Osteoarthritis and misdiagnosis.

kathyrob

Just found you all after being misdiagnosed with polymyalgia. Told now it's severe osteoarthritis. Very painful in back and knees shoulder and neck. Quite a wreck really. Hopefully get some advice from all fellow sufferers.

[Deleted User]

Hello kathyrob and welcome to the forums from the moderation team.

I am very sorry to hear you have severe Osteoarthritis in your back knees shoulder and neck and that you were initially misdiagnosed too.

We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can.

Until someone comes along I am attaching the following information links:

https://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis.aspx
and
https://www.arthritiscare.org.uk/living-with-arthritis

I look forward to seeing you posting.

Best wishes

Ellen.

stickywicket

Hello and welcome from me too.

How upsetting to find you had a wrong diagnosis! I presume you were on steroids for the polymyalgia and I hope the situation didn't go on for too long before the mistake was realised.

Unfortunately, OA tends to be an ongoing thing. I have it in most joints as a result of years of RA but my spine is pretty good. I do all I can to keep in good nick by eating sensibly, keeping my weight down, exercising as much as possible and not smoking. After that, it's mainly pain relief.

I presume your rheumatologist has now handed you over to the care of your GP. You could ask to be referred to a physiotherapist. Exercising the joints is the best way of keeping what movement we have. And I hope you'll find the links that Mod Ellen gave useful.

kathyrob

I have been on steroids for 13months so I am being weaned of very slowly. I haven't been discharged from rheumatologist yet next appointment in October. I guess then it will happen. In the meantime I have more appointments with blood clinic to sort out why I have large red blood cells. Bit annoyed I have been on steroids that weren't necessary. I suppose it will get sorted eventually. Thank you for listening.

turtle

kathyrob wrote:

I have been on steroids for 13months so I am being weaned of very slowly. I haven't been discharged from rheumatologist yet next appointment in October. I guess then it will happen. In the meantime I have more appointments with blood clinic to sort out why I have large red blood cells. Bit annoyed I have been on steroids that weren't necessary. I suppose it will get sorted eventually. Thank you for listening.

I have had misdiagnoses many times. I research everything now, for the second and third opinions.

What a task to get off the steroids, and how distressing to have spent all those years on them. I hope you find a solution. It's so difficult to face a progressive, chronic pain illness that limits us to much.

Best you. You a courageous woman

dreamdaisy

I took oral steroids for three years, the highest dose I had was 20mgs for five days, the rest I probably averaged 5mgs. I took a year to wean myself off, reducing the dosage by half or one whole mg every three weeks. It wasn't easy but the results made it worthwhile, my face resumed its usual shape and my bone density increased.

I am one of the lucky arthritis lottery winners with a creaky foot in both camps, my rheumatologist deals with my psoriatic arthritis and my GP the OA. When I say he deals with it what that actually means is he prescribes pain relief. The OA affects my ankles, knees, hips and wrists, my neck and shoulders are joining the party too. Of the two I prefer the OA because I can control it to a certain extent, I avoid acidic foods and overdoing things but of course it worsens when the cold and damp arrive - I cannot control that!

You've come to the right place, we all get it because we've all got it. DD

kathyrob

Thank you all for listening its comforting to know there are people who understand the pain we suffer with this dreaded disease and can give some advice too.I have been told to reduce steroids 1 mg every 3months so this will take ages My current dose is 8mg.

dreamdaisy

That sounds like a good plan to me, I don't know how much you have been told about steroids but I was told by a rheumatology nurse they mimic the body's natural production and intensify its effects; once we are taking them, however, the body forgets what it is supposed to do and this gradual withdrawal gives it time to wake up and get going. The best time to take them is first thing, that also mimics the body's timing.

Everything regarding osteoarthritis is slow, the progression of the disease, the way it creeps from joint to joint and it renders us slow in turn. I am lucky in that I know why I have mine and was used to dealing with the disease when it was diagnosed, if all this is new to the then that is harder. DD

stickywicket

It will, indeed, take a long time to get off the steroids but slowly is the best way and least likely to cause problems.

I can understand your frustration at having taken them 'in vain' as it were but diagnosis of many diseases is by no means simple. It's often a matter of eliminating things and then seeing what's left. I do hope they can find out the reason for your enlarged red blood cells quickly.