Pre-diagnosis; advice on questions to ask etc

Bones, joints and muscles
1

Dear all, first of all I'm brand new to this forum and hope I am in the right place (apologies if I'm not). Let me start by saying I'm a 27 yo female based in London. 

I was referred by my GP to a rheumatologist 2 months ago after experiencing an intense 3 day migraine, fatigue, joint pain and inflammation across my fingers, wrists, hip, knees and neck and morning stiffness for nearly 5 hours. I was simulataneously referred to a clinical infection team as I'd recently travelled to Costa Rica but all my tests have come out negative (and they have tested for everything....twice). Currently my GP suspects RA.

On my initial visit to Rheumatology I was told they'd prefer to see the outcome of clinical infection team before conducting more tests, but did inject me with steroids in my lower back which has alleviated the morning stiffness to some extent. I am currently on naproxen and co-codamol by my GP.  

I return to the rheumatologist tomorrow. So far my blood tests have been negative for rheumatoid factor but some markers have shown inflammation (forgive me but I've forgotten which ones). 

I am looking for some general advice in terms of the kind of tests I can expect to have at this stage. My symptoms have generally gotten worse since initial onset of symtoms and today, now I have on/off pins and needles in my feet and hands, more fatigue and general brain fog and my work is suffering when I have been able to go. I've also developed lumps on my elbows and backs of hands but the naproxen is helping the inflammation and the steroids have been helping the morning stiffness somewhat. I have lost full range of motion in my neck and hands and have lost ability to grip some things. My mood has really taken a beating whilst I have gone through this process.

If anyone can also offer any advice when I go to see the rheumatologist in terms of things I should be asking them to look at generally or tests to do, then I'd be very grateful. I've made a list of all the symptoms I've experienced so far and the general time line. I am not trying to steer towards a particular diagnosis (and I appreciate rheumatological illnesses are generally tricky to diagnose as they are many and varied) but I want to make sure I go armed with a bit more knowledge and advice. Apologies if it's a bit wordy and all over the place and thank you in advance. 

2

Hi Leanne, so sorry to hear you are having a rough time and yes you are on the right forum. You really sound like you are suffering. I am reasonably new to R.A. Negative and I have to admit it takes a while to  get a diagnosis. I started with problems with my feet, inflammation, red and swollen to look at and couldnt walk very well. Also awful fatigue, a muzzy head. Hand joints and knee joints painful. Everyone presents with different symptoms. I would say, tell the Rheumatologist everything you have written here. He will probably do more blood tests and maybe X-rays.  Probably do research on  the Arthritis web. They explain all the different types of arthritis. I hope you get some answers soon, it can be debilitating and cause you to feel very low. I'm sure you will receive a lot of advice on here and you'll realise your not on your own and there are a lot of people on here in the same position. Let's hope once you are diagnosed and receiving treatment that helps, your pain will ease.  Let us know how you get on.  😊

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Hi Leanne sorry to hear you are feeling so unwell ! I was diagnosed with sero negative RA in May this year (aged 37) after a few months of unexplained aches & pains ! I was working out with a PT and horse riding a lot & just thought I had pulled something ! We went on vacation to the uk and suddenly I was in so much pain I could not figure out what was wrong with me but I did start to think there was something seriously wrong the pain getting crazy I was struggling to brush my teeth or put on makeup ! As soon as we got back I went to my GP he suspected an auto immune disease and ordered bloods inc an arthritis profile ! The results showed inflammation and he suspected RA ! He seemed pretty cool about it & said don't search the internet it will only stress you out (what...?) I was in AGONY that morning & had struggled to drive the 5 miles to the hospital then sat in the waiting room for an hour in pain just sitting still ! When  I got home and burst into tears sick of the pain and not knowing what was wrong ! So frustrated it's such a confusing time ! That afternoon I googled local rheumatologist and booked an appointment! More bloods and 2 X-rays on my two most painful and inflammed areas - left knee and shoulder - he also tested my liver etc to ensure I could handle the drugs he would need to prescribe and determine how much ! 3 months later I am on to 2nd RT I have tried several different meds but I'm getting there and in a lot less pain ! It's a journey that's for sure I wouldn't wish it (this horrible disease) on anyone ! Good luck ! Let us know how you get on ! 

