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Date: 04.01.2011
From: x kerry x

Subject: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

hi all, im new to all this so just wanted a chance to introduce myself. As the title says, im 25 and was diagnosed with psoriatic arthritis, hms and tenosynovitis. Im just about to go into my 2nd week on sulfasalazine, and have also had to have injections into the tendons on my fingers and thumbs and been tried on celebrex, which my body didnt like. I was a gymnast for most of my childhood, then worked as a pole dancer for the last 5 years (using my flexibility to my advantage, not knowing the damage i was causing) ive had to quit my job, and find myself struggling to cope with these medical conditions. I hurt from head to toe daily, im weak, constantly exhausted, get terrible migranes, neck pain (along with every other joint in my body), i cant lift myself up and struggle to stand due to muscle weakness from using my flexible joints to lock and hold my weight, rather than my muscles. It all seems so extreme to be happening at this age, i feel like im 75 not 25! Anyway, rant over, any advice you wana throw my way would be much appreciated, the doctors dont seem to tell me very much! Thanks, kerry x
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Date: 05.01.2011
From: cathy

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

Hi Kerry I am Cathy, 27 with AS and RA. I am sorry to hear what has happened to you.I know how you feel, we should be in our prime!I hope that the drugs help you and you find ways to help yourself. That is what i have found since being ill for nearly 2 years. Try anything that you think will help like vitamins, excercise, massages,changing your lifestyle and slowing down. Stay positive and best wishes.
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Date: 05.01.2011
From: x kerry x

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

haha, if i slow down anymore ill stop altogether! Although its awful to know other people are suffering too, its nice to know im not alone. Im thinking of trying yoga or pilates, have you tried either? I think yoga would be a good way to stay active and use my flexibility without putting too much pressure on my joints but im not sure if it will do more damage than good because of my hypermobility. Thanks cathy xx
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Date: 07.01.2011
From: cathy

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

Hi Kerry I know what you mean about stopping altogether! I just make sure there is a day where i do the minimum and if i do something in the morning have a rest in the afternoon. Eventually it will pay off, I hope! I tried power walking and that was quite painfull at the time but afterwards it made me have more energy. I like the yoga idea its definately worth a try. Go for it! I am going to look for a class nearby too. Good luck Kerry xx
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Date: 09.01.2011
From: Tom H

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

Hi, I tried Yoga and it made my back worse, you have to be really careful.

Cheers
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Date: 10.01.2011
From: Louisa

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

I'm 28, have facet joint arthritis and HMS (EDS)... you should try pilates it's much safer than yoga. I have been doing it for a while now. Hasn't helped with the pain at all but at least I'm getting some exercise!
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Date: 11.01.2011
From: louloubelle

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

Hi Kerry

I've had taster sessions of both yoga and pilates. Yogaseems to focus on improving flexibility and relaxation. Pilates focuses more on strength. I found that the stronger my muscles are the easier my joints are. Until last year my PA was controlled enough to allow me to do aerobics classes and my joints felt so much stronger for it.

I would advise going to classes rather than doing it at home and explaining your condition to the instructor. I did when I went and the pilates instructer was brilliant at discreetly giving me alternative exercises to do. And if there is anything you feel uncomfortable doing don't do it or if yuo feel in pain or worn out then take a breather.

Let us know how you get on if you decide to take a class.

Lou x
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Date: 11.01.2011
From: x kerry x

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

thanks guys, ive taken your advice into consideration and i think im guna have a look for a pilates class in my area. I dont think i need any help with my flexibility, lol, but my core strength could definately do with some work, ive never been as weak as i am now! Pole dancing and gymnastics were my life and ive struggled to find a way of excercising that i enjoy as much as either of them, and that wont be doing further damage to my joints. Thanks again for the help guys, ill keep u updated as to how it goes xxx
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Date: 13.01.2011
From: louloubelle

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

Hi Kerry

I went to pole dancing classes a couple of years ago - fingers crossed your rheumy will eventually be able to manage your PA so that you can be more active

lou x
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Date: 14.01.2011
From: x kerry x

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

its great fun isnt it lou! Theres nothing better than hanging upside down from a pole by your ankles! Mind you its been so long im starting to forget that feeling :( my physio has reffered me to a pilates class at the hospital, lead by a physio who specialises in hms and arthritis, and also onto a programme where i can get gym sessions with a specialist trainer so that will hopefully help a bit, even if it just helps my mental state, lol. The pilates class will all be people with similar conditions too, so hopefully i'll not feel out of place or embarassed if i cant do things. It will be nice meeting other people going through the same thing too, chatting to people on here has helped me to accept whats going on a bit more, so it will be nice meeting real people in the flesh aswell. Thanks alot for the support guys x
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Date: 15.01.2011
From: louloubelle

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

I love it! the lady who runs the class is trying to have it recognised as a proper gymnastic sport that can eventually be included in normal gymnastic competitions and eventually the olympics! I didn't get very far, was able to do the "hanging" moves but didn't have the strength to do anything too complicated (I'm an extremely curvey lady - at the time I think I was about 14 stone so quite a bulk to hoik up a pole lol).

I hope the pilates really helps, if you're used to being active then it will be important to keep it up. I wish my hospital did things like that; I live in the back of beyond and we only have a little cottage hospital, I have to travel 15 miles to Grimsby or 25 miles to Lincoln to see some doctors that either don't come to Louth or only come one day a week :-(

I find walking to be the best excercise and I can't wait until I can get back on some medication so that I can get walking again. My sister and I would do 4 mile walks in one hour 3 times a week and it just makes your knees and ankles feel so much stronger. I found any more than 4 miles though and it pushed me too far and I would be in lots of pain.

Take care and have fun

Lou x
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Date: 15.01.2011
From: x kerry x

Subject: Re: 25 years old, reccently diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis

ive been trying to change the way people think of pole dancing for the past 5 years too. Its nice to know there are others supporting the cause. People think of it as being purely sexual, which isnt the case at all, about 5% of it is about being sexual, the rest is focusing on strength, agility, grip, co-ordination, rythym, flexibility...its so much more than just trying to look pretty swinging round a pole. It should be a recognised sport....jesus, they class darts as a sport! I miss dancing so much, id give anything for an hour on a pole these days.

I love walking too, and im lucky that i live right on the river Tyne in Newcastle so i have lots of beautiful and historic riverside walks to go on. Up until i started suffering with pa, i couldnt see the point in walking without intent, but ive really started to appreciate the joy of having casual stroll's. I havnt found walking helps my joints much, infact im usually sore the next day but mentally i find it makes me so much happier and relaxed. Its a shame you live so far away from any major hospitals or treatment centers, living in the city has its benefits i suppose, im spoilt for choice when it comes to hospitals, not that it makes the process any quicker xx
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