Support for carers

rparsons

Hello there,

My name is Ruth and I am suffering from osteoarthritis. Back In February 2019, I felt a twinge in my hip while high up on a trimtrail. Over the coming months, I felt a constant dull ache in my groin with shooting, sharp- stabbing pain. A physio suggested I had torn my cartilage in my hip. A MRI confirmed this and a pincer impingement deformity with a cyst.

The following February, I was given a steroid injection (as a diagnosis tool). My pain management did not improve.

Due to the coronavirus, my follow up appointment was delayed until the May 2020. The surgeon put me onto the operation waiting list. This was over 8 months ago. Most days I struggle to get out of bed, dress and do basic tasks. My hip is wobbling inside the socket. My physio and doctor are very concerned about how much I have deteriorated. Hopefully, I will get another MRI soon and this will be passed onto the surgeon.

I've tried to be upbeat, but flare ups have really been getting to me and my partner down. I really feel for him because he is trying to support me the best he can. There is nothing anyone can do other than put me on more higher pain relief.

Sorry for the long message. I just wanted to know if other people are going through similar experiences. Both of us are really struggling with our mental health. It just all seems too much at the moment.

Anna

Hello@rparsons and welcome to the online community,

You've been living with osteoarthritis since February 2019 when you were diagnosed with a torn cartilage in your hip and a pincer impingement deformity with a cyst. Because of COVID your treatment has been delayed and you are struggling mentally and physically. Two years is a long time to deal with pain without any clear strategy for dealing with it, and in the current climate, I am sure that many of our members can empathise with your feelings at the moment, and can share similar experiences.

However, you should not have to live with such pain even in the current circumstances. If your medication isn’t helping, then your doctor should try something different or refer you to a pain clinic where alternative treatments can be offered. If you know the name of your consultant, perhaps you could contact them directly ( through their secretary) to see if your MRI can be speeded up.

I am sure many members of the community understand what you’re going through - we have all of us experienced arthritis pain, and our online community exists to support everyone who is struggling, so you’ve come to the right place. You could call also the Versus Arthritis helpline - they are not medically trained but can offer a listening ear and helpful advice and support. Their number is below and they’re open from 9am-8pm Monday to Friday.

https://www.versusarthritis.org/get-help/helpline/

Your partner can call them too - it can be so hard to see your loved one in pain and not be able to do anything. He might benefit from chatting with someone who understands.

I am sure members will want to come and support you, so I’ll sign off now.

Please keep in touch and let us know how you’re getting on.

Anna ( moderator)

frogmorton

Hello @rparsons Ruth,

I am so sorry you are having such a tough time. Another fit person who suddenly finds their body letting them down. The worst of it being during this pandemic means seeing someone is so much more difficult. The whole thing feels immense and never ending. Most people are 'only' worrying about not catching the virus and getting their lives back, but you are living with this.

So far my hips have never been involved in my arthritis, but time and again I have heard people's stories about groin pain and instability it sounds horrible.

I am going to link you in to a lovely member, Lilymary, who is finally on the list for a new hip, but was healthy and fit until quite recently. https://community.versusarthritis.org/discussion/53505/terrifying-waiting-lists#latest this is her most recent thread, but if you have a look at her other posts you'll see she is in a not dissimilar position to you.

I'm so glad you have reached out to talk to us lot. we can support you we understand pain and might have some practical tips to help too. You are not alone anymore.

Take care

Fruitbat1981

Good Morning @rparsons

Wow that is a lot that has happened in such a short space of time, there is so much for you both to take in and absorb.

I have had Rheumatoid Arthritis for about 9 years now. At first it took myself and my partner by surprise. All the appointments, tablets, medical terms. To be honest it freaked us both out a bit, but the one thing that people tell you to do we didn't do, which is talk to each other. Do you and your Partner speak about what you are going through. More to the point do you both understand what it is because I know my Husband didn't know what RA was.

Am I right in thinking you need another MRI before your next appointment which was meant to be May last year or is it this year? But until you have had your MRI scan you can't have your operation? Is that correct.

I have recently had an MRI scan up in London (for my heart), I know it isn't the same thing but the road I am going down is that they are still doing them but you have to continuously contacting them. Phone your consultant's secretary, ask for his email address or your consultant and email him / her, Phone up the MRI department at the hospital and see if they actually have your referral there. Mention to them that your health has deteriorated and it is also affecting your mental Health as well. You're telling them nothing that isn't true. But if you don't try and deal with it know it will get worse trust me.

I just left it, and myself and my Husband didn't talk about what is happening. Any appointments at the time I was able to go on my own so I did. What they didn't know couldn't hurt them. That was my theory anyway. How wrong could I be. To cut a long story short Hubby became my Full Time Carer so he had to come to my appointments with me so he found out more things that I was telling him. To say he wasn't happy was an understatement. However, bring you to the present and my husband still wouldn't talk to me and 2 weeks ago everything just took its toll. He had a breakdown, couldn't control his emotions and cried so much I have never seen him cry that much before. He agreed he needs to speak to someone, rung the GP and is now on antidepressants.

Has your partner signed onto the forum at all, he might be able to find some other partners or carers in the same situation (my husband for one) I am getting him signed up to the forum today.

Sorry my message to you was so long but I hope some of it helps you. If you want to talk anymore, I could always do with another friend. You can never have too many friends.

Take Care & Stay Safe

Fruitbat xx