Waiting for a diagnosis

Hi, I've been unwell now for 10 weeks with what appears to be quite severe RA. It came on really suddenly on a weekend away, initially with really painful, stiff and swollen joints in my ankles but within days it was affecting my toes, knees, fingers, wrists, elbows and shoulders. It also affected the joints in my ribs (costochondritis!) and left me with very dry eyes. I've been struggling ever since to try and manage the pain and stiffness and it has been such a shock as to how much it has totally affected my ability to function and even do the simplest things. On my worst days I've struggled to get in and out of bed, the bath, walk, carry things, open cupboard doors etc etc. I've dropped numerous cups of tea and even fell last week as the stiffness was so bad. Trying to walk around the freezer section of the local supermarket is horrendous as the cold causes my knees and anckle to totally cease up and I end up in severe pain as a result (Does anyone else find this to be the case? Thinking of getting thermal long johns, just so I can shop!!!)

I'm currently on prednisolone 20mg, codeine 30-60mg 4x day and naproxen 500mg twice a day, which only just keeps me pain free and able to function. One of my GP's in their infinite wisdom decided that I should reduced the steroids down to 10mg this week and within days the pain and stiffness were back really bad again with me barely able to function again (Thankfully my other GP increased them again!). He did an urgent NHS rheumatoid/early inflammatory clinic referral 10 weeks ago but sill no sign of an appointment in spite of both my GP and I constantly ringing them. In desperation I've now gone private and have an appointment this Weds 12th.

The fatigue has beeen awful and I'm having to pace myself as much as I can but sometimes I just have to give in and crawl to bed. I can't believe how much his has knocked me for six and am desperate now to get a diagnosis and treatment. Any suggestions on how to prep for my appointment would be much appreciated - thank you.

24 Replies

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  • Snap mate I've been in bed since Tuesday and it feels like Donald Trump has dropped 1 off hi bombs in my rib cage, plus I can't lie flat as it severely affects my breathing. I was trying to hold out until tomorrow then get an emergency appt at the Doctors burial think I'll be in A+E the days out I'm on Benepali and mtx 20mgs so don't want to take any chances and today's mtx day so I'll think about whether to take it later on and also lost appetite and hardly eat anything since Tuesday but been drinking gallons off water and tonic water and my mouths still so dry that it feels like I've not had any liquids😩

  • You sound exactly how I was 6 years ago - it's horrendous when it hits you quickly so much sympathy. By the time I got to the first appointment I was virtually bedridden. Anyway, just to say that I'm now fine, and have been in remission for a few years now. Back to 95% normal thanks to a cocktail of drugs. So there is hope. The negative side is that it took nearly a year to find the right mix of drugs and get me fully functioning again - so may not be a quick fix for you.

    As for your appointment. Try to note down the main points of your history - when it started, where etc. Think about whether any blood family members have one of these auto-immune diseases, and whether you've had any recent viral illnesses. If you can it can be a good idea to stop the naproxen a few days before so the doctor can see you at your worst.

  • This is how it happened for me. - about a year ago now. I was so much in pain with all those things you mentioned. I couldn't lift a blanket, put things in cupboards, open car doors, turn a steering wheel. Sleep made no difference. I felt like I had flu. I couldn't sit up from bed, a chair . Walking was like being in a torture chamber. Now, a year later I am functioning pretty much ok. Still have stiffness and pain but much reduced and I don't want to go back to where I was. I am now on mtx 20g, 200g hydrooxychloriquin but it took months to build up in my system. I'd say bit by bit - about 6 months at least. I now being prescribed a biologic. But the msg of my posting is. Be patient - you won't get better over night. It will take time. You will get there. There is lots of light at the end of the tunnel. The meds do work. The steroids just get you through flares or before DMARDS kick in. Keep posting. Lots of us started out like you. Anything you want to know. Just ask.

  • Your story similar to mine, sane meds too ! Just wondered, did you change your diet in anyway ?

  • Julie

    Your experience is almost a perfect match with my own from this time last year! The only difference being, it took a keen young locum to listen and a trainee GP to pursue an urgent referral for me to Rheumatology.

    I could not: raise my arms to shower or shampoo my hair; get out of bed or raise myself from any seating where my bottom was lower than my knees without extreme agony; make hot drinks or prepare food. I'd almost forgotten the amount of time I wasted trying to get my mind over matter before I'd even attempt to get off my bed or off the 'loo': the pain was so intense up my spine and into my neck.

