O/A Widespread

Jan1955

Hello everyone… I was just wondering if anyone can relate to my question.

I have been diagnosed with osteoarthritis. It started in my back and is now very widespread including my hands feet and knees.

My specialist says its not rheumatoid, but i always was under the impression that osteoarthritis never affected so many areas.

Do any of you have O/A thats widespread.

I hope you are all doing well and coping in this journey of ours.

noddingtonpete

Hello @Jan1955 there some others on here with widespread OA. For example:

https://community.versusarthritis.org/discussion/58550/widespread-osteoarthritis

and

https://community.versusarthritis.org/discussion/comment/667893#Comment_667893

If you do a search on the Community (magnifying glass at the top) you can find these and more so maybe connect to them and share experiences.

Hope this helps

Peter

crinkly

Hello Jan1955.

I was diagnosed with widespread OA in my mid 40s. That was a very scary time as I wondered how the condition might spread. Thirty years on I am glad to say that the journey has been much less limiting than I imagined - mainly because I was able to adjust to changes as they occurred.

My spine, knees and hands were affected first, followed by wrists, elbows, shoulders, feet and hips - on both sides. I, too, was surprised but RA was very quickly and decisively ruled out. I was lucky enough to be seen by a Professor of Rheumatology who confirmed that this was well-documented although not the most common presentation of OA.

I did as much research as possible and soon recognised that, as a non-life-threatening condition, OA attrracts limited support for research and holds little attraction for potential Consultants. At many stages I have felt abandoned and unable to source effective support but realise that GPs (who are charged with managing OA patients) have almost nothing to offer and should not be criticised. For the future there is considerable hope as VA helps fund promising research projects.

Like many people I made my way through the lists of NSAIDs and Pain Relievers, finding that some had unwanted side effects that I wasn't willing to endure and others lost efficacy over time. A Pain Managment Programme was encouraging and made me thankful that I had a good understanding of my own body, was quite resourceful and had a husband who was (and is) a great problem-solving partner. All along I have tried to make the most of what I could (and can) still do and I managed to keep working as a secondary school teacher for more than five years post diagnosis whilst still enjoying family life with three active teenagers.

As we have moved house one GP was especially understanding, but others seemed to have no inkling of the problems and there was little available NHS help other than referral for surgery when that was appropriate.

Consequently I had to make major life-style decisons for myself, the biggest one being to invest in an electric powerchair so I could continue to enjoy the freedom of independent outdoor mobility.

By now, at 77, I've had minor surgery to one knee and both shoulders plus a full reversed shoulder replacement on one side. At present the NHS in my area is unable to offer spinal surgery unless I develop symptoms that constitute an emergency and I find myself increasingly dependent on my trusty powerchair and on my amazing husband for general household tasks. We've been able to afford a stairlift and retire to a house that is particularly easy to clean etc so I'm very fortunate. We both invested in E-bikes when the leg-power to push pedals deserted me, and I remain able to drive and to be part of a well-known voluntary organisation supporting people in despair. (There's a stairlift in the building from which my local branch of that charity works and good quality office chairs for volunteers so I hope to be part of that service for the foreseeable future.)

Apologies if I've written too much but yes, widespread OA is a recognised condition, which is definitely not easy to live with. I accepted that I was stuck with it for the rest of my life and determined that it would not restrict me or my family more than was unavoidable. Over the years I have learned to live with an undercurrent of 'discomfort' but still sometimes gasp at the sudden sharp pains that occur, especially in feet and hands and from my back. I've had to accept that there will be times when I feel excluded, useless, frustrated and threatened by depression.

My mobility is, by now, seriously compromised by the state of my spine and I've had to work out my own best ways of dealing with that, of using pain meds and of coping with bad days - sometimes uninvited but at other times inevitable following inescapable or chosen increased physical activity. Yes, joining in with events can sometimes prove well worth the cost of extra pain!

Through this forum you may be assured that you are not alone and, if you have specific questions or comments for me or others please don't hesitate to post them here or to send a private message. Most of all be kind to yourself - you will, I hope, find that it gets easier, with unexpected bonuses along the way.

Baloo

@Jan1955 its in my arms and legs, although the classic version of OA might affect one or two areas in particular, maybe ones that already had a previous injury anyway. I get by with nursing one part or another rather than trying to fix the lot.