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Date: 09.06.2010
From: Dan

Subject: Just starting to acknowledge my arthritis

Hi all.

I was diagnosed with Psoriatic Arthritis a couple of years ago now, but until now have not really taken it very seriously, even though i live with pain everyday. I began treatment on Methatrexate but took myself off because i was concerned for the effects on my liver as i drink quite a large amount of alcohol(but do not consider myself an alcoholic). Until now i have not really been willing to change my habits. I haven't however yet began this change.

Soon afer stopping the treatment i became ill with Hepatitis E, causing my liver to function at a dangerous level. I soon got over this but wasnt able to carry on with any treatment until such time that the liver doctors allowed it. But i brushed it under he carpet and havent done anything about it since, until yesterday where i went back to my gp to begin the process again. I have left it too long and am suffering the consequences. my hands and feet are my problem areas.

Im a 34 year old man that works 12 hour shifts on computers. My right thumb(i am right handed) has swollen to double(if not more than) its normal size. My other fingers and toes are in a various state of inflammation. It is becoming increasing difficult to cope with my job. Many other simple daily tasks are becoming a struggle too.

I do apologise for the length of this, i guess im just trying to vent a bit as a part of the acknowledgement process. Its worth the pain my fingers are giving me from typing.

A major concern right now is the fact that i am experiencing quite sever pain and discomfort(though i bet many people here suffer more greatly than i do) yet am so far away from a treatment that will begin to improve it. As i said, i just went to my gp yesterday, i dont even have an appointment for my first consultation yet. That could be 3 months away on the NHS.

I want to research the possibility of private treatment. I dont know i can afford this right now though, i have no idea on the cost. Any advice on this would be appreciated.

I also want to research any natural and home remedies. I currently have tried none. I will start with cod liver oil as thats the obvious one. As for the rest, i dont yet know a thing. Im hoping to learn a lot from the people here. I know i have to do something to get me through the time before any medical treatment might begin to take effect.

I feel rather self-indulgent speaking about myself like this! Its not really in my nature to harp on about my problems. I better draw this to a close for now. Thanks to anyone that took their time to read it.
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Date: 10.06.2010
From: maz.aust

Subject: Re: Just starting to acknowledge my arthritis

Hi Dan,

Sorry to hear you need any advice but glad you have found this website. I am sure there are people here who will be able to tell you their own stories & what treatment paths they have chosen to take.

For me, I started watching my diet by giving up gluten/dairy/sugar & some nightshade vegies then chose AP therapy as my treatment path. I started on AP in June 08 & as of late last year have been asymptomatic .. I guess that's a plus for me.

Good luck on your journey,
Maz
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Date: 10.06.2010
From: Lynn B

Subject: Re: Just starting to acknowledge my arthritis

Hi Dan, sounds like you have been through the mill lately. I also have PA had it for 14yrs but only diagnosed properly in october last year. I think it took a long time for me to accept there was something taking over my life, and was dictating to me what i could and couldnt do, when i could and couldnt do it. Dan have you tried ice packs, and heat pads for the swelling. And get your GP to prescribe some good pain killers and anti inflamataries (soz cant spell that).I think you need something now, I think if you let your GP know how bad you feel and see if you can get a Rheumy appointment asap. I am sure some off the guys on here can help a little more.Take care. And let us know how you get on.
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Date: 10.06.2010
From: Dan

Subject: Re: Just starting to acknowledge my arthritis

Maz, thanks for your reply. What is AP?

I thought i read yesteday that diet wasnt either a cause or a cure to arthritis. I guess i might well have understood this wrong, so better find out more.

Lynn, my doctor wont prescribe me anything until the results of my blood test are through(going for that today). My lifestyle plus the Hepatitis has given him concern about the state of my liver. We shall see what happens.

Am very interested in the ice and heat packs suggestion. Do i simply buy these from a chemist or a sports shop? Or can i make my own?

Am glad i looked into online forums and found this site. Its good to know there are real people with real advice out there. You dont necessarily get that from the people that are the supposed experts. I have found that the time you get with them is way too short to really cover all the angles.
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Date: 10.06.2010
From: louloubelle

Subject: Re: Just starting to acknowledge my arthritis

hey dan

I'm glad to hear you're finally acknowledging your problems.

I've also got PA and was diagnosed at the age of 9 (I'm now 30). I suppose having it from such a young age meant I have been able to learn to live with it a lot easier. Like you, I stopped methotrexate so I could enjoy drinking (weekend binge drinking through my late teens and early 20s). It got to a point though where my social life was less important and I returned to mtx, cutting out all alcohol and just treating by body a bit better.

With regards to your thumbs it is worth being asked to be referred to an occupatoinal therapist as soon as you can. I work in an office and do a lot of typing and they provided me with thumb splints to wear; they don't restrict me so much that I can't use the keyboard properly but do restrict the amount of movement in the thumbs. My bosses have also provided me with a wavy split keyboard which stops me from having to move my thumbs and removes the rsa element of the PA.


As for the heat / ice packs - frozen peas are the best (but wrap the bag in a tea towel so as not to freezer burn your skin. I've found wheat bags that you put in the microwave to be the best for applying heat - you can get them as an alternative to a hot water bottle.

With regards to treatment, I'm all for traditional medication - it's been well tested and is specific to the condition and does work, eventually although it often means trying a few duds before getting the one that works for you.