    I had to resort to the 111 weekend service on 2 occasions, with an out-of-hours appointment on a Sunday to get a prescription for Naproxen, but that doctor would not give anything stronger as he was anxious not to mask the symptoms before assessment by Rheumatology. It pains me to say it, but you may need to reduce your painkillers before your appointment.

    Good luck!

  • Julied sorry your suffering just one more sugestion take photos of your swollen joints,the chances are the will be normal when you see your consultant

    Hope you get some relief soon.

    Regards Mike

  • Hi, Julied24,

    Unfortunately what you describe is the way quite a few people on this site first developed RA.

    The GP will probably have tried to reduce the Prednisolone because he doesn't want you on it long term. You will read here how difficult it is to be weaned off it.....& it's side effects can be "unusual"!

    If you can bear it...try to reduce the dose of Naproxen a bit before you see the rheumatologist....you will have to grin & bear it ....but the rheumatologist will see then see how much pain you are in & will hopefully give you some sort of injection for short term pain relief, so that you may be able to reduce/stop the Pred until you get settled on whatever medication is suitable.

    On a practical level to help cope with the pain- ...buy some Melamine crockery...it's light & it bounces ! My wrists are also affected badly so I bought a little water heater ...you fill it in the morning with a jug , & you have boiling water at the press of a button all day without having to turn taps & lift kettles. (I'm a woos...so I have one in the bedroom too)Look on Amazon.

    It will probably be trial & error as to what meds you will will end up on, but don't despair. I was diagnosed 18 years ago & for most of that time I have had rheumatologists who have kept me at a (almost!) bearable pain level.I can't play tennis any more, but I can walk a reasonable distance without pain. Haven't climbed out of a bath for years though! The fatigue comes & goes with me...I am retired so thankfully don't have the pressure of a job to worry about.

    I hope you get some sort of relief on Wednesday....if no injection is offered...ask for one ....you will find if you are diagnosed with RA you have to be proactive....but you do have to give each drug a chance - they don't work overnight ...but if no improvement over 12 weeks or so ask to change. I know that sounds a long time but Disease Modifying Anti Rheumatic Drugs (Dmards) sometimes seem to kick in overnight after about 3 months.

    Try not to worry too.....stress is a definite No No with RA.

    Good Luck on Wednesday!

    AC

  • I'm another one who had the kind of scary onset you describe. Worse time of my life, I was so ill and so scared of what lay ahead. It took almost a year and numerous steroid injections to get things well under control and now I'm almost back to normal. As others have said, hang on in there, things will improve more than you can imagine right now. I thought mine must have been really severe the way it hit me, but at the moment it is behaving well!

    Prep for appointment.......keep a log of exactly what's going on. Perhaps take someone with you, perhaps reduce steroids before you go so they can see how things really are.My main tip however would be wear decent underwear! For some reason I didn't realise I'd have to strip off and had an old bra and Knicks on ......to be honest, at that time, I was just dragging on whatever I could manage......must have looked a real state 😬

    Good luck to you

  • Ha ha that made me laugh! The same thing happened to me with my underwear and I was mortified!!

  • When I was unexpectedly asked to strip off and put on the hospital gown, I thought the consultant meant everything. Luckily, I plucked up the courage to ask if I could keep my underwear on. If I hadn't, well, it would have been red faces all round because those hospital gowns don't leave much to the imagination. I was embarrassed enough at him seeing my underwear. (Luckily, it was matching underwear.)

  • Luckily (or unluckily) I wasn't asked to strip down. I wonder why? Probably just as well as I seem to be turning into a human twiglet and it's not pretty

  • Me too. My stats are now 38 28 38, which sounds good, but with my skinny arms and legs I need more meat on me. When the consultant first saw me and my underwear I was just over 10 stone and happy at that, but now I'm anywhere between 8 and a half and 9 stone. Which I don't think looks good on a woman of my age and height. My appetite has completely deserted me since being on drugs.

  • We could almost be twins!

  • Oh god yes, my tatty underwear! I forgot that bit of humiliation....

  • Hello Julied - firstly you are in good place for support and understanding. I was diagnosed in Nov 16. I found a list of questions I list below. I found these helpful for my visit. Do adapt accordingly.

