diagnosis?: Hi good people, how nice to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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diagnosis?

7 Replies

Hi good people, how nice to find this warm and understanding corner of the internet. I've recently just totally hit the wall, months of getting by on less than 20 hours of really bad sleep a week, a poor/very occasional diet and a really stressful workplace have taken their toll, i'm exhausted.. a physical and psychological wreck.

I was referred to the Rheumatologist just over a year ago after developing what I thought then were general aches and pains, pins and needles and poor sleep. The Rheumatologist report confirmed tests for Recent FBC. ESR, CRP, renal bone liver, thyroid, CCP, RF, ANA, ENA, Compliment levels, Lyme serology, xray of hands, wrists, chest, ultrasound scan of hands and wrists normal

Diagnosis - 1) Osteoarthritus 2) Dequervains Tenosynovitus 3) Fibromyalgia

Other Problems - 1) Anxiety & Depression 2) Sleep Apnoea 3) Follicculitis

"Clinically I explained to the patient he has Osteoarthritus, and elements of Dequervains Tenosynovitus & Fibromyalgia"

^^That was my diagnosis a year ago, since then my condition seems to have intensified, especially over the past month or so. I had to take a week off work sick at the end of September, I asked my GP to make a referral back to the same Rheumatologist for a confirmed diagnosis as I don't believe the one above really reflects the pain, total lack of energy and haze of poor concentration i'm suffering. Am I asking too much? or a mention of 'Fibromalgia Symptoms' as far as a diagnosis goes for an unidentifiable condition??

When I returned to work the pressure was just intense, my boss messaged me to meet with HR in 10 mins. When I got there they wanted me to start a 'personal improvement plan' I thought was really harsh, my most recent review was good (April) and my attendance has been good/average despite feeling like a zombie and wanting to be anywhere but work most days. A one to one would have been more appropriate and less stressful. When I returned home that evening I had a really horrible episode.. anxiety/panic attack and it was dreadful, everything happened at once, my brain emptied all its contents seemingly simultaneously.. white noise and sweats, my very lowest ebb and I never wants to go back there. I took two holiday days on my return to work, one for removal of a wisdom tooth and one to cover fatigue.

Last week I met with our onsite Occupational Health at work and thankfully the nurse was familiar with Fibromyalgia. She sent a report to HR and my boss arranging for a desk assessment and recommending reviewing working hours and working from home where possible. I was supposed to be at work on the Monday for the Personal Improvement Plan still.. but didn't sleep all night, not a wink and I don't think my boss was impressed, I still don't think she relly understands this. I went to see my GP at 9am totally stressed out and broke down. It was awful and really tough but a huge release, she signed me off work sick for one month. A big releif, but i'm not sure if I can go back to my job. I'm having huge confidence issues, my self esteem is rock bottom and its playing on my mind.

I have an appointment with the Rheumatologist again on Wednesday and want to leave with a more confirmed diagnosis that I can return to work with and approach them with ways I can improve my contribution by altering my job/workload and hours worked. At the moment I have no workers rights as although i'm a permanent employee, i'm 2 months short of gaining 2 years service - this is also weighing heavily on my mind and bringing additional stress and paranoia. I have a strong temptation to remain on the sick until 2020 because of this, the extended break and certainty of the cover of gaining 2 years service would help my mindset greatly. Has anyone else had the same problems or gone through the same process with work? How did you go about it? Where they considerate to your requests or helpful in your needs? Any advice warmly received xx

7 Replies
NannyNooNoo profile image
NannyNooNoo

I would suggest that you contact ACAS with regard to your employment concerns, check with them whether your understanding of the 2 year timescale is correct. ACAS are usually very good - it’s what they’re there for! Try to get your diagnosis on Wednesday; and see if you’re prescribed any medication. Try to take it a step at a time - if the diagnosis is arthritis of some type, or fibromyalgia, it will likely take some time to come to terms with that, and for any medication to start to work. When you’ve got the diagnosis (and probably meds), then you can start to think ahead & see if you can approach your employer to discuss reduced hours/reduced days/flexi time/working from home etc etc. Maybe look at a mindfulness app? Keep us posted with how you get on - lots of people here have different ideas & coping strategies. Take care

Hi

I'm so sorry you are feeling so rotten. I have many conditions as you do. Please try and see what your rights are like Nanny NooNoo said check with acas and there's also citizens advice.

I was lucky, I had an extremely understanding boss who tried everything to accommodate me but in the end I had to take ill health retirement last year, my boss was and still is supportive. She said she was just doing her job but it meant the world to me . Please let me know how you get on . Love and hugs Lynne xxxx

Also, I get one hour or less sleep per night but I'm lucky at least I can have a nap. I just really feel for you xxxx

Supul profile image
Supul

Your employer is exacerbating your symptoms and undermining your confidence. This job is causing you untold misery and will make you more sick.

