Hi

robinhood75

Hi, I'm James I'm 37 and I have psoriatic arthritis. :shock:

I was first diagnosed with fibromyalgia around about 2003 but was later told it was psoriatic arthritis in 2005.

When I was about 13 I had massive problems with my knees, they would swell up and would get very hot to the touch. My doctors said it was just growing pains. I also had a small patch of dry skin behind my right ear which never got any worse but the shampoo I was using never did any good. That was diagnosed as psoriasis. I was not told at the time that psoriasis could lead to arthritis so after using the shampoo for many months I stopped using it. It wasn't until 2005 when I went to a rumotologist that I was told I had psoriatic arthritis. I had shown the doctor my patch of skin behind my right ear and she said it was this small patch which was no bigger than a 50 pence piece that had caused my arthritis.

I was devastated to here this and by this point I had already started to see the signs of the arthritis in my toes. They had started to go out of shape and it use to hurt if I stood for more than 10 minutes. It started to go down hill pretty quick from then and now just almost 8 years later I'm on over 820 tablets a month with injections and blood tests every two weeks. I would love to say that all this is working wonders on my arthritis but unfortunately it's not. The pain I have day in day out is starting to take it's toll on me. I can't sleep and I'm ratty and I have massive fall outs with my girlfriend and family. I try to explain to them about the pain but they just look at me as if to say it doesn't look like there is nothing wrong.

I have a son who has just turned 6 (he lives with his mum) and he loves to play football. I take him to the park every week with his ball and he always asks me to play with him. He doesn't understand my condition yet which is upsetting me too. I take him swimming which is about the only activity I can manage at the moment but even this is getting too painful to do.

At the moment I have massive problems with my fingers and my wrists are the most painful part of my body, my feet are next and may chest is after that.

Sorry about the long hello but this is the first time I have spoken out about my arthritis so I am just letting off a bit of steam. I hope to meet a few new friends on.

James

stickywicket

Hello James. It’s good to meet you and don’t worry at all about the letting off steam thing. We all do it and it’s one of the good things about the forum that we can.

I’m no expert on these things (In fact mine is RA) but I don’t actually think psoriasis leads to psoriatic arthritis. I think when you had the so-called growing pains plus psoriasis you already had PsA and should have been referred to a rheumatologist at that point.

I don’t know which meds you’re on but the ones that help to control the inflammation and the progress of the disease, which the rheumatologist prescribes, don’t necessarily do a lot for the pain. The GP can prescribe pain relief but many of us on here refer to paindullers as opposed to painkillers because…well, because that’s what they do – and don’t do :roll: If you’re not happy with your pain relief you could ask to be referred to a Pain Clinic. They have a good reputation for sorting things out.

I’m afraid people don’t understand about the pain, stiffness and general tiredness and weakness. You could try googling The Spoon Theory which is a good way of explaining things.

Swimming is good for us so, if that’s something that you and your boy can enjoy together, do keep it up. Football is not as easy. I know. I used to try with mine in the garden. I think, with a young child, you need to keep explaining how things are for you and, if you can’t do stuff with them, explain that, and why, and offer to do something else instead. I have a grandson aged 6 (tomorrow!) and he does accept how things are without really understanding it. My own two boys grew up with it from the start so it was easier for them.

I can relate to the fingers and wrists but not the chest problems. Is it with your ribs?

There are others on here with PsA and I’m sure they’ll be along soon. Nice to meet you, James.

helpatpol

Hello James and welcome to the forum. Things do sound pretty grim at the moment and this is a good place to let off steam - we all need to do that at times. Just getting replies to your posts can give you a boost and people will give you good advice. Hope your meds help soon. I had a very sore wrist and finger recently (RA) and had steroid injections which were horrid at the time but have done the trick. Best wishes. HPP

LignumVitae

Hi James

Well done for saying all that, it isn't easy talking about arthritis for the first time and it sounds like things are pretty tough for you at the mo. it's super frustrating when there's things you can't do or explain and with a six year old that must be heartbreaking at times. You might not able to play football but I bet there are loads of things you can do that he loves. Swimming is one but wandering to the playground might be another, or slurping big fat milkshakes together. I guess what I'm saying is this is another thing with arthritis we have to find new things, as irritatingly annoying and depressing that can be! Thing is, that journey can be a fun adventure in itself once you accept it.

It's often said on here that friends and family don't understand and can't understand but they can offer support once they know how. Along with the spoon theory check out 'There's a gorilla in my house' its funny and true and really helped me and those around me. My husband knows not to keep asking me how I am or what he can do but be patient and ready for plans to change!

It sounds like you feel guilty for not using that shampoo, like Sticky, I'm no expert but I think arthritis was there regardless of what you did or didn't do. I spent a while thinking I'd lived too fast and that was why I had arthritis. It wasn't, thinking that way was a waste of time and effort, it's there because it is, because of genetic factors, infections and other things medical science are yet to work out.

