Really Struggling: As well as... - Fibromyalgia Acti...

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Really Struggling

tigerlily72 profile image
17 Replies

As well as fibromyalgia and CFS I have several other long term and chronic conditions. I've recently been off work for 2 months as my GP signed me off due to my fibromyalgia/pain and "low mood".

I returned to work last week but am only working a few hours a day and slowly building this back up to my usual full day and hours over a period of several weeks. But this week I am burnt out. My body hurts and aches, I'm cold and the fatigue is crippling me. I've had to go to bed early afternoon and have actually slept into early evening. It scares me as I need to work but I'm struggling so much.

I'm due a review with my GP in about a week as well as my annual diabetes review/blood test.

If anyone has any thoughts or tips I'd be really grateful. Not sure I want to "live" my life totally exhausted after only 3-4 hours at work and coming home each day and sleeping. It's not living, it's barely functioning! 😢

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tigerlily72 profile image
tigerlily72
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17 Replies
hayleyL95 profile image
hayleyL95

I am the same 3-4 hours and I’m exhausted I’m starting a new job next week and I’m so scared because I’m

Shattered and just want to rest

tigerlily72 profile image
tigerlily72 in reply to hayleyL95

It's so hard isn't it? And the weather isn't helping - chilly, drizzling and windy. But it's supposed to change tomorrow / Friday and be a lot warmer. I find warm and dry weather much better.

skit profile image
skit

Have you thought about applying for PIP? If you got an award the requirement to work full time ?

tigerlily72 profile image
tigerlily72 in reply to skit

I've just posted off an application for PIP (1st time applying) as a colleague suggested I should try. It took me ages to try and complete the form and I'm not sure I've completed it the best I can. I'm usually fairly good with paperwork but this latest flare and worsening of symptoms has floored me.

Maya23 profile image
Maya23

That sounds really awful. I can only work a few hours a day on good days, but I have to stay in bed on bad days. This is only possible because I am an artist and I work at home, and can juggle work around my health limitations. Sometimes I work from my bed. Is there a way of claiming benefits? Or finding a flexible work situation so you can work at home on bad days? X

tigerlily72 profile image
tigerlily72 in reply to Maya23

Unfortunately the nature of the work I do doesn't allow for working from home. Although, I guess with advances in technology it might do in the future.

Maya23 profile image
Maya23 in reply to tigerlily72

I hope so x

Badbessie profile image
Badbessie

At the present time you sound like your build up as been too quick and too soon. I am under a specialist pain team at present and from their advice you look at building up in months rather than weeks. Easier said than done especially if you are financially dependent on a wage coming in. Personally I believe you need to speak with your GP and take a step back. From your post you cannot increase your hours without increasing your own obvious problems. This needs documenting in your medical records.

At present you are not helping yourself nor your employer. In your own words you are barely functioning. It is a very difficult situation to be in. Sadly if you continue the decision to continue work may be taken out your hands realistically and you need to plan for that possibility. Realistically you can only struggle for so long and possibly you are only making your other chronic conditions worse. Diabetes on it own requires that you look after yourself. Your health must come first.

Speak with your GP about continuing work. Is there a benefits advice group that you can go too? Please don't take this as a negative comment but I believe in hoping for the best and planning for the worst.

tigerlily72 profile image
tigerlily72 in reply to Badbessie

I really do need to work as we can't live on my husband's income alone. I may need to look at a slight reduction in my working hours again. I'm going to discuss how I'm feeling and the exhaustion/fatigue when I see my GP in a week.

Badbessie profile image
Badbessie in reply to tigerlily72

Have you considered going for PIP? Or working Tax credits? Sadly I watched my wife who loved her work with children gradually reduce her hours until there was no options left. I truly hope you can continue to work but my advice would be to prepare for the worst just in case. Whilst my wife was trying to carry on I was collecting evidence such as health professional letters, keeping a diary of difficult times and the help she needed. She was awarded standard care and full mobility. You may not need to claim in the short term but it helps to think and plan for the long term.

ninjananna profile image
ninjananna

I didn't find your post negative at all!! In fact, that was very precise and accurate information, we are all important enough to be able to live a little...... Peace and love.... Ninja 🙏🏽💕💕

Am so sorry your so unwell and struggling with exhaustion. I understand as both myself and my teenager both have M. E and fibromyalgia on top of other conditions. I find if I drink bottled water no tap and take vitamin B100, cut out sugar and eat super healthy I can just about function. One chocolate bar and I am in bed for days. Try as many supplements as you can get. I highly recommend Manuka honey with fresh lemon in the morning lots of fish and salad and keep a food diary as it may help you. Get friends and family to help

You with household chores as you will be wiped out with running a house plus work. I hope your feeling much better soon. Take care. 😀

tigerlily72 profile image
tigerlily72 in reply to

I take magnesium malate, magnesium glycinate, high strength slow release vitamin C, green tea capsule and biotin at present along with prescription meds.

I love fish including salmon and mackerel and am trying to cut down on red meats but don't eat beef or lamb. I need to cut the junk/fast foods or at least limit them. Chocolate wise I need to go back to just eating dark (70%+ cocoa).

in reply to tigerlily72

I hope you start to feel much better soon I really do as I know how being unwell all the time it is just so draining. You may need other supplements. I was told I wasn’t absorbing the nutrients from food very well so I had to take a lot of vitamins and supplements which helped. It’s trial and error. I find ashwaghanda, serrapeptase, Q10, Manuka honey 850 and vitamin B100 really helpful so look up information about vitamins and supplements and see if you think any would help. Try them and see if it makes a difference I am currently taking 30 different supplements on and off and I notice when I stop taking them I am bedridden for days feeling so unwell. I think it’s the only thing keeping me going. Put everything in a diary and you start to see a pattern of what is making you so unwell. You could be developing food intolerances or allergies. At the moment I am unable to take any medication as I have had serious side effects and mild anaphylactic shock where I just took one tablet and couldn’t breath it’s amazing with fibromyalgia what can develope. Your diet sounds quite healthy and I know it’s so hard sticking to a healthy diet 24/7. I hope this is a good day for you and you start to pickup soon take care. 😀

Mandypandy1969 profile image
Mandypandy1969

I haven't worked for 5 years. I suffered with burnout for years on and off. Work really fast everyday. Like in hyper mode, next thing in depression and felt burnt out. Diagnosed with fibromyalgia in 2017. I also have other stuff. Sjogrens disease, bipolar/unstable personality disorder, depression, anxiety, stress, all sorts of stuff. Never ending. Hate all this stuff, no life at all. Can hardly do anything anymore. Everything causes pain in some way or another. X

Hamish142 profile image
Hamish142

I know exactly what you mean, I work full time and I could cry every day with pain I'm totally shattered and wish so much that I could reduce my hours but I live on my own and bills need to be paid. Like you I have thought that life's no longer worth living, so you are not alone.

klr31 profile image
klr31

Have you had your thyroid checked? As well as vitamin D, B12, ferritin and folate?

Karen

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