Pre-diagnosis; advice on questions to ask etc

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.  😊

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 ! 

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

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

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!

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. 

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.