Will some time off work help?

flowerpot

Evening all,

I feel like I am quite literally loosing the will to live, over the past 18 months I have really learnt the difference between living and being alive, and I fall firmly in the latter category. I have been suffering from joint pain in my hands, wrists, ankles, and toes for over 18 months now and still have no diagnosis and no real support. The rheumy started off thinking early onset of sero negative RA, then changed it to Fybromyalgia, now back to square one awaiting to see him again in 6 weeks time to discuss more blood results and an ultrasound. I am on naproxen and paracetamol/cocodamol in varying strengths depending on the pain.

So besides the physical pain I am having problems dealing with the impact it has on my life, summer seems to have passed me by as I haven't been able to do any of the activities I would normally enjoy.

I struggle endlessly with work, if I am not zonked out on codine so I can't concentrate, I am just over tired, or physically incapable of doing the task in hand. My to do list never gets any shorter, the garden is slowly turning in to a jungle! I accept I can't do everything I want to in a day, but it seems I can't even do the basics, household chores have to wait until the weekend, and then I am stuck facing a huge list of things to do, as there are only so many things I can do in those days. I am getting myself in a right tizz worrying about everything I haven't done, need to do and simply can't do. Has anyone else been in a similar limbo pre diagnosis? Work are willing to help me when I can tell them and more importantly their computer system what is wrong with me. The only thing left I can think to do is ask the doctor if he will sign me off sick, but not sure what good it will do other than give me more time to ponder over my situation.

Anyone know how to kick me out of this phase of feeling damn sorry for myself?

Poppyg1rl

Hi Flowerpot,
Firstly welcome to the Forum, the people here are the most knowledgeable, friendly and supportive that you could wish to meet I am so sorry to hear of your problems re diagnosis etc, trying to work with this condition (I have psoriatic arthritis) is very hard, but not impossible and it does seem that atleast you work place are willing to help once you get the right diagnosis. Please do see your GP and get their advice and help with all this, you need some time to come to terms with everything you're dealing with, so maybe some time off would be beneficial? Do you have a rheumatology nurse that you could contact? failing that contact your rheumatology department and ask for an emergency appt or a cancellation appt as this diagnosis needs to be sorted out one way or the other. Another idea is to phone the helplines here at Arthritis Care, the number is at the top of the page, they are fabulous and so supportive and a font of information, they may be able to help you.
I wish you well Flowerpot, come back and talk to us whenever you want to.
Take care hugs (((((())))))) xxx

weejean

Hi Flowerpot

Things are just so awful for you :sad: You probably feel as if you are hitting your head against a brick wall as no diagnosis has been made so you cant give any concrete information to your employer. I cant really help you with any advice about your diagnosis except that you have to be really persistant with your doctor and if you dont feel you are getting anywhere you should ask for a second opinion. I totally understand how you feel about things getting on top of you around the house and garden, it is so frustrating as your mind knows what needs done but your body physically cant do it. Do you have any family or friends who could come and give you a hand to get back on top of things? I know its hard to ask for help, I also find it difficult to do this but sometimes my sister comes over and gives my house a good clean for me just so I feel more in control again. Maybe you could take a short time off from work so that you can take your time to get some household and garden jobs done at your own pace and it might also give you a chance to rest and take stock of things. Its not easy being in pain all the time and there are times when we all feel that we dont have the strength to go on. Maybe you could also visit your GP and explain exactly how you are feeling and there might be some medication you could try to ease things while you are awaiting a diagnosis. I really hope things improve for you soon and you get some of your strength back. I am sending you great big hugs and wish you luck xx

chris7

Hi Flowerpot

So sorry to see this. Even with my diagnosis I can so much identify with you here and you do have my very real sympathy. Yep, too shattered after work to do the household chores and my wee garden sadly neglected too!! Not sure how you feel about being signed off, for me work, in a bizarre way is keeping me going, though I only do 4 days a week now. Not sure what your hours are? but could you consider reducing them? That might give you a bit more energy for the other stuff and some important, rest or YOU time to do a little bit of the things that you feel important or enjoy.

I too got depressed about the "to do list" so I binned it for good and just make time now for the things that have to be done, like eating and sleeping. It certainly works for me and I have learned not too stress too much about the neglected housework and garden.
I hope you do get a diagnosis soon and that work continue to be supportive. In the meantime just hang in there, you are entitled to feel down so try not to beat yourself up and I do hope things improve soon.
take care
Chris

julie47

Hi flowerpot

I am sorry that you are having such a bad time at the moment.
I hope that you can soon get a proper diagnosis and start the right medication to get your arthritis under control.

As for work.....could you possibly reduce your days to probably 4 giving you an extra day at home to rest. (just short term until you have proper medication that will help you feel better)

I hope that things start to improve for you soon and with the right meds they will.

Take care
and gentle ((((((hugs))))))))

Juliepf x

flowerpot

Thanks all, unfortunly I can't afford to reduce my hours at work. Without a diagnosis they won't pay me for it, it would simply be me reducing my hours by taking unpaid leave, rather than something the OT recommended, if that makes sense.

I have no support from the rheumatology dept, as I am not diagnosed with anything they can treat, my GP won't refer to me to an OT, or a pain clinic as I am not diagnosed with anything. Just feels like I face endless doors being slammed in my face.

