Having just read the blogg on" what do you think" by Julie- Im not sure if Im sticking to rules for site either.
If as Lynn says its for posting bloggs by patient experts on specific subjects is there room for newbys to blogg?It seems all thats left for us is to chat/or ask questions. Is that such a bad thing? I thought that would mean we could unlock waht we want to know!
I find it helpful to ask other People who have had RA longer what their experiences have been regarding a given issue.
Hence I mainly like to use the Health Unlocked Site to trawl for patient experiences rather than chat. However I always need to back it up with a wider picture I think eg other sources NRAS/ARC/CONSULTANT/NICE etc
My concern is that Health Unlocked could be off putting for newbys who want info who feel they are breaking into a close group who know each other very well and from which they maybe feel a bit of an outsider. That prob cant be solved though can it????
Now what I really want to know is what are the variables for the people who manage to stay in work!!! I want to be in that category if I can eg age, gender., DAS, etc???? if we even know? I heard only 40% are in work 6 yrs after diagnosis- but I want to break that down some more to make more sense of it.
Thanx to anyone who inputs- Hope is not too depressing for anyone who likes a more lighthearted blogg
Fiona.
14 Replies
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Hi Fiona,
I am happy to see anything in blogs and anything RA related is worth a read.
I am still in work when not off sick!
Ive had RA diagnosed since Jan 2009 however my and my GP and rheumy nurse now think Ive had it since appox 2005-2006, and because it was only milder infrequent symptons it was fobbed off as other things like, trapped nerves, muscle sprains, siatica, rsi and so many more its too many to mention. It was only when my so called siatic became so bad that I could not move without crying that I was reffered for urgent physiotherapy and when the physio seen me she examied my full body asked hundreds off questions and then asked me to wait ten minutes, she came back with another physio (higher trained than her) and he did the same examination. Then she asked me to wait a further 10 minutes and after about 20 she came back with a letter I had to take straight away to my doctors as she explained she could not do physio as it was definatly not siatica and she thought I needed an urgent MRI.
I went straight to see my GP as advised he read her letter and then did me a refereral to rheumatoglgy and for an MRI on my lower back both he said he had marked Urgent, this was very early November 2009. I recived my rheumy appointment for the 6th of January and my MRI appointment for the week after (and these were URGENT! referals)
By Christmas I was away staying with family and friends for christmas and I ended up in hospital by the 27th, my knees had blown up so much more I could barely move.
I had many examinations this day followed by blood and water tests and then the dreaded fluid aspiration, I nearly hit the roof! However within an hour the relief in pain around my knees was amazing.
I was kept in for a few days while they kept a check on me, however when I seen the first doctor at my bed to ask questions he said because I had a referell to Bolton rheumatology on 6th January then he wouldnt interfere and he would let them diagnose me and just sent me home with 20mg of pred a day, and naproxen, along with the painkillers I already had.
By the time I was seen 6th of Jan I was so fed up it was untrue, it was a very bad day snow wise and no one else had turned up to there appointments however I was super desperate for help! So I got to see not the consultant I should have but another but I wasnt bothered as long as someone could help! Because there was no rush to see other paitents I was examined and interviewd for almost 3 hours, (as she had to stop a few times to give me a drink and calm me down as the pain from her prodding and poking was having me in tears and feeling very sick.
She then sent me straight to the MRI unit for an urgent MRI that day, and asked me to do a water sample and also call to the vampire department to get some bloods tested.
I did all this and was sent away again, I was contacted a few days later with an appointment for 12th January.
This time I was seen by the consultan who I should have seen who gave me my diagnosis and also diagnosed degeneritive disc diease (which was causing all the back pain) I was aslo told then Fibro was suspected but they would look at that more at a further date.
So basically what Im trying to say with telling my story is maybe if I had have been given meds instead of just pain killers before maybe I wouldnt have been as bad as I am today.
Since November 2009 Ive had so much time off work its untrue. I had Nov 2009-Feb 2010 on sick. then I went back and after one full day I had 2 days off, I then asked if I could reduce my hours as this was way to much for me, so I then tried to work only 6 hours a day but still I ended up having days off here and there. Since April 2010 to now I have totaled 23 weeks off sick and when Ive been in I reduced down to 4 hours a day.
I really do not want to give up work as it makes me feel better when I can get there, I am hoping for improvements with Enbrel Im three weeks in, and no change yet.
My OT has told me I need to give in and let her arrange some care for me, so my GP has agreed I can go back to work early May if my OT has some care inplace.
It may seem daft paying someone to help me get dressed to go to work, but just getting to work in the happy atmosphere our office has makes everyday in work worthwhile.
I really hope I dont become one off those on the statsitic, my rheumy nurse already offered to sign me off sick for good early 2010, but I told him I needed to work, to keep sane.
Oh and my age is 33 and my last two DAS readings have been 7.1 and 7.8.
