Recent diagnosis - feeling overwhelmed

StefH

Hi all, thanks for having me. I've recently been diagnosed with osteoarthritis of the AC joint (shoulder) I'm 37, I broke my collar bone over a decade ago which is how I have ended up in this position. I've been going for physio every 4 week's and that definitely helps the muscles around the joint but the joint pain is constant. My doctor stated "it's not going to get any better, you will have this for life now" then proceeded to tell me that some of the things I love would make it worse, swimming, running, paddle boarding and cycling. As far as pain management she prescribed codine, and told me to swap between ibuprofen, paracetamol and codine depending on the level of pain and not to take one type too consistently, which is confusing, none of them really get rid of the pain but at times the codine has but that also makes me feel exhausted. I'm normally very active, I have started looking for activities that I can do and am trying to remain optimistic but that's getting hard, does anyone have any ideas, tips, tricks or anything that might make me have a little optimism?

noddingtonpete

Hello @StefH and welcome to the Group. We are a friendly and supportive group and I hope that will be your experience as well.

I've put a couple of links in below from our website which I hope will be of some use to you.

https://www.versusarthritis.org/news/2021/june/five-ways-to-help-shoulder-pain/

and

https://www.youtube.com/watch?v=8TSleFg_Etw&list=PLXKNfcIcSzgXx4x8JP-HUb7nvhy5GmijK&index=1

You might also find the Pain Management article of help

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Please keep posting and let us know how you are getting on and I hope you find something to relieve the pain soon.

Best wishes

Peter

AnnaS

Hello StephH

I think I understand how you're feeling; I've been a keen walker, runner, gym and BodyPump enthusiast and it took some months before I was finally and recently diagnosed with OA in three different parts of my body. You're very young too, to have this, and your doctor doesn't sound helpful - it took me seeing three different doctors at my surgery before I found one who took me seriously and made referrals to confirm what we thought was the issue.

Whilst not (yet?) in my shoulder, I was lucky enough to get a GP referral to my local gym where I had a special programme worked out for me which really helps. Might that be something you could access?

Re pain relief: I take Ibuprofen 400mg when it's bad and a hot water bottle on the offending part.

I wish you all the luck in managing this condition, and don't give up finding ways to manage this condition,

Ax

Baloo

@Steph I am not a great fan of if it hurts use it, and hurt it some more. I can see the point but not when comfort is the issue. I take it easy on anything that hurts and this is what the physio also says. if it hurts, stop.

I am more a fan of it hurts, stop, and let it calm down. I am currently pain free, but it has been about a year of painkillers and being gentle then suddenly out of nowhere the pain has gone and the strength has come back.

I don't know how to explain how that happened, its as if I woke up one day and my system said no more painkillers thanks very much, I will take it from here.

One thing though is I took up cycling again, after obtaining suitable physio for my knees, and its as if the extra and somewhat gentle exercise, has tipped a scale. I agree with you find something you can do, possibly with a bit of adjustment to make it possible, and break through to a normal acitivity. Maybe normal will take back over . . ..maybe thats what it does.

Booberoosh

I have recently also been diagnosed with arthritis in the ankles and like you Steph find that all the things I do are under threat. I have yet to see anyone who can give me advice about these kind of issues (just been referred but still waiting) and have been very tentatively moving about the house and not being able to go out unless there is someone available if I should be struck down by the pain. This dilemma is almost as big if not bigger problem than the pain itself. Having only just joined this group (today in fact) i already am optimistic that fellow sufferers will be able to provide more answers than your GP has.

Joe123

Hi stefh

I am in the same position, I served eight years in the parachute regiment, from 1991 to 1998 I was very fit until a year ago and I started getting hip and back pain when running, I used to stretch it off but got worse. Long story, but after various tests and scans I got diagnosed with arthritis on lower back both hips and my big toe..the doctor put me on naproxen, morphine patch and gabapentin. It took away the pain but I couldn't function, I went to Spain on holiday and I couldn't cool down, I thought I was getting microwaved, on returning from holiday I spoke with a doctor who told me that I couldn't get off my medication or else I would be in extreme pain. I did come off as the side effects where herendous. Now I am in constant and extreme pain daily, I bought a dog to get me walking and I Walk daily with some friends and their dogs, that's been brilliant. We can walk around 7 miles a day and when walking I am in agony. But having a positive attitude and just talking to mates, getting some banter does help, especially for the mental health side. Keep your chin up mate, life is to sort, and try to make the best of the cards you have been dealt

Nellybaby

I have just joined the group and read your post with interest especially where you walk 7 miles in pain!Do you have a very high pain threshold?I have issues with walking too but when the pain starts I have to stop..If I continue it is at a snails pace -literally a few steps at a time..The fact that you are already very fit must help.

henrrietta

HI I am new here and tho I have PsA, I've had a horrible diagnosis of severe OA in both hips. I could not work out how to write my first post, I am in serious pain and none of my clinicians seem to care. Where I live there is no simple GP access. And I couldn't walk there anyway. I'm pretty upset, since I feel OA cannot be treated and according to the NHS "very few people need a hip replacement". I'm lost. How do I access help? Thanks for reading Henri x

PJoanne

Hello @henrrietta

Welcome to the forum.

Are you able to give the VA helpline a ring? They are fab and will be able to outline how to access help, the number is at the bottom of this post. It does sound like your primary care service (gp) should be doing more.

Best Joanne

henrrietta

I think I have it worked out, is it normal for posts to be in a moderation queue and not show up immediately? Thx

PJoanne

Hi @henrrietta

Yes, normal!😀 The mod's team are all volunteers, posts get looked at a least 2 a day everyday . We read everything. It shouldn't be too long before your posts are showing up.

I was sorry to read about the attitude of your clinicians. Sadly I am experiencing the same thing. There is loads of information on the main VA website about living well with OA. I've linked to the main landing page. On the far right next to the red donate button there is a magnifying glass, if you click there and enter your search term you will get some good stuff!

https://www.versusarthritis.org/about-arthritis/

best Joanne