struggling to get a diagnosis

kezza170380

Hi, I'm not sure if I'm in the right place to get any help but i dont know where else to turn. I have been suffering with sore, painful joints for about 2 years. Starting in my wrists then thumbs, then outside of feet, big toes and now my index finger knuckle, both left and right sides in exactly the same places. No inflammation showing on tests or any markers for rheumatoid just raised ck. Went to the consultant today and he said as there is no inflammation he thinks its just normal aches and pains! This is definitely not everyday aches and pains. I am so frustrated and fed up. I have a young son and I'm scared if it carries on he's going to be looking after me in the future. I am 37. Have you any advice about this? Where can go next or how can i get a diagnosis? Any advice would be much appreciated. Thanks.

[Deleted User]

Hi Kezza and welcome to the forum.

I'm so sorry to hear you are suffering painful joints for the last 2 years. The Helpline Team will be better able to help provide advice, but do ask if you need any help with posting on the forums.

There are also lots of lovely helpful people on the forums if you wish to post questions in Living With Arthritis.

I look forward to reading your posts
Best wishes
Brynmor

stickywicket

Hi kezza. I'm not a member of the Helpline team, just an ordinary forum member with rheumatoid arthritis, but I read your post and the bit about being worried your son would end up looking after you resonated with me. That was my fear for my sons when they were growing up.

Some forms of autoimmune arthritis give negative results and this occasionally confuses GPs but not rheumatologists. One would normally assume your rheumatologist is right in his or her diagnosis.
I don't know anything about ck levels except that they are to do with creatinine but (and I'm no expert, just a patient) I didn't think they were connected with arthritis.

What I would personally do in your situation is go back to my GP and ask what it all means. You clearly have something wrong but it might not be arthritis. I usually find GPs really good at explaining things. I do hope you can get some answers.

(By the way, my sons are now in their 40s with children of their own. They 'keep an eye on me' but don't look after me except in the way any other son would for any other mother.)

I'm sure the Helpline people will be along soon.

daffy2

Hi kezza. Like Sticky I'm just one of the forum members, not one of the Helpline team, but wanted to comment because you are the same age as my daughter and if she was describing the same problems to me I wouldn't see that as 'normal aches and pains', and certainly not over that length of time.The only occasions she gets to that sort of state it's usually involved a day's equestrian activity!(and goes away in a day or two)As Sticky says I think you need to take this up with your GP. If nothing else you could do with advice about what medication/pain relief might be helpful.

helpline_team

Hi kezza,

Thank you for posting on our helplines forum. I am sorry to hear you have been experiencing pain in your joints for 2 years and have not yet received a clear diagnosis. It sounds as if this has been an anxious time for you.

Making an appointment with your GP would be a good next step, as stickywicket and daffy have suggested. A second opinion from a different rheumatologist may also be worth considering. You may or may not have arthritis. There are many different types.

For more information about how arthritis is diagnosed, follow this link: https://www.arthritiscare.org.uk/do-i-have-arthritis/diagnosis

Our Managing Pain booklet may also be helpful. See: https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/217-managing-pain

If, in the future, you are diagnosed with a type of arthritis and would like to talk things through, you would be welcome to call our Arthritis Care free helpline on 0808 800 4050 weekdays 9.30 – 5pm.

I hope this helps.

Best wishes,

Fiona, Helplines Worker