Still waiting

My doctor is 90% I have rheumatoid arthritis, and 100% sure I have some form of arthritis! Anyway after 6 months of battling with my gp to convince him that im a shadow of the woman i was a year ago he referred me for bloods and after the results came back he immediately referred me to the rheumatologist, it took 2 months to get the app through, it should of been 8th december but 3 days before the scheduled app I received a letter saying my appointment was changed to the 19th jan, I was totally deflated as im in so much pain, and I get days were I cant even move, fatigue and fever, sleepness nights although shattered, and yesterday I got a letter to say the appointment had been put back another week until 26th Jan, I saw my gp yesterday and he said he can only treat the symptoms and not diagnose me, which I totally get! My xmas is looking bleak, im a single mother to 4 children under 9 who are quite a handful! I guess my question is, why is it so hard to get seen and diagnosed properly, im in agony and prescribed tablets with horrid side effects that seem to help with some pain but not much! By the way Ive followed peoples posts for a couple months since I suspected I had Ra, I think you are all fabulous honest, open and brave people and ive learnt so much more from posts than the gp xx

28 Replies

  • Hi Jackie, so sorry to hear what terrible pain you're in right now. It really is unacceptable but so familiar. I had a similarly bad time getting to see a rheumatologist when I needed diagnosing and sadly ended up paying privately in the end. I think you should call your hospital and ask for the number of Pals and give them a ring to complain as maybe they can find out why you keep getting pushed back or even get you seen quicker. Has your GP given you pain relief and anti inflammatories to tide you over? If you're not sleeping it may be worth going back and asking for something to help. I take co-codamol 30/500 before bed right now as I'm waiting to start new medication and in a bad flare. I find I can cope much better after some decent sleep.

    My children are thankfully grown up but I can appreciate that going through this with 4 young ones must be really difficult. You've come to the right place here though as it's a great place to let off steam and get some advice. Also the NRAS helpline is a great place for some extra support. I've learnt a lot more on here than from any doctor. I've also learnt not to be afraid of bothering the doctor when I need help. Welcome to the site and I hope you get the treatment you need soon x x

  • Thanks for your reply paulywoo(the name makes me smile as I say it aloud)

    Ive been on naproxen, co codamol and more recently gabapentin as I have carpal tunnel im also waiting to see a neurologist!

    I will learn to complain I guess, I've realised that being nice and patient isnt getting me very far!

    I have grown up children also, one of who still lives at home at 25!

    I also looked I to seeing a private rhuemy and I still might if this appointment doesnt happen on the date I have! You dont realise how many people go through this hell until you read through some posts on here, my family just think ive got creaky aching joints due to being 44. How I wish I could get my gp and certain members of my family to hobble in my shoes for the day x

  • Oh yes, my Mum asks me if I'm feeling better every time we speak. Even after all this time she doesn't get that it won't just go away. I could scream each time she says she feels stiff because she's old but what's my excuse!!! That's the problem with RA, people see a young person, well youngish, and just don't appreciate why we can't keep up.

    I had been waiting from July to Dec 20011 to be seen by a rheumatologist and eventually went private when informed it would be at least another 12wks before I got a date. I think if I was you I'd definitely call Pals as having your appointment repeatedly put back is unacceptable. Regarding the carpal tunnel, I was also diagnosed with that when waiting to see my rheumatologist. In fact it was a rheumatologist who incorrectly diagnosed my RA as carpal tunnel. Once on methotrexate to treat the RA the swelling eased and the carpal tunnel cleared up. Here's hoping yours does the same x

  • Thank you so much for listening or reading, im sure I'll be having alot more questions and no doubt rants as I become just another nhs number x

  • I can seriously see myself becomming my gp's worst nightmare!

    thank you for your advice and support xx

  • I am so sorry for you as this takes me back to my early days, 3 little ones (including a newborn and an autistic Son who was a handful at the time) and in extreme pain and a wait of several months until my next appointment. You can consider phoning the rheumatologist and asking to be considered for any cancellation as you are in extreme pain, hopefully they will be sympathetic- there is no harm in letting them know you have had your appointment put back several times are in extreme pain every day. My rheummy told me I should have rung for an earlier appointment but at the time I couldn't even think straight so I just held on.

    In the meantime if you can get some help at home it will make a difference but I know family aren't always understanding. My children have had to learn fast that I often needed help. I had to do things like put ready food in the cupboards, crisps and bits that are easy to microwave ad settle down to watch CD's so I had them all in one place and I could rest up while they watched.

    I'm wondering if it too early to ask for help from a charity help group.Where i live we have DASH and they arranged for social services to visit and after an assessment I was given money (direct payments) to pay for a carer and also pay for ironing (they no longer allow the ironing unfortunately). NRAS and carers helped me a lot in the early days. Perhaps contact the school to let them know how much pain you are in. Mine have been good but some are not.

