Working with PSA

General
1

I was diagnosed with PSA in July 2014. I have it in my S.I. joints. I am in such severe pain with this. I am currently on oxycodone for the pain. They are taking me off of humira as soon as I get approval for remicade. Is this pain normal? This started in April and the pain just gets worse everyday.

I work full time at a deskjob. My family doctor wrote out a script for a handicap sticker upon my request. Of course the spots at work are a first come first sever. Does this disease make me disabled? Am I being a big baby about it?

I am a independent person used to being the strong one (8 years in the Navy as a Jet Engine Mechanic) and now I look at things I have to lift in a very different way.

Any thoughts would be appreciated. I’m not sure where to start with my work place on this.

Thanks to all

2

Hi Frenchie. I recently had pain that started where my rt SI joint is and I was sure it was my SI joint, but the MRI showed it was a disk protrusion impinging on nerves. I couldn't move my right leg the pain up there was so intense.
At the time they did an MRI of my lumbar spine and my SI joints. The weird thing was the report stated there is evidence of something (I don't remember his exact words) in my left SI joint PsA-related he thought, that interestingly wasn't the area of my pain. Once-in-awhile I get a hint of pain in that area, and I hope that it stays just a hint! It happens when I lift heavy things (which I try to avoid doing.)
I've heard there are injections into or near the SI joints that can help. Good luck! I hope you get something to take away that pain! Let us know what works.

3

Back in May, I had an injection in my left joint with no effect. Pain management is working on scheduling me for two injections for both joints. The pain management doctor thought that maybe the initial one I had wasn’t done correctly…

4

Hi, yep SI pain is a b***h! and no you’re not being a baby. This type of pain nearly floored me (felt like I was literally being stabbed in that area which a sharp knife with every step) and the only thing that helped it was a TENS machine. This doesn’t work for everyone, I know, but I would have been lost without it…I still take it with me each work shift and slap it on if I need to.
Hope you get some relief soon x

5

I’ve been experiencing this for a while now. My pain clinic provider is trying to get me cleared with my insurance company for a nerve ablation. Looks like it’s going to take sometime though. I put my TENS on at 6am and it comes off at 5pm. Does a better job than Tramadol.

6

Having a handicapped sticker does not make you disabled, or a whiner, Frenchie! It makes you smart. This disease can put limitations on you, and by having a disabled sticker, you are choosing how to “spend” your energy and steps allowance. Some days, I can either walk across the parking lot, and push my buggy through the supermarket, or I can use the handicapped space and ride the store scooter. If I do the later, I’ll probably have some steps and energy left to walk the dog when I get home. No contest there! Other days, I may feel differently.



As far as your work goes, I’d put off making any irrevocable decisions until you see what Remicade can do for you. You’re still in The Gap. I’m sure your doctor would be willing to give you some kind of a document to modify your work temporarily until you are feeling better. Because chances are, you will.



Good luck with this!

7

You're not being a baby about it. This pain is not just real but very intense. You're going through a transition stage I would think. It sounds like your meds aren't working for you at this point. Unfortunately, it takes time and a lot of dealing with pain before we find something else that works.

I used to have a very physical job also. I think all the lifting and use of tools make it worse. Especially when I ignored the pain and just kept on going. I suggest you talk to your doc about a note for modifications at work until you get something that works for your PsA.

8

I agree, you're not being a baby or a whiner at all. No matter how tough you are pain will eventually wear you down and can be incredibly daunting. If you are working full time it can seem like even getting out of bed and hauling yourself to work is insurmountable, let alone having to be there all day, then drag yourself home and know you get to do it the next day.

For me this has been going on for several years, it was slow starting out but once it really got rolling I've had several spells where I thought I was going to have to change or quit my job. I drive for a living, but in addition to all the sitting I get to do physical stuff like strapping down people in wheelchairs, pushing those same people (some are incredibly heavy electric wheelchairs). With the sitting I get stiff so then I'm doing the zombie when I have to get up and move around. The pain can swing in intensity, and also location, which can lead to a lot of frustration and in some ways it can be very humiliating. Yes, I know I'm limping, no, I didn't twist my ankle; yes, I was limping on the other foot yesterday, no I'm not bullshitting you that it moved to somewhere else.

One of my coworkers has RA and a fulltime desk job, she knows I have PsA so we are basically our own support group at work, though a couple others have PsA and we all kind of offer a shoulder to (gently! always gently!) lean on. I'm outspoken as to what I'm going through, and willing to listen and offer ideas or insights to coworkers, so that they know what is going on, and with my coworkers who are dealing with similar issues so they know they aren't alone and there is someone who understands how it can be.

As for work itself, I would suggest that first you talk to your human resources department if you have one. Explain what is going on, be upfront and honest. You should be able to qualify for the Family Medical Leave Act for time off if need be, and also that can help protect you if you need time off. Disability is a broad term, you are disabled from the aspect of you have a disease that can definitely impact your work and ability to perform, so it might not be unreasonable to see if HR can see about ways to make things a bit easier for you. If you have a good rapport with your supervisors and feel comfortable doing so, then I'd talk to them, too. I'm sure they are well aware something is going on, so it's not like it will be a bolt out of the blue.

Maybe once you are on Remicade it will help, and you will start feeling better. I'm on it and it's made working so much easier. I feel a lot better and am able to cope with the pain and fatigue so much better. It doesn't work for everyone, and can take a while to work, but before making any huge decisions on your job I'd see how it works for you. It could end up that you feel much more like your old self!

Good luck! Don't give up!

9

Thank you all. At this point there just seems no light at the end of the road. I was excited when she started me on the Humira and frustrated when the pain seems to just be getting worse.

10

Living with pain and trying to work is frustrating, but don’t loose heart, just keep pushing for answers for your pain relief. I chose to use a TENS machine over stronger pain meds because that suited me better. Keeping a pain diary really helped my docs realise the level and consistency of my pain. Talking to a friend who is a doctor he suggested different things to me, one of which was the TENs,also getting management to get me better equipment to assist me in my job (renal nursing)

So I have a stool called a needling stool so I don’t have to stand cos standing in one position whilst giving patients care was enough to make me cry with pain. I’ve also found doing anything for too long just kills me, so no standing too long, walking too much, no sitting too long, no laying too long. Its taken me a good 2 years to get what I need and have had to fight for each step but I’m nearly there. All equipment is in place and now my hours are adjusted to suit me on a temporary basis but soon to be permanent (fingers crossed).



There is some great advice in these replies, I cant agree more on using legislation to help further any adjustments you might need…this is what I’ve done along with my union giving advice and support.



Wishing you improvement x

11

Hello Frenchie, one thing that I found worked well for my SI Joint pain while sitting at a desk for 8+ hours a day was a product called BackJoy. It seemed to have shifted where the weight was and forced me to sit with a better posture. I was able to eliminate my SI pain before the medications seemed to take affect.