Saw my GP today and I could scream!

I wrote a question a little while ago about how long a first rheumatology appointment should last as mine was very short and sweet with a negative diagnosis. The rheumatologist diagnosed carpal tunnel linked to my thyroid condition and discharged me. When I went back to my GP to ask about the carpal tunnel treatment and he went over all my symptoms again and said he still thinks I have a rheumatoid condition. He also said he did not want to do steroid injections into my wrists without a second opinion and suggested I go privately to see a rheumatologist to avoid a long wait. He re-ran my bloods to include with the referral and my esr has now increased from 26 to 37 and my rheumatoid factor is 57. Following a chat with him today I called Spire today for a private appointment and guess what? They can't see me until March! I just don't know whether to scream or cry? I've left a message at my surgery to ask for an NHS referral as I don't see the point in paying (out of my ESA) to still wait 2 months. I'm at my wits end. I'm just so worried about the damage that could be taking place in my joints. Sorry to rant but I'm just so frustrated by all this. I lost my job as an administrator in May but can't look for work as my fingers are so painful and swollen. I've been like this for 6 months now and all I have is paracetamol. I'm not sleeping properly and the stress of not knowing is making me depressed. I never imagined it would be so hard to get an appointment with a rheumatologist. It would be easier to get an audience with the Pope! Can I scream now? Aaaaarghhhhhhhh!!!!

19 Replies

oldestnewest
  • What can i say to you that will ease your suffering. Get another appointment at your gp and also go to your patient liasion service at your hospital and complain about your treatment.

    Have you got a wax bath, if you have use that will give you some relieve to start with. You can take up to eight painkillers a day i believe.Ask your gp what you can take. He can give you other meds to help you to start with.

    I hope you get some relieve soon.

    Sylvi.xx

  • Stay calm if possible Paulywoo and make another appointment as soon as as you can to see your GP. If he believes you, as he obviously does, then he may be able to fast track you to see an NHS rheumy asap.

    I understand your urgency but then the drugs themselves take a while to work too and a GP friend told me that it's usually about two years from the onset of symptoms before serious damage sets in so please try not to panic as stress only makes RA symptoms worse usually.

    Perhaps it's different for those who wake up unable to move with swelling and pain one day but for the majority the disease progresses quite slowly. I'm told. I remember thinking to myself after your last blog that you should probably go for the NHS option and then you could always change if a private slot came up. I was in the same boat last June when I was told I would have to wait a further 7 weeks to see a rheumy having already waited for 3 months. Hope it pans out well for you and you get someone decent this time but for now I think your GP sounds like the person to lobby on your behalf to get you see to properly. TTx

  • Hi there,

    I'd also "remind" your GP that the NICE guidelines say that early arthritis people should be seen within 6 weeks, so can he/she please nag the hospital to get a move on. Also, he should be able to prescribe some oral steroids even if not keen to give you a jab, and that will help to calm things down until you see Rheumy. Steroids and anti-inflammatories do help control damage, and as Tilda says it might hurt like B@£$% but it does take a while for real unreversable damage to happen. And hot/cold packs help too. Polly

  • Hey hon,

    I know its very hard but try not to stress.. as it makes you worse. First things first get in to your GP asap. When there ask him to fast track you to as many hospitals in your catchment area as possible ( they can do that)

    My initial GP Diagnosis was really fast (GP was awesome) but I was expected to wait over 2 months to be 'fastracked' to see a rhuemy :( .. I stessed for a month then asked for other hospitals to be taken into consideration and another offer within the same week!!

    Best of Luck and I pray that the 1st Rhuemy was correct and you DONT have this horrid disease.

    Take care

    Joy

    *excuse typos*

  • Hi

    Sorry yiu're in this situation,i was very lucky in that our area has an early arthritis clinic and people with suspected RA/Lupus are seen within 2 weeks.

    I think you need to speak to your GP again-are there no other hospitals in your area that they can refer you to? My GP has a list of private consultants maybe ask he he/she can recommend someone else.Try calling the NRAS helpline for advice -they're really good with advice.Most importantly try not to get too stressed as others have said this can really make things worse

    Let us know how you get on

    Julie x

  • Another way to speed things up is to try for a cancellation appointment. I've done this on several occasions. It can mean ringing every day but I've usually managed to get an early appointment after only 2 or 3 calls. It's worth a try. You are doing the NHS a favour as it means those appointment slots get filled.

