I have recently been diagnosed with fibromyalgia/chronic pain syndrome. It has taken 4 years to get to this point as I also have spinal degeneration in my neck and lower back which was clouding the symptoms of the fibromyalgia. I had a spinal fusion on C4 C5 & C6 C7 last August but it hasn't really helped. Due to all this I am being retired from a 35 year career in local government, it's not what I want but I am coming to terms with the fact that as a male at 51 it is unlikely I will work again. Has anyone else been through the retirement process? I am waiting for my appointment to see the pensions doctor in Manchester to see what level of retirement pension they will award me. 3 levels of the retirement, 1 is full pension enhanced to retirement age, 2 is 25% of years remaining enhancement and 3 is just pension built up to now and reviewed in 18 months to see if you still deserve it. I have to prove that it's more likely than not that I will not be able to work 30 hours per week. I will have the chance to appeal if I don't agree with the decision. My GP and neurologist consultant are being very supportive and have done reports for work that support my retirement. However I keep being told that due to my age of 51 it's unlikely I will be awarded level 1. Even though age is not mentioned in the retirement criteria. I suffer from constant pain in most parts of my body, pins and needles, lack of sensation, bowel and bladder problems, sweating, exhaustion through lack of sleep, blurred vision and on and on. I wear 2 morphine patches which I change ever 4 days. Also other medication such as amitriptyline, naproxen, paracetamol, liquid morphine as an extra shot of pain relief when required, omeprazole, bumetanide. Like a walking pharmacy..
Can anyone offer any advice.
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Ijo1
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I should have also mentioned that I have already been awarded PIP at the lower level and that I have a blue parking badge. I wish I could turn back the clock 5 or 6 years to a time before pain. Unfortunately I can't do that so have to accept this now and try and stay positive. There have been some dark times for me because of this pain and have had thoughts of what is the point of carrying on. Think I am over that now and want to start to build a new life the best I can.
healthunlocked.com/fibromya..., good morning, I hope some members come along with some helpful advice, it is hard when fibro/other conditions come along and life for many has to lay out a different path. I see you have been awarded pip at a lower level, we have a helpline for advice healthunlocked.com/fibromya..., it may be helpful to read and ring for some advice. Although it is not what you wanted to retire but will take pressure off you being able to start the day at your pace and not the worry of being at work at a certain time, being in pain is horrid, hopefully you can pace yourself, catch up on some rest during the day when you have not slept well some nights ,and in general do some little things you enjoy, yes the pharmacy companies must do very well as each prescription adds up, I also posted a link if you want to lock your post as only our community can see, keep us updated, and hope you find the forum a helpful place as I have.
Thanks for the reply. I will read and ring the helpline for some advice. I have been off work since surgery last August so have found it better and can pace life in a more suitable way to help live with the condition rather than when I was at work. All I did was work and then feel complete exhaustion which affected family life. Now have a little control over most days. Just the stress of this retirement hanging over me. I know I am lucky to have worked for LG and have a pension but I have heard some terrible stories of people not being awarded anything.
I do hope it works out. Let us know , my fingers crossed, glad you are pacing now.
Hi hun..I took early retirement 4 years ago,it was not easy aged 61.,I was nhs who allow retirement aged 55 but they put up a fight...have you a union rep? Also an occ health person?..have you applied for PIP?could you reduce you hours? Has your employer made provisions for your condition and needs? I managed to get tier 2 with pip allowance basic and ESA..I have to manage on £1090 per month,ask yourself if you could?? I officially retire end of this year onto gov.pension and hopefully keep PIP. My main killer was brain fog /cog.impairment which isn't as bad now away from stress but let me tell you juggling finances in itself can cause stress..
Hi NurseGladys123. I have the union on side also OH nurse has been great. She tells me that my role was the sort of role they would look to redeploy people in to so no chance of redeployment. They did get me a rise and fall desk, new chair and keyboard. I also reduced my working days to 4 and used up 250 hours of owed time reducing my hours over 6 months by 10 hours per week. All to no avail. It was a pressurized management role and with a foggy head was very difficult as well as all the pain and toilet problems. I do get lower level PIP and due to my length of service I could manage financially if I am awarded the pension. Need to know what I should be saying to the pension doctor as apparently he writes a report and it goes back to a none medical HR person to decide the level of pension awarded. Thanks for your reply. Take care.
I too was recently medically retired, I was a Dock worker and was suffering with lots of pain, was getting breathless and had tremors. I’ve finally been diagnosed with fibromyalgia, pulmonary fibrosis and degenerate spine disease and waiting for further Neurological investigations.. I’m 48... I am waiting for a decision to be made on income protection paying out. I am also waiting on a PIP claim decision. With everything going on it’s the constant pain which moves around the body, brain fog that not everyone understands, and the fatigue that arrives hard and fast that I find the hardest to cope with. So far my Rheumatologist and GP have been excellent, the Neurologist dismissed all my symptoms, I’ve now been referred to a London Neurologist.