Do you still work?
Julie xx
in reply to
WOW,that's along time of suffering, also despicable lack of care why on earth couldn't those two pyhsios not of sent you to a&e they shouldve been held accountable, im having dr problems to,ive had backache first prescribed painkillers when 13yrs old im now 42yrs old and still not diagnosed properly ive had slipped &/bulging discs still no scan of base of spine,now i have fibro to,I'm determined though its went on far to long im dragging them kicking and screaming going through the motions of getting to root of all,IT COULD BE is no longer in my understanding from any dr any longer.sorry to hear of your poor care and how you were left in agonising pain for so long.
Hi Julie..I was diagnosed last October having felt symptoms for at least two years before. Once I saw my GP she diagnosed me straight away but it took another 5 months to see the Rheumatologist to confirm it. During that two years before diagnosis I had a lot of time off work and became very frustrated as most of it I was 'just' exhausted but could not put my finger on anything. I have been off sick for 6 months now and I am desperate to get back to work. It is my primary goal at the moment because although I know it will be difficult I feel my mental health will benefit!!! I am going stir crazy being at home to be honest. Most of the people around me do not see work as a priority and worry it will 'set me back' but I don't feel my life can move forward until I have at least tried! I hope my employer (the NHS as it happens) will be supportive as I most certainly will need some adaptions and changes to my role. And if it all turns out to be a complete disaster at least I would have tried x
Hi Fiona, I have to agree with Julie (RA-Fibro) if you have a job hang onto as best you can as once your out of work with RA or any other disease its so difficult to get back in.I had my first symptoms of RA at 28 but didn't get a proper diagnosis until after the birth of my son as I had it through pregnancy by then I was almost 31.
Then I was virtually dumped from the employment industry, as year after year they found it harder and harder to treat my RA as the drugs were few and far between in the early days no Anti-tnf's/Biologics etc.
Now its just operation after operation, have been told by my GP and Consultant that I will never work again due to the aggressiveness of the RA.
I have tried don't get me wrong but it was useless, even doing a few simple NVQ courses took it out of me but I did manage to complete them and get a job at my sons school but it only lasted a few weeks, I was gutted.
Being at home constantly fries your brain I can go from day to day without seeing hardly anyone except when I drop my son at school, he starts collegs in September don't know what I'll do then.
Staying at home makes you think more and it's mainly about RA , whereas having a job to go to gives you a completely different outlook on life it gets you out of the RA trap gets you with "normal" everyday people, people thet if they don't know about you RA treat you normal and help you forget.
I have written bloggs earlier on both these you may find it interesting to read some of the other replies too.
Hi, I'm a newbie as well as only got definitive diagnosis end of last year. However I took 'voluntary' redundancy just as I started to go downhill earlier last year, and for me has been the best decision. I don't know how I would have coped had I been working and I think that my health would have been much worse than it is now.
Not working means I have time to look after myself, so eat more healthily now with time to make cheap soups and so on, take gentle exercise every day, and even get reasonable sleep - all of which I never did while I was working. I do quite a bit of volunteer stuff to keep me connected to people, and have elderly parents to care for. So I miss (!) the money, but everything else I've sort of found replacements for so I don't feel 'unemployed'.
I can imagine that being 'off sick from work' is probably the worst option of all, as you're stuck in limbo land. However, for me I've found that being made redundant has helped me move on and start to build a new life that I can manage. This amazes me as I loved my job and was an absolute workaholic, and thought my world had ended when I made decision to go. But I'm in my early 50's, so am also in a different place in life and maybe that's helped too. It's not all perfect, and there are difficult weeks, but there is some sort of satisfactory life to be had without formal work.
Hi Fiona,
Unfortunately back in 2003 I became too unwell to work - don't be self-employed and get a chronic illness, it sucks! - I tried briefly to return in the autumn but felt that I was literally killing myself. I used to work freelance in film and tv - so 12 hour days (min) often standing around in the cold on 'location' or sitting cramped in a little folding seat watching the monitor etc.
I found my inability to get back to work really distressing - I was a single parent with kids at school and university and forced to be living on my savings. I was in my early 40's and not ready to be retired. After a year of denial (I'll get back to work eventually) I was able to accept that I couldn't return to my career, didn't want to do design work at home (too isolating) and needed to retrain to do something that I could do sitting down, with people and would be able to set or control my own hours. I did a counselling training course for 2 years then switched over in Integrative Psychotherapy and graduated last summer. I can manage 3 half-days so long as they are spaced out and allow me to sleep for a couple of hours in the afternoon. And yes, I'm self-employed again - I'm the only person who would employ me with my medical record!
I think that I've had RA since my mid-late 20's - certainly symptoms that I now recognise as RA - but as I have been on steroids long-term because of kidney disease since childhood this was masked. I originally got diagnosed with Gout but this was a red-herring as I have high uric acid levels and crystals in some joints but obv the swelling progressed beyond my toes until I finally saw a rheumatologist and got a diagnosis.
