Feeling lost - needing a diagnosis

anneka87

Hi everyone,

Apologies for the long post. I'm feeling rather dejected and lost. Approximately 8 weeks ago I began experiencing pain in the knuckles of both index fingers and middle fingers. Gradually got worse with redness, swelling (weirdly worse in my left hand), increased pain, and the pain spreading to my wrists. I wake feeling very sore, activity worsens the pain. Some days are worse than others. I'm struggling with a number of everyday activities which worsen the pain. Eg dressing, straightening hair, driving. I don't appear to have lost any strength in my hands, they are just painful and swollen.

I approached the GP after two weeks of symptoms. Referred to physiotherapy who ordered blood tests, also had an x-ray on hands wrists. Been told all test results were normal.

I have a diagnosis of osteoarthritis in my knees, though no one ever told me for definite it is on my medical record. My knees have been sore since my mid 20s and now make some interesting noises when I bed them or walk up and down stairs. I also have an inflammatory skin condition.

I was convinced my symptoms very much sounded like RA. And the physios have suggested an inflammatory element to my issue. But they won't refer me to rheumatology as my tests were all normal and I don't meet the referral criteria. I have had conflicted information regarding splinting and exercises. I'm taking over the counter pain relief. Which does help a little. But other than it seems the plan is to wait 4 weeks to see if it goes away.....it's incredibly frustrating.

Has anyone else had issues with diagnosis or support. I'd love to hear your stories.

Thanks 😊

Naomi33

Hello @anneka87 and welcome to the online community.

Sorry to hear your concerns regarding knuckles/fingers and wrists and lack of use.

I have bad days (flare ups) when my hands do not want to work so understand your frustration.

I was diagnosed with Rheumatoid Arthritis eventually after months of pain and no support.

I made a diary and got friends to take photographs when I was having a flare up as proof to show the doctor and persisted with them as in so much pain. I eventually got referred to RA Consultant who confirmed and I started treatment straight away.

I would suggest you do the same.

I found exercise good for me and the following may help you ….

https://www.versusarthritis.org/about-arthritis/conditions/hand-and-wrist-pain/

Best wishes @Naomi33

Baloo

Yes. I am fairly certain that doctors live on a different planet so I go along with it. I had skin rash and swollen legs. The first thing prescribed was anti histamine and steroid cream. When the rash went down but nothing happened to the swelling I was referred and the outcome was compression stockings (which worked btw). Oddly enough I am still on the anti histamine and don't really know why. I get some dry spots and don't bother. I stopped wearing the stockings and its all sort of stable. Maybe its time I tried to improve on things but since the worst is over, I kind of live with things as they are. Slightly fallen apart, but stable.

Naomi33

Well listen to your body and seek help if you keep falling apart in the future.

You reminded me as I had forgot, I also had swollen red feet and legs which I put down to walking for a few hours earlier in the day.

So again I took photos and sent to friends who said it looked like gout, slowly went down after resting and elevating legs but was scary at the time.

Take care @Naomi33

anneka87

Thanks @Naomi33 and @Baloo for your comments and advice.

Perhaps I should be more assertive with the GP and physio but they have this knack of making me feel like a nuisance. I think because I am managing and still working (be it in pain) I'm not taken seriously. I just feel I'm too young to be experiencing these difficulties (37).

I've been meaning to start a diary so will get on that! I will also do my exercises.

@Baloo you deserve the answers you seek. Don't give up 👍

Emmasknackeredjoints

I also take pictures of my joints when they are swollen red and painful. I hope no.one ever steals my mobile or they will think I have some mad fetish for people's joints lol lol