The thing that is worrying me most is the delay in getting to see a rheumatologist. This worries me for two reasons. Firstly, how much damage is being done while I wait? The number of finger joints visibly affected is increasing at a rate of one per month... and I'm running out of fingers. What about the damage I can't see? Secondly, I can't see any way of continuing to work until I get treatment. I'm on annual leave at the moment but next Wednesday I'll have to make a decision. I can self certificate for one week but then I need a doctor's note but unfortunately my GP "doesn't recognise fatigue as being a symptom of RA." Will I have to take unpaid leave (which I can't afford to do)?
There have been times when I have started worrying after lunch and I have found it really useful to be able to tell myself to "leave it alone." But then what do I think about? What did I think about before the RA symptoms began? I'm glad I've taken steps to stop this condition taking over my life or I think I'd lose my old self completely. I made a real effort to do a stand up comedy gig this week (not my job, just a hobby). The effort needed has totally wrecked me but it has been worth it just to keep in touch with the old me and to have something to think and talk about other than RA.
How is the programme working for you? No worrying after lunchtime - it's the law!
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GreenFlower
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Greenflower, you have comedy to keep you going. It does take over your life and it does consume a massive amount of time. I bet you have a mind of work with the ra to fall back on when you are doing your comedy routines.
I used to be outgoing and quite strong in my attitude to this disease. My motto has always been that i won't let the b""""r beat me. At the time of writing it is winning and i'm not,but get this flare out of the way and soon everything should be back to normal.
I like the rule you have set about no worrying after lunchtime that should become mandatory.
Sylvi.xx
Hi Greenflower,
I'm loving your worrying blogs but I'm now worried about whether I worried past the worry deadline yesterday.
Ah yes, metaworry - worrying about worry. A whole new can of worms.
Hi Greenflower. Harness your worries and symptoms to good effect in your stand up routine that's my way of dealing with things. In your case it would help to communicate to people what RA is (desperately needed) and you are already making us all smile with your worry decree so sure you can turn these lemons you've landed (lemons/fingers what's in it apart from the colour?) into some really good lemonade while you wait to see a consultant. Unfortunately there's a lot of waiting around in rheumatology. How long do you have to wait exactly? I'm an impatient soul so all this waiting has been like torture for me too but luckily my consultant seems to be worth the wait - hopefully yours will be too.
I don't think damage usually occurs too fast despite what we read. My fingers and wrists were awful and I waited 9 months before starting on MTX. Now they are almost normal looking again 8 months later.
Re worry and fatigue - the reason I can stick with your manifesto is because I usually spend the afternoons in bed asleep these days! I don't know what you can do about work apart from ask for oral steroids. But if you know your rheumy apt is soon - or might suddenly come up - then you should avoid being on steroids because they mask your symptoms often which is why I suggest oral not by injection yet. So next time you see your GP don't mention the fatigue but play up the fingers as working without fingers is mostly impossible which is one of the defining things that makes RA so hard to live with. Your GP will definitely relate to that! Sometimes a bit of hamming things up is required I've learned and as a stand up you should be able to do this with conviction when its required?
Finally - take photos of swollen joints and show them to your GP and consultant. Best of all if you have before and after ones of swollen fingers etc. My consultant mentioned my photos again yesterday as the evidence of improvement now so they obviously made a good impression 9 months ago!
Excellent advice as always! I've had a few goes at taking pictures of my fingers but it's not easy to do with a phone. I had more success with the iPad but I think I need to find a friend with a camera.
I still haven't got a date for the rheumy. My GP says the waiting list is enormous.
My comedy is mostly for public engagement with physics research (hilarious, no?) but I could easily fill several sets with tales of RA.
Well that's interesting - my collaborative art practice encorporates physics and medicine so I relate to the overlap between sciences and arts and public engagement quite readily. Yes I think a bit of bending towards the medicine side of things is required here for you as it would help you on a cathartic front but also encourage some sorely needed public engagement re RA. Sure there's some physics to this disease? - and yes definitely something paranormal going on here too so perhaps particle physics is the way to go with it?!
