Hi everyone...

WelshSquirrel

Hi

I'm 49 and have been living with pain in an ever-growing number of joints for over 10 years. I was sure I was following the same pattern of Osteoarthritis that my mum has, but my GP and the local pain clinic didn't seem to believe me until recently. X rays and an examination by an ESP physio confirmed OA in multiple levels of my spine (lumbar and cervical) as well as both big toes and thumbs and some fingers too.

I feel that I should be pleased that I've been proved right, but not so keen that I now know that I'm stuck with the pain which is likely to worsen. A low dose of Amitriptyline is helping, and I try to keep active.It just seems unfair given that I'm not overweight or a smoker, and also that no one can tell by looking (except for my husband and my mum - I can't fool them!) that I'm in pain and. Given my age people often don't seem inclined to believe I'm in much pain. It's not that the pain is agonising most of the time - but having twinges and aches in so many places is still hard going at times.

Having looked through this forum I can see that I'm not alone in feeling this way, which is good!

[Deleted User]

Hi WelshSquirrel,
and welcome to the online community. It is not unusual to have mixed feelings about your diagnosis especially as you rightly point out most people can't see that you are in pain. Sadly this is one of the problems with having what can often be a hidden disability. Also unfortunately life doesn't work on the principles of fairness, as you point out you have done everything to keep your body healthy. Unfortunately we don't really know all the causes of arthritis.

Good to hear that the Amitriptyline is working and even better to hear that you are keeping as active as possible. Coming to terms with living with osteoarthritis takes time and is different for everyone, we have a great thread on that topic here https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=23619&start=315
There is also a good section on the website that you might find useful here https://www.arthritiscare.org.uk/living-with-arthritis
Our wonderful members will also have some great support and advice for you based on their experience. Keep us up to date with how you get on
Best Wishes
Sharon

dreamdaisy

We humans need to rid ourselves of the concept of fairness, it helps no-one and achieves nothing. Hello, it's nice to meet you but I am sorry you have to find us. I began my first arthritis in 1997 aged 37 then OA was diagnosed in 2011. It's interesting having a creaky foot in both camps - well that's what I tell myself to make it more palatable.

I was born with auto-immune troubles so to develop an auto-immune arthritis was hardly surprising; what came as a total shock was the OA diagnosis, I stupidly thought one could only have one or the other. What a twerp! There are around ten million arthritics in the UK, the majority of whom have OA so you are far from alone. I think it's ubiquity works against it in terms of it being taken seriously as a disease, those without it then to brush it off not realising the impact it can have on it lives and that of those around us.

I hope you find the forum to be of interest, we all get it because we've all got it. I wish you well. DD

WelshSquirrel

Hi again, and thanks for such a warm welcome and for your suggestions.

Yes, I know that fairness has little to do with the way life is most of the time, but it's hard not to feel that way sometimes.

I think you're right Dreamdaisy, many people have aches and pains that are (rightly or wrongly) put down to forms of arthritis, and this might well be the reason that some have little understanding of what it's really like! Part of my job involves trying to increase understanding of depression and other mental illnesses, and it's a similar problem there, trying to explain that it's not about being a bit down or a bit 'crazy' either!

My ESP Physio tells me that my OA (and therefore my mums presumably) is caused by having slightly wonky joints - deep spinal curves, odd foot arches, arms that can't straighten up completely - which wear unevenly as a result. It would be interesting to know more about the genetics of OA and why this should suddenly turn up in a family!

Thanks again for the welcome and such understanding replies!

stickywicket

Hello from me too

There is a growing feeling among the docs that some people's OA might involve genetic predisposition but that's only a theory right now and hasn't led to any change in treatment. https://tinyurl.com/ybltdkps

It does seem unfair when you have led a sensible lifestyle but arthritis of any kind is no respecter of persons. I got RA at 15. I think our youngest 'patient' on the 'My Child' thread was 18 months. I can empathise with the lack of sympathy When I was young and looked fit people expected far more from me than I could give. The one that still scares me is being shoved quickly down bus steps when I required several minutes and grab rails. Now that I looked like a razzled old crone IO get far more sympathy although I need it less. C'est la vie :roll:

If you have any questions just put them on the Living With Arthritis forum as more people look in there. Otherwise join in anywhere

WelshSquirrel

stickywicket wrote:

I can empathise with the lack of sympathy When I was young and looked fit people expected far more from me than I could give.

Yes, I've experienced something similar - an older lady who seemed to think I was being selfish for using one of the few shallow trolleys at a local supermarket when at my age I would surely not have any problem leaning down to reach the bottom of a deeper one is one example!

Having said that, there are some lovely people out there too. I manage a team of volunteers who know about my OA. One of them rarely actually mentions it, but will quietly bring me a chair at an event we're running where I would otherwise have to stand up for a long time (probably the most painful thing of all for me), do a task for me that requires bending down, or take something heavy from my hands and carry it for me, all without making any fuss or even saying anything very often. (He's probably about 12 yrs older than I am and has a number of health issues himself). I do thank him of course, but I wonder sometimes if he realises just how much difference such small thoughtful actions make! t115006

stickywicket

We have had a few complaints on here about the thoughtless elderly who seem to think that Blue Badge bays are their preserve, and similar things. There's no excuse, young or old. My favourite beef is having to wait for a disabled loo only to find a very fit-looking employee or, worse, several very fit looking young girls with make-up bags in hand scamper out. Actually, that was only once but...

I suspect your helpful colleague is helpful precisely because he has his own health issues which enable him to understand better that all is not necessarily as it seems.