NEW MEMBER IN NEED OF HELP
scorpio
Member Posts: 159
On the advice of Tillyx i am reposting on here:
Hello, this is my very 1st post (4th or 5th now...LOL) and i have joined here in the hope of meeting likewise sufferers and any help, which i so desperately need as i am on the brink of hell..........
i am 32 years old and have a condition called polyarticular psoriatic arthritis, which basically means i have arthritis everywhere (barring my feet) and have psoriasis everywhere.......to top it all off i have just found out that i also have gout, which is crippling me, as it is in both feet - i am a car salesman, so this is forcing me ever closer to forced retirement..............
i used to take diclofenec (3 times a day), codeine phosphate (3 times a day) and paracetamol (3 times a day), which worked, until the gout came along - now i am screwed (so to speak) and feel like i am walking on broken bones. I also tried methotrexate for a while, but as i have a fatty liver they took me off it. At the moment i am trying a cocktailof drugs to get me bck to where i was, but nothing is working
So, other than that i have not helped myself - i like a drink, i eat fatty foods and i love bbq's, meaning i was a prime target for gout...................for a week or so, since finding out the glorious news, i have cut out the red meat, alcohol, fatty foods etc etc etc....................................
so - - - - WHAT NOW, it is getting worse and i spend all day every day walking - i claim no benefits, and would'nt know where to start to be honest - but, more imprtantly, am i doomed to an early wheelchair or is there hope
I am so sorry for depressing you all on my 1st post, but i have put a brave face on my conditions for 4 or 5 years now, and today has been the turning point
ANY HELP, ADVICE, FRIENDLY CHAT APPRECIATED
highest regards, Chris......p.s i am not normally this intense (i promise
Hello, this is my very 1st post (4th or 5th now...LOL) and i have joined here in the hope of meeting likewise sufferers and any help, which i so desperately need as i am on the brink of hell..........
i am 32 years old and have a condition called polyarticular psoriatic arthritis, which basically means i have arthritis everywhere (barring my feet) and have psoriasis everywhere.......to top it all off i have just found out that i also have gout, which is crippling me, as it is in both feet - i am a car salesman, so this is forcing me ever closer to forced retirement..............
i used to take diclofenec (3 times a day), codeine phosphate (3 times a day) and paracetamol (3 times a day), which worked, until the gout came along - now i am screwed (so to speak) and feel like i am walking on broken bones. I also tried methotrexate for a while, but as i have a fatty liver they took me off it. At the moment i am trying a cocktailof drugs to get me bck to where i was, but nothing is working
So, other than that i have not helped myself - i like a drink, i eat fatty foods and i love bbq's, meaning i was a prime target for gout...................for a week or so, since finding out the glorious news, i have cut out the red meat, alcohol, fatty foods etc etc etc....................................
so - - - - WHAT NOW, it is getting worse and i spend all day every day walking - i claim no benefits, and would'nt know where to start to be honest - but, more imprtantly, am i doomed to an early wheelchair or is there hope
I am so sorry for depressing you all on my 1st post, but i have put a brave face on my conditions for 4 or 5 years now, and today has been the turning point
ANY HELP, ADVICE, FRIENDLY CHAT APPRECIATED
highest regards, Chris......p.s i am not normally this intense (i promise
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Comments
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Hi Chris, sorry that you've had to find us but this is the best place ever for support...........I'm not able to help practically, there's lots with PsA here and I'm sure one of them will be along soon.
There have been a couple of threads on gout recently.....I'll see if I can find them and bump them up for you to read.
Annie0 -
thanks Annie, i hope someone can help me, i am struggling badly...............the arthritis screws with my hands, fingers, knees, elbows, neck, shoulder, hips etc etc etc
my wife thinks i should be up and about like a crazed greyhound, i have a mortgage and a very very active 4 year old
i just feel down and cannot work through the pain, my job as a car salesman is killing me - people at work poke fun all day (which i enjoy and welcome as it alleviates the seriousness of the situation)
and i cannot believe how painful gout is
life is fun0 -
Hi Cris, Im sorry to read that your suffering so much.
I havent got your conditions but have OA & many of Arthrs friends.
Im suffering with my feet too,I have Plantar Fasciitis (policemans heel) i have put soft insoles into my shoes to try to take the pressure off the soles of my feet when im walking, That might help you a little. I also walk with a crutche(sometimes two but they slow me down more) Ive brought soft slippers with good soles & backs in them too. Have you tried any walking aids? Different shoes or insoles?
Im sure someone will come along with your condition & offer better help for you,as i dont know much about it sorry.
If you feel like a good laugh join us in chitchat, youve found a great site & they have pulled me up many a time here.
When i first joined i was a right mess & this site & the people on it help me to understand my conditions & advice me on lots of things.