As for a second opinion what a disaster that was, I went back to my GP for a referal to another consultant for a second opinion, I got an appointment after the usual 3 months, and then it got cancelled 20 mins before hand as the consultant was unable to attend clinic. I had another appointment booked for me the following week, I turn up and its the same bloke I had already seen :-( My fault I guess as when they phoned up to reschedule I just assumed it would be with who I was supposed to be seen with, not who ever was free. Anyway, the consultant has said if this last lots of results prove inconclusive he will send me somewhere else for a second opinion. I just hope that it's not another 6 weeks to see him, and then another 3 months, and I can't bring my appointment forward as its dependant on my test results coming back.

I will go and see my quack next week and see what they recommend, I just can't believe how the NHS can be so useless and how many more are stuck in limbo like me.

dreamdaisy

The NHS is far from useless. What tends to be the more problematic part of the NHS/patient equation is the patient. Arthritis comes in many forms and guises and can be very hard to diagnose. I had five years of being fobbed off (while my left knee continued to grow and grow) by one GP and a couple of rheumatologists. I got the last laugh tho by eventually being diagnosed with an 'inflammatory arthritis' which was, three years later, refined to psoriatic arthritis (after a burst of said skin problem). It wasn't necessarily the GP's fault in not recognising what was going in the early stages, although she could have been a damn site more helpful in referring me sooner - in fact she never did, it was the physios of our local footie team who made that happen for me!

Are you keeping a diary of pain, swelling and/or other symptoms? That can help people gain a better understanding of what is happening with you on a day-to-day basis. It is amazing how your mind can go blank the moment you walk into a consulting room so having notes, even photos, can be really useful. There are no miracle cures out there - the meds do what they can, which in my experience is not a lot, it is a matter of being quite stoical and battling on. One's life does change - coping with that change is a bigger challenge than the disease. I wish you well. DD

skezier

Hi Flowerpot,

Oh you do sound like your struggling and I know how hard that one is.

If you can afford a week off it might help but I do understand its not always possible financially.

Rest is what you need for the immediate time but the need for money does make that a catch 22 at times. Can you get them to lighten your workload at all?

I still 'work' but am self employed and it often means I don't finish till late but at least I am able to sit and rest up in between. At real work thats not an option but you sound like you need to so much.

I think it will be easier for you to know what you should do when you get some sort of diagnosis from them....

What they are doing is wrong and i would ask for a second opinion actually. Its hard to get a definitive diagnosis but they are not doing enough now while your waiting....

You could try seeing a different doctor and telling them how it is and ask for help?

Its a good idea to keep the pain diary and Anky's pain map as well would be so useful. A lot of diagnosis is made on the history as well as the symptoms you have.

Flowerpot you hang in there, rest up when you can and I so-hope they will hurry up and help you. Nice to meet you. Cris x

petals

I remember that pre-diagnosis period and it was very traumatic. For me, all my blood tests came back negative, and even after several retests there was still no evidence of RA. It was only when I eventually saw my Rheumatologist (11 months later) and she could clearly see how much pain I was in that she sent me for ultrasound scans on my hands and wrists. The radiologist said there was a lot of swelling and no wonder I was in pain.

I was so relieved that a long last there was real evidence that I was not immagining this awful pain and at the next appointment with my rheumy she confirmed that I did indeed have RA.

In the mean time I had already cut down my working week to 4 days instead of 5, I also changed to lighter duties as I could not manage the heavy physical job I did before.

Anyway I have now been diagnosed for 17 months, once I was put on the correct medication the pain was reduced dramatically. I continue to work 4 days a week as I feel too tired to work any more hrs. Arthritis affects us in many ways, not least in our pockets. I am worse off financially but I feel my physical well being is more important.

I hope you get answers soon, stay strong

Petals

tj66

Oh dear, such a familiar story. I can't really offer anything new I'm afraid cause I'm in the same sort of position as you! I have just returned to my full time job after crashing and burning out three months ago. If there is any way at all that you could have some time off-are u entitled to SSP?
I found occupational health very supportive and have just had a phased return. Your health must come first (I know that's easy to say with bills to pay) If there is any way to lighten the load before you exhaust youself.

People on here are amazing and they certainly got me out of a black hole!
Sorry not a lot of help, but my thoughts are with you-the one thing I love about this place is you're not alone.

Take good care and I hope things sort themselves out-just having a rant often helps.

Tracey xxx

constable

Hi Flowerpot

I am so sorry that you are suffering in this way. I think Chris is right, take some holiday of work, have a complete rest. And I am glad you are going back to the doctor, maybe some ant- depressents are in order for a while, at least till they can get a diagnosis, you obviously need something for now to help.

I shall be thinking of you and sending you hugs of comfort. Please keep us informed of how things progress.

Karen xx

dreamdaisy

How are things now, flowerpot? I hope you are feeling better/brighter than you were. DD

frogmorton

Gosh!!! :shock:

Flowerpot! you sound to be really suffering and struggling horrendously :sad:

you are in a tricky position and l would think about some time of work as Cris says 'if you can afford it' then your GOP will have to write something on the form too and you will have something for work in the short-term.

I can see (from your username) that like me you loves your garden and think some time outside might help you mentally a bit - it does me, but take things steady or you will soon end up back at square one.

Love

Toni xx