Diagnosis difficulty

Caitainsley

HI. I've suffered with occasional joint pain since since my 20s which has grown gradually worse . The doctors tested me for rheumatoid arthritis amd said it was negative , therefore I 'just' have osteoarthritis. But at 60 plus I 'just ' have arthritis in my feet, both knees, my elbows , several fingers, both thumbs, both shoulders . My hips ache occasionally but I am fortunate they are the least painful part of me. I also have cervical and spinal degeneration which has caused scoliosis and kyphosis. I have constant pain and have had all my pain killers reduced to 3 codeine a day which are ineffective and usually mean i have none for the nightime as I usually only get about 4 hours sleep due to pain. . The GPS want to stop them ... as per ' government guidelines '. Amitriptyline at 30mgs has little effect . I cant take anti inflammatoriies due to stomach problems.My mobility and activity are severely affected by pain every day. I've never heard of other people with so many joints affected with osteoarthritis (though I'm sure there are!) Yet I can't get any help from GPS. I havnt physically seen one for 3 years as tgey only offer me phone appointments and in those three years have reduced my medication to virtually nothing despite never assessing me in person. The physio said there was nothing more they could do for me as the exercises just made wverything worse . The latest I've been offered is the pain clinic ( again!) I've waited 3 months and still havnt even got an appointment 😪 I am so tired and have no quality of life. I feel like giving up.

I'm sorry this first post is a rant but I just wondered if anyone else has had the same shabby dismissal from health services! I changed doctors recently as I had to move to a house that could fit a stair lift and downstairs loo, so have changed doctors but they seem just the same. Sigh 😕

olivia_b

@Caitainsley Please do not apologise for ranting this, lots of us rant on here. Firstly, welcome to the online community, feel free to continue using this platform as an outlet. As for your situation, I am so sorry to hear you are going through such a tough time and have been for so long. Please know that your pain and diagnosis is completely valid. You are not alone in feeling like this we have multiple discussions on the topics of osteoarthritis in multiple joints as well as struggles with GP's. I have linked some discussions below, please if you feel up to it, have a read as it is so important to know that you are not on your own and it is okay to feel fed up and frustrated. There should be advice, within the discussions, from other members or moderators that you could potentially find useful.

As I said, please continue to update us and use this platform as a way to express how you are feeling and we will do our best to give you advice and support you.

https://community.versusarthritis.org/discussion/60081/hello-osteoarthritis-in-multiple-joints

https://community.versusarthritis.org/discussion/62383/navigating-gp-services-advice-please

frogmorton

Hi @Caitainsley nice to meet you.

I'm so glad you've found us and can hopefully vent some of your pain and frustrations out with us lot.

One of our 'old' members used to say 'We all get it because we've all got it'

It's so unfair that we are being treated this way by the medical profession I have seen at least two members in the last week or so who are rationing their painkillers because they can't get enough. This is to do with some new(ish) research which alleges that opioid pain relief does not work for chronic pain. A quick google of opioids and chronic pain shows trust after trust saying the same thing.

We are the people left struggling on.

I am glad you are going to see someone from a pain clinic and hope they are actually helpful this time and at least it will be face to face.

The only other thing l wondered was whether you are doubting the osteoarthritis diagnosis and think it might be something else? If so have you ever had any imaging done (MRIs/ ultrasounds for instance)? If not this might be worth discussing at the pain clinic if you ever get there. Also I never see a Dr alone if I can help it they are far less likely to fob you off if you go with support.

I am sending you some useless ((())) and my sympathy. I too am about to loose the only medication which helps me - my anti-inflammatories because I am now taking blood thinners and they thin the blood too😕

I just hope you know that you are not in any way alone we are all here for you.

Take care

Toni x

Baloo

@Caitainsley at your level of pain I might be swearing and cursing not just ranting. At least the forum is a place you can discuss your story its triumphs and failures. Its not to be sneezed at. I find doctors advise bang on, others find doctors useless, and to some extent that's the way it really is.

One thing to be careful of is that the doctors view they can't help you might only be reflecting your own view that no amount of help is actually helping, do be careful of that and recognise its normal.

What are the things that do help. There must be something.