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Date: 10.01.2009
From: Ripper70

Subject: psoriatic arthritis & fear

I have PsA, I was diagnosed a while last year. When I think back I have had the symptoms for quite a number of years but they have only gotten quite bad recently. I have been wishing that some of those sake oil cures that the alernative medicine people would work but I do not think this will be the case. I am really unhappy about this as I just got a Phd scholarhsip and met a women that I really love a great deal and we were planning a family. This is really a bastard of a thing to happen and I am really scared I am going to be a cripple for the rest of my life - the idea of being in a state of worsening pain for the next 20-30 years scares that hell out of me and truth be known I have been suicidal considering the prospect of suffering till death. I am not really scared of pain, but a constant and worsening perrenial pain is a bloody horrible thing to experience and imagine - I do not believe in god/gods or whatever, but I wish i did as there is nothing that will save me. I am really scared, dissapointed and angry and I feel cursed.
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Date: 13.01.2009
From: Lisa

Subject: Re: psoriatic arthritis & fear

When I was diagnosed with RA in November I felt similar to you. I'm only 42 but felt like my life as I knew it was over, whats the point, etc etc. Then I stopped, took a very deep breath and started to try and remind myself of all the things in life that are good. My husband loves me to bits and will continue to love me no matter what happens to me. You have met a woman you love very much - would you leave her if she was diagnosed with RA or PA?? There are thousands of sufferers out there with children, just check you are ok to try on the tablets you are taking. And the final bit of advice I have, which may not go down too well with some people is don't use this website as your bible. It is full of very helpful information from people who really know how you are suffering - however, we all seem to post the negative things in our life on here. I am now on 20mg a week of mex and I am pain free. I have started to run again, am back on track with my college work, I'm back full time at work, my friends and family love me and Sunderland don't look like they will get relegated this season!!! All of this should be typed in bold capital letters. In brackets I can add that my mouth is sore and I am sweating buckets in the night and some days I am so tired I can't do anything worthwhile.
I don't believe in God as such but I know there has to be something that can save me and that is me. I damn well refuse to be beaten by my own body. On the days when its too much I lie down with my comfort blanket and tell myself its ok to rest, on the days when I am up I do as much as possible and love the life I have. In my darkest moments I get angry or cry - but stress can make me ill..............I guess I'm rambling a bit but your posting made me feel so sad, you are not alone, we are all here, your partner is there, we will all help you to get through this, baby steps, one day at a time. If all else fails EAT CHOCOLATE!! XXX
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Date: 15.01.2009
From: lynh

Subject: Re: psoriatic arthritis & fear

Totally agree with Lisa. Some days are horrid, but other days are fine. I hope your partner is as supportive as mine. Pain is debilitating not just physically but mentally too, but there are loads of drugs out there, some of which will be helpful to you. The 1st ones you try may not be but don't despair, there is always something else to try and new ones are coming on the market all the time. Also some food / drink will affect your arthritis adversely, try to find your bugbears. Mine are alcohol and spicy foods, yours may be different.
Find a good supportive rheumatologist, one who is proactive, if yours isn't then change to another one! Same with your GP.
I've had Psoariatic Arthritis for 14 years and have a very demanding job, it can be done. Just don't try to put too much pressure on yourself, rest when neccessary and stay POSITIVE. Arthritis, in fact all chronic conditions feed on despair. Good luck
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Date: 15.01.2009
From: Stunt

Subject: Re: psoriatic arthritis & fear

Hi mate, ask your GP to send you on a Pain Management Programme, didn't do much for me personally, but I know a lot of people get good advice and support from them. You get to talk to people who will be in a similar position or even worse than yourself, and it's surprising how they cope. Most of all, keep yor chin up and keep going!
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Date: 15.01.2009
From: Stunt

Subject: Re: psoriatic arthritis & fear

Hi mate, ask your GP to send you on a Pain Management Programme, didn't do much for me personally, but I know a lot of people get good advice and support from them. You get to talk to people who will be in a similar position or even worse than yourself, and it's surprising how they cope. Most of all, keep yor chin up and keep going!
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Date: 15.01.2009
From: Stunt

Subject: Re: psoriatic arthritis & fear

Hi mate, ask your GP to send you on a Pain Management Programme, didn't do much for me personally, but I know a lot of people get good advice and support from them. You get to talk to people who will be in a similar position or even worse than yourself, and it's surprising how they cope. Most of all, keep yor chin up and keep going!
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Date: 23.01.2009
From: Tanya

Subject: Re: psoriatic arthritis & fear

Hi, I am 48 and have had Psoriatic since i was 14 with my first op aged 17. I take methotrexate 22.5 per week, and a 40ml humira injection every fortnight. I used to be like you, terrified of ending up in a wheelchair. However, if you are prepared to go for quality of life rather than a long one, i recommend you get all the drugs you can from the hospital. I doubt if i will have the longest of lives, but i'm hoping that they will be mainly pain free. Of course, i have now developed osteo in both knees and the bones are starting to rub together, and none of the meds i take do a thing to help with the osteo. You see...you can't have it all!! I have a wonderful, caring husband who understands that arthritis flares affect you whole mood, and if you have someone who loves you, they will cope with your illness too. Learn to rest when you need it, and don't feel you have to be super man. Good luck!
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Date: 16.02.2009
From: sinead

Subject: Re: psoriatic arthritis & fear

Hi i too have pa and am on 25m of mex a week and suffering with sore mouth - what are you taking for it, its driving me mad!!! I have just had 2 toes done - pins sticking out of them. I am pain free with the mex but still get inflammation flare ups. Its an awful condition to live with it takes over your life but its not the worst thing that can happen to you. I just get on with it. I have it in both knees, feet, most of my toes, both wrists, a shoulder and my back and neck. I am 41 and was diagnosed last year.
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Date: 18.02.2009
From: Ginny

Subject: Re: psoriatic arthritis & fear

My husband had psoriatic arthritis for many years and it seemed to get worse at times of stress. In fact he never even had psoriasis until he had a bad accident and then it just appeared, first on his scalp, then on his elbows, knees and then he started to get joint pain and also pain in his fingers and toes. His nails also went a bit funny and ridged. We went the usual route with our GP and tried steroid creams, oral steroids, painkillers etc and methotrexate was the next step which he was keen to avoid unless it was absolutely necessary. I did a lot of research on this condition and, by chance, read an article in one of the Sunday magazines (I think it was the Times)about a supplement called Simba used for psoriasis. My husband and I decided he would try it along with other vitamins and minerals such as A,B complex, C,D,E plus magnesium, sulphur and zinc. 10 months on and he is off all his medication, his skin is clear and he has hardly any joint pain. Lisa was right when she said that the only person who can save you is yourself and you must take control of your life and your health and stay positive. We also eats lots of fish, mainly mackerel, kipper, herrings and also he also takes cod liver oil every day. He's also found that a cream called Boswellia is good for his joints and used a cream called Themba on his psoriasis and nails. We hope every day that we have finally found something that works for him because it's given us our lives back. What I really wanted to say was that you mustn't give up hope although it's hard I know. I watched my husband trying to deal with continual pain and keep a smile on his face and it's heartbreaking. But, if this little post has helped just one person, I'm glad I wrote it.
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