Hellish to not even know when you'll be seen. I use my iPhone for images as can email them to the physio who passes them on to my rheumy but I had to be very canny and strategic about this as she's also in my choir so I have her nhs email address. You have to be cunning and extremely pushy to get seen and treated in time to save your joints. If that involves phoning the hospital and wriggling your way up the queue pleading desperation then so be it. If you have a GP who would kick ass if he or she saw you walking in in great pain fighting tears then bring it on. I've learnt the hard way over the past 18 months that stoicism - which I was schooled in by my late parents does not pay off when it comes to getting action re health/ chronic illness. Turn on waterworks and fight your corner - you don't want drifted fingers if you can avoid them. Tilda x
I do tend to put on a brave face in the doctor's office. The hospital is part of the university I work for so I can probably track down email addresses if I need to. Thanks for the advice about concentrating on the fingers.
GP update: Last time I saw my GP they couldn't give me a date and time for my next appointment because the dates weren't "in the system." "Ring back in two weeks'" they said. So I did (today), and all the appointments for August have already been taken (popular guy). A minor strop won me an appointment in three week's time. I've also had to make an appointment with a locum next week in case I need to be signed off before I see my GP.
Hi there,
I tend to eat my lunch quite late so I can fit in quite a lot of worrying without getting into trouble, hopefully!
Mind you, I don't know if I'd categorise some of your concerns as 'worrying' per se .... 'worrying' can suggest that you're fretting unnecessarily & I think you are right to be concerned about possible damage.
I guess RA affects everyone differently but I do seem to have incurred significant permanent damage within a 3 month period whilst waiting for the professionals to take me seriously and then the Rheumy appointment. I keep meaning to blog about this but I'm so angry about it I just can't as yet - this is my knees, the things what I need to walk on. (Also, of course, I don't know if I have RA yet - Psoriatic Arthritis is the most likely candidate but I have not heard that it causes damage any faster than RA). I agree with Tilda's last comment - pull out all the stops to be seen earlier - 'a squeaky door gets the most oil' and being insistent-persistent does work.
Also - can you see another GP? I must have looked at 100s of sources of information about RA, good ones, bad and indifferent - but they all say that fatigue is a symptom. Overactive immune systems make you seriously knackered. I would have thought that the vast majority of GPs would give you a sick note for serious fatigue.
This GP is the second one I've consulted and I chose him after considerable research among the receptionists of Edinburgh. Most GPs in the area wanted to be paediatricians!
This is how the first one went back in early May:
"That's just how fingers are," said the doctor.
"I know the back of my hand like the back of my hand," I replied, "and they didn't have swollen joints like that until a month ago."
The doctor pulled hard at my fingers. It must be in their manual: "Q1. Are the fingers are attached to the patient?"
Its awful that you are waiting so long.I felt unwell in October last year with more and more joints becoming affected every other week.As I worked 2 jobs and had never had pain in my life I knew something was far wrong.My G.P did the blood teats which of coarse were clear but because he is a great Doc he referred me that very day in January of this year I did not have the strength nor could I bear the pain that was now in every joint.I was signed off work for 3months.My rhumy apt was made as he was certain I had R.A so in the end of january I was diagnosed started on tripple therapy have seen all the profesionals and in april I was phased back to work part time until may when I was able to change my hours to part time only.When I read about you its awful you have not had the great support from medics and work that I have had.Somebody needs to get a move on for you.I hope you dont have much longer to wait I must live in the right area for R.A. take care.x
Nel you need to set your location on your profile - we may all move there and form a happy party of NRAS supporters (and you wouldn't need to fret because you've already got your foot firmly through the door!).
FlowerPot - I'm surprised Edinburgh isn't serving you better. There are others on here who live there so perhaps they will be able to PM you with some helpful tips for good GPs and rheumatologists. I do know that it's easy to get onto injectable MTX if you live there so further down the line this may be helpful at least. Phone the hospital (the Western General I guess?) daily and ask for cancellations - they must have some from time to time. Tilda x
Sorry stupid iPhone spell check again GreenFlower - I use it because I'm feeling really crap with sore throat and fever and can't even be ar*ed to get up and fetch my laptop! Please don't take offense and become a malignant weed - I've got plenty of those in the garden just now..! X
I hated myself for doing it, but I needed to work and look after my daughter - on that basis, the £150 I spent on seeing a rheumatologist privately in three weeks, rather than on the NHS in five months was money well spent.
