So depressed, feel like a fraud, no further forward, what a rubbish year.

[goingaroundthetwist]

Was at another rhuemy appointment yesterday and even though I had a positive anticoagulant blood test, apparently this still does not provide evidence for Lupus. I have read lots of blogs and questions and answers on this site, and have been told by other site users that diagnosis is almost impossible, as it's 'labelling'. And that is what the rheumy mentioned, that some people like to get labelled. It's not that I want to have lupus, I just want to know. As there are conflicting areas of information about the genetics/hereditary implications, as I have children, it would be great to have a 'heads up'. My Methotrexate dosage was upped. The Rheumy is keeping an open mind, even though I have other indicators. Problem is, what am I supposed to tell work? I was advised by a kind soul on this site to take in a journal which I did do, I only hope it gets looked at. Now I feel like a total fraud, although I was totally unable to do anything before the methotrexate. I am frightened of reducing the prednisilone as well. I now feel as if I should bite the bullet and push to get back to work, only because of financial problems. The Gp says he has to wait to see what the Rheumy says, who said it's up to the GP to sign me back on, but would only want me back on a phased return in 10 weeks, which will be in the gp letter!!!! - but if adjustments have to be made, what are they? So, I've still to be off work, getting into financial mess for some kind of something that doesn't have a name but seems to have a great many of the symptoms of lupus. I have elements of sle and elements of sjogrens along with raynauds. I finally see the occupational therapist in a couple of weeks after about 6 months of waiting, and am hoping for some practical assistance. I'm so depressed and cannot sleep. When this first manifested itself to the extent that I actually received some medical attention, I naively presumed I would get medication and be better within a week or so. I kind of wish I had just soldiered on (although I know that was impossible) and just pretended nothing was wrong - like so many others . The strange thing is, that up until the hospital appointment I was starting to feel more cheery!!!!

[tracynoe]

I know how you feel I have been in the same situation. 7 years ago I started to get very ill and lost over 7 stone in weight in 6 months most of the time I was to ill for work but I pushed myself to the point of collapse and I paid for it having to have more than 6 months off then a phased return. My Rheumy actually classes me as having undifferentiated connective tissue disease, vasculitis raynauds and others. Dont let the not having a label put you off get all the information you can for your employers and explain that what you have has a lot of symptoms from lupus etc. The fact that you are on methotrexate means you are being treated for an autoimmune disease. Show tyhem your diary of how you couldn't do anything before treatment and what you can do now, if you have a good occ health dept they know who is ill and who is trying it on.

Good luck

Tracy

[goingaroundthetwist in reply to tracynoe]

Hi Tracy, thank you. Yes, Occ Health have been relatively good about everything so far, and I'm sure they will do what is necessary for adjustments if as you say that I get all the information, this is a good tip, thanks. I do want to return to work., and am very lucky to be in the situation that I am in, perhaps the second half of the year shall be better, I should look at the glass being half full.

I hope that things have levelled out for you if that is at all possible.

Thanks for listening and sharing.

rtt

[Hidden]

This is thinking out of the box ... take it or leave it ... you have a prescription for METHOTREXATE yes? (and likely and assortment of other Rxs to - Prednisone etc.)

Print out the Rx labeling to offer as 'proof' to anyone in doubt. The Rx Methotrexate could be considered chemotherapy for your autoimmune disease / disorder. The word chemotherapy tends to grabs everyone's attention. Use it to your advantage if necessary with your work situation.

You have an autoimmune disease / disorder of some nature or you would not have been prescribed those powerful medications. For some (for many if not for most) patients it is a hurry up and wait situation. Your illness is significant and severe enough for the doctors to step up and treat your symptoms prior to having a confirmed specific diagnosis. You are very lucky to have such good medical attention and care. Take comfort in it.

Prednisone can cause insomnia but then so can anxiety, frustration, and fear of the unknown.

I know this is a very frustrating and difficult time for you but try to give yourself some grace. You are human. Everyone gets sick at some point in time. Accept that this is your time and allow others to help you through it - at work at home at Hospital at the bank (if loans are required) etc. Be thankful for the extra time with your family and make use of the time as best as is possible. The future is unknown to all humans. Focus on the now. The situation will improve. Take care of yourself. May you be well soon.

[goingaroundthetwist in reply to Hidden]

Hi Nouska, yes on methotrexate, prednisilone and hydrochloroquine. You are so right that I have had good medical attention, and actually I have been so thankful for being in this country and having the NHS, this has been a real blessing. And again you are so right, I am extremely fearful of the future and normally would be extremely optimistic, so that is very interesting that you have pointed out the prednisilone effect, thank you for pointing that out. I will try and accept help, perhaps that's the problem, that I've been too independent. I will print out the labelling for Occ. health. I like your thinking out of the box!! Thank you for your reply and your good wishes. I wish you the best of everything.

rtt