Living day to day

kking93

Hi Everyone,

I hope you are all well,

Im a 28 year old male, qualified site carpenter, trained on refurbishments and renovations. I can turn my hand to most things within a house hold.

I suffer with depression and anxiety hallucinations and when I was 2 I was diagnosed with perthies disease. What I believe perthies is; a lack of red blood cells to my hip joints made my hips decay. When I was around 6 they said it had all got better and nothing to worry about.

I am now 28, I need both hips replaced, I have osteoarthritis in both hips and I get displacer in my left and it’s sickening.

during the summer months I am relatively unfazed by my hips. I get some aches and pains but nothing drastic.

as we are getting into the colder months, I have become stiff, pain ridden and to be honest damn right depressed.

I enjoy my job, I enjoy putting in a good days work and I especially enjoy seeing the end product.

I can’t even seem to get myself out of bed at the moment.

I don’t know where to turn next. The doctors only give me Naproxen’s which quite frankly do absolutely nothing for the pain.

I’m trying CBD, I vaped it last year it worked to an extent. Iv got turmeric infused CBD tablets on the way which I want to try.

I’ve bought a book about hip pain relief, I’ve got a hip support brace coming.

This is ruining my life to be quite honest.

Is there any help or advice because I’m genuinely feeling lost.

Ellen

Hi @kking93

Welcome to the Versus Arthritis online community.

I see you had Perthes Disease as a child (also known as Legg-Calve Perthes Disease) and are now suffering long term effects and have Osteoarthritis in both hips.

For others who might not know what Perthes is it being quite rare :

https://www.ouh.nhs.uk/paediatricorthopaedics/information/conditions/perthes-disease.aspx

What isn't rare here unfortunately is Osteoarthritis of the hip so I know you will get plenty of support from our members.

This article might be of interest while you wait for people to come along and reply to your post:

https://www.versusarthritis.org/news/2020/september/ways-to-help-manage-hip-pain/

A final comment from me. Depression often goes hand in hand with long term conditions such as Arthritis. Talking to others really helps as does getting informed. You are now no longer alone kking93.

https://www.versusarthritis.org/news/2021/september/arthritis-and-depression-what-you-can-do-about-it/

Best wishes

Ellen.

kking93

Hi @Ellen

thankyou for your information, I definitely feel I’ve found a place to get support and advice after dealing with this on my own.

I realised how rare perthes disease was, due to the amount of doctors/GPS/nurses that had never heard of it. Of course I believe it would only be a paediatrician that would need to study it.

I never knew it was only 1 in 9000 children that suffered with it. That is extremely rare.

anyways thank you again.

all the best

Kearan

Jona

Hi @kking93;

My son was diagnosed with perthes at aged 3 he spent years in callipers I was told at the time it skips a generation and by the next generation no.one knows what it is my mum knew just by watching him walk he used to throw his right leg out when he walked, his orthopaedic surgeon used to say there’s nothing worse than bone pain he said it was like having toothache that you can’t seem to get rid of, so I know how you feel his father has late onset so apparently it appears to be genetic, have you thought about tens machine maybe hydrotherapy pool would help I used to take my son every week are you under the orthopaedic consultants? Maybe need a referral to pain clinic/physio your gp or orthopaedics can do that there are lots of pain relief out there you just need the support

My son is 27 now and I know it affected his confidence as I’m sure it has yours so I want to send you a big hug there is help out there start with your gp and if your surgery has a pharmacist you could speak to them I have arthritis and I use heat wraps and cold wraps to ease mine along with tens machines they don’t stop the pain but take the edge off you could also search perthes forums as your not alone 😊🤗

love Jona

kking93

Hi Jona, thank you for such kind words, I’m looking into physio therapy privately as I think the waiting list for NHS will be to long a wait for me at the moment.