    All the best. Hessie x

    QUESTIONS FOR RHEUMY:

    1. Which RA medicines do you recommend for me, and why?

    2. How will we know if my treatment is working?

    3. What are the possible side effects?

    4. Would physical therapy or occupational therapy help me?

    5. Does exercise help? What kinds of activities are safe for me to do?

    6. How are my joints doing?

    7. What lifestyle changes do you recommend for me?

    8. What other specialists should I see?

    9. Are there complementary treatments I could try?

    10. Will I need surgery?

  • I see you've been given loads of good advice already so not going to repeat, but just wanted to say hello and welcome. Just like you, I had a really sudden scary onset in January 2016 and just happened to stumble across this site when I was looking through Dr Google (can be a really scary thing to do, make sure you stick to reputable websites for info or you'll worry yourself sick!) and have to say this site has been invaluable for advice and support from people who know exactly what you're going through. I am now in a much better place with drugs that seem to be working pretty well for me, so there is light at the end of the tunnel, just hang in there and let us know how you get on. Take care.

  • Like many others RA hit me like a train and you have already had great advice.

    I can't stress how much having a friend come with me to hospital appointments has helped. Especially in the beginning when I couldn't take much in. Even now she remembers things that I have forgotten once I'm out the door. She writes it down for me (I couldn't write at all until the meds kicked in) and it's been really helpful to have that information as a record. Also do try and stop the naproxen - I've been asked to do that before my next appointment as I respond to them really well but deteriorate without them which has been masking how well I'm actually doing.

  • My advice for your first appointment is to take someone with you if you can. My appointment took about 3 hours including blood tests and x-rays. My sister came with me and was able to add details she'd noticed that I just took for granted. My RA also came on very suddenly - on the last Thursday in October 2004. It was the half term holiday and we were in Northern France with friends. We'd visited the Thiepval Memorial, and by the early evening I was very stiff and in severe pain. It actually took until August 2005 to get a firm diagnosis of RA after going through various other forms of arthritis. I wouldn't say my life is back to how it was pre diagnosis, but it is tons better than those early days. I'm on mtx, Enbrel, dihydrocodeine and 7.5 mg prednisolone. One warning I would give, and I would have done things differently if I'd known, is don't become too reliant on the steroids. I now have adrenal insufficiency, which means my adrenal gland can no longer produce the natural steroid cortisol so I will always have to take steroids.

    That was a bit of a ramble! Good luck with your appointment and let us know how you get on.

  • Thank you all ao much for your replies - so helpful and reassuring - thank you.

    The advice too especially about reducing meds (don't relish the thought but understand why!), the key questions and the underware :)

    Can I ask what's the benefit of having a steroid injection over takjng the tablets?

    But thank you - reassuring to know I'm not alone!

  • I think an injection kicks in quicker and lasts longer. I had my first in the buttock but in 10 days I'm due one in my rt knee, as my Rheumy found a problem there which I hadn't noticed until a daughter mentioned I should get it checked out. I don't tend to prod myself anywhere!

  • To lighten the experience, I was glad of my daughter's assistance before and after x-rays. We left the curtained changing area to find a smiling audience who'd listened to our giggles over my comment that my daughter would never have made an effective dairymaid: her reluctance in handling my 'boobs' at variance with her eagerness in latching on at birth! 🤗

  • See what your doctor recommends. I started out on prednisone which helped a lot, but did want to continue on it because it increases your weight. I am taking a biologic called cimzia which has helped me tremendously, but now sure if my insurance will continue to keep me on this. I had juvenile arthritis at the age of 15, but I stayed active all my life and continue to do so now. RA flared up in my early 70's. I eat mostly organic foods, do all my juicing with organic fruits and don't eat foods that cause inflammation. I use a lot of ginger and tumeric. You should research natural remedies for your RA along with what the Dr. prescribes.You have to find what works best for you because we are all different.

  • Hi - sorry to hear that you're feeling so awful- hope things start to improve soon for you. Your story sounds similar to mine: how it came on so suddenly and throughout your body- I feel your pain 😕Things will improve though- rest and move 😔

  • Thank you all again so much - all your answers are such a help.

    I have in fact been researching anti-inflammatory diet advice as well as natural remedies etc and have been doing very gentle stretching excersises to try and keep the joints moving 👍

    Will let you know how my appointment goes - thank you

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