Feel as though I'm in limbo

mamapotter

I am 31 years old. I have been having a lot of pain in my knuckles, finger joints, wrists and elbows. I get swelling in my hand joints, but it tends to go away very quickly. I also get very tender around the ribcage. Occasionally I find I am unable to walk without discomfort, as my hips hurt, and if I keep going I start finding it hard to bend my left knee. I also am very tired most of the time, despite sleeping 8 -12 hours a day. My grandmother had rheumatoid arthritis and her sister had lupus.

I have just got back from my doctors feeling very frustrated. My rheumatoid factor is negative, my blood count normal. Cholesterol is slightly higher than it was a couple of years ago. There was a positive inflammation marker. The doctor has also ordered some tests for various antibodies, but I won't get the results until December, and the doctor wants to repeat the inflammation marker test then.

The doctor has been very sympathetic and has told me that if I was a private he would recommend I see a rhuematologist. He wants me to book an emergency appointment if I get any swelling in my joints so that he can see it.

I am the kind of person that likes to know exactly what is around the corner, so I am finding this very frustrating. Does anyone have any advice?

stickywicket

Welcome to the forum, mamapotter. I'm sorry you had to find us and I'm afraid it sounds as if you've come to the right place - ie it does, indeed, sound like RA or some other auto-immune form of arthritis.

Your doc is sympathetic and that is a big plus. It is good that he wants to see you asap as/when you get swelling. It is also a good idea to take photos of the swellings as they have a nasty habit of disappearing as soon as one books an appointment.

I do understand the 'wanting to know what's round the corner' attitude. I, too, prefer to know the worst and take control. Unfortunately, arthritis can be a tricky thing to diagnose and it does, sometimes, take quite a long time. Patience never did come easily to me but RA has taught me more, in that sphere, that virtually anything else I've come across.

You don't say what meds you are on. If it is RA or something similar, a rheumatologist will eventually prescribe one of the disease modifying meds but, until then, your GP can prescribe anti-inflammatories and paindullers.

Please let us know how you get on. We are not docs but we will help any way we can.

mamapotter

Thank you, sticky wicket, that's really helpful. I've been told to take nurofen. It doesn't really make much of a difference!

dreamdaisy

Oh dear, mamapotter, I do empathise. I am older than you and have known for some time what's up but it took years for an accurate diagnosis and that time can be very frustrating. There is obviously summat up (and with the family history too) so why your GP has decided to hold off on referring you is beyond me: whether private or on the NHS should make no difference - and by the time you get an appointment with a rheumatologist those second tests will be done and dusted. (Rheumatology departments tend to move like me, slow and lumbering.)

There are arthritic conditions that are RF negative, I have one of them but 'luckily' had inflammatory markers between one and two hundred - plus a hugely fat and hot left knee - so people gradually came to the concusion that I had a form of inflammatory arthritis. It can be very hard to diagnose tho, and it can take a deal of time. That doesn't help you tho, does it?

Keep a diary of symptoms, what helps or aggravates, what eases pain (eg treating with heat or cold, which pain relief is the better), note your tiredness levels (arthritis is tiring as well as painful) and take photos when limbs etc obligingly swell. Take this to all your GP appointments and that may egg him on to refer you sooner rather than later. This is not an easy time for you but we will do what we can to help you through it, OK? Keep talking to us, we know our stuff (despite not being doctors!) I wish you well. DD

elnafinn

Hi Mamapotter

I am sorry to read your story. I must say that I did not like what your gp said ie that if you were private he would refer you - so he is saying, as you are not, you will have to wait. There is something wrong there. He said a little too much and probably regretted it. It is a shame you did not tackle him on that one, but I know exactly how it is, we think of things we should have said after the event. You were probably a little shocked to hear him say that too. I would have been.

Like DD has suggested keep a diary of pain etc and photos are good to take as proof. If you are not happy go and see the gp again. If the nurofen is doing no good another reason to get back to him too. Unfortunately sometimes we have to make a nuisance of ourselves to make our GPs do something.

I do hope you get some help soon.

Elna x

frogmorton

Hi Mamapotter

With your family history you might think you have an idea what is 'round the corner' and have some fears for your future more than l did when this started for me.

The good news is that there are far better medical treatments now for inflammatory arthritises than there were in your Grandmother's day.

The other thing is that bloods can be negative for RF and years later become positive. there are literally hundreds of different types of arthritis so just because one has come back negative doesn't mean you don't have one form or another.

I was lucky as my bloods are also negative, but l was able to get to a GP is a proper state swollen right up and got referred pretty quickly.

My suggestions for what they are worth would be to get straight to the docs when you have visible swelling and take photos if it's Friday night (in my case almost always when you can't get to the docs!!). Take someone with you for support. Start keeping a diary. Finally stay on here and chat to us lot

Love and hugs to you

Toni xx

mamapotter

Thanks everyone, that's so helpful. To be fair on my GP, he is very new, I think its his first post. I believe he is doing the best he can and he has a really helpful attitude. That said, let's see how he reacts when I present him with a diary!

ironic

Hi Mamapotter,

I totally agree that an appointment with a Rheumy is in order. At least that way you are on the waiting list.
Also the diary of symptoms’ is very good and will help the doctor and the consultant immensely when the time comes.
Most of us have anti-inflammatory meds so that might be worth asking about next time you go and see him.
Good luck with it all and keep posting and asking questions.
Lv, I x

stickywicket

If neurofen isn't helping, mamapotter, there are alternatives your GP can prescribe. One thing you discover quickly here is that what works for one person doesn't for another. Even very similar meds work - or don't! - differently with different people. You could also take paindullers too but it's bet to get them presctibed rather than doing a DIY job.