    Sorry I cannot offer any immediate help but I know what you are going through and hope they can offer you an earlier appointment with a possible cancellation. For me the onset of the symptoms you describe and extreme pain was sudden and it needs to be controlled asap.

  • Ive done some battles in my life but my god this is so horrendous! Its not just pain its fatigue, my hands and feet could melt an igloo, and I go to bed and and hour later im awake and thats the way my nights go, I must admit my gp has had a good go of controlling my pain and symptoms but there is only so much he can do, I will ring the rheumatologist dept and make a nuisance of myself, thank you for sharing your experiences, you've really helped, big hugs xx

  • Thank tkachev, I can see myself ranting and raving or maybe even crying with frustration before long, your advice means so much x

  • Oh Jackie, I feel your frustration. Living with arthritis is difficult enough without battling your GP for a referral. That goes against every guideline for diagnosing inflammatory arthritis. I would really encourage you to write a letter to your GP practice, making reference to the guidelines that promote early and speedy referrals for people in your situation. I hope this isn't being too forward but I am more than happy to help you write a letter. My GP surgery made a massive error that was potentially quite serious and my best friend who is a lawyer helped me write a letter. They have now changed a medication policy, so changes can and do happen!

    Given that you are a single parent, this may not be practical but sometimes, if you phone the hospital and say you are happy to take a cancellation, they can slot you in sooner.

    We are here to listen and to offer support. Be kind to yourself.


    P.S. how old is your youngest? Some areas have Homestart workers who will visit once a week to offer some support in the home.

  • Thank you crashdoll, I was reading that the sooner you are diagnosed and on treatment the better you outlook is, I sometimes wish I could let these doctors and specialists spend 24hrs in my shoes or rather not my shoes as im barefoot in the house these days! My children are 9,8 yr old twins and a 4 year old and bless them they are fantastic little helpers but the running of a house and family is suddendly a chore and not the pleasure it was, I do volunteer work with a domestic violence charity and even that is becomming harder and harder! Wow even having a good old moan on here is so helpful, thank you xxx

  • hope they get you sorted soon hun,xx

  • Thank you xxx

  • Remember----- you won't be top of their priority list-- but you've got to make sure that you make yourself top of your own list--- fight like mad for an appointment chick. Good luck xx☺

  • Do you know jacki08 you are absolutely right and I will take you advice xx

  • Hi just wanted to say that pals and nras helpline were brilliant for me when my long awaited appointment was postponed at short notice. I was really encouraged by them and ended up with a better appointment. Also with regards to sleeping amatriptalyn ....not sure of spelling has been a godsend in terms of pain relief and sleeping. Maybe worth a chat with your gp.

  • Hi mary, I was on amitriptyline for a couple of months but my doctor stopped them and upped my gabapentin dose, I did speak about going back on them but he wants me to try natural ways to get to sleep, changing my bedtime until later and relaxation methods! I'd like him to try and get a decent quality few hours in this state! Thanks for your advice hun x

  • You poor thing - I completely relate to the lack of sleep and frustration and circular fatigue you are feeling.

    Thankfully my children were teenagers when I was diagnosed and one was already away at university by then. It must be totally exhausting for you and the pain is horrible and feels never ending I know. But once you are diagnosed and on medication you will hopefully look back on this stage as an awful blip and be able to function properly again as a mother and a volunteer.

    However I think you are going to have to learn to be more pushy and difficult because being nice and polite will just make you a victim of NHS protocol. Instead you need to become an expert patient and be proactive and assert yourself when you need to.

    I think you should be seen as one of the rheumatologist's priorities because the emphasis with NICE is all on early diagnosis and treatment - to the extent that, where I live, it's become very hard to get seen as a review patient now because I keep getting bumped down the list in favour of new referrals. So who else could be more important under these current NICE guidelines than you?

    I'm also not quite sure why your GP can't fight a bit harder on your behalf for you to be seen as an urgent referral under the circumstances - especially having wasted six months to begin with.

    I was on Amitripyline for three and a half years and it's a good drug which helped restore my sleep patterns as well as tackling my nerve pain. I miss it as I'm now taking Duloxetine - which makes my insomnia worse although it might be starting to lessen the pain a bit at last. I think your GP is being simplistic saying that you should get into the habit of natural sleep patterns with four young children and this much pain to cope with. Can you get another appointment before Christmas perhaps and challenge this as it's a non addictive drug and you obviously badly need your sleep?

  • Thanks twitchy toes, you make so much sense and ive spent many a sleepless night researching every medication, symptom and possible outcomes! The doctor did tell me to come back if I couldn't find a way to get the natural sleep I need so I think I will go back! Im naturally a very strong willed and strong talking woman but I guess you start off thinking the doctors know best BUT im seriously beginning to wonder about that, thank you so much for taking time to write such alot back to me, I suffer with carpal tunnel and typing can be bad sometimes as my fingers go completely numb! I have been on 4000mgs of gabapentin a day and have just asked the doctor to reduce it down to 2400, my god the side effects were horrible to me bit quite amusing to my children as I lost the power to speak coherently! Anyway im starting to waffle!