    Good luck Sue

  • Hi

    Sorry to hear your story. Try another hospital and get your gp to make an urgent referal, you should be seen within 3wks, if urgent - hopefully. You can also speed things up if you ring the central appt office and explain you want the first available appt at any hospital with in your area, to use this you must have the referal first from gp and then give it about 5 days for them to receive the referal, then ring. Gp can fax referal.

    Gp's are not allowed to start you on dmards, but he could prescribe nsaids (anti flams). They will help in the interim toghether with pain relief.

    Hoping you feel some relief soon.

    Good luck Sci x

  • Thank you all so much for all your kind words and advice. It really helps to have you to talk to as I worry that I'm driving my poor husband crazy with constant talk of my painful hands. A nicer group of friends would be very hard to find x I'm going to phone my GP tomorrow and make sure he's made the nhs referral and i'll ask him for the steroid jabs as an interim. Could anyone tell me if all NSAIDs cause oedema as I did have Naproxen but had to stop using them as they caused my feet and legs to swell.

    Thanks again

    Paula x

  • Hi

    Not sure, but there are lots of different nsaids, and naproxen is good for mild to mdoerate pain, there are more heavy duty ones such as arcoxia 90mg and those given to treat flares - ask your gp for a different one.

    I was given naxproxzen at first, and when I kept flaring I was given arcoxia 120mg for 4 days. That worked a treat. I then was prescribed arcoxia 90 for the intermittent pain. For me arcoxia was better for the pain, so I stopped naxproxen and just used arcoxia. I've not used a nsaid since I have been on mtx and steroids, as my rheumy will not let me use nsaid as well as oral steroids.

    Hope that helps Sci x

  • Thanks Sci, I'll ask about a switch. x

  • Hi again Paula - there are some excellent suggestions from people here. Let's hope you get lucky and are seen quickly - if only not to have to put up with the horrible stress of being in limbo-land untreated and feeling misunderstood. My hands were consistently awful for almost a year prior to diagnosis so I relate to what you are going through. And being diagnosed has meant I feel much more supported by physio and OT and other health professionals now.

    BUT- and it's a big But - if you get in a panic and push the next rheumy you see too hard then you might come away with a diagnosis but you may also end up wondering, as I do sometimes, if you haven't just bulldozed your way to a diagnosis and are now on these toxic medicines and end up thinking "do I really have RA - should I be taking these?" - especially if you end up paying a private rheumy for a diagnosis.

    So just take a deep breath and do everything as suggested here - but don't allow panic about joints getting damaged to affect you too much. Try and use this limbo period to experiment a bit with pacing and working out what foods and gentle exercises etc seem to help you and which ones are a waste of time. It sounds a bit tame I know but Ibuprofen x400mgs 3 times a day with a stomach protector worked well for me with amitriptyline and co-codimol at night and unlike the oral steroids they don't mask your symptoms for a while when you stop taking them so you can just stop a few days before you finally get to see another rheumy. Also no side-effects for most people. Good luck and hang in there. TTx

  • Thanks Tilda, I totally agree with your views on being too pushy as that has crossed my mind. Also I see how much all of you go through on here and have to admit that a positive diagnosis is a scary prospect. I must admit I was very relieved when my rheumy said I had carpal tunnel but then the GP popped my bubble when he dissagreed with his diagnosis. On the plus side, I've cut out alcohol and started eating a healthier diet and have dropped a stone in weight since Christmas :-) I'll give the ibuprofen a try. x

  • Yes do give the ibuprofen at try. My GP put me on it last summer when I told him that my joints were locking through the night and he said this was due to inflammation and asked me to take it daily - he prescribed me that with the other drugs I've mentioned and I only stopped taking them 3 weeks ago when I felt I wanted to have a break and see if the MTX was starting to work (I think it is). I have managed to loose 2 and half stone in 10 months but still have a few more to go.

    When the RA kicked off it was my GP who was sure it was this - but a locum had told me months before that it was carpal tunnel and advised (politely!) that my excessive weight wasn't helping my knee joints, which were very painful. Then when my feet started to hurt too I went to my own GP who took tests and phoned me a few weeks later to say he thought it was RA and he wanted to start me on Sulphasalazine because he was worried about the time I'd have to wait to see a rheumatologist - although he had referred me straight away.

