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Waiting to see a rheumatologist

Hello,

Thank you to anyone who takes the time to read this and i apologise in advance for what i know already is going to be a long post. 7

My name is Tom and I am a 32 year old male.

I started having RA symptoms about 10 weeks ago following a strenuous walk. It started as pain in my feet which i put down to the walk but they just never seemed to get better. It seems to get slightly worse every day and is now in my toes, heel (this is particularly bad) hands and fingers, both knees and just recently can feel it on one of my elbows. I had an existing cartilage tear in my right knee that i suspect has to do with this.

I was muddling along fine but the last couple of weeks have been really bad and I'm even struggling to get down the stairs in a morning. I am a landscape gardener and unable to work currently which isn't helping with money etc either.

I saw a GP approx 6 weeks ago and bloods were done. Upon following up with this i was told by a different doctor that everything was ok, Another 2 weeks went past and i went back to see another GP only to be told that i had actually had a positive rheumatoid factor result on the previous test and referred to a rheumatologist.

This was 3 weeks ago and things seem to be getting worse and I'm starting to get a bit scared. Does anybody have any tips to help with this while I am in limbo land waiting. Also an approx wait time to see them from referral?? Not having any sort of treatment apart form Ibuprofen which helps a little but I'm pretty reluctant to take them 4 times a day for weeks on end.

Thanks for your time, I have 3 kids and a lovely partner who is being great but i feel like my constant whinging might be too much at times.

Many thanks for any replies.

Tom

21 Replies
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If you are having pain then probably best to try paracetamol instead of long-term ibuprofen. Safer and fewer risks of any side-effects at the normal dose.

H ope that helps.

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I agree - regular doses of paracetamol as per instructions on the packet - you will still get morning stiffness/soreness but it should ease as day goes on and as the paracetamol builds in your system. Also, if you do wish to continue with ibuprofen please ask your GP for a stomach protector such as Lansoprazole which needs to be taken half an hour to an hour before any food or meds. For the pain in your hands and feet you can try either soaking in hot water, or cold water, or a mixture of both alternately, which can bring some temporary relief. I was fast-tracked to a rheumatologist when my GP realised what was wrong, so from mid August when I first presented with symptoms, my appt was in November. If you are in real pain you could ask your GP for a steroid injection to help you through until you see your rheumy. They work for some, not for others, but certainly worth a try. I'm not sure whether GP would prescribe a course of steroid pills - may have to wait till you see rheumy for those. I find they work far better and for longer than the injections. I really hope you can get seen soon. I always suggest ringing the rheumy dept and saying you will take a short notice cancellation appt if one should happen to turn up. That way you may get seen sooner. Good luck, and try not to panic. Once you get onto some proper meds things should improve for you!

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Hello to all and thank you again for taking the time to reply to my post.

I have just got of the phone with the doctors surgery, the nurse is currently chasing up my referal so i should have a better idea of timescale soon, i think requesting to see the Gp is wise so will do this when she phones back to discuss the ibuprofen and painkillers.

It is very scary how i have gone from a fit strong man with a manuel labour type job to hobbling down the stairs like an old man in 10 weeks. What I'm worried about is what state i will be in in another 10-12 weeks. Is this normal for untreated disease to spread so rapidly?

Thanks for the tips about hot water etc, warmth does definitely help to a point.

Whilst i have pain and stiffness all over it is my heels which are giving most stick and making it very difficult to walk, right where the tendon meets the bone is extremely sore. Also totally off my food which is extremely abnormal for me.

All advice and tips very much appreciated. Sorry to go on, I feel like it is all I ever talk about to people at the minute.

Tom

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Hello Tom180711,

I'm a newbie too and left a really long post just recently- (even longer than yours so don't worry!) and the advice I received was really helpful.

Sorry to hear you aren't well at the moment- it is really scary how quickly your life can be affected. I feel like a totally different person to myself this time last year.

I was referred by my GP in January and I hope to get an appointment with my Rheumatologist in May. However, this is in Scotland - I am not sure what the wait times are like with you. I have now asked to be put on a cancellation list so I am hoping that I manage to get seen soon. I can't help but feel that the long waiting without a clear answer makes the whole process feel a bit more difficult. I you have a quicker referral time.

It might be worth asking to be put on Codeine - I find it helps with the pain. I am also on Naxroproven (inflammation), Paracemetol (pain killer) and Omezoprazole (to help my stomach) - please excuse the spelling.

I hope you get some answers soon!

Best wishes,

BlackNov

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Thank you for taking the time to reply, I do hope you are seen before May, that seems like an awfully long time to muddle through! Will be interested to see how you get on having been referred at a very similar time to me!

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This stage is the absolute worst, so don't apologise - we've all been there!

