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

Counsellor12

I have been experiencing bad pain down the lateral side of my leg so bad that I have difficulty walking. I have been diagnosed with severe arthritis on the medial part of my knee but weirdly I have little of no pain there. I've seen GPs, consultants, physiotherapists and been told all sorts of things. An MRI in my knee now shows a range of secondary problems like synovial swelling and meniscus tear. I've been offered a knee replacement and told the pain in my leg might be referred pain, but then I'm also told it might be coming from my back. I don't want to go for surgery if it doesn't sort the lateral part of my leg where the big pain is. Has anyone else had this kind of problem? Really grateful if anyone has any ideas? Thanks

frogmorton

Hi welcome to the online community.

Pain in my leg was my back. Surgery righted it more or less @Counsellor12

I hope the meniscus tear does repairs itself and that you are having physio for it?

Others may be able to help you more

take care

Toni x

jamieA

Hi @Counsellor12

I'm on a waiting list for a left knee replacement. I had a football injury 36 years ago resulting in the removal of the meniscus. In 2020 my left knee swelled and I had it drained of excess sinovial fluid a number of times. I was diagnosed with inflammatory arthritis during this time. In 2022 I was told the knee needed replaced due to deterioration but I was reluctant to go ahead with it at the time. I walk with a limp - favouring my left leg - though I do still walk 50-60kms a week. I intermittently get a really sharp pain in my lateral calf - usually when I'm stepping back but not always only with this movement. I've been told this is caused by the knee deterioration and subsequent change in my gait to compensate and the way my muscles and tendons react.

Counsellor12

Many thanks for your replies. I've been feeling really isolated with this and it's good to hear of others with similar problems. I'm beginning to lose faith in the medical services.

I was initially referred for my back and knee but the physio dealing with the MRI , when she saw the results (severe medial compartment OA, meniscus tear, synovial swelling, secondary lipoma aborescens, chondral debris), she cancelled by back appointment (although I gave her no permission to do so) and offered me an injection or referral to knee surgeon. I asked to see knee surgeon because wanted to know if secondary symptoms would be causing the lateral leg pain. He hadn't looked at MRI when I arrived and dismissed the secondary symptoms. Although he offered a knee replacement, he was also thrown by my pain and took X rays of my hip - which were fine. He also wants my back checked. He also suggested that an injection might be diagnostic?

I've now gone back to the surgery and asked for my back to be checked but will have to wait on appointment. I've got an appointment with muskoskeletal physio next week for my knee. I'm trying acupuncture but no improvement. I've been offered no physio yet for the tear, no offer to drain in the swelling. 8 months ago I was fully mobile. Now my knee bend is extremely painful so difficult to drive and the pain in my leg comes on after 500 yards walking so badly that I have to constantly rest. This is making work difficult as well. I'm inclined to agree that I might be compensating for the knee pain (pretty effective actually as I have no medial compartment pain!!) but I want to be doubly sure before agreeing to surgery. Even then, the surgeon wants to do a full knee replacement although I only have OA in the medial compartment.

Anyway, thanks for reading and your responses - it just helps to know there are others out there!