46 and recently found out I have osteoarthritis

CraftyDeb

Hi all

I am new to all this and was recently told I have osteoarthritis and soft tissue rheumatism.

After a fews weeks of trying different things my doc has put me on omeprazol, naproxen, paracetamol and codeine.

I am finding it hard for people to understand the pain I am in because I look fine. Just looking for advice, tips etc.

My daughter is upset because I can't do all the things she wants me to do and I don't know how to respond to her being upset by this.

Thanks for reading.

desjumeaux

I am 57 and recently been diagnosed with OA.

I felt terrible, thought I would never be able to do anything again. However, I am on strong pain killers and they now seem to be working (it does take time for the tablets to work, in my case about 6 weeks).

I know how you feel about people not understanding your pain, I was the same it just takes time. I was lucky in that my kids are grown up. Sadly my mother has alzheimers and she doesn't understand, and I still have to take her shopping etc. to keep her routine going.

I am now able to do a lot more, and feeling more positive about things. If I do a bit too much I know it.

This forum and the Arthritis Care website offers a lot of help.

Good luck hope your daughter can understand. Have you tried alternative activities, perhaps swimming together may do you good as well.

MrDJ

hi and welcome to the forum.

quite a lot of us have printed this letter out for friends and family to help them understand what you are going through.
might be worth a try > http://www.psoriasis-help.org.uk/forum/psoriatic-arthritis-discussion-board-the-clinic/open-letter-to-family-and-friends/

hope it helps

barking1

Hi and welcome i am 42 and have oa in my hips and lumber spine i am still addapting to the pain but reading the threads on here inspires me it is difficult for people to understand ,maybe if your daughter looks on the forum she will become more aware of your problems xx Jane

frogmorton

Hi Deb

I am so sorry about your diagnosis but you have found the right place for help and support and to feel less alone with it all.

May l ask how old your daughter is? I have 3 and they are fantastic at supporting me - not sure they were at first though

Keep talking to us - it really does help

Love

Toni xxx

desjumeaux

I agree with Barking, I sent links to my children who are all grown up, and they are much better informed now and understand how to deal with it.

It also put their minds at ease that it was not as bad as they thought it was.

If your daughter is too young for this then it will be a little more difficult.

Good luck
xxx

pinkbritishstars

thinking of you craftydeb.

I agree with the others about sending your daughter a link to this website.

xx

Heather65

hi deb and welcom im 47 and have cv in my neck like you i otherwise look perfectly healthy people cant see my pain and see how hard it is my husband tries to understand when he can he takes me to appointments which is a great support and this forum is a life saver my kids understand but it is hard to make other people understand

Folara

Heya Deb and welcome to the forum.

You will find lots of like minded people on here who also struggle everyday with the pain we have to live with.

It is really hard for other people to grasp just how hard it is as we outwardly don't look any different. It might help if you sit down with your friends and family and explain how the illness affects you and that some days you can't do anything much etc.

You will get lots of support here so you won't ever have to feel alone.

Fols x

dreamdaisy

Hello, it's lovely to meet you but I am sorry you have had to find us. I'm lucky in that I have crutches and four-wheeled rollator so everyone can see straight away that something's up but for those without visible aids understanding from others is a problem. I usually explain the pain as a toothache that never goes away, but even that falls on stony ground as those without constant pain really cannot envisage it never going. In addition to the pain there is also the tiredness levels (those without don't appreciate how tiring arthritis can be) and that is another thing that is hard to explain.

Where are you affected and how old is your daughter? She may be too young to fully grasp what is happening, and that won't be easy to explain. One thing to googbingaskjeeves is The Spoon Theory, that is a very visual explanation of the problems we face, another one is about learning to live with your gorilla - I can't remember the details of that one, sorry!

I began my arthritis aged 37, I am now 53 and my life is nothing like what I want (or expected) but hey-ho, this is the only one I have and I have to make the best of it. You will find your own ways to cope and manage but that takes time. Rest assured, though, we will be here to help, support and listen to anything you might want to say - we know what it is like and how tough it can be. I wish you well. DD

Heather65

the description about the toothache is so spot on thats how i described it to the consultant at the hospital and people i know but i think they still dont quite get it its like yeah ok take some tablets but its more than that so being able to come on here is great

freesia

Hi Deb

I'm early 40's and have OA - I too have work colleagues who have NO understanding of the condition and what pain you can be in at times, just because your face looks ok, they think your whole body is ok... I'm actually screaming with pain inside most of the time...

I don't want sympathy or special treatment - like you, just a little understanding would be nice.....xx

CraftyDeb

Thank you everyone for your replies, it's so nice to have so many helpful people on here who understand.

Sorry if I don't reply individually, I am not sure how to do that yet! But in answer to your questions, my daughter is 12 years old, my son is 20. I have OA in my knees, hips, elbows both thumbs and some fingers and in my right shoulder and (unconfirmed) neck. It all started when I fell down the stairs at home in 2009 and I tore some tendons in my arms and ended out with both sides having tennis elbow. At the time I had not hurt myself from the waist down.

The consultant just said its caused by trauma from falling down the stairs on my elbows and hands and my neck and shoulder maybe from a car crash I had in 2001. But he couldn't answer why I have it in my knees and hips.

The letter one of you posted is exactly how I feel I just haven't been able to put it into words all at once. I have printed this off and I think maybe I will show this to my daughter as that seems to be more on her level and she wants to go bowling and rollerskating so the bit in there about the hot chocolate which my daughter and I love is brilliant.

Once again thank you all sooo much, keep in touch. Debbie x