I’m taking Etoricoxib. baclofen and the maximum amount of gabapentin and co-codamol.
The issue for the LGPS will be the cost of providing a pension 14 years early, as well as any uplift in years served. Each year of service added, requires the scheme to allocate 40 times its value in capital to you. The cost is enormous. So an extra £1,000 in pension requires the scheme to set aside or invest £40,000 to cover it.
I have been through this too.
A better report on your health would be one from someone who has not treated you, but is an expert in their field and truly independent. Can you persuade your Union to commission it? Either now or as part of an appeals process later? It will carry far more weight. Typical cost is £3,500.
Your PIP at Standard Rate suggests that while you are disabled, you are not as disabled as some others, so it could be used to argue that the top pension is inappropriate in your case. Do you get any Daily Living PIP? Is it just mobility? You could apply for a review of your PIP on the grounds that you have got worse and are being medically retired. Any increase in PIP would support a higher pension award.
Hi. Thanks for the reply. I get the daily living lower level PIP that I receive from DWP. Can I ask how old you were when you retired and what level you managed to be awarded?
I will speak to the union to see if they will commission a private medical report. Thanks for the suggestion.
I have been thinking of applying for further PIP but having heard stories of the process being a bad experience I keep putting it off. When I applied the first time it all went smoothly and within 8 week had the award. I can see your point of how it could help though.
Hi. I really appreciate you replying to my message. Glad you got the full amount from your scheme. Fingers crossed (if it didn't hurt) that I get the full amount. Sorry to ask but which scheme was it? Or which area.
Just need to gather as much information from lots of resources so that I am fully aware.
Hope you get along as much as possible without pain or debilitating symptoms and you are enjoying retirement.
No advice but my story. Aged 77. Had Fibro at least 35+ years. Diagnosed 10 years ago. All similar symptoms as you, degeneration of spine, etc. plus several others. Finished work in 1993. Redundant. Not had a penny since. applied for disability and thrown out. Had only paid small stamp (actually put more into system per week than friend working part time paying full stamp) mainly due to lack of advice and working short term contracts, but always full time and never unemployed, even though it was a struggle. No financial help until got OAP at 60 £70 p.w. DH worked until 75. Now 81. Now he has dementia and is disabled and is almost immobile. ( no financial help) plus other medical conditions, as have I. Attempting to get attendance allowance, because as we have saved for our retirement, apparently cannot apply to get anything else. Neither of us now drive, although DH has a blue badge. Could do with finance help for taxis for hospital visits, shopping etc. Doesn't help that I know people fitter than us, living the life of Riley on benefits. Holidays abroad, full social life, etc. Money no object. Have had a really bad two years and it is still ongoing, with trying to keep myself afloat, looking after the running of the home and also my husband. Ending up in tears on a frequent basis Never seem to have time or energy or brain power to get around to looking at any paperwork. Doesn't help that husband is in denial and keeps telling anyone and everyone he is fine. Which is true I suppose, as I am keeping everything afloat, just about, whilst feeling ill most of the time,, but unfortunately looking OK. Any advice would be welcome.
It sounds as if you have been badly treated by the powers that be. Can I recommend a website called Turn 2 Us, who can do a check on what benefits you could/should be getting?
So sorry to hear your start. I used the Turn 2 Us helpline number 2 years ago for help with my mothers benifits. They advised to try for pension credits paid weekly and Attendence Allowance paid 4 weekly she got them both so was over £140 each week better off and on top of that we got a letter from the council as the DWP had contacted them and she got 100% council tax reduction and the 6 months repaid to her that she had paid that year. Attendance allowance is not means tested. Seriously I think you should try it.
I mentioned to 2 elderly neighbours and they both got something as well. They dont advertise these benifits you have to find them yourself.
Thanks ljo. We have already put in an application for attendance allowance. Apparently that is all you are allowed to claim for if you have savings, but I am not holding much hope out as my husband insisted on telling the lady who came to see us just how fit and able he is and how he doesn't need help with anything, and that I only said I was ill to get out of doing things, to make him do them! None of which is true. I was so upset I sat there almost in tears and forgot everything I intended to say. He has been diagnosed with dementia and is in denial. He can help with some day to day tasks, like washing pots, but I effectively run the house, and supervise everything from Dr's and hospital visits, to anything else that needs doing. He doesn't go anywhere on his own and is reluctant to stay in the house by himself, even for a short while. Plus he can only walk short distances with a stick and has several other medical conditions. On my side, I am more physically ill than he is with the fibromyalgia, and am really struggling most of the time, in constant pain, don't sleep, plus I have other medical problems, which he doesn't acknowledge. He knows I am ill, but like everyone else I come into contact with they dismiss any problems I have because I look ok. I can only hope the lady saw through the bluster he was showing off, but because I was so upset and angry with him, I forgot to give her the list of medical conditions we both have and pretty much everything else I wanted to say. What I don't need is extra work by having to go to an appeal.