So I've had intervals in my working life previously when I was on long-term sick varying from 6 months to 2 years due to kidney disease but always eventually got back on my feet again and back to work. The RA is a different kettle of fish altogether - pain and fatigue being the twin perils - if I take anything stronger than paracetemol I'm aware of it affecting my cognition, speech, word recall, mental slowness etc. So it's a balancing act of strong drugs at 9pm that are SR and effective for 12 hours then a gap and a top up at 2pm if I'm back home by then.
It is vital to have contact with others - isolation is a real risk especially in the winter months. Getting involved with your local nras group, learning a new skill at adult education classes and volunteering for a local charity are all good ways of getting mental stimulation, a change of scene etc if you're no longer working - and with all of them, if you're not well/ not having a good day you can cancel.
Cece x
wow cece.. so impressed.. thinking of aretrain again if necessary.. not typing however ha ha!!. think this site is good and I THINK there should be no problem having a mix of educational blogs/ information and some more light hearted stuff too.
I personally have been told not recommend drugs on the internet,, but these drugs were discusssed from my own experience as a patient, whether postive/ negative.. on purely personal level.. prescription drugs.. prescription required,!, so I have been put off factual blogs for this reason..
we could head out blogs... each... fun /personal
or educational/factual in the title.. how does this idea sound.. think this site sould be available as general help. support/ advice to all.. it belongs to us all via nras and heathunlocked and I greatful that it exists.
I am signed off work my current note takes me to six weeks or so .. got another two week note today.. dont think i will evey be well enough for full time current contract..is 28.75hrs.. down from 37.5 before diagnosis,,
in reply to
Hi Alison, how you feeling today?
mand xx
rubbish.. got xray of neck some time this week hopefully.. and private hydro wed lunch time.. ordinary physio at grh glod royal not available until 2nd week of may.. that is as in urgernt referal one month ag0...... vey painful neck today and shoulders feet and hands too
Hi Fiona,
Interesting blog, I will apologise in advance for my spelling, inability to explain what I'm trying to say and if I insult anyone! this is due to baby brain, meds and RA!
I was diagnosed in Feb this year, symptons started dec 09 with my first flare after giving birth last Novemeber so yes I am a 'newby'.
I do find this site very interesting but yes I do feel like an outsider, my own fault for many reasons prob shyness being the biggest barrier. I read blogs and can find it very distressing, coming to terms whith what is happening to everyone but also myself, I am constantly looking for positive experiences to give me some hope but I'm feeling too sorry for myself at the moment!
I tried not to look at this site but then a couple of days goes by and I can't help myself, I just need to know how Lyn, julie55, mand all of you really are all getting on, who needs Eastenders!!!
I should see how lucky I am having being diagnosed so quickly and with better options for meds and as yet no permanent damage but it's the unknown of it all at the moment, the guilt and all the other feelings of being newly diagnosed as I'm sure all of you have/or still are going through.....
I would love to hear from anyone newly diagnosed, were lucky enough like myself to be diagnosed early and how they are responding to treatments, this is where I don't mean to insult but there are so many of you who have had it sadly for years before diagnoses that I have to remind myself that I should hopefully have a better outcome, I really don't mean to sound selfish, I read the blogs and only have admiration for how you all seem to cope.
I hope I'm making sense!
Anyway, to answer your work question, I am due to go back in August after being on maternity leave and only hope that my meds have started working. I will only be working 3 days a week but concerned about how I'll cope with baby and a son to look after, but I really love my job, I'm a hairdressing lecturer, although I don't think I could the teach the practical aspect, I could stick with the theory/science area, fingers crossed (haha well I would cross then if they weren't so swollen!)
Hi Wiliby
I can completely identify with what you are saying as I am a Newby too. But I am a positive Newby I hope. By that I mean I want to be empowered to get the best quality of life that I can with RA. Of course Im Piss*d that i have it but my intelligence tells me my best chance is to accept it as quick as I can- vent if I have too- and then get on with finding out about the best of whats out there.
I hope you come on more because I can idendify with you and Im sure there will be others who feel a bit of an outsider. guess we need to make this forum a welcoming space wehere everyones experinces are valued and supported.
Im a biggy on respecting each persons journey as being an individual one. It helps to have expert patients but it does not mean that we will all follow an identical course. Human beings are remarkably and wonderfully unique dont you think? there will never be two us !!! ( even cojoined twins are seperate??)
It is a bum deal getting RA but life is still worth fighting for for me.
Keep fighting to go back to work I will keep my fingers crossed. If we cant go back at any stage we will adjust to that then. And vent to each other trying to smell the roses along the way??? Maybe hopefully
Love and all that
Fiona xxxxx
PS Must be hard doing childcare and hairdressing as both are very physical activities - heart goes out to you xxx
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