I am not a diva, but I am envious of people who can work with this condition. What are your secrets to dealing with the constant discomfort we all have? I would love ideas with wrist and shoulders.
My secret is the fact that I am the only income earner. It’s a necessity.
No secret. Mans gotta eat. There are diseases where one can't work. This isn't one of them (95% of the time)
Im one of the lucky ones i guess. I have to take pain meds before i walk out the door. But my company is very understanding and they look out for me. But i dont have a sit down job. I weld a/c headers. That consist of using my hands alot, lifting,(which my boss doesnt wanna catch me doin), standing 8 to 10 hours. I love my job. And im good at it. I think thats why they work with me. Im blessed to have them. Also i am on the fmla plan. I think im gonna tell them bout this site. Very good eye opener.
Hi there, I find that swimming really helps my shoulders, it took a few months for me to be able to swim properly (breaststroke) but I persevered and was swimming 3 times a week from just after Christmas up til a few weeks ago...............just been having a flare and work is about all I can manage at the moment. I do a gentle form of Tai Chi know as 'Shibashi' as well which my Occupational Therapist taught me, it helps my shoulders, wrists, chest and back, and promotes strength in core muscles, I'm still managing to do that. I have a resting wrist splint which I wear at night on my right wrist......its stiff as a board in the mornings but because my wrist is held in the proper position overnight its not as painful during the day.
I'm lucky I do an active job otherwise I'd have great difficulty remaining mobile as I can't sit still for long.
My grown up boys live with me too and they're fantastic, I don't do any housework on my work days as I'm not up to it, they do it for me, Bless 'em! Although they do joke about me being old before my time and have threatened me they're buying me a commode for my 50th birthday prezzie!!!!!!!
As for the discomfort, well, I've just got so used to it I just plod on. I give myself a break if I can't do something or am going through a bad time...........but I have noticed if I stop all exercise I get worse and feel more down in general. I went to a wedding recently and was determind to dance and have a good time.........it did me the world of good even though I was in bad pain for 3 days afterwards!
I hope you find some thing that works for you :)
How do you drive with flared wrist? And what do your wrist guards look like? I think I may need some.
My wrist are all over and I cannot turn them. Swimming I love but cannot put a suit on due to my shoulders and wrist. Walking slowly is all I do.
My wrist splint was made on me by the Occupational therapist, she roughly cut this plastic type stuff after laying it in a hot water bath for about 10 mins molded it onto the back of my hand and arm nearly up to my elbow, its secured by soft straps with velcro…not pretty but it works. I drive in thumb/wrist splints and the drive is 5 mins to work so its managable. I bought a tankini for swimming that’s too big, and yes its often hard to get on but I do it at home and wear it under my street clothes. I usually don’t wear undies after swimming as they’re too hard to get on with damp skin just make sure I wear a baggy stuff to and from the gym 
thanks for all the suggestions! I am all new to this and my mind is on overdrive now. Rhumey called and is said take my presidone twice a day, a really small dose, until the bio gets approved which should be soon!
Just hang in there, everything seems to take so long but the best advice I received was…as soon as your meds start to improve your condition do some sort of exercise to stretch and limber up your body, it takes time and effort but I believe its worth it…I’ve got another week at work then off for a week so I’m gonna get back in that pool cos it makes me feel good x
Good luck with your meds hun
I just keep trying to move. It may hurt to loosen up but it hurts more if you don't move. Take time to find out what your triggers are - keep track of what you eat, when you are under more stress than usual as well as when you hurt more or feel better(even if it is just a little bit). Observing your patterns may help you discover your triggers and then avoid them like the plague. I didn't cut them out completely, but I reserve eating them until I know I have a few days to recover if a flair does happen. Keep yourself busy, find something to enjoy even when your flares are happening. I have a variety of hobbies. Some can only be done when my hands are cooperating, others however can still be enjoyed if my fingers/wrist are acting up but actually help me feel better by moving my hands. I am the main provider of our income here and I have to continue. I happen to be very good at what I do so my school wants me to stay so they have been cooperating with my limitations. Keep in mind what works for one with this disease does not always work for another so trial and error is an important part. Good luck finding your personal answer.
Physical therapy has helped me build the muscles around my rotator cuffs so mousing isn't as painful. I also drink a ton of water, which guarantees I will be up and headed to the bathroom at least 1x every 1-2 hours for stretching. Set your alarm every 30 minutes to ensure you standup. Even if you sit right down again, it's still worth it. I also was able to change job positions so I'm not sitting all day typing, now I do a lot of presenting, which holds its own set of problems in terms of energy. It's far more interesting and engaging though.
Good luck!
What about driving.
pearlgirl said:
Physical therapy has helped me build the muscles around my rotator cuffs so mousing isn’t as painful. I also drink a ton of water, which guarantees I will be up and headed to the bathroom at least 1x every 1-2 hours for stretching. Set your alarm every 30 minutes to ensure you standup. Even if you sit right down again, it’s still worth it. I also was able to change job positions so I’m not sitting all day typing, now I do a lot of presenting, which holds its own set of problems in terms of energy. It’s far more interesting and engaging though.
Good luck!
My daughter, seeing my struggles, went to the disability website and in fact DID find that PsA is on the list of diseases that can make you eligible for disability. I do not know how they determine that the disease has progressed enough to warrant disability. I will try to continue as long as possible without trying to apply, but some people may be at the point that the disease will not allow them to be productive in their jobs. I have found that the best thing for all of my joints is exercise limited by what my body is telling me. Exercise as much as possible (especially stretching) without causing major joint pain. My doctors have always told me to stay active but "listen" to your body when it is telling you that you have done too much.