I know what you mean. I went private after my optician diagnosed my Intracranial Hypertension but my GP at the time refused to believe him. Three days later I was being wheeled into a CAT scanner at midnight!
Paula might advise you on what happened to her when she tried to push things on by going private. Ultimately we seem to come back into the NHS at some point following diagnosis and you might end up back at the beginning of the queue again so please don't rush into this option unless you can afford to remain private. Tilda x
Yes, I'm aware of the problem. In the case of my IIH, the neurologist was aware from the start that I couldn't afford to pay for treatment and he was able to instruct my GP to refer me as an acute case as should have been done in the first place. In the end, I suppose I hadn't paid to jump a queue, I'd paid to be taken seriously.
The RA is different. Without a diagnosis (the bloods are negative), I may face losing pay in which it might make financial sense to have a private diagnosis and accept that have to go to the back of the queue for NHS treatment. It's like a game of snakes and ladders.
I tried a private rheumatologist in Glasgow, and it was useless as an independent opinion. It was only a half hour appointment, he didn't do a full exam, didn't really want to know what was going on with me or listen to me, and had already accessed my NHS notes and decided he wasn't going to say anything different to the previous assessment several years earlier. He also refused to look at the imaging I brought with me because he said he wasn't allowed to put the disc into his computer! The only good thing I did get out of it was that he told GP the name of someone in the NHS that I should be referred to who was actually an inflammatory arthritis specialist (the previous one I'd seen was only really interested in osteoporosis).
Hi Greenflower,
You mentioned that you were currently on annual leave, until Wednesday, when you would have to make the decision as to self certificate, nobody appears to have picked up on this. If you go on sick leave following annual leave you have to provide a certificate from your GP. Also if you become unwell on annual leave you can also get a certificate to cover that and your annual leave allocation is adjusted so that you can have further time off later in the year.
Although I left work in May of this year, this is what kept me going over the past couple of years of my working life. I would contact your manager to see if this applies to you, I worked in the Public Sector as you, but mine was with a County Council.
Hi Elaine, thanks for this. You are quite right but my situation is more complicated than I've made it appear here. I'm working with our HR department, who are sympathetic.
Oh yes I see your point re work and pushing ahead via private. If it were me I'd pay for it as a one off just to satisfy your work place - although sero negative RA can take forever to be diagnosed so choose your private one with care and preferably go for one who does NHS practice too. It's hellish that work needs a name isn't it - you would have thought a GP saying you were awaiting diagnosis for some type of arthritis would be simple enough. When people get signed off sick at my OH's place they go and see the Occupational health GP who seems to sign people off for all sorts quite readily.
Good luck and keep on here it becomes increasingly the best place to stay sane. Tilda x
Our OH nurse is very good but the OH doctor only works half a day every other week and less during the summer. OH can only influence HR if they have a letter from my GP with a firm diagnosis. So I'm a bit stuck in the system. A letter with a rheumy appointment would help me make progress but my referral is still in limbo while the NHS plays games with the '18 week pathway to treatment' rules.
If it is the rheumy dept at the Western General then you should know that they have been in loads of trouble for illegally massaging their waiting lists recently - there was a whole radio 4 programme about it! I hope it means that they are trying their hardest with the public now. Cathie might come on and offer some advice as it's her local hospital and they tried to shift her next apt on from Sept to Xmas eve at 3pm but she phoned up and they agreed to move it to October with no more ado as far as I know. Perhaps you should phone the rheumy dept directly and explain your situation to them so they slot you in for a cancellation? Tilda x
I've been reading Cathie's posts with interest. My sources tell me they're still playing silly b*ggers with the waiting times by putting referral letters through an extended triage system before time-stamping them. I have no way of confirming the truth of this though.