Our stories sound the same only I was a nurse, I had to fight all the way for my ill health retirement FULL pension at 48. I heard the age thing too but you’re right there is no age limit plus it’s to safeguard people like yourself that want to stay but can’t due to disability & illness.
Fight for yourself, your family, after all those years in service you deserve it.
Get all the medical info you can, I got letters from everyone I could, I didn’t care in the end, swallowed my pride & just kept going till I got what was best for me & mine.
Ask GP to refer to Occupational health, physio, pain management, mental health support, write to them so they know how stressed you are & the need for their support & medical evidence.
Apply for PIP & ESA in the meantime. Oh & although my union rep was like a chocolate teapot I think the organisations tend to behave themselves in their presence. Don’t go to meetings alone!
Thank you so much for the reply. It does sound very similar to your situation. How long did the whole appeals process take? Which level did they award first?
Already get lower level PIP daily living allowance and have to apply for ESA as SSP runs out at end of February.
First application I was told No but I thought No way you’re having that money I spent years earning, I asked GP to refer me everywhere I didn’t care in the end, got letters from them all as evidence & won top level ill health retirement on appeal. Just shows if you keep pushing.... It took 18 months in total & I was skint for most of that time. It’s standard to knock you back for most things these days but keep going.
When you say 18 months, what was that for. I have a good report supporting me from my neurology consultant and another from the rheumatology consultant and expect to see the pension doctor within a couple of weeks. Work have told me that it will then take another week or so for a decision so I was hoping it would all be over within a month or so. It's been going on since august 2019 when the OH doctor said I was unfit for work. They actually also said that in November 2018 but I struggled on for another 9 months until I had the fusion surgery. If they award and I appeal do they pay the initial award until the appeal or do they not pay anything?
If the decision goes your way then that’s all good but I expected a fight & wasn’t disappointed.
I went off sick July 2016 applied & got decision No. NHS let me go in Jan 2017( I got my final wage plus A/L so double my usual amount).
Anyhow I was left to fight back on my own cos you no longer have access to their Occupational health dept, management, HR etc. on appeal I had to justify all their stupid reasons for not granting it, so that took a lot of counter evidence from professionals ( in letters they should state your conditions are chronic, lifelong, progressive) decision came back in October 2018 as Yes top award. Then had to fight to get access to the ££ got that in Dec 2018.
Glad not to be working because I just couldn’t do it anymore but I’m still struggling losing my career, wages, etc
Thank you all so much for your replies and input. I am touched that so many people have responded but if anyone else wants to reply the more information the better.
Kindest wishes to you all and I hope you all have a pain free and symptom free evening and also get lots of nice sleep, you deserve it. My faith in human nature has gone up in leaps and bounds.
I wanted to give you all an update on my request for information about going through the local government ill health retirement process. It has taken since August 2019 but last week I received official notification that I have been awarded the top level tier 1 retirement package. I would rather have my health back and continue my career that I started at 16 and worked my way up to senior management over the 35 years.
At least I now know I will be financially secure for the rest of my life. The process was appalling and the lack of information and communication from work since August 2019 when I had a spinal fusion has been awful and nearly pushed me over the edge. All this as well as also being diagnosed with fibromyalgia in January 2020.
If anyone else is going through the process keep chasing work or they just keep putting you to the back of the queue, even complain to the CEO about the lack of information and the fact the process rules are not being followed correctly.
The news of the award came on the day of my 83 year old mothers funeral, so I think she was looking down on me. She passed away on 30th March in hospital and due to the no visiting rules the last time I saw her was the 26th but managed a phone call on the 29th. I spent an hour with her on the 26th before being asked to leave so had the chance to tell her that I loved her and what she meant.
I will never forget the 8th of April, the day we said goodbye to mum and the day my retirement award letter came through. Mum's always look after us.
Hope you are all staying safe and trying to make the most of self isolation.
Hi, I'm glad you had a positive outcome. I have degenerative disc disease and recently been diagnosed with Fibro. I'm like a walking pharmacy with morphine etc. I'm still in L G work but I'm holding on by my fingers. I feel completely useless and feel like my life is disappearing. I hope I could retire on I'll health as the pain I'm in is seriously affecting my mental health.
I just got fired for being ill so often, but instead of registering it as fibromyalgia they wrote down headache, back pain, nausea, IBS etc . So after 10 years I got kicked out. They played mind games that ended me in hospital. Police was called and they called ambulance.
Oh my lord I am so sorry to hear you story. It wasn't made easy for me but the outcome was better than I expected. They tried mind games with me and are still doing so, things like working out monies owed incorrectly and making me prove the right amount, also not sending letters that they should be sending and not having a zoom meeting that was arranged for over a month. I only have a few weeks left of my notice period so will then be free. I can't wait. Perhaps you could look for a new more considerate employer, or can you apply for pip. Don't know your situation so these are just suggestions.
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