Ive heard of the hydropool, haven’t really looked into it. I’ll put it on the list.

it is affecting me mentally for sure, The last week I’m in a state of fatigue. I feel useless and it’s very hard to stay positive knowing as days go on it’s not getting better.

Jona

Aw bless you we have something called supporting minds here google it and see if it’s in your area, if not start with your gp maybe he could write a letter requesting expediting your physio referral

It is really hard on a persons mental well being trying to stay positive and focussed but you really shouldn’t have to wait or not get the support you deserve your a young man and it makes me so mad just keep on fighting and stay strong 💪😊

kking93

Thank you so much Jona.

frogmorton

Hi @kking93

I am just popping by as my daughter has something similar called avascular necrosis. Blood supply cut off to the bones which results in death of the bone and then osteoarthritis too. I think Perthes can result in AVN?

Joan knows the story - she had leukaemia at 16 and the treatment - chemo and steroids at very high dose caused AVN in her left hip and right shoulder. She had a core decompression in her hip and a shoulder replacement at 18 and 19 respectively.

She is now 23 and doing ok. We know the shoulder won't last forever and she faces having it done again every 10-15 years but her shoulder had totally collapsed and they did it even at 19.

Sending you ((())) because i know just how incredibly painful AVN is.

kking93

hi @frogmorton

Oh wow, my heart goes out to your daughter, A childhood friend i went to school with had leukaemia. It really is a nasty thing no one should have to go through.

im not familiar with AVN, could you enlighten me or guide me to an article about it?

frogmorton

Hi @kking93 (or is it Kearan?)

Well the leukaemia wasn't great but she's doing ok thanks.

AVN also known as Osteonecrosis this is the support group I'm sure you could join a lot of whta they say will ring a huge bell for you I think:

https://www.avncharity.org.uk/

If you were to google avascular necrosis and perthes disease together and you'd see there is a strong link.

Like Perthes ANV is pretty rare so not easy to get information about, but there have been others here.

airwave

1/ ask for a referral to the Pain Clinic, they will investigate whether you’re a candidate for a Pain Therapy Course.

2/ our joints work at about 8psi, air at ground level is 14.7psi, as low pressure comes through (essentially bad weather, to generalise) the air pressure will change from (lowest ever recorded was 942 HH in N. Atlantic in 1942) around 950 up to 1040 as the centre passes across the country so ‘cold weather’ does affect us. See www.cloudywithachanceofpain.co.uk a research project many took part in a few years ago. It will be worth learning more about the weather, I use many different apps as each one is fed by different computer models of the weather, basically a different interpretation of what might happen. The BBC USE A French company called Meteo who rely on a European based computer model which is ok but the centre of the lows often move a few miles either way so our weather changes with it, hence I use many like www.windy.com an excellent free site. Any rate, forearmed is forewarned about change and you could dress differently, I.e. knee warmers, gloves etc, change the heating in your house or work indoors, there is an answer to everything. The air pressure is usually formatted as mercury, can’t remember the formula!

3/ Treatments for us is often a mix of coping strategy’s, painkillers, cognitive skills, heat etc etc.

good luck.

its a grin, honest!

N1gel

Speaking as someone who also enjoys using his hands I think you've got to be very careful about strategies to transfer the strain off your hips/legs.

I was given crutches 20 years ago for a dodgy knee, now I've got Osteoarthritis in my left elbow and both thumbs from using them - as a carpenter you need to look after your hands/arms as well.

I'm pro turmeric, I think it does help if you get the right stuff. I started out on some averagely priced capsules that they sent out monthly on a subscription until I realised I was paying for the hype, packaging and convenience rather than the product.

I now buy some more expensive, no frills capsules loose in a bottle, I think mixed with a pepper compound to make sure its delivered inside your system, to your joints! it seems to work..

Last time I tried CBD 30 odd years ago (not what we called it then!) it turned my feet purple, so I reckon it interfered with my circulation - won't be trying it again!

I set myself the goal of doing one practical or useful thing every day especially in winter.