4

Hi Leanne, sorry to hear you've joined 'our gang' though you're very welcome and it is good to talk to people who are singing from the same hymn sheet. I was diagnosed with psoriatic arthritis about 6 years ago now and it was a steep learning curve. It's also very difficult for people around us to understand. Many people have an arthritic knee or more and think it's the same. It's not and that can be frustrating for some.  I was given a lot of information initially mainly around treatment and their side effects, of which there are many I'm afraid. I found a 'communication card' I was given useful to record my blood results so I could track them, get more familiar with them and it was insightful relating them to my symptoms, I suspect that is standard practice but I don't know. Although I was given a contact number I didn't make as good use of it as I should in the early days when I had flare ups. I now know to ring them if I have concerns, symptoms not controlled, infection etc. They are often not available immediately but get back to me which is great. My GP is great but I was once given an antibiotic which was contra indicated with my P.A. meds. I am more cautious now. I would say my overall experience has been 'up and down'. I've had some awful flare ups, a range of treatments and some nasty infections but I'm generally able to get on with life. I suggest you ask about work. It can be very difficult at times. I had an empathetic occupational health doctor (who was confined to a wheelchair) who was very supportive which was great. The nature of your work will make a difference but there have been times I couldn't hold a pen and the tiredness can be extreme. I've deliberately not talked about meds but you may find it's a bit 'trial and error' till you find what's right for you. I hope I've not bored you rigid!  Good luck. Carol x

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Hi Linda firstly thanks so much for your response! I've tried to limit the amount of research that I do because my mum is a fan of self diagnosing which hasn't always panned out well! Anyway I've stuck to the symptoms and think my doctor may be right it'll be some form of arthiritus I'm just worried about the length of the process as the steroid injections are already starting to wear off (I think, at least it feels that way) . Thank you for all the information and I will update

6

Hi Leah thanks so much for your message and so sorry to hear of your woes. Totally appreciate your talk of agony it's very much like that too even with Cocodamol there's a lot of pain. Thanks for your advice on the tests it's helping me know what to expect tomorrow and I will keep you posted! 

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Hey carol thank you so much for your informative message. Such a good idea about keeping a note of blood tests as I (evidently from my original post) don't remember the tests let alone the results. My work is my key worry outside of my health as currently my boss has provided a lot of flexibility (flexible working and from home) but we are a small team and I am not sure that they can manage fully without me (or someone in my place) there in normal working hours long term. But I want to wait to get a full diagnosis before making a rash decision.  Thank you so much for your post it was really very useful and not in the least bit boring  

8

Hi Leanne. Sorry to hear of your tough time. 

You are asking good questions already. Others have thoughtfully prepared the kinds of questions you might like to ask. I just googled "rheumatoid arthritis patient questions" and the first pick was from rheumatology.org - they seemed pretty good questions Then there are plenty more. The various arthritis.orgs are good bets, I find these discussion groups friendly but poor for concise advice. (No offence guys!)

I am 50, male, about a year from the beginning of my first RA symptoms. I guess I am lucky in that my blood tests, when I had them, were strongly positive for RA in that diagnosis was easy and my treatment began fairly promptly. It was a difficult mental time of uncertainty, trying to learn everything I could, along with being highly cautious about advice from amateurs like us! That challenging time went on for 6-7 months as I went through an initial relieving but temporary treatment with oral prednisone, learned I really had to take regular pain relief, worried about at what stage I would be permanently "damaged". We're told to try to stay fit and strong, to increase our resilience when the disease is bad. That was a tricky balance, as I didn't think I was very fit to start with... I have found aqua-jogging to be quite relieving, mainly as my hands and feet were too sensitive and painful to handle much else.

