I’m new to this forum stuff but I’m desperate. I’ve had the crippling condition since I was 13. I get no extra money, never even scored 1 point in 3 DWP Medical assessments and 2 appeals. Then went for PIP last year. My sons even at 11 a young career but I still scored 0...appealed it after being diagnosed with fibromyalgia In my hands late last year and still scored 0.
I do not remember time i slept for more than 2 hours or the last day I was pain free. I call it my ‘Body of Pain’
The doctors have told me only anti depressants and pain killers will help but after 22 years I’ve tried every concoction known to man and I’m still in pain...if not more so!
I asked for CBD only to be told by my GP to keep buying it how I buy it ‘online’ 22 years I’ve lived with this and I know it is the only medicine that helps me still sort of function and get half decent sleeps. It helps my anxiety, depression, pain. It’s magical stuff.
So I’m stuck folks? Has anyone else had it for this long?
Written by
Elite1512
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Sorry to hear you have had this awful agony for so long, and no one seems to be helping you manage your pain, it also sounds like you are being let down by the DWP and Assessors.
Firstly, just so you are aware, many of us have gone through this application for PIP, and some for ESA, and had really bad experiences, where they lie on reports about our condition and how it affects us, and underscore us, or score us zero, many years ago, I too score zero and was utterly gobsmacked and couldn't understand why.
I recommend you get help with reapplying, and then appealing if necessary. You need an advisor to help you word the answers in a specific way. Some people use The Money Advice Unit, or a benefits advisor, or Citizens Advice Bureau advisor.
I am 45 and have been in pain which started at 8 years old, first in my knees, then I got agonising back, hips, pelvis and neck problems, then it progressed from there, from the age of around 14, so I completely understand your pain, low mood and frustration, it feels like we were born into a malfunctioning rubbish body, and is grossly unfair 😥
Unfortunately I can't give you any advice of how to get CBD on prescription as myself and others I know, haven't had any luck either, and I buy mine from a trusted company called Healthspan, its all we can do. I also find most medications don't help at all, but some of us are prescribed Amitriptyline by Rheumatologist and this definitely helps me to stay asleep for 6 hours, do be careful if you are prescribed it, as it has made me put on 6 stone, and putting weight on, makes mobility worse in my experience. I do recommend a healthy diet of unprocessed foods, fresh meat and fish with the fat cut off, lots of steamed vegetables, especially green ones with Kale and Spinach, nuts and seeds, and moderate fruit intake (try and limit nitrate containing foods like onions and potatos) avoid sugar and limit starchy carbs as much as possible, and try to choose rye breads, pumpernickel and gluten free when you do eat bread, its all I can advise at the moment. Exercise may hurt and feel unachievable for some, and certainly for me at the moment, but if you can, it will help long term, I used to be in the gym every day up until 5 years ago, and it massively helped; I stopped because of personal circumstances with one of my children, and because of the break in routine, its very difficult to get back into it because I am seized up, and also developed Ankylosing Spondylitis, but I wish I had never given up as I know I would not be anywhere near as disabled as how I am now 😥.
Try graded exposure, and start with physio exercises and stretching, and gradually do more bit by bit, and maybe you could try yoga. The Fibro Guy has made an excellent DVD exercise plan for us too, which may be worth buying and trying.
healthunlocked.com/fibromya..., healthunlocked.com/fibromya..., morning I am so sorry to read you've had fibro from such a young age, I’ve posted a link above , call the helpline during the week to ask for some advice I hope you find this helpful. I think I’ve had fibro /cfs long before it was diagnosed and for me brought along anxiety/depression, I am on duloxtene the last year and this has really worked for me, as for the pain side I do have codiene that wears off after an hour or so, I find I have to bed rest at home for pain to go off on really bad days, but try keep on the go when I can.I have never tried cbd yet. ps I also posted the other link if you would like to lock your posts as gives you more privacy as only our community can see. X
I started with knee pains at 14 and I’m now 56 well 57 end of the month. I was diagnosed around 30 years ago with fibro but also have OA in my hands knees, hips, and back all I can say is what everyone else has said get someone to help fill the forms in and if they turn you down appeal again get as much information about medication etc you have tried and tell them about it how it affects you on your worst days. I hope you get some help soon. It’s tough when you have to fight for everything.
I've had fibro since I was 12...I'm now coming up to my 59th birthday! In the early 70s no one had even heard of fibromyalgia. I was seeing a paediatrician who gave me all manner of treatment and medication but because nothing ever showed up in my blood the medics were flummoxed so they called it "rheumatoid syndrome".
I used to cry with the pain and went to school with crepe bandages on my hands and knees. Now here we are 47yrs later and no further on with cause or cure. I do know how you feel. Keep your chin up.
Hi I believe I have had fibromyalgia for many years, it’s only been diagnosed lately when I got a doctor who took me seriously and looked into the history of my notes. I had been at the doctors for many years comparing of feeling tired, flu like symptoms etc ..... again I was not awarded any PIP and I don’t know how to get them to see that I am suffering.
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