If your doc is new and inexperienced it's quite possible he's being cautious about spending the practice's money in the current climate. When you go back, he may have decided you really do need a quicker rheumatology appt. If not, help to make his mind up!

Mat48

Hi Mamapotter, welcome to limbo land where I have been for almost a year now. It's a hellish place to be but as others have said you learn a lot through all this adversity and today I found myself reaching a new and more promising level in this roller coaster. My GP made it abundantly clear that he thought I had RA once my RFactor came home positive - but only a low positive mind you as the rheumy went on to say rather disparagingly. My inflam markers were also elevated. Because my GP has learnt through experience that referral to rheumatology take an age where I live - in the far north of Scotland - he took the brave step of putting me on one of the less toxic DMARDs.

Reading between the lines I think this annoyed the rheumy who thought it very premature and an inapropriate thing for a GP to do but we both live in a small community and rheumy doesn't and GP doesn't want to see me hobbling about for the rest of my days passing him in the street with my fate on his conscience! I also wondered briefly today if he hadn't done it partly to get me on the rheumatology list because I know from a GP mate that the rheumies on the mainland feel that too many are referred too soon. Anyway I'm very grateful to my GP for sticking his own professional neck on the line and I think yours sounds like he's quite honest and it's good to hear it as it is at least.

At one point back in June I gave my GP a row because a friend told me how important it is to get early diagnosis and treatment and i felt the system was dragging it's heals and I had already failed one DMARD - having a bad reaction to it - so what was next? Finally the appointment came in late July and rheumy was brisk and measured but said "inconclusive". I am now much worse - am in middle of second lot of steroids having been in almost constant flare for 2 months. Rheumy wrote recently to GP saying that the other more specific test called anti-ccp was negative and therefore he felt it v unlikely that he would make a diagnosis when he sees me in 3 weeks time. I felt back to square one and scared rotten - felt not believed somehow.

Then yesterday found that my inflammatory markers, taken just before the steroids last week, had come back lower than previously - CRP at "satisfactory lowering" figure. I was awake all night and went to GP today in state of misery because the mood swings on steroids are terrible for me and I'm still in some pain although swelling has gone. He said of course he believed me and had from the start because of family history of autoimmune and my symptoms but reitterated that I must take in photos in case of no swelling on the day. He is sure it is RA and said he thinks rheumy will be too. He said take no notice of lower inflam markers because they are still pretty elevated and it's not to be paid too much heed to. Sorry this is so long but I'm a bit further ahead than you are and have learned some important things already which I thought i'd like to share now.

This is the kind of stuff that everyone else on this site has been reassuring me with. You may well be sero-negative at this stage and once you get to see a rheumy everything is taken into account not just the bloods. It can take time but please be as persistent as possible and keep on at your GP because if he's young and inexperienced he will need prompting and won't want to fail you so capitalize on that all you can! Also suggest you mention sero-negative RA to him and learn as much about it as you can so that you can keep at the helm. And yes keep photos and a diary too as I'm doing. As DD said swelling can come and go fast - and has a knack of going just when you need it to be there!

This place is great for emotional support and practical advise and suggestions so you've got off to a good start Welcome!!

suzygirl

Just wanted to wish you a warm welcome, you have already been given excellent advice. Push for a better nsaid than nurofen and a referral to a rheumy. As others have said the system is slow and the gp is not as competent to interpret the bloods as accurately as a rheumy.

All the best

ruthross

Hi mamapotter,
I'm sorry you've been suffering. I totally sympathise. I think you should go back to a GP and insist on a referral to a rheumatologist. I have palindromic rheumatism - pain and flare ups come and go - but NOTHING shows in my blood. What your GP should know is that early intervention is extremely important with PR and RA. There are standards of care that suggest that a rheumatology department should see all patients with a likely diagnosis of RA within 12 weeks of a referral. If your flare ups are anything like mine, then OTC neurofen won't work. But other stuff might (It doesn't with me, but perhaps I haven't explored all options), so it's worth going back to explain and insist on trying some anti-inflammatories or other painkillers. different things work for different people, so it's gonna be trial or error anyway.

What I've learned thus far in 7 years of having this, is that you have to be extremely assertive and persistent in order to get seen by the right people or to get the care that you are entitled to. Whatever shows up in your blood - or doesn't - you are being affected quite seriously and it needs to be dealt with and treated.

Good luck.

Ruth

ruthross

Oh, and can I also add.... I would LOVE to know what's round the corner! Sadly, with my PR, I can never know. It's something that takes a while to get used to, but with a disease as unpredictable as mine, I've had to deal with it!

Mat48

That is interesting - poor you it must make life horribly uncertain where planning and explaining etc is concerned? Do you know how they decide what is PR and what is sero-negative RA? If nothing shows up in your blood ever then surely that doesn't rule out RA? Do they take very regular checks on your bloods and do they scan your joints often? I just don't understand how they differentiate because many people with RA seem to have the same palindromic symptoms as those with PR? Baffled me? :???:

elnafinn

ruthross wrote:

What I've learned thus far in 7 years of having this, is that you have to be extremely assertive and persistent in order to get seen by the right people or to get the care that you are entitled to. Whatever shows up in your blood - or doesn't - you are being affected quite seriously and it needs to be dealt with and treated.Good luck.Ruth

You are so right, Ruth, we do unfortunately, sometimes have to fight to be seen by the right people. We sometimes have to make nuisances of ourselves so the gp, the initial port of call, sits up and takes real notice.

Elna x