    Thanks again and hope you getting the right treatment xx

  • I had to stop Gaberpentin after three weeks recently - it made me like that even on the lowest possible dose. By the time I made it up to 900mg I was walking in circles, throwing mugs at anything that moved and couldn't drive or focus on anything - in fact I was like a drunk woman on a really bad ride! So well done for making it up to 4000 at least. Make sure you come off it very slowly though if you need to stop though.

    Amitriptyline was my wonder drug for nerve pain - I have progressive small fibre neuropathy recently diagnosed but the cause as yet unknown so numbness as well as extreme burning pain in feet, hands and now even in my pelvic floor! The only trouble was that it started giving me severe heart palpitations after three years and some dizziness too although nothing on the Gaberpentin. I found it really helped me to sleep and stopped my bladder from pretending to be full through the night all the time as well!

    I see my GP about Duloxetine again a week tomorrow and will discuss whether to increase it or leave it as a low dose over Christmas. I hate the insomnia it gives me as well as a dry tickly cough but it does seem to be working a bit for the awful nerve pain at least and no dizziness, scary mood changes or heart palpitations so far!

    Please go back and see your GP and be very polite but assertive about everything. You need and deserve support. Tx

  • Omg listening to your list of symptoms I'm nodding my head as im suffering with terrible burning painful hands and feet, I had the most awful pain up the left side of my face, but each time I stood up it went! How bizarre is that? Anyway thanks again and will post again when I finally see the rhuemy, I always follow everyones posts though x

  • Good luck with everything Jackie and please do let us know how it goes with your rheumy apt - take photos of swollen joints in case they are behaving on the day and write a symptom diary if you can using bullet points so it's easy to write and easy to read too. Txx

  • Funnily enough I was sat in the bathroom at 3am a few nights ago taking pics of my red swollen feet and hands like I was David Bailey, im sick of not being believed, sound advice again twitchy xxx

  • Not being believed is the worst I agree Jackie. Take care and good luck with everything. We are here for you if you need to rant or update anytime. Tx

  • Thanx xx

  • I'm with those who think you need to get pushy. Although the word 'pushy' isn't really appropriate - it's more a case of telling it like it is until you get the required result. There are so many things you can use to plead your case for being seen ASAP. As well as the protocols which strongly recommend prompt referral, there's the fact that you did have an appointment that's been cancelled and your personal circumstances. We cannot separate the experience of having a disease from the reality of our lives. As a single mother of 4 children you have a strong social case for being seen quickly. It's not just you who is being affected, it's your children too. As a family you need help with this sooner rather than later. Lay it all on the line, all of it.

    Incidentally, I couldn't cope with the cat when I was first ill, let alone 4 young children. You are evidently quite a woman. Please tell your GP that you urgently need an appointment. You could also phone the rheumatology department yourself. Sometimes they get cancellations and will fit you in at short notice. The more all these people know about you, the more likely they are to get things moving.

  • Thanks postle2, im definately ringing the rheumatology dept first thing and really see what can be done, to have an appointment this important and vitally needed pushed back once is bad enough but twice is unacceptable, I guess if it was one of my children then I'd be ringing every five mins until they were seen so yes tomorrow my needs are first, thank you for good sound advice x

  • Hi,

    I can sympathise totally. It took me twenty years after I was first diagnosed with a low Rh factor and numerous symptoms before anyone would do anything about it. Various GP's offered allsorts of explanations including shin splints. It wasn't until I was really ill two years ago that my GP (a new one and a very understanding lady who didn't treat me as a neurotic 'woman of a certain age') sent me for tests which came back quite high. I have no complaints at all about seeing my consultant or RA nurse, who are always at the end of a phone.

    But I agree with all the replies which say that sleep is so important. I can deal with the next day if I have slept, and I take a 30/500 mg co-codamol every bedtime just to help me get over the 'relaxation discomfort' that starts as soon as I get to bed. As long as the co-codamol helps, I plan to keep taking it!

    Good luck and I hope that you get some understanding from your GP soon. My RA consultant told me that GP's have little knowledge of RA and really do not understand the way it makes people feel, or how much pain there can be.

    If you are able to, look RA up on line, and take the results to your GP, and ask for the tests to be done. The only way is to push them into action.

  • Thank you, I just feel like you have to fight for anything, im sure all the medication I take was my idea and I had looked online and then suggested it to him, I remember going to him in tears thinking I was dying and he said its arthritis nothing serious!!! Gosh I was fuming, I really cant wait for the rhuematologist appointment even just for some peace of mind and a diagnosis, I didnt realise what a terrible illness this is, this site has been a god send to me and the advice is better than a doctors, they dont even give advicr, just shove more pills at you x

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