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tired hands and AS

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Rheumatoid Arthritis
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Posted 8/10/2008 12:59 AM (GMT 0)
hi all.  im 34 nd just got diagnosed with AS. Ides, we've messaged before about AS i think.

my question is:

does anyone here with AS get tired hands really easily?

doesnt matter what im doing, if i do it for long, they start to get tired and stiff, and even lock up a bit sometimes.  No real joint pain or swelling.

thanks

Posted 8/10/2008 1:15 AM (GMT 0)
Yes, even writing a simple note some days takes all my strength to finish it. My hands cramp up and the thumb joints lock up. I also have osteo in my hands. Sometimes I feel like my grandmother's age instead of 47. BTW, welcome!
Cindy
Posted 8/10/2008 3:23 AM (GMT 0)
Hi Poobah,

 

AS is one of the possiblities my Rheumy is looking at with me right now.  My hands get tired, stiff and sore really quickly too.  I'm a photographer, and for the last 6 months or so, I can hardly hold my camera for more than an hour.  At the end of a wedding, my hands  can hardly make a fist because there is no strength in them.  So yeah, I get that too. I just need the AS diangnosis to go with all the other "red flags".  I don't get the swelling either, and the soreness isn't a joint thing. It's an all over kind of ache.  Does that sound like you? 

 

Ginny

 

 

Posted 8/10/2008 4:21 AM (GMT 0)
My request to see a rheumatologist was initiated by the terrible pain in my fingers. At the conclusion of my initial evaluation by the rheumy he said my hands were the least of my problems. He found a gazillion other more "severe" problems. He attributed my finger problems to advancing age and general "wear and tear" arthritis.

Fast forward two years - I arrive for an appointment with the rheumy and have a grotesquely swollen left index finger. I show it to him. He gets out the ultrasound and begins looking at the joint and tendons. He gets visibly excited. He proceeds to tell me that there is a theory that enthesitis in the fingers can go as far as the nail bed but it has never been documented. He takes many, many pictures of the ultrasound images to document the now proven theory of enthesitis in the nail bed.

The enthesitis I have in so many of my peripheral joints is one of the signs of AS and spondyloarthropathy. My hands continue to plague me periodically. I also have lots of bone spurs in the joints to make matters worse. I have broken lots of dishes, drop lots of things I try to hold, and can generally be counted on to make a mess of anything requiring lots of fine motor skills with the hands. There are times I cannot even hold a pen and ask the receptionist at the doctor's office to fill out the co-pay check for me to sign.

Life is fun......
Posted 8/10/2008 6:13 AM (GMT 0)

yes ginny, i think your problem sounds similar to mine. what gives? I've actually noticed the problem off and on for 9 or 10 years, but its been very mild and intermittant. I really didnt have back pain, hip pain or any joint issues until this year. So whatever it is, its been there a while.

Posted 8/10/2008 3:38 PM (GMT 0)
Mornin' Poobah,

 

In doing some research on AS, I found out that for a large portion of the population, the AS symptoms of back, hip and neck pain don't show up until the disease has been around for up to 20 years! I was astonished by that.  For me, it kind of makes sense. I started having the neck issues in my teens.  The lower back sacroiliitis was diagnosed quickly. I had the pain for about 3 months and a bone scan diagnosed it.  That was 3 years ago. The hip, ankle, foot, knee, wrist, hand pain are new ones, this year.  So "whatever" this is, it's progressive.  I'm 34 now.  Prime age for AS to rear it's ugly head.

 

Is your hand stiffness worse in the mornings, or is it an all day thing?  Mine are stiff this morning. I was using my camera a lot yesterday and I think that is the problem. 

 

I don't know what the heck this disease is all about.  I have enough trouble figuring out my lupus and fibromyalgia! Now I might have another AI disease to add to my cocktail. 

 

I hope your hands give you a break today. When you talk to your rheumy about it, I'd love to know what they say.  Keep us posted!

 

Ginny

Posted 8/10/2008 8:15 PM (GMT 0)

Ginny

Wow, that's interesting news. I've never heard that before. I have access to a site that doctor's use for the latest information on different things. I work for a doctor's office and set it up for the doctor, so I have his password. He told me to use it whenever I wanted to. I'll check it out and see what it says.

The 20-year thing wouldn't work in the case of my son or my husband. Hubby's symptoms started when he was 24 and our son's started when he was 17, but I thought it was due to the way he was sitting at his computer. He'd sit with his legs up on the desk.

Posted 8/13/2008 12:18 AM (GMT 0)
ok, my rheum just said - you have severe AS, and if you're lucky and respnd well to tnfalpha inhibitors, you may be able to do activites of daily living.

???

Ive had SI pain and back pain for 4 months, with normal xrays!

Unfortunately, enbrel doesnt seem to be working - has anyone had the experience that enbrel worsens symptoms? I cant tell, but sometimes i swear that is the case.
Posted 8/13/2008 3:57 AM (GMT 0)

Poobah,

Wow.  Sounds like you left the rheumy's office in a daze wondering what the heck is going to happen next?  How did you get your AS diagnosis?  Was it a bone scan, blood test, symptoms, all the above?

What are tnfalpha inhibitors?  I've never heard of those. I don't take enbrel so I can't help you with that question.

Gee. I'm preparing for an AS diagnosis when I see my rheumy on the 20th.  My SI pain has been going on for 3 years!!! I'm in a doozy of a flare up right now. I feel totally fused together in the low back region. I can hardly move around.  My hip joints are involved too.  So I'm walking like a duck.  How's your neck? 

Feeling like this blows big time. I know your pain. How are the hands today?

Well, keep us posted. I'm gonna go slap some wicked-potent steroid creme on this back.

Ginny

Posted 8/13/2008 1:50 PM (GMT 0)

Hi Poohbah,

I currently take enbrel for RA (along with methotrexate).  I had to take enbrel for a good 5 or 6 months before I started feeling the full effects.  And even then, it wasn't until I added methotrexate that I gained the maximum benefit.  I swore the enbrel wasn't working at first as well, but now after I do my weekly injection, I can tell a big difference.  I have great relief for a couple of days anyway before the enbrel starts wearing off.  For AS, I believe you can take up to two weekly enbrel injections.  One of my co-workers has AS, and he took enbrel for 2 months with little benefit, so he switched to remicade.  Not sure how that's working for him, but I did warn him that it takes differing amounts of time for everyone to receive benefits from any of the tnf inbibitors (enbrel and remicade among others).  I got through the first several months with lots of pain medication and lots of very hot baths (and exercise). 

Hope you get some relief soon,

Elcamino

Posted 8/14/2008 3:41 PM (GMT 0)
my diagnosis is based on negative lab work, HLA b-27 +, SI and back pain. 12 years ago I had an episode of tailbone and neck pain that lasted 18 months.

Will have MRI of SI joints next week.

 

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