Newly diagnosed - stunned

kikkajane

Hi
I broke my back falling off my horse in September. It didn't seem to be getting better, and other bits started to hurt and seize up, so was referred to the consultant rheumatologist.
He diagnosed psoriatic arthritis. I don't have psoriasis, but my brother does

I am stunned reallyjavascript:emoticon('') - I was very active - riding, sailing and scuba diving - now I can do virtually nothing - even getting out of bed in the morning is so hard. It feels as if my life has just been switched off. I am on Tauxib (Cox2), Solpadol (lots) and prednisolone and Omeprazole for the tum- will probably be put on Methotrexate when I go back to doc in May.

Anyone else got this? Does Methotrexate work? Is there any hope of getting my life back? Help!javascript:emoticon(':?:')

livinglegend

It can be a nasty shock when you are first diagnosed and your life feels as if it has been 'switched off'. It is possible to be reasonably active but not as active as before. Everyone is different and reacts to what has been diagnosed differently. While medication can help, you should try to keep as active as possible when you are able.

Can I suggest that you have a chat to someone on the confidential helpline on 0808 800 4050 who can give you more expert advice at this stage of your illness.

Joseph 8)

frogmorton

Hi Kikajane
So very sorry
Thisis so shocking isn't it, but your life is not over. I promise. When this happened to me last summer I too was shocked. I cried all day evry day for over a week. I was upset, releived there was something wrong,depressed,in pain,frightened,alone, confused,devastated etc etc. I rang the helpline as Joseph suggests, but I also logged on here and talked to these guys.
I thought my whole world had collapsed and that I would be unable to do anything I had before. My husband has so many plans for the fiture and I would stop him
BUT here I am now - I swim 3x a week (unless I'm in real trouble), I've been abroad (TWICE!!!) and I'm doing the race for life with my tree girls in July.
Your life may not be exactly what it was, but you WILL have one and we will all be here to help you through the emotions you're feeling if we can.
Take care and do post again
Toni x

elnafinn

Hi

I am very sorry to hear that you are so down. Who would not be? To have one's life turned upside down all of a sudden is such a shock to the system and total desperation sets in. You will get help on here, even if we cannot directly help you, it makes you feel not so alone in all this.

Giving the helpline a call is an excellent idea. We have nothing but praise for them all, on here.

I am aware that some people do not have the skin complaint but are still diagnosed with psoriatic arthritis. Was the diagnosis made via xrays/mri?

There are peeps on here who do have psoriatic arthritis and hopefully they will come to your aid and help you. They will also be able to let you know about metho and if it helped them or not, as one has to always remember that we all differ and often what works for one, does nothing to help another person.

I sincerely hope you start to feel better mentally and physically soon.

Luv
Elna

debsmartin

Hi and welcome I do sympathise with you I think everyone of us have gone through the initial why me is my live as I know it over but you have found a great forum to let off steam and get loads of help. I have RA and am currently on methotrexate and for me it has really helped all my symptons and I am in a lot less pain now so I hope it works as well for you. Phoning the helpline is a must I think it really helps to talk to someone.

Take care

Debs

marie48

He diagnosed psoriatic arthritis. I don't have psoriasis, but my brother does


I am interested to know how is psoriatic arthritis diagnosed, I thought you have to suffer from this skin complaint first. How did the consultant come to his diagnosis? Am interested to know as my mother used to suffer from psoriasis and my brother does!! Thanks

skezier

Hi,
I don't know about RA as I have only got OA (they do kep saying I have possible RA but my only blood test was a neg so thats a wait and see) but its in my spine and its quite advanced. I got bits in most other joints now and I sympathise with you, cus I also used to be very active and I just wanted to say once they stabilise you its possible you may be able to fight back and get bits moving again? Maybe you could still ride a quiet horse. I know for me that took some of the fun out of it and I have trouble riding now but I have had this years.