Hmm I know I worry too because my eldest son (at uni in Edinburgh) has to have a heart scan soon but because he's been home he's had to cancel the apt and I'm thinking that this might mean he will have to wait a further 6 months. Mind you, shockingly, they actually forged the last scan results my sons should have had up here in our local hospital. They claimed to me that my husband and sons were last tested 3 years ago, as specified by the cardiologist, but actually it was 6 and a half years ago and all three remember this perfectly clearly. The nurse who did the scans on the younger two a few months ago hinted strongly that their memories were not playing false "this age group have very trustworthy memories let's just say" she said to my husband and I. Apparently the scanner she used this time wasn't even in place three years ago so the results from this scanner must have been falsified - shocking eh? TTx
I know but heck - its in the past now and I'm not convinced we could prove it. It's made me naturally mistrustful of hospitals though and also confirmed my belief that patients have to be the driving factor in order to get things done. I forgot (denial) about the risks of the boys developing this condition and trusted that they would be contacted every three years as specified. I'm so shocked that they tried to cover their backs in this way though! Sometimes this is too small a place for formal complaining. The department has had a radical overhaul with many new staff replacing retiring ones so hopefully it couldn't happen now. TTx
Hi There, just catching up on your blog, I must say outraged at your GP not recognising fatigue as a symptom of RA? WHAT???
GPs do not have the experience to make that sort of judgement! Fatigue with RA is unbelievable, I remember not being able to lift my arm with tiredness, prior to diagnosis.
I live in another country to you, and am glad I had the option of private, as I guess my fingers would be still curling & drifting on the waiting list.
I understand without the positive blood factor, where ever you live it is going to be a fight for treatment.
I'm sero-negative for Rheumatoid Factor - is that the one you're referring to Gina? And I was put on MTX and steroids by my Rheumy at the first appointment on the basis of symptoms and raised ESR. 'Sero-negative inflammatory arthritis' seems to suffice as a diagnosis for me for all intents and purposes at the moment.
Christina x
That's why I bottled out of the idea of going private finally - I didn't want to alienate my health team up here and I now from a GP friend that despite the private/NHS partnership working in theory in practice there is no way of computer data being shared and misunderstandings are plentiful re blood monitoring and my friend said it couldn't help but make your average GP grumpy - the last thing I felt I needed. I'm probably going to be getting doctor's backs up myself re injectable methotrexate soon but at least I won't be out of pocket as a result! TTx
Did you know that there is actually a shared care partnership protocol for injectable MTX for Grampian? I just discovered it when looking for info about SSZ. That means that there really should be no problems with going onto it, if the oral form hasn't been tolerated well.
Sorry to be dense but does that mean that the cost of replacing oral
MTX with injectable would be shared by rheumatology and my GPs then? My consultant did say the problems were by no means insurmountable so I have decided that it's not my problem and if I continue to have problems I will tell my GP because that was what my consultant said should happen. But very interesting to know that there is a protocol in place for this health authority. What is SSZ? TTx
• in reply to
Just looked up SSZ and see its an acronym for Sulphasalazine. TTx
Catching up on your blog a bit late. Two comments to contribute. You say that you're one of the brave face brigade.....I've learnt that sometimes this doesn't help and you have to really lay it out to get a more proactive response - especially if you're sero- negative. And being a bit pathetic can avoid the docs getting all defensive as well.
Also my experience re getting permanent damage might be comforting, as it took me ages to get diagnosed and started on meds. By which time I could hardly walk, and was really worried about how much damage there might be. Anyway, I was amazed at how much I recovered, as 90% of it has gone away. And I now have a cupboard full of splints and walking sticks and so on that are getting a bit dusty. Yes my feet are damaged, but not to the extent that I can't do most things ok'ish. Good luck. Polly
I had to wait five months for diagnosis but I am now doing well with dusty splints and sticks too x
I saw a different GP today - my GP is away - and she was very reassuring. Something in the system has clearly gone wrong but I'm confident we'll get it sorted within a few weeks. It's a shame the GP computer systems and the hospital computer systems can't talk to each other or she'd have been able to sort it out there and then.
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