My work has been sympathetic and helpful.  I count myself lucky. I told my management about the situation and they lightened my duties for some months. It also turns out there are a couple of senior people in my area, one with  RA, one with psoriatic arthritis and they're successfully treated and high performing people. They got in a sitting/standing work station, and some forearm rests. These thing helped me take pressure off wrists, hands, and changing position sometimes helped the stiffness in my hips, knees, legs and painful feet. But in reality the mental fatigue was proably the hardest thing to cope with, as it made me not just struggle to deliver but anxious as to my ability to do my job at all. 

To my relief that period has passed to a great extent. I have had my symptoms pretty well controlled for several months now. I am responsive to fatigue - I rest and take naps when this occurs.

Be prepared to weather some slow progress. I would have laughed at this a year ago, but I practice some meditation, and had psychological advice to help me get to grips with it. I've come to appreciate things I can do, having experienced being unable to do them.

Good luck with being diagnosed, and I hope a treatment course gets underway for you as soon as possible.

Blair

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Hi Leanne

   You have certainly come to the right place and you have received some great advice already on the forum

   Definitely write down the questions you want to ask the doc tomorrow.  More blood tests will be done specific to RA but sometimes they come back negative.  They test for inflammation with sed rate and crp tests among others.  Unfortunately it can take awhile to get the actual correct diagnosis but does sound like familiar RA symptoms

Extreme fatigue was a major issue for me and pain varies with ea person.  My diagnosis was made by xrays and confirmed with MRI of my hands.  The doc has to exclude other diseases.   I do see you wrote the tests showed inflammation.   It does take time to find the right medication and a confirmed diagnosis.    Having to accept this diagnosis is really difficult.   My 3rd medication has really helped me greatly--  so sorry you have to deal with this at such a young age.  Let us know what happens tomorrow    Best of luck!

10

Hi Leanne, welcome to the club~~~~ I called it a shxt of a disease! I was diagnosed with rheumatoid arthritis a year ago and me meds worked well initially but then I stopped and it came back even stronger. I had to go on a stronger dose after that but it was affecting my liver so I had to stop it again now. Since stopping the meds two weeks ago, I've been getting pains all over my body every single day so now I keep a diary of it. One day it could be my hands, the next day would be wrist, the next would be knee.......ever unpredictable and in so much pain! The doctor prescribed me prednisolone to ease my pain until my liver comes back normal. I believe everyone's experience with rheumatoid arthritis is different but they all have one thing in common - pain! I guess the best way is just to try to live with it and take it easy cuz there's simply no cure. 

11

Hi Leanne, glad all our input is helping. I'm not sure where you live, but I only went on Arthritis Uk. This gives info on all inflammatory arthritis. It explains each one and all of the treatments. When I eventually saw the Reaumatologist, he gave me a few leaflets on Arthritis and different meds that can be prescribed. When I looked on Arthritis uk, all the leaflets came from there. It is the official site here. I should have said I looked after my diagnosis. Glad everyone is sending you their experiences, but as I said everyone presents with different symptoms and side effects from medication. Good luck. 😊

12

I too suffer from sero-negative psorasis, have had psorasis on my skin from when I was a child, just not a very nasty form, just dry ans scaly area, and like a bad dandruff.

Rheumo Dr always gives me the results of ESR and CRP, tells me how much inflamation I have and if it is going up or down, I have monthly blood tests, but only see the rheumo six monthly as I now have some control with medication. 

Rheumo told me  almost as the first instruction, go out and but some odourless fish oil, and take 60000mg a day, 2 for breakfast, 2 for lunch, and 2 for dinner. is the only way I can manage to take them with food, otherwise I get nasty reflux.

I have been experimenting again with lack of wheat, check every packet,for wheat content, and watch for hidden wheat content, for the last two weeks, have been only eating rice, cooking it up from scratch, with milk and bananas for breakfast, salad and eggs for lunch, with some salmon, for me it does make a difference in the amount of pain I am in, the more wheat I eat, the worse the pain and immflamtion, and yes I have been tested for celiac.

13

Hi Blair thank you so much for your very thoughtful response.

