Not fit to work "X"

[TommyShemik]

Hi everyone, I’m new here and really need some advice.

I’ve been signed off as “Not fit to work” by my doctor since Nov 2024 due to ongoing health issues.

On 2025, I was taken to hospital after because of severe pain in my back (my doctor has not been helpful at all).

I had CT and MRI scans, that confirmed moderate cervical spondylosis been refered for physiotherapy

I’m in constant pain, which affects me, and overall quality of life. I’ve also requested my full hospital records. Do you think this is Fibromyalgia? I’m not sure 🤔

I’m also waiting for a brain scan on xx April 2025, and I’m now under investigation for possible seizures. On top of that, I’ve started having memory problems—sometimes I just go blank and can’t remember things for like 1-2 min.

That being said, I can still do most things normally, but it’s difficult when I get up from bed or when I stand or sit for too long. Walking isn’t an issue, though—I can walk normally for now I don’t know for how long im 43 almost.

My current fit note expies in end of April 2025 Mandatory Reconsideration was denied.

I’ve never been this much in pain before. I’m exhausted & in pain, and not sleeping well—I was up at 2am again today.

Do you think this is Fibromyalgia?

If anyone’s been through this or has any advice, I’d be really grateful.

[cosmondo]

Hi mate, sorry to hear your troubles. I'm about a decade older but started having my issues around your age, similar.

They now say I have fibromyalgia, just to tell you that a diagnosis isn't exactly much help, you'll still be the same person having the same issues.

I've been off work close to 3 months, the longest ever in my life. I find it's best to keep moving & motivated, going to work seems to help with this for me - conditioned worker bee.

Hot baths with epsom salt, stretches & keeping moving regularly are the best for me, but not always able to.

Medication hasn't really helped much, they just offer you the next one to try it something doesn't work.

Basically, having a diagnosis is not a lot of help as they don't really have a clue or give much of a damn. I thought giving my issues a name would help, but tbh it didn't.

Don't let it get on top of you, give it hell.

[TommyShemik in reply to cosmondo]

Hi, thanks for your replay, so I can see I’m not alone with this, sorry to hear about your pain. 😕

I wish could go back to work 🥳

[jojotom]

Hi and welcome to the group not sure I can be of any help but when you say your in constant pain is it back pain hip pain? I'm only asking as I have hip pain lower back pain due to arthritis and when I sit or lie down the pain starts I like you find once I'm mobile the pain is less I follow a lady called abi Mills yoga and I never thought I could do anything but she has some basic easy steps to follow it's about gentle exercise for hips and back I've found this helpful it's very easy and doesn't take long.. I was diagnosed with fibromyalgia 3yrs ago after I was diagnosed with coronary heart disease and had to have stents I was put on lots of medication and i refuse to take any more meds for the pain due to side effects I have bad days and then worse days but hot baths help I find biofreeze roll on helps as it directly goes to where it hurts. Are you on any medication for the pain?

[TommyShemik in reply to jojotom]

Hi I have been prescribed pregabalin 50mg but I have read about it and quite not happy with that much side effects. It hurts on spine and arms and hands, but when I go sleep and wake up my legs are killing me absolutely exhausted and lack of energy.

[jojotom in reply to TommyShemik]

I'm same when I wake up some mornings are better than others maybe try seeing a different doctor o saw a physio and basically just gave me exercises to do but I found the lady I follow on FB her exercises were much easier and definitely helped

[Kodisnan]

I have fibromyalgia and all the symptoms you showing could have it to. Mention it to your doctor see what he/she says. You mite also be able to get pip look into it !!!

[TommyShemik in reply to Kodisnan]

Thanks for response Kidisnan, my doctor haven’t done anything my GP since I have reported that at the end of 2025, I’m looking into PIP JUST Jow waiting for paperwork from them ( Thanks 🙏 )

[DJK99]

Hi Tommy

I hear you - I am in severe pain all the time now - and it has been getting much worse in last 6yrs, but in the last 2 years it has become pretty unbearable. I have Lupus, Sjogrens, widespread inflammatory arthritis, osteoporosis (and my recent DEXA bone density scan thankfully - but not really! - shows "significant bone loss in the hips" - like I don't know it - can hardly walk these days). I have tried gabapentin and the other one, amitryptilline (like a cosh!), recently Duloxetine and they all leave me in a dreadful state - and don't work for me anyway. So I am back on codeine and paracetamol 3 times a day, but once it wears off the pain comes back like I'v e been beaten up and poisoned. My memory is dreadful too.. in this much pain, and presumably you also have severe exhaustion(?), it is bound to be affected. I am so sorry you are going through this.

Have you had all your bloods done thoroughly? Ask for complement 3 and 4 levels, redo of your Full Blood Count especially your neutrophils, and a full and wide test of all autoimmune antibodies (there are a huge array now... so not just your ANA), ANA Screen (not ANA on it's own as this has changed), all test for autoimmune diseases such as SLE (Lupus), Sjogrens, Scleroderma, repeat CRP, ESR etc for RA, Ferritin (if v elevated this can show inflammation - mine is sky high). Also - has anyone tested your Ferritin alongside your Transferrin Saturation levels? If they are both very high (Ferritin over 1000(for women anyway) and TSat needs to be 50% or over too) this shows Iron Overload - which affects all bones, organs etc. I have had blood tested for Haemochromatosis (Iron Overload) and found I am a carrier, with only a small chance of having Iron Overload it self - and yet I have all the symptoms.