I hope you find it as helpful as i have over the 2 n half years that ive been here.
debs0 -
Hi Chris,
I am sorry to read your suffering and I wonder if you rang the helpline and talked to hem it might help? The number is at the to of the page.
I have p and so agree with you its horrible and like you its gone after the wrists, elbows shoulder and neck. It really does kick off pain and well I agree you also would need to see a rumo again.
With your wife sometimes people close can't see cus they are too upset to see how badly things are effecting the person they love. If you do talk to the helpline you can ask them to send you some booklets about it (they are also available for download if you go to the about arthritis bit up the top). I wonder if she read them if that would help?
I don't know a thing about gout I am afraid but I think it also comes under the rumo so Chris please get your gp to refer you. I do hope you get some relief fro it and nice to meet you. Cris x0 -
Hi Chris
I'm sorry i'm not sure I can help directly as I have Rheumatoid Arthritis (RA) but I am 31 , work a tough job & have toddler so understand how hard it can be.
It may be a long road but you can get to a place where you can at least cope and along the way you will probably have a few set backs, just try not to let these get you down.
My suggestion is to first start with your dr.'s....make sure they explain everything you want to know, ask questions even if you think they are only small things. I have always found knowledge makes me feel like i'm more in control especially since the RA makes me feel less like i'm in control. Push to try and get meds/ advice sorted out so that you can at least get through the day. It may take a while to sort out but once you get there it will help.
Try to focus on the positives in your life they help with the tough days, don't write yourself off, you have a hell of a lot of life to get on with from here, this is just a blip and you will get past it. life might not be the same but that doesn't mean you have to give up everything.
Sit down and thing of the things you are finding difficult and then try to look at alternative ways of doing them. You might want to consider counselling alongside your medical treatment. I found that talking it through was really helpful as it was a big change in my life and I didn't want to burden my family and friends. i only went a couple of times whilst I was struggling to handle it all put it helped to put things in perspective.
Sorry I've rambled on I hope that there is something useful in there. If you ever need to talk please feel free to private message me.
Chrissie0 -
Hi Chris,
Welcome to the forum. My friends husband has gout and his dr. put him on medication which has really helped. You must get yourself refered to Rhumy again as some meds can interact with each other.
Sorry you are in so much pain, there is nothing funny about foot pain.
Hope things get sorted soon.
Best wishes, Ix0 -
Hey Chris
A friendly chat you will get form me
useless advice probably though....
First of all I read your post and feel so bad for you - blimey mate they chucked the lot at you didnt they?
This is so unfair
BUT - it is not your fault...how many people do you know who like barbies and adrink? Loads I bet - I do myself.
We might not have the answer for you here tonight but we will support you while you work towards getting there.
Tilly is lovely and has been a real asset to this forum already and i expect you will be too.
Hang on in there and we will try to help if we can.
Good to meet you
Love
Toni xx0 -
Hi Chris, I'm sorry you are having such a hard time at present. My Dad suffers with psorias (sp?) and even without the arthritis part he has hard time with it. I have OA.
Just wanted to say I take Arcoxia and I remember a GP once saying to me it was excellent as both an anti-inflammatory and for pain relief especially for gout ... Might be worth asking to switch from diclofenic and giving it a try. The dose for gout is quite high for a limited amount of time - just to get it under control.
SpeedalongI have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.0 -
Hi chris
Sorry I cant help with your questions, but you stay with us, and you will get all the support we can give, and make new friends.
I am not being much help i know , but others that have gone through this will.
Like cris has said please phone the helpline, they are brilliant.
Lots of hugs to you (((((((()))))))
Barbara.Love
Barbara0 -
I'm so sorry to hear about your diagnosis. I'm fairly new to the site and was only diagnosed with RA on Wednesday. I'm facing some drastic changes to my life but fortunately I'm a housewife so not employed as such but still unable to complete tasks at home much of the time.
I hope things improve for you.
Chrissie x0 -
Hi Chris
Annie has bumped up a thread on the Chat to our Helpline Team zone for you. There is a website address mentioned, you may like to have a look at.
I have also bumped up a couple of old threads that mention Gout for you on this Zone.
Luv
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Hi there and welcome to the forum
I am sorry to hear you are having such a rough time of it at the moment - just as well you came to the right place.
The forum has been a huge help to me as I have sought advice from others and have come to recognise I am not alone with the battle of my body versus arthur.
I a 33 and have a different form of arthur to you, however my mother has had terrible gout and one of the things that really helped her, other than pain killers, was steroids- I wonder if they have been offered to you?
This is no doubt a really trying time for you right now both physically and emotionally and I am sure you could do with the support of those you are close to. As others have said do try and get the booklets on arthritis - showing them to a couple of key people in my life helped them truly understand what was going on and that it really was very real and very painful.
