Chronic pain and help with family and friends needed

Lily0

Hi, long story short I haven't been diagnosed with arthritis however I do have similar joint conditions.

I was born with DDH (Developmental Dysplasia of the Hip) in my right hip, however it wasn't diagnosed till I started walking, so the normal treatment (pelvic harness). didn't work. I had 3 surgeries before the age of 4 however none worked and after the 3rd I was diagnosed with avascular necrosis. It didn't affect too much as a young child I just couldn't take part in sports.

When I was 10 I was supposed to get another surgery but I was ill every time we got an operation date so in the end I didn't get the surgery. I have constant chronic pain and I've been on prescription pain killers for a year, I had a scan a few months ago and I was told that I had a severe dislocation and will need surgery soon, they hope to do an osteotomy however I am waiting on more scans as if the joint is too damaged or there is arthritis (which I think is likely) the only remaining option will likely be a hip replacement.

But everything is taking a really long time because of covid. Ive always found it quite difficult socially as most of friends/family don't understand and sometimes think im making it up. So I was just looking for some advice on dealing with pain and dealing with potentially have arthritis as well as coping with other people judgements/opinions. Or just hear from anyone who has had any experience of being young with chronic pain. My mental health is not doing very well because of this.

anneb82

Hi @Lily0

Welcome to the online community and thank you for sharing your story with us.

From what you have shared, I can see that you have a long history of medical complaints and chronic pain. You are awaiting more scans to see whether or not you will need a hip replacement, but due to Covid, everything is taking so much longer which means you have constant chronic pain. You find it difficult to explain to friends and family what exactly you feel and go through, and often feel like people think you are not being honest or are just making it up.

Below I have attached a few links that I think you could find of benefit to your situation. The first explains all about hip replacement surgery and what it involves. The second is specifically for younger people and how dealing with something like a chronic condition has on your emotions. The final link is in relation to your chronic pain and ways that you can manage this.

https://www.versusarthritis.org/about-arthritis/treatments/surgery/hip-replacement-surgery/

https://www.versusarthritis.org/about-arthritis/young-people/living-with-arthritis/

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

I really hope these are of help to you and that they provide you with useful information and comfort.

Please feel free to keep posting, ask questions and getting involved if you want to. We are a friendly bunch here and there is always someone around to help if needed.

Take care

Anne (mod)

frogmorton

Hi @Lily0

Nice to meet you. I hope you find the forum as supportive as I have over the years.

Your situation does sound rather unique, but it's not dissimilar to my own experience with my daughter.

Just after her 16th birthday she was diagnosed with leukaemia and was treated with chemo and superstrong steroids. The result was avascular necrosis. Femoral head Left, thigh bone and right shoulder. She was still on chemo at the time so we had to wait for that to stop before anything other than pain relief could be done to help. We used warm wheatbags to ease the pain a little and minimise the use of her pain meds

AVN is pretty unusual in young people it's more often older men who get it so you two are a rarity.

She had core decompression of her hip (at 18) which so far has been successful I suspect yours is maybe more advanced? Unfortunately her shoulder had completely collapsed so she had to have her shoulder replaced.

Now as you can imagine we were all really worried at the prospect of this. 'They' (the experts) tell us that joint replacements have a lifespan maybe 10 years. The thought of my daughter having to have repeated surgery for the rest of her life was terrifying.

But she couldn't go on in the agony she was in. I heard somewhere that AVN is one of the most excruciating conditions out there so we decided to go ahead. 3 days after the surgery she was home and (ignoring the post operative pain) the AVN agony had just gone! She worked hard at her physio exercises and has full range of movement now. She is 22 and so far no problems with her new joint at all. Since she recovered her life has pretty well returned to normal she is living her life as I would want her to - without me!

It was tough for her having cancer first then this and to be honest some friends really didn't understand that she really was suffering and not able to go here there and everywhere with them. One or two I even think were jealous of the attention she was getting.

What it does do is help you to see which friends are genuine and which are not.

There are younger people who use this forum, but pain is pain and all of us here understand it and will do our best to help.

Take care Lily

Jona

Hi Lily,

Just wanted to say hi sending big gentle hugs I think you are so brave to have and are still going through all you have try to stay strong I know it’s not easy and until people are in constant pain themselves they shouldn’t pass any judgement

Love Jona 😊💪😉

Lily0

Hi @anneb82 thank you for providing this information, this is very helpful, I am looking forward to being part of the online community.

Thanks, Lily x

Bic1982

Hi @Lily0

I just thought Id say hello. I dont actually know anything about your particular condition, however I do know something about dealing with pain at a young age.

I was first diagnosed with JIA (juvenile rheumatoid arthritis) when I was just 2 years old and basically grew up in and out of hospital. It was especially difficult when I was a teenager as I struggled with feeling like I was missing out. I often wished that I was like my friends or my brother. I was even desperate to join in with P.E!

I struggled with school because I often missed days regularly due to hospital appointments, or just because I was in so much pain I couldnt move. I was lucky that my friends were all pretty excepting but it could be still difficult at times when they were off doing something that I was physically able to do.

Pain is difficult to deal with at age, but I think when you go through it at a young age, it makes you stronger. I like to think that everything I was put through, and still suffer with, helped build my character.

Anyway, just wanted you to know that you arent alone and if you have any questions or if you just want to vent then Im around.

Take care

Bic x