I am in that 5% that can't work. Every time I think I can go back the rheum says and I will quote"it is not in your best interest to go back to work at this time . It is highlly unlikely you will ever return." That about sums it up.
I can vouch for physio and swimming gently. Wrists I use wrist wraps when I have too. Hot and cold contrasting. Use a double sink into the hot then the cold. Leave them in there for a minute. Do this for 3 to 4 minutes always end with the cold. RMT prescribes that to me for my hands, wrists and feet. A bit awkward using the sink for your feet so I use a couple of low pans LOL :)
I would disagree.
Per the wikipedia definition: Symmetric Psoriatic Arthritis: This type accounts for around 25% of cases, and affects joints on both sides of the body simultaneously. This type is most similar to rheumatoid arthritis and is disabling in around 50% of all cases.
And Mutilans is around 5% of cases and it is disabling.
I am at a point where I will be filing for disability soon. This can be a very destructive disease. The chronic inflammation can cause stress and disease in internal organs along with the joint and connective tissue issues. Then there is the pain - chronic fatigue - side effects from medications - etc.
I believe the number who end up disabled from this disease is closer to 20% or 25%
tntlamb said:
No secret. Mans gotta eat. There are diseases where one can't work. This isn't one of them (95% of the time)
Sadly, being disabled rareley qualifies you for disability, but far more often voc rehab. Its sorta like qualifying for biologic treatment. You train for lower impact work, work the job if you fail you lower again.
At our local office the person who takes the bulk of applications (and I'm sure its no mistake) is quad who take your information and enters it with a stick between his teeth.
Now I'm about to say something insensitive cruel and uncaring but it read it carefully because its the fact. You disability determination will be based SOLEY on an impairment rating of your symptoms WITH aggresive treatment. Unless you can well document you have done all the treatment or are currently on treatment, you will be sent back to get it. If you have sat on your hind quarters put on a ton of weight, gotten totally out of shape, failed to stretch, exercise etc etc and take treatment (being afraid of side effects won't wash) you will be denied.
A lot of people with chronic disease (especially pain) give up without even realizing it. They will be shocked the first time they apply for disability.....
5% according University of Washington is generous. But keep in mind many age out, more don't have enough work credits, others simply don't bother depending on spouse/family, an others underestimate what they can do.
Oh, don't trust wiki for much of anything, its sorta like listening to Fox News for fairness and Balance in reporting.......
A small story …my brother was born with a congenital heart defect, he didn’t walk til he was five. Started school at 8 had numerous other problems as he grew older including epilepsy and gout. He wasn’t a complainer and when he finished school (he had to have home schooling from about 13 as he was too unwell) he found a charity that ran a sheltered work shop, part funded by local govt. for disabled people, both mentally and physically impaired, he was there for about 10 years until the funding was cut by local govt. He was permanately ‘blue’ because of his poor circulation and a heart and lungs that were failing. He died aged 37 awaiting a heart/lung transplant, he had always lived in the family home as he was unable to cope on his own, he could barely walk across the room and would suffer up to 6 or 7 petite mal seizures a day and hadn’t managed the stairs (even on his bottom) for 7 years. He finally received carers allowance only 4 months before he died. This is an allowance given to disabled people in the UK to help provide for the care they require. He went through years of trying to apply but was continually refused. Disability is hard to prove…and the world isn’t very fair. Good luck to anyone going down the path of trying to claim disability…but don’t hold your breath!
I know I have no choice but to work and will do as long as I can in one form or another…my severly affected ADD son is supported by me as he is unable to gain employment because no one will give him a job with his ADD…and guess what!? I get no help because he is over 18 and nor does he because he doesn’t qualify for unemployment benefit. But I don’t care and I don’t feel sorry for myself, I’m a survivor and a fighter and know at the end of the day I I’m the one person I can rely on whatever
good on you Louise. It is tough out there for diabled peoples in all countries around the world. Being disabled does not mean you cannot work I agree, but being disabled sometimes does.
There are a lot of people on this site that cannot work due to disability. We all know that we cannot judge a book by it's cover.
I hope that one day there is more help out there for all disabled people.
I am fortunate in that I had the support I needed to be classed as disabled and the insurance to cover me. I had no issue with my claim what so ever. I guess I was pretty lucky considering the stories I have read or heard about. When I was called and told my claim was accepted (in less than 4 months) I knew right then and there I was up the creek with the proverbial paddle.
Have I given up, never. I have learned to live a different life, a much more rewarding life.
Some of us get lucky. I feel lucky. As for my hindquarters they are still ok. Not perfect but ok :)
If you can find a gentle way to say as nasty, painful and down right rotten this disease is, compared to other diseases the level of disability is such that 95 out of a hundred of us are expected to fend for ourselves. Harsh perhaps, but its the way it is.
Go with wiki but nearly every other source like this one from webmd will further explain that wiki figure: Symmetric psoriatic arthritis can be disabling, causing varying degrees of progressive, destructive disease in 50% of people with this type of arthritis. Though symmetric psoriatic arthritis resembles rheumatoid arthritis, it is generally milder.
Disabling is not disability, its a call for adaptation.
Catastrophic thinking will make the disease worse, don't know how to avoid it but it does. So no matt
I find the inequality annoying to say the least, not for myself but for those who have to fight to prove they cannot work especially when they’ve hit an all time low in their life…it was heartbreaking watching my brother try and jump throught the proverbial hoops to no end, even with the backing of his cardiac consultants.
I do thank the powers that be that I am still able to work, I was off work for 4 months before meds started to work and I was frightened at the time about the future. I set my self targets and goals and push myself when I can…rest when I need, although its way past my bedtime but my SI joint pain is keeping me up tonight