Completely appreciate the fitness aspect. Until a few months ago I was able to pull up and tricep dip my own bodyweight without issue and was a keen gym goer and loved my yoga. Some yoga has been useful to maintain but its very much restorative and I hope that post diagnosis and medication I can one day regain some of my previous exercise regimen.

The anxiety around delivering on your work is also felt by me too. It sounds as though your workplace was very understanding!  Thank you again and I will update the board post my appointment today.

14

Hi Gloria,

Thank you so much for your advice on the tests, I will ask for the results of those (I am sure both have been tested continually through the last 2 months of hospital visits but it would be good to write down all results so far) Sounds as though there is a lot of trial and error and certainly no one drug fits all approach. I will update more when I know more! 

15

Hi Lisa

So sorry to hear of your struggle through this process and thanks for the information. I am glad you said about it being different joint affected depending on the day as its very much the case with me. Hip and fingers and neck are consistent but the severity of other joints changes day-today. Thanks again 

16

Hi Lyn thanks so much for the response. I will definitely be reviewing my diet come diagnosis. I decided to buy vitamin d now as I've heard it can be beneficial (and with the weather so cuddy in England I definitely think I could do with it regardless!) I will definitely be looking into fish oil or getting more oily fish into my diet too as I definitely don't have enough anyway. Thanks for the information on the dosage too! 

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Vitamin D can be toxic if you get too much, as I understand it. Your best source is the natural way, exposure to the sun, your skin manufacturers all the vitamin D you need, unless you are very dark skinned and live in england that could be a problem. 

I am very fair and live in australia, and even though the Dr's tell me to keep out of the sun,(skin cancer rates here are off the scale) I still need some sun, but not enough to burn me, I go out in the morning to peg washing, , have a wander around the garden, we grow our own veges, probabaly half an hour a day without hat and without sunscreen.my Vit D levels are normal, your Dr can test you for that,

18

Hi Lyn! Back when I lived in Australia I was in the sun a lot but in the UK weve hardly had any for nearly 2 months and it's supposed to be summer. You're right in satin I should get tested though I'll ask when I go to my GP this week thank you

19

Dear all,

Went to the Rhuem department yesterday and saw Consultant as well as Physicians Assosciate. Had a thorough examination of joints and they witnessed the pain I felt on each and they felt the now quite minor swelling left in my finger/wrist joints (largely kept under control by the naproxen).

I have been put on a 2 month course of presnidone 20-15-10-5mg and told I should feel a lot better in 24 hours and I have the number of the consultant if I don't. They are suspecting viral althralgia for the moment although where/when they think I had the virus is anyone's guess. Apparently my blood work is only minorly elevated for inflammation (even though I wrote this down to ask I forgot to bloody brain fog). I'm due to see them again in 2 months but didn't repeat blood work on the day. 

So I guess we see how this runs. I did ask them what the next step would be if this doesn't resolve this but the consultant said she's a bit stump as I've literally no blood work to suspect anything else I've been told at any point that I feel worse to call them straight away. Apologies if I'm now in the wrong forum! 

20

Leanne, please don't feel you are on the wrong forum. I have serenegative A. That means it doesn't always show in your bloods. I was being treated for an injury to begin with. It took nearly 2 years for my Rheumatologist to diagnosis me. It is difficult as they have to go on what they see a on the day. I always forget to ask a question Id planned to ask as I feel they are to busy to keep asking. At the moment they are treating you with Prednisone and let's hope this works for you. It's is a question of trying different meds, as everyone reacts differently, if you start feeling worse, then ring them back. When you are feeling so wretched with pain, fatigue and brain fog, everything seems a thousand times worse. Trust me, we have all experienced  this at some time.

Let's hope the diagnosis is correct and the virus will clear. If not they will try other meds. Please don't despair, it is early days. Mine went from injury, to psoriatic Arthritis to inflamed Arthritis to in the end Seranegative Arthritis. It took a long time to get to this. I remember feeling so frustrated, especially when you have been fit before. I hope the meds help, you aren't on the wrong Forum, any time you want to ask a question, please do. There are a lot of great people on here. Good luck. 😊