First off talk to GP about interim help, perhaps even a short course of steroids to help you manage. Yes anti-inflammatoires have there problems along term, but (e.g.) Naproxen and a stomach protector can also help. However you have to make sure you stop all treatment well before your appointment with rheumatologist.

Sadly in some areas it can be up to 18 weeks wait. Your GP may be able to push to get an urgent appointment, or you can ask for cancellations if you can attempt at short notice.

For me it did hit me like a train, and I went from normal to useless in the space of about 6 weeks. Sorry. However, sometimes that can be to your advantage as may make for a clear cut diagnosis and immediate treatment incentive you get to the rheumy. If your symptoms and blood tests are vaguer it can take forever to get taken seriously.

As others have said, heat and cold help. Some people also find wax baths for hands and feet helpful. But also REST! Hard with your job, but even 5 minute breaks can make a big difference. And try to change tasks regularly so not doing the same movement for a long time. A pack of gel insoles from local chemist might help your feet.

And also EAT! Healthy food, like lean protein and vehetables not fats and sugars. You body is fighting a war, so it needs feeding even if you are not interested in eating.

Often younger men get reactive arthritis rather than rheumatoid arthritis - equally nasty and painful but it does tend to vanish after a year or so..so here's hoping. Did you have any sort of virus infection in the weeks leading up to your first symptoms?

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Thank you for the reply!

I did not notice anything out of the ordinary with regards to infection prior to this "hitting me like a train" which is a very good description of how i feel. Is it possible to have reactive arthritis with a positive rheumatoid factor?

The nurse has chased up the referral and they agreed i need to be seen urgently and that it WILL be in April so i suppose that is relatively quick given what i have heard.

G.p appointment tomorrow also so will discuss with them what can be done if anything in the meantime.

Bit better tonight as always, dreading the morning again :-(

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Hi Tom, you already got some sound advice from some good people. My bit is: keep a diary over the next months. Note pain (where and intensity), mood, and stress levels. Be sure to write a list of all the questions you may have before visiting a health professional. No matter how trivial it might seem, if you think of it write it down. Your GP or RA person will thank you for it. It will make your appointments more successful.

I was diagnosed in 2009 and for the last four years I have been leading a normal active life again. All the very best.

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Thank you! sounds like a wise thing to do, i have started writing a few questions down so that i don;t forget them. I have literally just downloaded the rhuema buddy app thing from the nras site which seems to document most of the things you have mentioned :-)

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Good on ya. NRAS have a lot of very useful information.

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Tom, a recent study detected a particular type of bacteria in the colon for 75% of RA sufferers. They recommended a premium probiotic to push it out of the colon. I recommend you try that for now. I also recommend a good quality Tumeric and Bosweilla. These two are natural supplements. Stay strong.

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Hi Tom,

Am so sorry to hear you are having a bad time. I too am quite new to all this, having being diagnosed last October. Am really glad you’ve found this site as i’ve found lots of reassurance and good advice here, as well as information which made me feel a bit more in control of what was happening.

I started in much the same way as you, a few odd things that I put down to over exertion. Then all of a sudden my knees swelled up massively. I went from being a completely able bodied active mum of 3 young girls to someone who couldn’t stand for more than a few minutes, could hardly walk or use my right hand which also became very painful. It came on I incredibly fast and scared me to death.

I saw my gp who made an emergency referral to a Rheumatologist and my appointment was within a fortnight which was amazing but as I also was lucky enough to have health insurance through my husbands work I made a private appointment within a week, incidentally with the same consultant I am now under on the NHS.

The first thing the consultant did was put me on a 4 week reducing course of steroids while they did the other investigations. I know steroids have their downsides but they were a miracle for me and I was mobile again within a week. I needed a second course to get the swelling down completely. And by the end of that I had started on methotrexate. I have been lucky with that and 3 months later I am fairly much back to normal. I am running up and down stairs again and can easily walk 4 or 5 miles without any problems. I am sure this will be you again soon, so please don’t think its the end of normal life.

If I were you I would go back to my gp and be clear how this is affecting you and push for a quick referral or cancellation. If that’s not forthcoming i’d ask about a course of steroids to help with the inflammation until long term meds can start. If you still don’t feel you are getting anywhere there is always the possibility of contacting a Rheumatologist privately. I know it’s far from ideal and I guess they will charge you about £150 for an initial meeting but it should get you some initial treatment and maybe get you into the system so you can get access to the nurses and doctor you need. The consultant I saw privately was fantastic and got me straight into the nhs system.

I wish you the very best. Try and keep your chin up. Normal life will resume in the end.

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Thank you for for the reply!

It is nice to hear the good stories, running up and down stairs was a norm for me with three kids and one i never thought i would miss!!

The private thing had definitely crossed my mind, i think now that they have said April i will hang in there but longer and i might well have gone for that.

