Please help!

I am diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. Every day I am in pain and so exhausted I have been falling asleep at work. I only work 3 days per week but those three days are full on. I am finding it harder and harder to manage. I am waiting for blood tests results for Lupus. My other results are clear. I have an underactive thyroid which I take thyroxine for. I am prescribed Tramadol and Naproxen for the pain but they are not much use.

My mum (who passed away last year after a stroke) was initially diagnosed with Lupus but then with Churg Strauss Syndrome which is apparently not hereditary. Her illness started just like this :(

I am reaching the end of my tether. Work have been understanding (so far) but the truth is they need someone who is reliable. I couldn't work at all last week I was just so exhausted - I know you will all understand the acute exhaustion that comes with Fibro and CFS. Its so hard having something 'invisible' to others.

I am so down (total understatement) and fed up and frightened I wont be able to carry on working.

Any advice would be so much appreciated - thank you! :)

13 Replies

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  • Hi Claire im,so sorry ur feelin like this I know how yur feeling the exhaustion is like nothing I've ever experienced I intially was diagnosed with chronic rapid onset RA then secondary fibromyalgia and then cps and cfs I managed to work a year after but it just became untenable...see about seeing a rheumy occupational therapist they help with day to day living also look at your work options you may have to come off for a while until your symptoms are under control...also look at your meds and speak to your gp if you have a good one....good luck :-)

  • Hi Claire2461

    I have read your post with so much pain and sorrow for what you are having to endure at this time, and I genuinely hope that you can find some resolution and relief to this issue. Can I also offer to you my deepest condolences on the very sad loss of your mum, and I sincerely hope that you have a close and supportive family and friends who have, and are still, helping you to come to terms with your loss?

    I am so sorry to read about your Fibro and CFS, and I genuinely understand how difficult this will be making your life feel at this time. I always find it helps to keep a pain dairy, whereby you mark the pain from 0 to 10, 0 being no pain and 10 being the worst pain imaginable. With this you write what activity you were doing and where / how long etc the pain was? As if any patterns emerge from this it could make it easier for you to discuss what is happening with your GP / Specialist and get more amicable medications?

    I was wondering if you claim PIP? (Personal Independence Payment which is replacing DLA). As if you do you could approach 'Access To Work' who can offer you practical help to stay in work? Such as paying for taxi's to an from work, or any work related accessories that you may need? I have pasted you a GOV.UK link below for you to see if it may help you?

    gov.uk/access-to-work

    I have also pasted you the GOV.UK link to 'how to claim PIP' just in case you are not claiming it?

    gov.uk/pip/how-to-claim

    I want to wish you all the best of luck with being able to keep your employment, and I know it is easy to say, but please try not to worry too much about losing your job as this will add to your stress levels and make your Fibro worse!

    All my hopes and dreams for you

    Ken x

  • hello Claire

    Oh sorry to hear you are so down, and please be kind to yourself.

    I know how important it is to continue to work but how hard it is. What type of work do you do. I appreciate that I am lucky but I now work from home and do the hours to suit me as long as my deadlines are met. You may need to think outside the box. Getting PIP if you don't already and advice on how you can make your job work for you.

    All the best, and gentle hug.

  • I have Fibromyalgia and Chronic Fatigue Syndrome and a Underactive Thyroid, Tramadol and Naproxen did nothing for my pain but caused me to have ulcers. I have not been able to work since I injured my neck and back and turned on the gene in 1977 I have gotten worse over the years I am being treated by a fibro research specialist. I am not familar with the other deseases but Fibro and CF will taked you off your job. You might start to thinking about preparing to apply for Social Security Disability. I hurt everyday I am fatigued all the time. Fibro is a vicious debilitating desease it destroys life as you knew it you are never the same. I hope this helps.

  • Hello Claire. For practical matters Ken's is the best advice. It's hard when you feel alone but rest assured we are with you. I suppose take it one step at a time is best, and don't worry about things that are unimportant or haven't happened. One of my bosses wants rid of me, the other is supportive and it's a struggle at times.

    I did the on line PIP self assessment and scored zero :( but there are other things.

    See if there's a way of doing your work with the present condition. There may be none, but its worth a try. Do see CAB fairly soon too and take as much information as you can. They're very good at finding all sorts of help, not necessarily in a conflict situation.

    My work can only be done at a particular time, so its not amenable to flexibility. I hope you find a solution.