Have you had a DEXA scan? This is very important to understand your bone density levels - ask for this ASAP.

But, yes, I have Fibromyalgia too which can leave you with the symptoms as you describe in a bad flare (although there is no test for this btw- or is there anyone??? - I think it's just an assumption given if they can't find any other reasons.... and is often a very lazy diagnosis in cases with lack of other tests I find...as people are often left living with other conditions for years sometimes, until someone does extra tests and fills in the dots, no judgement).

Have you logged your details with PatientsKnowBest.com - it's the NHS site for patients to see all their blood tests - and scans (well some of them but not many!). It's great to keep an eye on your levels and see how things go - but also will show you what you need to know to ensure you have your ducks in a row when discussing with medical professionals - very important to be up to speed. Also, ask your GP to give you the access to your nHS GP records - this will show you all the letters/referrals between clinicians, and everyone should have this I feel, if they have capacity (ie are mentally independent). GP reception will give you the code to log on with a password and then you change it once you are in.. et voila, you can check in whenever you want and see what's going on.

I wish you all the best, please let me know if these tests have been done and try not to worry - however I know how hard this is.

D

[TommyShemik in reply to DJK99]

Hi can you read below ? 👇 please 🙏 and thanks in advance

[TommyShemik]

Hi thanks for your help I hope you recover soon as. Thanks for PatientsKnowBest.com I didn’t know about it ( thanks 🙏 ) I have created login in and let see what happen. Ask GP for access all documents etc. obviously it will take time.

My Last 3 Consultations export from GP.

Is this diagnosis? See picture attached above

GP export

[TommyShemik]

And this one from Hospital - not been working since last year and suffer from this pain obviously need look at PIP as an additional benefit as I’m not fit work.

do you think those 2 letter should be enough?

Hospital

[DJK99 in reply to TommyShemik]

Hi Tommy -

Well it diagnoses you with moderate cervical spondylosis I guess. Did they sit with you and tell you about it all? Did they tell you what you need to tell your employer, and what this means for you for work in the short/long term?

Have you read up about the condition? Easy to find all the info on the web.

I just read this : "Life expectancy for people with ankylosing spondylitis is the same as that of the general population, except for patients with severe symptoms and complications. Ankylosing spondylitis is a chronic, inflammatory autoimmune disease". I take it they have tested for Ankylosing? They'd need to test for the antibodies as it's an autoimmune disease. You'll be able to see all your blood tests on PatientsKnowBest and you should be able to get in with your nHS number and dob etc, no problem. The GP surgery will just give you the form to fill in and you can go away with the password and get straight in.. if you can get there in person as unsure if they post this out, but probably... you just need to call them and ask how.

So you're started on Pregabalin (a nerve pain interrupter - yes, that's the other one to Gabapentin) - both of which I tried. Just read this: "With nerve pain, it's thought to block pain by interfering with pain messages travelling through the brain and down the spine". Is it making any difference yet?

My issues aren't likely to be going away as I have some very serious other health conditions, one is an obvious one that 1 in 2 have these days (I think that's the latest), and all my organs are up the spout, as born with all this. I just get through the days ;).. but thank you.

I don't think that info will be enough without another chat with your GP for further sick notes... but I'm not an expert, of course, so best to call your GP etc.

Then - do you have a Union? If yes, call them asap and join them ie get a paid membership - it will be invaluable! I had all the help in the world from them when I could finally no longer work at all and got retired on ill health at 55. I'm 62 now. I was in Social Work and you have to be tip top mentally and as physically as possible, to get to and from assessments and meetings all day, every day, far and wide. Intense in all ways.

Then - does your company have Occupational Health dept? If yes, you will need to ask your employer to get you in to see them and start the ball rolling if you feel unable to go back to work... You'll have various assessment appointments with them and they are there to support YOU to suggest to your employer the adjustments to your work/work environment or hours or whatever, to help you return to work...or...... to say you can no longer work at all. After 6mths of not working things start to get more serious, as you might imagine.. and as a year looms you'll have some decisions to make, or your work will make them for you... but you're way off that by the sound of things... and I don't know what kind of work you do/your type of company - some are better at all this than others ie have Equal Opportunities first and foremost as Public Sector Councils etc do. You need to tell work that you have been started on meds - or rather, you need a letter from your GP (think they charge although mine didn't so maybe not) to say what treatment you are under and how much longer you need off to see if it is going to work, ie to allow you to be able to return to work - or if they have referred you to Rheumatology? Doesn't look like it - but they have referred you to Physiotherapy... So I guess your treatment plan is Pregabalin, Physiotherapy and GP to reviews required?

So, my advice would be - Join a Work Union and contact them to discuss your situation and what you need/want; contact GP and ask for discussion on ongoing sick note and letter to your employer to explain why you need to stay off work for now, if required, and just see how the medications and physio help etc.

Hope this is helpful - I may have misunderstood some questions and info.

All the best Tommy

D

[Africanmonkey]

Hi Tommy, I have exactly the same as you and I am signed off work. I also have chronic back pain, fatigue, my upper arms are in chronic pain 24/7and the rest of the body is hurting me. I have found going back to work has helped me a little bit but I get carried away with it as I enjoy it and so regret it later