Good luck Dan
Lou x
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Date: 10.06.2010
From: Teresa

Subject: Re: Just starting to acknowledge my arthritis

Hi Dan and all! I also have PA. I had alot of pain and swelling for about 2 years before I finally accepted that things could not continue the way they were and admitted to my GP just how bad things really were. Until then I had only been telling him half the story because I was in the process of nurse training and was so concerned that if anyone found out the true extent of my joint pain then nobody would employ me! Anyway it got to the stage where I could not hide it anymore as the pain was taking over my life and my hands looked like someone had replaced them with blown up rubber gloves!
Since then I have seen a Rheumatologist who has been great. He explained everything to me and I am taking Sulfasalazine. Unfortunatly after getting to the maximum dose of Sulfasalazine at the weekend I had an allergic reaction and so am now waiting to see the Rheumatologist again as he said something about Methotrexate.
The Rheumatologist and nurse specialist gave me back my hope!
Does anyone have problems with their GP prescribing pain relief though? My GP (although hes very nice) had to be asked 3 times to give me the anti inflams that the Rheumy prescribed for me. And now that they have been stopped he wont prescribe me anything. He just tells me to buy paracetamol. Some days Im climbing the walls with pain and he says take paracetamol. Anyone elses GP say the same thing??
Dan I make my own ice packs, I bought a few bags of those plastic ice cubes and divided them up into seperate food bags. I have lots of them in the freezer and they dont melt! Cheap too!
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Date: 10.06.2010
From: louloubelle

Subject: Re: Just starting to acknowledge my arthritis

OMG Teresa, I cannot believe your GP won't prescribe pain killers - what a bastard!!! I'd be seeing another GP if I were you or ask your rheumy to prescribe them to you. My GP's have been happy to put me on different painkillers since I was about 14!

You can get co-codomols (codeine and paracetamol) over the counter and I can highly recommend Boots own brand tension headache relief tablets (contain codeine, paracetamol and a muscle relaxant). Hope they help if you decide to give them a try.

Lou x
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Date: 10.06.2010
From: Teresa

Subject: Re: Just starting to acknowledge my arthritis

I thought it was just my GP! When I have seen other doctors they give me painkillers that work straight away! The last time my GP was on holiday a doctor gave me Diclofenac and Solpadol. I thought I was in heaven. I could still feel a bit of pain but my god what a difference! And then a month later when they were all gone my GP was back and I asked for more and got told to get some paracetamol!
I buy Solpadeine that has codiene in it but I am going to definatly try the boots own brand ones you mentioned. Solpadiene are soooooo expensive and I can munch through a packet in 2 days!
Cant wait to see the Rheumy again in 4 weeks!
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Date: 10.06.2010
From: louloubelle

Subject: Re: Just starting to acknowledge my arthritis

Teresa - change GPs! Your GP clearly couldn't give a toss about whether you're in pain or not so isn't acting in your best interests... not very ethical in my opinion and what other treatment may they deny you in the future. I think you should speak to your rheumy about your GP and make a complaint about the GP - no-one should be left in pain... ever!!!

I feel really angry that you have been treated (or not treated) like this.

Lou x
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Date: 10.06.2010
From: Sue Mitchell

Subject: Re: Just starting to acknowledge my arthritis

hi Dan

I am so sorry to here about your story, I've had arthritis from the aged of 17 and its got alo worse for me. I am suffering in pain nearly all of the time especially in both my knees at the back of kneecaps.
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Date: 10.06.2010
From: Verity

Subject: Re: Just starting to acknowledge my arthritis

Hi Dan! Im 24 and have had arthritis since age 6. Its now turned into RA but Im sure my actions didnt help. I have really only just come to terms with it in the last year. I spent my entire teens rebelling against it and being in denial. The amount of drugs and alcohol i used to consume was shocking and i refused to take my MTX because I didnt wanna stop drinking. Ive just had both my hips replaced and to be honest I dont think I would have had to if id taken it more seriously when growing up. I know hindsight is a wonderful thing (lol) but if you can face it head on the more you'll benefit in the future : ) Its bloody tough though.
Good luck xxx
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Date: 12.06.2010
From: dan

Subject: Re: Just starting to acknowledge my arthritis

Thanks for all the replies! on my phone right now, so its a bit too hard to reply properly so i will have to return later to address your individual posts. its been a tough few days, acknowledging the facts has made me quite depressed, for the first time ever in my life. each day i seem to feel much more pain, maybe its the stress bringing it on, or its all in my head.

i didnt say before, i have been a cannabis smoker for the past ten years, until a couple of weeks ago where i decided it was time to quit. since then the pain has seemed to get much worse, so maybe it was actually doing me some good. i am doing well on the quitting and dont want to go back to it, but im now wondering if i might in fact be better off doing so. especially since im going to have to quit drinking too now, and the possible fact that i may not be given decent painkillers because ive been neglecting my liver. im not trying to make an excuse, im just becoming fed up with the constant pain everytime i move or try to do anything(or the pain where i am not moving or doing anything!).

will return later to reply properly. well maybe, its a football day! come on england!
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Date: 12.06.2010
From: Verity

Subject: Re: Just starting to acknowledge my arthritis

Hi Dan!
I too am a smoker of the weed. To be honest I can't cope without it. I havent had any painkillers that even compare. A year or two ago I decided it was time to cut out the alcohol coz of the meds etc and so now only smoke. Ive been smoking for quite a few years now and have actually decided to cut down a little bit and see how it goes but I couldn't cope without it.
I like finding other ppl that find it helps coz I swear by it lol

xx
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