    My panic started when I had to come off the Sulpha because I had a bad reaction to it after 3 weeks. At that stage I really hassled him to phone the hospital and make sure I was going to get to see a rheumatologist at the next clinic in our area. This worked pretty well although he was a bit offended by my outburst I think but needs must - it's my body not his after all and I knew he needed prompting to pick up the phone for me.

    I was put on the very over full rheumatology list and given a kenalog (steroid injection) that would last until about the time I saw the rheumy in 6 weeks time. This all went according to plan except that the steroid made me severely depressed and my OH ended up phoning my GP because he was so concerned about my state of mind. I now know this is the effect steroids having on me but also I was in shock at everything that was going on and not coping with the idea of having RA well but also, like yourself I was worried that it would be eating away at my joints all the while.

    But it was still more difficult when the steroid masked the inflammation beyond the time of this first appointment and the rheumy said "inconclusive - I'll see you again in 4 months time - I need to see you in flare mode". I then spent the next four months photographing swollen joints (didn't have many) and reading all I could and researching (hoping against hope) other possible causes of my problems. I thought it was menopause and then taking the wrong dose of my thyroxine and all sorts of foods were tried and tested (eliminated) by me. By the time I finally got to see him again at the end of November I had swollen knuckles and fingers that had not only swollen but would not bend at all and my wrists were agony. The rest, shoulders, ankles, knees and feet had been slightly masked by a short dose of oral Prednisolone but I think he just believed me (with the help of photos and my supportive GP) and diagnosed me then and there and I was put straight on Methotrexate.

    The rest is history as they say!

    Take care and keep positive and the right diagnosis will surely come

    TTx

  • Maria is lucky to see a Specialist RA Doc from one year to the next :( Her next appointment is about June or July...

    However - that will not make you feel any better - darn the NHS and those who say it delivers the goods

  • I'm not sure if it's across the board but the NHS certainly seems to be failing its rheumatology patients. I'm sure the government has more pressing matters to deal with though...like the chips in the commons dining room being stacked correctly to avoid sogginess!

  • I think it does depends on where you live.I can't fault the care i've had but i know a lot of people have not been so lucky !

    Julie x

  • My GP said that there's the Gold Standard and then there's the Real World and the struggle for most GPs is to find somewhere between the two for their patients. TTx

  • My rheumy team are fantastic and I see my nurse and consultant regularly. They are a long way from where I live but I am in the middle of nowhere in the Lake District so everywhere is a long way!

    Mary

  • I completely understand how you feel. I have ended up over 11 years of getting the barest of attention and in agony and bedridden for half that time fighting back on my own terms. Told I would be in a wheelchair by 2012 I spent my last savings on a 22foot boat and a dog. The dog has been my healer. The boat was just nothing short of madness! I also lost my job due to the condition and it took years to get any income. My mum was suffering alzheimers and I was her only carer as well. I had no choice but to fight as painful and exhausting as it was.

    The dog was a pup, my labradorable, who got me to get out of the house and walk again. I had to do it for him as I loved him. One step at a time, me and the baby dog began learning our steps together. Now I manage regular walkies of one and a half hours although I have to admit stopping and leaning on my stick or sitting down during that time whilst he plays with other dogs. I at least get outside into the fresh air which I love and talk to real living people! This has all been of great help as the illness is so agonizing it is too easy to just quit altogether. Trust me. It is a fight every hour of every day. Getting help is not only hard to do but the doctors do not actually understand the condition really.

    Diet and exercise are everything. Vegan diet, no acidic foods, no yeasts, no processed, no dairy, no meats. I live on grain, lots of it, coconut milk, soya tofu, various oils, soy sauce, dried pulses, fresh veg and nuts and spices, ginger and turmeric and garlic and asafoetida especially.

    I hope you can be strong for you as the NHS seems pretty limited on autoimmune conditions. We all seem to be so different too! I injected humira for a few years but am now on golimumab. Better. No painkillers as they nearly killed me I was taking so many!

    All the best

    Cat or harvestingkarma

You may also like...