  • Hello Claire. For practical matters Ken's is the best advice. It's hard when you feel alone but rest assured we are with you. I suppose take it one step at a time is best, and don't worry about things that are unimportant or haven't happened. One of my bosses wants rid of me, the other is supportive and it's a struggle at times.

    I did the on line PIP self assessment and scored zero :( but there are other things.

    See if there's a way of doing your work with the present condition. There may be none, but its worth a try. Do see CAB fairly soon too and take as much information as you can. They're very good at finding all sorts of help, not necessarily in a conflict situation.

    My work can only be done at a particular time, so its not amenable to flexibility. I hope you find a solution.

  • Wow - I am really taken aback by all the support and help that you guys have offered :) Thank you so much. So much to think about and look in to, I had never heard of PIP or thought of going to the CAB etc. You are so right - all the constant worry is making everything worse :( I had a couple of cancellations today and ended up sleeping in the car for an hour as I was so exhausted. Just cant go on like this.

    Thank you all so very much :)

    Best wishes

    Claire x

  • So sorry sweetheart. If you have lupus on top of Fibro God Bless You. Fibro is terrible enough. I tried my best to work but it became impossible. You just never know what you are going to feel like the next day. Plus on our good days we are lucky to get everyday chores done. If we over due it we can be out of commission for days, or weeks. It's hard not to over due it because we never know the next time we will be able to do the simplest of things we used to take for granted. It's very depressing to have to I've up our independence but you have to know your limits for your healths sake. If you can get into a pain clinic it would greatly improve you quality of life. My pain is now at least bearable, yet you must learn to pace you self. I hope this helps you sweetheart and pray you get a negative result on your Lupus test. If I can help you in any way just let me know. Hang in there. xxxx Mitzi

  • Hi Claire, I was in the same situation as yourself at the start of the year (Hypo and then diagnosed with Fibro). I had a trial of prescription meds - tramadol, amitriptyline, refused anti depressants and could only conclude that I felt the same with them as I did without them so I stopped taking them.

    Since April I have been taking a magnesium supplement, malic acid, Vit D and Vit K and am starting to feel so much better - sleep improved, muscle & joint pain improving though still have "morning stiffness" and feel my mood is lighter too. I know this may not be something that would work for everyone but it may be worth thinking about - there is a lot of info to be found if your willing to trawl round the 'net, try this article for starters maybe?

    prohealth.com/library/showa...

  • Hi Claire,

    I can't really offer anymore advice than you have already been given. I hope the other replies, help you feel you are not alone. Fibro alone is harsh to live with, let alone adding something else on top! As people say, you really have to learn to not overdo it, as this makes the condition sooooo much worse afterwards. We all do it, when have a better day (I was going to say good day, but we only really get days where the pain is more bareable) , and we overdo it, trying to get on with everyday tasks!. Then laid up for days afterwards. My consultant said you should try to do the same level of things everyday. He discribed it as his hand going horizontally in a straight line. He said if you have days where you can do more things, doesn't mean you should, then his hand went up and down like peaks and dips. That is not what we want to feel, with peaks and troughs as high and low, explaining this is the levels of pain.

    So I try to live my life in a straight line. Except like Saturday I was so ill, I ended up in hospital, due to something not fibro related! OMG!!" The pain because I hadn't had any of my meds for three days! So have come home yesterday and have done nothing since I have come home. But, I know, when I start to feel better, I'll have to watch it!!

    Ken, I found your links very informative........thank you.

    Take care Claire sorry about the long fibro fluffy head feeling, that has made me not be able to explain myself very well. There are lots of lovely people on this sight. Who have, so much information, care and support. Take care. X

  • Thank you once again for the support and advice :) Its so nice to be around people who understand. I am sure people around me think its in my head :(

    My Lupus results came back today and are all clear thank goodness :) :) :)

    I have a meeting with my two bosses in the morning to discuss how they can help me. Am very nervous which is silly I know.

    Thank you all again - I really appreciate it :)

  • Hi Claire,

    Do let us know how you got on with your bosses today. Have they come up with some pro-active ways to help you?

    Look forward to hearing your update. Take care x

  • Hi Lizzyear

    My meeting is at 9:00 am in the morning - feeling really nervous :(

    Thank you very much for thinking of me and asking after me :)

    Best wishes

    Claire x

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