On the job front, again as others have said, you are likely to have to have a sit down and think about different ways you are going to have to tackle your tasks. Your employer should be flexible to your needs, hopefully they won't need reminding.
Have a good look around the forum, there should be quite a few threads that you will find useful and importantly, don't become a stranger - let us know how you are getting on and join in when you can.
Take care and keep your chin up
Arna x0 -
Hi Chris,
So sorry you are having such a rough time .
Your post hit a nerve with me , I was divorced a few years ago because my husband could no longer cope with me being ill. I was not a moaner but he said that he could see the pain in my face and it was affecting him negatively. Talk to your wife about how this pain is affecting you , it is hard for pain free people to understand how devastating it can be to live with.
Have you thought of asking to be refered to a pain clinic, they are wonderful at sorting difficult pain , I have patches which I wear all the time they really help me get on with life and I am able to do a part time job now.
I am sure there will be loads of good advice and support for you here .
regards Fay0 -
Oh you poor ****. It's god-awful and I have some understanding of how you feel. I have the psoriatic arthritis minus a substantial part of the psoriasis - I have had it once, only on the palms of my hands and the soles of my feet. The arthritis affects my toes, ankles, knees, sacro-iliac joints, and when it flares (as it is now) my hands, wrists, shoulders and jaw. I have learned to be thankful that it's not in my hips or spine, but I suspect, after fourteen years of it, it won't be long.
What meds are you on? Pain killers and anti inflammatories aren't enough, I suspect you need something stronger. Are you under the care of a rheumatologist? If not, get referred by your GP.
The Husband has occasional bouts of gout and it ain't funny. It seems to make people laugh but I have no idea why. I suppose it's because it's connected to old men sitting by a fire, wrapped up in shawls and stuff, and bawling for more port. RIGHT: have been to the local curry house and imbibed liberally there and at home: new to this computer stuff and the little screen they give you to type on is jumping up and down beyond all reaon. Will stop here, read your post, and come back. DreamdaisyHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Liking the odd (!) drink and BBQ doesn't condemn you to this. It isn't your fault, you are not responsible for this. Arthritis has a strong genetic component and don't believe for one moment all the crap the docs tell you. I have experienced intense pain, given up drinking, not lost weight and the pain remained. I have stopped eating red meat and, guess what, the pain remains. I have eaten loads of celery and beetroot (both anti-inflammatory if you live in fairy world), I have done everything they suggest and nothing changes. You have to find what works for you, and that, oh that is a very long journey. (Which means that not eating red meat and eating loads of celery etc might just be your thing.) (Back to your post for another read.)Have you got the despatches? No, I always walk like this. Eddie Braben0
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dreamdaisy wrote:Oh you poor ****. It's god-awful and I have some understanding of how you feel. I have the psoriatic arthritis minus a substantial part of the psoriasis - I have had it once, only on the palms of my hands and the soles of my feet. The arthritis affects my toes, ankles, knees, sacro-iliac joints, and when it flares (as it is now) my hands, wrists, shoulders and jaw. I have learned to be thankful that it's not in my hips or spine, but I suspect, after fourteen years of it, it won't be long.
What meds are you on? Pain killers and anti inflammatories aren't enough, I suspect you need something stronger. Are you under the care of a rheumatologist? If not, get referred by your GP.
The Husband has occasional bouts of gout and it ain't funny. It seems to make people laugh but I have no idea why. I suppose it's because it's connected to old men sitting by a fire, wrapped up in shawls and stuff, and bawling for more port. RIGHT: have been to the local curry house and imbibed liberally there and at home: new to this computer stuff and the little screen they give you to type on is jumping up and down beyond all reaon. Will stop here, read your post, and come back. Dreamdaisy
debs0 -
(Thanks Minky, I will pay attention to that but a little later.)