The concept of the 'sick leave meeting' was a good one, in theory. The idea being to support an employee back to work eventually.

In reality, most managers within the workplace make the experience too personal in terms of judging and punishing an employee who is not able to fulfil their work role expectations.

In sum, they want to, and very often do, view such an employee as a financial burden within the workforce, and coerce an unwell employee to resign. Sometimes, the poor person is sacked whilst on sick leave.

Other times, the employer is truly seen as trying to get an unwell employee the correct return to work plan whilst side moving them, or suggesting shorter unpaid hours.

Add to these scenarios that overworked colleagues are unsympathetic to an employee who is off on sick leave, and the whole idea of policies supposed to help staff, falls down completely lacking in actual provision.

Your job is making you very unwell. To your peril stay.

I have suffered with much of what you are experiencing, and when I eventually left my job, it was so late, having been so ill pushing myself into work for so long, I then collapsed and was blue-lighted to hospital.

I am still paying the price, in terms of worse health conditions, and wish I had listened to my body and left the job years before I did.

Don't be like me. You are too unwell to work and not getting the support you need.

Good luck.

in reply to Supul

Thank you so much for talking the time to read and reply Supul, it really means a lot, thank you.

You are absolutely correct, so succinct and understanding. Likewise I feel like I've been carrying this for years, a few weeks ago I was so fatigued that I was almost delusional, the panic attack took me to what I can conceive to be the edge. I have no idea what lay after that. The workplace is the very worst place for this to be played out. Im very glad that I managed to finally I'm introverted, have always battled social anxiety and low self esteem so to have my life judged and ultimately decided by 3rd parties/colleagues is possibly the worst case scenario, i'm at anxiety overload. I know, and have known for a long time that I can't continue like this, but unfortunately I feel like I have to work as I can't see the other options clearly. It feels like trying desperately to fix a car whilst driving it. I just wish I could pull over and forget about the destination, but the destination is 2 dependents and a mortgage. I want literally nothing for myself, just space to manoeuvre through this. Im terrified that if I stop.. or even start back at work everything will fall down in spectacular fashion, I just can't work out the next step, or even how to finish the last, I just can't see the path.

I've decided that the only option open to me/my health is to take sick leave until 2020. I've been off for 3 weeks and know my inbox will be full. I work for a big corporation and its relentless. On one hand there are company policies and protocols, life insurance/critical illness etc I need to explore (I'm not hopeful) , on the other I feel totally hopeless with an overarching sense of guilt about it all, I lack the conviction to tell the doctor I need this, I just don't know how to go about it, surely it's my decision? I feel like I'm the only person who knows this. Everytime I open up I feel like a phoney rambling on in rehearsed verse about it, I find it difficult to explain what I don't understand. I just wish I could defragment and print my thoughts.

Sorry about the.. blah :( thanks Oldham12 & NannyNooNoo also, I meant to reply but, fog, I'm guessing that you understand :)

in reply to Supul

Hey Supul, 4 months later and your kind reply and sound advice stays with me. You were absolutely right by the way, and I thank you for it :)

Supul profile image
Supul

Dear smiler

My thoughts are with you.

I have just read your reply to my post.

I can relate to much of what you are experiencing. I will never forget the additional burden I felt through the workplace mismanagement of me becoming very unwell.

The judgement, the punitive mishandling of an employee going through very challenging illness. Those managers added to my suffering and destroyed a part of me forever.

Your plight appears harsher because of your financial obligations and dependents. However, I urge you to speak with citizens advice and get some much needed support. There are benefits that surely, you are entitled to whilst you focus on getting well if you lose your job?

I believe you when you say your current need is to take time out through long term sick leave. It is the rational response to what you are trying to deal with. Tell your doctor. Tell work managers. What's the worst that can happen? You may be dismissed, because poor employers, or their managers, will find a way of getting staff out of their company, because bottom line is economically speaking, unwell people are a financial burden in the world of business. Shame on them.

Getting rock bottom has an amazing other side, that means your life can actually improve no end. A new beginning, where the real, true you, who is merely asking for support can begin to heal, get well, and find that wonderful new company, that values and supports its employees, especially when the chips are down.

Don't push yourself for more years, and collapse, as I did. Do what you know you must. Get well, because if you do collapse, your financial worries will still have to be dealt with, but it will be much harder...

Please take care of lovely you. Becoming ill is not your fault. You have not committed a crime. Your merely human. Until you accept you cannot continue as you have been, you can not know what your life journey has in store. Dare to believe, one day, you will be so thankful for the lessons in life your ill time has taught you.

Good luck. X

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