I so hope you do get some of your old life back again, there are people who understand RA so much better than me but my bones are knackerd and they don't stop me as much as I thought they would. Don't take as you are now as how you will be once they have got your medication sorted and hang in there, your life has to change but it doesn't have to stop. I hope they get you stabalised soon. Take care.

woodbon

Hello,
Sorry you feel so down, its a big shock to take in. As the others have said, you will be able to do some of the old things. I expect you are still in shock at the moment, and need time to ajust. Love Sue

eckstardeluxe

Hi, I'm sorry to hear what's happened to you, no wonder you're shocked. I think it hits you harder the more active you are. I'm the same suddenly I've went from non stop on the go, doing marathons for charity etc and now I can't walk very far. I'd try Tramadol over the Solpadol, I like both but as my pain is in my back too I feel Tramadol + Diclofenac + Diazepam works well and Amitryptiline helps at night. Make sure they follow you up even when they discharge you to ensure you're bones heal, even if it's years. The reason for this is because of the trauma to the site, you could get OA down the line, sorry I hate saying anything that might upset you more, but how I wished someone had warned me. The good news is the people here can work wonders on bad days and the helpline as mentioned before are meant to be fantastic. Good luck

kikkajane

Hi everyone - thanks so much for your replies - it really helps to feel not quite so alone. Family are all being amazing - but I don't think they understand quite the same way as people with the same problems and I don't like to complain too much - so sorry guys I guess you are getting the double dose of self pity!

I have OA too - I had a TKR 4 years ago aged 46 - it has been brilliant!

I think one of the things I find hard is having to ask for help - I have always been one to manage stuff by myself - it is SOOO frustratingjavascript:emoticon(':x')

Anyway - I am off to do my 2 1/2 hours at work and have occy health coming to do a risk assessment on my work place, so I shall answer other questions later.
TTFN

So a huge thank you for cheering me up

lindalegs

Hi Kkkj and welcome to the forum,

Accepting you have PA is so hard because we all rebel in the beginning and want to scream 'WHY ME'. No one wants the enforced life change but it's more difficult in the beginning.

I'm sure it won't always be as bad as it is now and as others have said once your meds are storted you'll begin to get your old life back - you may have to do things differently but at this stage it's literally one day at a time.

You'll have to swallow your pride sometimes and ask for help but remember that alot of people like to help and why waste energy trying to do something that takes you an hour and someone else 5 minutes - use your energy for the important things in your life.

Don't give in to this disease but listen to your body and on bad days it'll tell you to rest more but on good days live your life to the full

Take care.

Luv Legs

jaspercat

Hi, just wanted to welcome you, if you go on Methotrexate it takes about 3 months for it to start working, but most of the other drugs are same, they normally start you on tablets, but if you have side effects that you cannot handle they may change you to injections, hope you get on ok love Jaspercatxx

jackie1955

Hello from me too

Wow, you've been through it havent you? And you will get through this too Keep a positive spirit hun, and as Linda said make the most of the good days and rest on the bad!

Jackie x

mistywillow

jackie1955 wrote:

Hello from me too

Wow, you've been through it havent you? And you will get through this too Keep a positive spirit hun, and as Linda said make the most of the good days and rest on the bad!

Jackie x

Its tough when you like the active life but your body doesnt! There will be days when you feel more able to do things especially when your meds get sorted. You may have to moderate your lifestyle but not necessarily give up all your hobbies. Everyone is different but i have had RA for approx 12 years on top of having my spine fused from shoulder level to my pelvis for different reasons, and I managed to keep riding up until a year ago, and my horse was most certainly not a quiet old thing!!
Don't throw away the jods!! and take care of yourself
Gill X

Jeannie

Hello Kikkajane,
Sorry you're having such a dreadful time. I have found that coming to terms with not being able to do things I used to do is the most difficult of everything we have to cope with. I threw a sobbing rant in public, in a cafe in a park this afternoon after a visit to the hospital ... not me at all. :oops:
Hope you get all the support you need - (you will from the guys and gals here) and that your 'copeability' will grow by the day. hug
Jeannie S

weerosie

Hello Kikkajane,

It is hard when you first find out - I used to do loads of sports...and i'm sure that once I get sorted I'll be back to my old energetic self. I think the key is to stay as positive as possible (easier said than done - I know!) I am 27, so I felt like I had been sentenced to a life of chronic pain and misery - however I believe that with the right meds, right attitude, and hopefully the right medical care - anything is possible.

