Help find me a specialist who knows about Fibro

Hi I live in the East Mids ( Nottinghamshire) and am trying to find a good specialist that would be able to write a report after consultation setting out that fibro has no cure.

I am having terrible problems at work ( despite access to work place Dr) and obviously I have my own GP. The work Dr seems to think that the medication will work and I'll be back to being 100%. That isn't the case and I read so many others who say the same so my end game is to put a stop to this thought process so they treat me correctly at work with the right adjustments ( or even better medical retire me)

So back to my initial point I am prepared to travel but would like to know of any experiences and anyone you can recommend in this sort of area of the country.

Thank you

15 Replies

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  • I don't know whether it is enough evidence or help but fibro is recognised by the DWP as a disability. Many get ESA and/or PIP with fibro and although a consultant's report may be helpful, most of your ongoing treatment is with your GP.

    Your GP will be able to refer you to a rheumatologist who will confirm your diagnosis if you feel happier to go that route.

    Your workplace has to make adaptions to enable you to work safely and comfortably. They should also consider reducing your hours. Do not leave your job without exploring all of your options, including looking at your contract of employment.

    Go to the government website for more details, GOV.UK.

  • THank you for your reply.

    I have a diagnosis from a consultant but that was in Jan and I thought that would be enough, however it seems not and the work place Dr keeps saying medication will make things better. What they don't understand is that it's work that's making me so stressed and ill. There is currently 10% of my office off with work related stress.. that's a lot !!! They are clutching at straws as I only have 3 years left to do in this job and they don't want to pay the medical retirement money especially as I am just about managing to get to work ( part time) . Therefore I thought if I could see another consultant I would be able to explain and ( pay if necessary) for a report outlining Fibro and that med eases but does not cure fibro etc...

  • Everything helps thank you.

  • Hi..do you have a physio? Mine put together a good report of treatment and stated how important continuity is just that the nhs can only supply a 6 week therapy...I had my g.p confirm same and also state there are no pain killers that stop fibromyalgia pain and that the condition is progressive..it cost me just £5 goto get these letters.

  • Hi Roll.....really sympathise with your predicament.

    I live in Notts too, and retired from a really challenging job at the age of 58. By that time, the symptoms of Fibro were becoming really acute and making it impossible for me to work efficiently. I was fortunate, as my employer allowed me flexible hours and eventually I took voluntary redundancy, with a service payment, which I assume is what you are hoping for. With 10% of their employees on sick leave, it does make me wonder what may be lackng in your workplace and why the employers would be reluctant to pay someone to leave.

    It took a long time for me to obtain a definite diagnosis, and even now am not certain if I may have Lupus, as I do have 8 of the factors.

    You ask about sympathetic Consultants....in my experience, over the past 8 years, having seen different ones at 2-3 hospitals....all appear to have conflicting ideas / attitudes / prescribing regimes, with a couple of the medications landing me in hospital with debilitating side effects. The best and most informed and sympathetic specialist has been one of the female Consultants at the Balderton Pain Clinic (referred by my own GP). There is probably a Pain Clinic in your area, so it is worth a try.

    A booklet on Fibromyalgia may help your employer to understand the difficulties you live with daily, and any medication can only relieve the condition temporarily.

    Hope this helps!

    Gurney 👍

  • Hi Could you tell me who this is at Balderton please? I live there !!! I go to another Gp's in town though. However the Consultant that assessed me was from Kings Mill but that was at the balderton clinic so maybe they are the same team?

    Thanks

  • The Clinic is on Lowfield Lane, and the Consultant is a lovely Greek lady who has an unpronounceable name, but everyone refers to her as "Dr Anika".

    She is the ONLY person I have been referred to in over eight years who really seemed to understand, talked sense, and came up with some pain relieving treatments, without promising "miracles". Recently, I had 5 spinal injections because on waking I was barely able to move, and had parasthesia in both arms. I would say this has been about 60% helpful, painwise, but I still have the numbness in arms and finger ends.

    Which surgery in Newark are you registered with? Small world ay?

    Gurney

  • Hi Roll178

    I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck my friend. I was wondering if you have ever been assessed by an 'Occupational Therapist?' As this could be quite useful as they would make recommendations to your employer and fight your corner for these. It may be worth asking your employer about this?

    It may also be worth finding your local Fibro group as I am sure they would know the best doctors in the area? I have pasted you a link to the FMA UK support group page:

    fmauk.org/contactsmenu/supp...

    I want t sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Hi Thank you for your response, the work Dr does form part of the Occ Health team and have been seen by both a Occ health ( OHU) nurse and the dr twice. They never make it clear . For my next apt I have the union with me.

  • Good luck my friend.

  • I was just about to ask if you are part of a union and suggest you get them involved, as others have said the specialist diagnoses then passes you back to your GP so may be worth ask them for a letter to explain meds help us to try and manage things but there is no cure so that is the best we can be offered and that stress has a huge effect on symptoms. I sympathise with you I ended up at a capability hearing & was terminated due to ill health! I asked about medical retirement but FMA said no as I would improve??! So that was it because it needed her support so now having to go through the stress and rigmarole of applying for esa! Good luck, take the union to every meeting and I hope you get medical retirement xxx

  • Thank you everyone for taking the time to respond with very sound advice. I think given that I have been in "the system" I shall write initially to the consultant and ask for a letter etc... My next apt with work force Dr is in Dec so I have some time on my hands to collate my info ( thought I'd done all this so quite stressed back to the drawing board) Doesn't help working with ignorant people that snap and bark and that's not fibro related. Can't wait to get out of the awful environment. So it'll either be medical retirement( i'll not hold my breath) or 3 more years whichever comes sooner !!!!!!!!

  • Hi Roll178, sorry to hear about the pressures you're facing at work, I agree check out your options if you like the job you have. Have a look at Disability Rights UK web site. As for them seeming to think that as long as you have your pills then you'll be healed and normal, they seem to need to be educated as to what FM is, if they don't understand then they could possibly be infringing your rights in the workplace as someone with a disability. Reading between the lines I think I can feel that you feel in danger of being put upon when you are not up to it, and are worried , I don't quite know what their game is, but I hope that you can get the right resolution for you.

    I hope somehow between us you can get a solution which suits you and not them. Xxxx

  • "Their game" is this... as long as I am in work and not off sick they will push and push and push the boundaries to get the most out of me whilst running me into the ground. Why? severe staff shortages plus over 10% of workforce off with work related stress, etc etc. The Work place Dr and Team are under instruction from HR who are under instruction from the bosses. They want as much out of the workers as they can possibly get. I don't like my job ( and unable to declare what it is) but I am contract bound for the next 3 years.

    Today I have composed a letter to my specialist with printouts of report from the work place dr and work ethics/procedures within my job.

    I hope he'll respond as I am quite literally at the end of my tether

  • It was even suggested that it was hormonal and not Fibro ( despite specialist confirmation the latter) I can only assume this is to get me off the disability/disabled etc because at the moment they can't touch me whereas if downgraded to hormonal they can. The cynic in me thinks this!!!

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