Getting a diagnosis

[SusanR99]

Last October I had sudden onset symptoms: unable to form a fist, loss of function of 3rd and 4th fingers both hands, painful feet, fatigued and nausea, but tests are negative for inflammatory disease. But the symptoms persist. Has anyone experienced difficulty with getting a diagnosis? Or are my symptoms all in my head as my GP says.

[nomoreheels]

How did your GP come to that conclusion? I take it from you saying tests are negative for inflammatory disease that he/she performed blood tests, specifically for inflammation (ESR & CRP) & Rheumatoid Factor or even anti-CCP. Were you given a printout of the results? If not would you politely ask for them & post again with the results? We can possibly help some more with any additional info you can give us. I can't believe he thinks it's all in your head, shameful. Often with the pain & fatigue comes nausea, you could try drinking more water, that may help, or good old ginger.

In the meantime it might help to have a read through these links from the NRAS site nras.org.uk/making-a-diagno... & the 6 steps of the Inflammatory Arthritis Information Pathway nras.org.uk/1-recognising-s...

Whilst it can be difficult to diagnose in the early stages maybe these would give enough info to ask your GP about early diagnosis nras.org.uk/early-diagnosis nras.org.uk/getting-the-mos.... Despite the NHS rolling out information relatively recently to GP's, educating them in recognising symptoms of RD some are still not getting it I'm afraid.

Good luck, oh & welcome! Let us know how things go.

[SusanR99 in reply to nomoreheels]

Thank you. I'll do as you suggest. And thanks for the links too. Really appreciate your kind support.

[nomoreheels in reply to SusanR99]

You're welcome. Just a few thoughts Susan, are you taking anything to ease your pain or inflammation, paracetamol, ibuprofen or any other pain relief or anti inflammatory available over the counter, low dose co-codamol (8/500mg) or similar? If you are the next time you see your GP again it might help to stop taking them a few days before your appointment so if inflammatory levels are taken again the result won't be influenced by meds, that is if your first was. Have you also considered seeing another GP in the Practice, if you think that would be appropriate... or you could check if any have an interest in musculoskeletal diseases. Worth a try. Meantime have you tried either hot or cold on your worst affected joints. Some people respond to cold (a bag of unopened frozen peas wrapped in a towel) but I find warmth better, on my feet especially. Before I was diagnosed my feet were also terribly painful so I can empathise but I found wrapping a hot water bottle in a towel & alternating having it on the top & the bottom of my feet eased the pain somewhat.

[SusanR99 in reply to nomoreheels]

Thank you! Yes I've found warmth helps. I've been wearing gloves with the fingertips cut off. I'll try your suggestion of heat on my feet. Many thanks.

[Jacki08]

Hi Susan--- it took 4.5 years for me to get a diagnosis of RD- as all my bloods came back as normal every time they were taken. I kept getting fobbed off with the menopause-- and I knew it was more than that. Keep pushing and revisiting your gp -- you know your own body. My disease was only found when I firmly asked for an ultra sound of my hands. Good luck 😊

[SusanR99]

4.5 years! That's a long struggle for answers. Thank you for your feedback. I'll keep keeping on!

[8080]

Been trying to et di

[Hidden]

Hi Susan - One thing we always recommend as well is to keep a day to day, and if needed, hour to hour, diary of your symptoms. It is useful for several reasons: 1) you may be able to discern a pattern in your pain... food related? exercise / stress / cold / weather related? (Probably all of the above) 2) it will be great to show your doc and may get their attention.. be sure to rate your pain from 1 - least pain to 10 - most pain, each time you make an entry. Finally, take pictures to show swelling , redness, etc. I find that for some odd reason (placebo effect maybe?) I suddenly feel better when I get to the docs actual office, no matter how bad I felt even an hour before...

If you discover that some specific thing is causing your pain to exacerbate (wheat is a really bad culprit for RA for some of us - as is dairy and for some, red meat), try cutting that out for a while and see if it helps reduce your pain...

To answer your other question, yes, many of us have had difficulty getting a specific diagnosis. Menopause, age, hysteria - you name it and they will frequently use it as a reason for what you are going through. Just don't let them make you feel like you are less, or needy or intimidated while you search for an answer..

[Simba1992]

You mentioned that you have nausea combined with your joint symptoms. Have you tried dietary changes? If your gut is in a bad shape because you are sensitive to some foods then you often react with joint symptoms. As CaerylUSA above mentioned gluten is often a culprit as well as diary and sugar. You might try to leave these out for three weeks and see if there is a difference in symptoms. Important that you really completely leave these out😊 Good luck, Simba

[agreen24]

i had the exact same symptoms as you. one morning woke up and the knuckles on my smaller fingers were sore and i couldnt bend or form a fist. i have had pain and stifness in right elbow and less so in right shoulder as well on and off but constant in pip joints in small fingers both hands. i initially felt flu like symptoms and had sweats at night for a few days and have felt fatigue and tiredness ever since. Its been 5 months since and i still have pain in fingers/ hands and the odd pain in elbow, feet, shoulder but less fatigue. I have been to see 3 rheumatologists who have all said they cannot determine what it is yet as i dont have swelling. i have had bloods done also that come back with no ra indicators. im hoping its something that is going to pass, wish you all the best.

[SusanR99]

Thank you. Yes, this is my experience too. It's the not knowing that is so frustrating and emotionally draining. Very best to you too.

[Bully915]

Hi Susan I was diagnosed pretty quick about 4 years ago, I had been on placement when I became tired and sore joints after a short period of time went to see doc as not sure what was happening I was waiting to go for MRI scan on knee and that and my bloods came back showing sudden onset of RA so was pretty quick but my partner is the opposite her bloods show no signs of arthritis but has all the signs now awaiting to see rhummy hopefully soon as she has different symptoms from me.

[KayEP]

Can you ask to be referred to a Rheumatologist?