This is a big thing for your wife to come to terms with - in some ways even bigger than for you. I think it's worse for those on the outside because, no matter how much they love you, THEY DO NOT HAVE A CLUE about what it's like. This is the best thing about these forums: we've been there, done that, got the T shirt, been there again, done it again, got another bloody T shirt . . you get my drift. I am married, no children, so I can't really help on the practical side but: OK, let's be realistic. I think that work will become increasingly more difficult for you (it's already tough enough by the sound of it) so some sort of alternative has to be considered. Benefits are available to you - best to ring you local social services for info. If you are struggling with mobility then sort out something to help - yes, I know, it's a blow to your pride but life rarely works out the way we want: screen jumping, back for a read in case I've gone off track (really should do this when completely sober.) DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
You are comparatively young for this: I started at 38, wasn't diagnosed until aged 47, but it still sucks. I have been at the so-called cutting edge of treatments - I've had three goes at anti TNF medicines and they haven't sodding worked (not cutting-edge, sodding blunt is my interpretation) so, at the moment, I'm down in that hole with you. They have worked for others, however, and one of the most successful for sufferers such as yourself has been an anti TNF called Infliximab. This has had great success in treating both psoriasis and its associated arthritis. You didn't mention this as one of your meds - if you're not seeing a rheumatologist please get referred and ask about it. I'm not sure about it in connection with gout but that's an arthritic condition too. Read thro the various (and many) threads about the meds people take: disasters for some are miracle workers for others. Jumping again (yes, Minky, I know ican find the answer, and I will!) DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Your life has changed, beyond doubt. There's no point in complaining about fairness (an absolutely ridiculous notion) or asking why me (the only answer is why not?). You have humour and, believe you and me, that will get you thro everything. I know now that there is nothing left for me to try, treatment wise. None of the best drugs have worked - I tried, they failed, not my problem. I react best best to oral steroids - not an ideal treatment according to the docs but what do they know? I was told to give up smoking, in order to reduce my blood pressure. I did, last September, and it has steadily risen. Whoopy-doo. I've been told to lose weight, to ease the pressure on my joints and therefore reduce pain. I lost three stone, pain didn't alter. Whoopy-doo. It is all about trial-and-error now. Be willing to try, be willing to fail, (bearing in mind that the failure is not your fault). This is the start of a long road, I'd be lying if I said otherwise, but we're all here to support and encourage you, to listen to the rants and venting of exasperation, jubilation and desperation. That's what we do, because we're there with you.
It's late, I'm tired and I hope that I have said something, somewhere, that resonates and/or makes sense. Keep in touch with us. Dreamdaisy.Have you got the despatches? No, I always walk like this. Eddie Braben0 -
Ooooh, bloody hell, went on a bit, didn't I? Apologies. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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dreamdaisy wrote:new to this computer stuff and the little screen they give you to type on is jumping up and down beyond all reaon. Will stop here, read your post, and come back. Dreamdaisy
reply from Rehab :: Chris, its a compatibility problem
Go to tools above, click and scroll down till you see compatibilty view settings click on that
A compatibility view settings box will appear with arthritis care in the add this website box, click add and close
That should sort the problem out.
Everyone so far says that it cures the jumping.
Joseph 8)Joseph0 -
Thanks Joseph,I would have looked for it tomorrow but too tired tonight. It stopped my problem out right.
debs0 -
dreamdaisy wrote:Ooooh, bloody hell, went on a bit, didn't I? Apologies. DD
Daisy
That curry got you going didnt it?!!!!!
Well i really hope Scorpio feels not-alone now after all these replies
LOve
Toni xx0 -
hello and welcome , now you have fount us you will never be alone , every body is different but we all sail together xxxxxI know i am a lady ,all life is a journey xx MAY xx0
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Hi Chris
welcome to the forum from met too but sorry it's in these circumstances. :roll:
It's understandable you feel 'intense' with trying to deal with this disease...and the impact it is having.
I have PsA in most joints with some playing the lead role while others wait their turn to 'turn up the volume'. I've had fusions, excisions and now about to have a wrist replacement; I have more joint replacement surgery on the horizon after that....so be it!
This disease is life changing, yes, but it is not life ending...
There are, as others have already said, treatments that you have not yet had access to....the anti tnfs are the obvious ones given your history and as you have tried but been 'unsuccessful' on DMARDS it would seem probable that you would meet the criteria for starting on an anti tnf.
Speak to your rheummy as soon as you can as the sooner you start on them the quicker you will hopefully see a positive outcome not just for the PsA but the psoriasis too. At the moment there are 3 available for PsA peeps. Etanercept, Infliximab and Adalimumab; there is also a new one that has not yet been 'approved' for PsA ...certolizumab (but hopefully will in the near future).
Of course there are no guarantees of effectiveness as we are all different...so what works for one may not help another. Our bodies are such complicated machines and our auto immune systems with PsA so over-active that it is trial and error ..but...there are always newer treatments on the horizon!
I read in a Lancet report about another drug...ustekinumab...which early research says is proving effective for PsA. It is not available for PsA but IS available in the UK for treating people with long term and widespread psoriasis...so may be you could speak to rheummy (or your dermatologist) about that one too.
Re work.... could I suggest you look at the info leaflet on this website 'Work and Independence' ]
http://www.arthritiscare.org.uk/PublicationsandResources/Workindependence
or you could post a question on the 'Working Matters' Forum; there are many of us there too who will offer advice and support.
Please also consider applying for DLA....you can read more about that on the government website
http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/index.htm
and Citizens Advice Bureaux can help with the application.
good luck!
ris x0
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