don't know what to do

gabbyhorecka Member Posts: 2
edited 28. Nov 2023, 14:06 in Living with arthritis

Hi all. I was diagnosed with arthritis years ago. It became a real problem during lockdown. I'm still not clear which type I have. I've been waiting for an appointment with a rheumatologist since Sept 2020. The doctor is useless. I'm gobsmacked that there are no courses I can join to find out about arthritis - the helpline told me arthritis is a self managing condition before getting me off the line asap. There is tons to read but the more I read the more confused I am. I'm currently completely exhausted and have to produce a newsletter by Monday morning. I'm in despair.


  • Aj_x
    Aj_x Member Posts: 206

    Hi @gabbyhorecka

    Thank you for contacting the Online Community Forum. From reading your post I understand that you were Arthritis years ago. Who was it that originally diagnosed you if you are still waiting to see a Rheumatologist? Has the doctor made the initial referral to the Rheumatology department do you know because I think that would be the best place to start is ring the department at the hospital that the referral has been made at.

    When you spoke to someone from the Helpline, you needed them to listen to you and sincere, not get you off the line asap. I have attached the link for the Helpline Forum, and I am hoping that someone on there might be able to offer you more advice and Help. I think the best thing to do though would be to ring the hospital though where the referral is made.

    Everywhere you look there is some sort of reading and it really all depends what you are looking at. The best place I can recommend to find out information arthritis and pain etc is the versus arthritis website. I have attached a link for that as well. There is a search bar at the top so you ae able to type in exactly what you are looking for and fingers crossed something will come up.

    Is the newsletter for your work? Have you explained to them about what is happening and how you are feeling?

    Have a look around the other forums because you might find other people that are in the same situation as yourself. I really hope to see you again on the Online Community Forum. Just remember now you have contacted us the once you are part of our Online Community Forum Family!

    Take Care & Stay Safe


  • Jona
    Jona Member Posts: 406

    Hi Gabbyhorecka,

    great name btw, have you had recent bloods done? There are a few types of arthritis when your body is dealing with a lot of pain it does make you very tired and lockdown has made it worse for many, has the doctor suggested any pain relief maybe time to see them again I find simple stretchy exercises in the morning and only do till the pain gets too much and I make sure my bedroom is dark and I try breathing exercises before I go to sleep

    You could call the appointments office for rheumatologist and ask to be added to the cancellation list if you can go at short notice but if it’s osteoarthritis then we get words like wear and tear especially if a certain age like it’s supposed to be expected pain is never to be expected it’s a shame these people can’t walk a mile in the shoes of people that are suffering most will when they age but until rheumatologist has found what type of arthritis you have it’s stumbling around in the dark

    take care

    love Jona 😊💪

  • Lilymary
    Lilymary Member Posts: 1,740
    edited 30. Apr 2021, 13:05

    I agree, there’s no harm in chasing up either the GP or the Rheumatology dept for the appointment. It’s sad to say that those who “self advocate” get seen soonest. (In fairness, consultants recognise that this is a problem, but it’s a difficult one for them to resolve, particularly when the waiting lists are so long). Sadly the waits are much longer than anyone would like, but it may move you along the list a bit.

    you’re right though, self-diagnosing on the Internet is a fast road to hypochondria, paranoia and bewilderment. It might be worth having a consultation with a really good physio, who can do an overall assessment and may be able to suggest some gentle exercises to help you while you wait, and while they can’t take bloods or prescribe meds, they may be able to suggest some over the counter treatments you could try, or can write a letter to your GP suggesting what they think would be helpful in managing your conditions (eg prescription meds, xrays etc). My physio has been a great help over the last few years that way.

    Meanwhile, have a trawl around this site. There are some really useful sections on types of arthritis, learning to live with and manage with your symptoms, and managing pain. This forum is great too, lots of experience from other arthritis sufferers, and a good place to come when you’re just feeling downright fed up. We all know how this can get to you,