Seeing the GP soon so hopefully he gives me something to help. Hope your treatment continues to go well and many thanks for the lovely reply!

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Hi Tom - I am so sorry for what you are going through. As you can probably tell, there are many of us on here and we understand your frustration / situation / pain. Another thing that is under discussion but that seems to be true for a couple of us on here, is a bad root canal / crown. One other lady on here had 2 - 3 root canals done, then crowns on an incomplete job. After getting the bad teeth removed, she found that she was much less RA than she thought, and last I heard she was back at work. Anecdotal evidence for sure, but a thought nonetheless. Best luck and gentle hugs as you start going along the path.

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Hi Tom

Sorry to hear you’re suffering. Also sorry for my lengthy reply! I am new to this too. I started getting pain in my hands & wrists last October and was referred to the rheumatologist very quickly by my dr and seen in November. (I just thought I had carpal tunnel). I still haven’t had a concrete RA diagnosis, they’ve just said undifferentiated inflammatory arthritis at the moment. My negative blood tests don’t help!

Definitely get on the cancellation list for the rheumy. Work with your gp too for pain relief as it’s not a quick process with being treated. Once they’ve diagnosed you, they may also do ultrasounds of your joints. (Mine aren’t massively visibly swollen even though I’m in agony so they’re doing scans to see the swelling). They’ll then start the treatment of disease modifying drugs which take 4-6 months to work so you need pain relief whilst they’re working. For pain relief I started on naproxen then etoricoxib (non steroidal anti inflammatory drugs) but they weren’t helping much so I now find co-codamol works best for me but does make me very spaced out :-(

I started on my first Dmard in jan and have been thru some horrible side effects and hoping they’ll kick in soon.

I’m currently on steroids (third course since Nov) as had a few bad flare ups. I’m hoping once I’ve had my ultrasound in May, they’ll put me on an additional disease modifying drug.

I’ve learnt that I need to help myself a lot and can’t just rely on meds. I do yoga, use a warm wax bath, lots of heat pads, take supplements and try to keep stress levels low.

I hope you get seen soon and they can start helping you. Take care.

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Thank you for the reply and please don't apologise for the length! So many nice people here I'm quite shocked by the responses!

Sorry for the late reply, been very busy with docs and the kiddies (you will know that feeling)

I will look out for your future posts as you are similar age and family situation!

I wouldn't say that my joints are overly swollen either, i do get some redness on the knuckles, not so much in the feet except achillies part of heel but the pain and stiffness is there. I actually keep checking my feet expecting them to look horrific but there is nothing there.

Saw Doctor yesterday who have naproxen and have had appointment date from hospital so bit of a better day!

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Hi Tom, this is a very frustrating and worrying time, being in the dark and not knowing what the future will bring. Your dr should prescribe steroids in the short term to help with pain, they work wonders. You shouldn’t be left to struggle on. You may also be referred to a podiatrist so they can fit you with an orthotic insole to help your feet, mine worked wonders after weeks of literally hobbling around.

It’s a horrible disease and altho I’m older than you at 55 it come as a massive shock which took a long time to come to terms with. It’s not the kind of disease you can fight, you have to live around it as much as you can. Stay active but don’t over do it. I’ve started swimming which I really enjoy and I walk every day with my dog. I’m an artist working mostly in stained glass so that is a problem where my hands are concerned.

I hope you get the results you are hoping for. Take care 😊

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Thanks for reply!

The doctor has given me naproxen, I'm a bit annoyed to be honest that they didn't give me something while i waited for rheumatology app, Ive been struggling for weeks and they could see that when i first went to the G,p.

I do like to keep active but I'm beginning to wonder if I will ever be able to return to my Landscaping / Labouring work properly, it is very demanding on joints and muscles even when fully fit. May have to look into alternatives for work and keeping fit in the long term.

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Overwhelmed by the responses to my post, thanks ever so much for taking the time to write such detailed replies!!

I saw the Gp yesterday who has prescribed me naproxen and also had my rheumatology appoint through the door today which is for the 23rd of this month, good news!

Would you guys take the naproxen in the few days before appointment, I kind of want them to see me at my worst so to speak.

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Hi, glad you got some painkillers. It really is a life changing disease. I’m not doing as much glass as before but that is partly because I feel like a change after doing it for more than 20yrs.

I’m going to be starting on HRT as I feel this may help with my pain, and if it doesn’t at least I’ve tried. I have found all the heavy arthritis drugs very hard to take with awful side effects, almost as hard as the pain. Rock and a hard place really!

Anyway, I wish you well! This forum is a good place to be when you need support/advice 😊

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Hi Tom

I was diagnosed a year and a half ago. Yes it hits you like a train Keep looking to the positive once you see your Rheumy and get a treatment plan sorted for you things will improve. Hang in there 🙂

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