LV xx

dreamdaisy

Hello James, welcome to our very special group - yup, I'm a PsA-er too. It's a s*d isn't it? I had chronic eczema as a child and the arthritis began in my left knee in April 1997. It wasn't until my skin duly obliged with a bout of P nine years later that the light bulb went on (well, for the docs it did) and my label was altered from 'an inflammatory arthritis' to PsA but nothing else changed. I am now 53 and feeling very rough tonight so I won't say much else but you have found the right place for information, support and encouragement. Stick with us, mate, we'll help as much as we can. Take care. DD

barbara12

Hello James and welcome
Sorry I cant help much, but your story is very familiar...growing pains when you were a child...there are quite a few om here that can go back to there childhood..including me and I am 62...
One way we can help is by listening....just talking to people that understand some of what you are going through can be a big help, so you stay with us.
Take care x

Tubby

Hi James
I have PsA. I started with Psoriasis about 27 years ago just after a bout of Glandular Fever. The arthritis started about 18 months ago. I understand that Psoriasis can be triggered by a variety of things and about 10-15% of people with the skin problem develop the Arthritis. The Psoriasis doesn't cause the arthritis they are partners in crime!
My toes have gone a weird shape, many of my joints are pretty sore and I am on a shed load of tablets that are only having a marginal effect. Oh how I love the two weekly blood letting too. Can't say I have had pain in my chest but the rest is sadly familiar.
However, I still work full time, I walk around (only 20mins at a time is allowed by physios at the moment) and I ride my bike. I love swimming but it hurts both my ankle and knee so I don't do much. The professionals tell me I will get back to what I did before (triathlons) but I am not convinced yet. But do you know, as long as I can ride my bike for fun, swim a bit and walk around I am happy! I am going to return to horse riding soon too - there is life with this sodding disease.....
Why not take your son to a football coaching session and encourage him from the sidelines, I am sure he would love it and be able to show you his skills in the park afterwards?
Have a scream and shout on here because we understand and we all have to do it somewhere. Better here than at your family eh.
Great to meet you and steam away.
Tubby

villier

Hi James

Just want to welcome you to a great forum, pretty new here myself, don't be afraid to pitch in anytime, everyone is so helpfull and kind, look forward to seeing you around.........Marie

Loulou11

Hi James I have RA since the age of 2 (stills disease) and only found this site a few days ago. Like you I dont really talk about my RA cos the next word From the other person is either poor you or oh I've got a pain in my blah blah blah. I'm 42 now and finally starting to accept my RA but this site has helped me fit in. Well done for starting to talk about it. It really does help to talk to others in the same boat and get tips to make you life easier

Lou

Nicchick

Hi James,

That doctor who said that Psoriasis led to PsA is talking nonsense - I have PsA and only just started to get psoriasis due to taking steroids for PsA pains. I've had aches and pains for years before I finally woke up one morning and fell over. Then I finally went to the docs as before that I rarely went and never even took paracetamol! Now I'm on so much tramadol and celebrex...

I was diagnosed with PsA about 3 years ago by a rheumatologist who combined my family history with a very small patch of psoriasis (that I couldn't see) on my elbow.

After 3 years of pretty poor treatment by my previous consultant (I won't bore you here....) I now have a lovely new one who has run tests and is finally getting me on some good drugs after two DMARD fails.

I ask for the same Vampire for blood tests and we get on really well, she knows where the scar tissue is and is very careful not to bruise me. I also think it's important to have consistency somewhere in your care so that someone sees you and can comment if they think you may be on a downward slide. My vampire has been a huge support over the last year especially.

I have managed to break yet another laptop so am hi-jacking my OH's when I can so my replies and involvement on the forum right now are sporadic...normal service will be resumed soon!

There are some fantastic people on here and it's not all doom and gloom, poor me stuff...

Welcome!

Nic x

Numptydumpty

Hi James, and welcome to the forum from me too.
You will get lots of help and support here, from people who really do know what it's like.
I have RA, most of my joints are affected. I also have it in my sternum, so I can relate to your chest pain.
I hope you continue to post here, and let off as much steam as you need to.
Wishing you well,
Numpty

dreamdaisy

I remember reading somewhere years ago that about one in seven thousand have psoriasis and of those one in seven thousand would go on to develop the associated arthritis. I too had years of fortnightly bloods, I've tried all kindsa meds (I am currently on humira, meth and sulph plus some other stuff to help with the side effects of the humira and the depression that this dross brings along with it) and yes, it is a struggle at times to cope but that is where the forum comes into its own. Everyone understands and the messages that one gets can really make a difference to morale (well, they do for me when I need the support). Take care. DD

frogmorton

Hi James

lovely to meet you.

We have a bit of a male shortage on here

Sorry t hear of your PsA sounds as though you are sufferring a lot

Your son sounds a real sweetie - such a blessing and at least he keeps you going even if you can do as much as every Dad. You probably do more than some.

Hope you decide to stay and look forward to seeing you post more.

Love

Toni xxx

bubbadog

Hi James, Welcome to Arthritis Care Forum, and you are part of a special group now. We support and look out for each other and are always around for one another when one of us needs a shoulder. What you wrote moved me, especially thinking of your little boy. You did the right thing joining our little family. You can chat, moan, get angrey or just laugh and you will always have someone there to listen to you and they will never judge you for it. Welcome again to Arthritis Care forum James.