. I asked for a copy of the report, I received it yesterday and guess what the answer to the questions are complete lies. I am struggling big time, but they said they will continue to pay my universal credit.

You are going to have to find the energy to fight this.

You need a scan/mri, you have had it for such a long time, they need to rule out other illnesses first.

Appeal it, make them listen to your circumstance and that you have 2 kids to feed. It’s so wrong it makes me angry. I know it’s hard when you are on your own and have no family support.

Best of luck xx

[Matt8394Alien]

I work in DWP and some of the medical reports I’ve read when they come to us from maximus are just incredible. I can’t go into it but you need to get a fit note and mandatory reconsideration. Mandatory reconsideration will probably sit for weeks upon weeks. They don’t make things easy.