Just keep your chin up - all I have to do is look on this board and see what other people are going through and how strong they are - and it makes my worries, woes and pain seem like a drop in the ocean.

I hope that you start to feel better soon.
:?

eckstardeluxe

Jeannie wrote:

Hello Kikkajane,
Sorry you're having such a dreadful time. I have found that coming to terms with not being able to do things I used to do is the most difficult of everything we have to cope with. I threw a sobbing rant in public, in a cafe in a park this afternoon after a visit to the hospital ... not me at all. :oops:
Hope you get all the support you need - (you will from the guys and gals here) and that your 'copeability' will grow by the day. hug
Jeannie S

Hi Jeannie, I really sympathised with your post. I'm not a very emotional person at all, exactly the opposite, but I have some days where it gets the better of me, usually because my kids are there witnessing it. That should be when I try to hold it together the most but I just can't sometimes. Friday my hubby was on nightshift so I had to get my baby up myself, I dropped him, luckily he landed on his feet, then I bum shuffled from the kid's room all the way through the hall, downstairs with him on my knee and eventually at the bottom of the stairs burst out cryong. My three year old is like "don't cry Mummy, don't be upset" and I just blub even worse! Then I feel better and feel stupid for getting upset. Hopefully those days will pass altogether the more I get used to this. xxx

lindalegs

eckstardeluxe wrote:

Hi Jeannie, I really sympathised with your post. I'm not a very emotional person at all, exactly the opposite, but I have some days where it gets the better of me, usually because my kids are there witnessing it. That should be when I try to hold it together the most but I just can't sometimes. Friday my hubby was on nightshift so I had to get my baby up myself, I dropped him, luckily he landed on his feet, then I bum shuffled from the kid's room all the way through the hall, downstairs with him on my knee and eventually at the bottom of the stairs burst out cryong. My three year old is like "don't cry Mummy, don't be upset" and I just blub even worse! Then I feel better and feel stupid for getting upset. Hopefully those days will pass altogether the more I get used to this. xxx

Hi Eckstardeluxe

Just to let you know I've sent a PM.

Luv Legs

mistywillow

eckstardeluxe wrote:

Jeannie wrote:

Hello Kikkajane,
Sorry you're having such a dreadful time. I have found that coming to terms with not being able to do things I used to do is the most difficult of everything we have to cope with. I threw a sobbing rant in public, in a cafe in a park this afternoon after a visit to the hospital ... not me at all. :oops:
Hope you get all the support you need - (you will from the guys and gals here) and that your 'copeability' will grow by the day. hug
Jeannie S

Hi Jeannie, I really sympathised with your post. I'm not a very emotional person at all, exactly the opposite, but I have some days where it gets the better of me, usually because my kids are there witnessing it. That should be when I try to hold it together the most but I just can't sometimes. Friday my hubby was on nightshift so I had to get my baby up myself, I dropped him, luckily he landed on his feet, then I bum shuffled from the kid's room all the way through the hall, downstairs with him on my knee and eventually at the bottom of the stairs burst out cryong. My three year old is like "don't cry Mummy, don't be upset" and I just blub even worse! Then I feel better and feel stupid for getting upset. Hopefully those days will pass altogether the more I get used to this. xxx

Hi eckstardeluxe
I just can not imagine how hard it must be for you to be looking after little ones when you are in so much pain!
Don't beat yourself up for getting upset, you sound like you are doing an amazing job! 8) Gill x