Saturday, November 2, 2013

to post or not to post...because it's aggressive

I've logged in a couple of times thinking I'd post only to log out.  Not for the lack of having something to say, but just nahhh why bother.  October was a month of doctor visits as always.  So, here's the latest.

Osteoarthritis-OA ever heard of it.  I would bet that most have heard of that (spell check has) but not ankylosing spondylitis (spell check has not). 

Facts on OA-
-OA may also be called degenerative arthritis
-it affects around 27 MILLION Americans
-its the leading cause of chronic disability in the US
-there are 2 classifications OA and EOA (erosive osteoarthritis-or inflammatory OA-EOA less common and more aggressive)
-studies show a link to siblings and it being hereditary
-often worsens with time
-there is no cure
-there are some treatments-medication, injections, or maybe joint replacement
and so on and so on.  So, for me.  I found out the 1st of October that my right knee was basically gone. My ortho doc diagnosed OA.  I asked him could this be the AS and he said it's not AS it is OA and that I have both. great..sarcasm..yes!  He says I'm too young for knee replacement and we will try lubrication injections first.  So far his patients have a 70% success rate.  Well, I'm like, what if?  To his reply, "you're screwed".  You may think that harsh or weird, but I like his honesty and we talk openly about my AS and OA.  So, we're both hoping that I will fall in that 70%, if not, then I'm looking at knee replacement.  Oh, I'm already looking at it, but hoping this will put it off a bit.

Lubrication injections are not cortisone injections which most of you are probably familiar with--
Lubrication injections. Injections of hyaluronic acid derivatives (Hyalgan, Synvisc) may offer pain relief by providing some cushioning in your knee. These agents are similar to a component normally found in your joint fluid.  You have 3 injections a week a part.  So, yes, I had 3 Thursdays in a row of knee injections.  Let me quickly add that I'm thankful my sister was my DD.  As she said, it was a huge shot.  Then I had to come home and rest for 24 hours.  Did it work?  IDK, time will tell.  For now, I'm still in the same pain.

In the middle of getting my injections I did have a visit to my Rheumy and she told me the AS has probably accelerated the OA...great...sarcasm again, yes!

So, I'm doing all my research on this OA and find some things amusing.  The kind of info that gets a SMH (shaking my head-for those that don't know).

OK--so here's some suggestions of what you might want to do-(and of course my thoughts)-
-Lifestyle modification/changes can help reduce the symptoms (just LOL)
---rest-if you experience pain and swelling rest for 12-24 hours and find activities that don't require you to use the joint repetitively (it's my knee? and I have AS so there's always pain and swelling)
---exercise-can increase the muscles around the joint and make it more stable.  Stick to gently exercise.  If you feel pain stop.  If the pain lasts for hours, then you've overdone it (ok, here's the deal refer to rest comment--and let me add you do realize I'm in CONSTANT pain--it NEVER stops)
---lose weight-(thanks, I'll get right on that)
---use heat and cold-(been doing that)
---apply pain creams-(got that covered as well)
---use assisting devices-(this is my fav-NOT-yep I have a cane, walker, and wheel chair for various hours, days, weeks)

Top all of that with ankylosing spondylitis---whyyyyyyyyyyyyyyyyyyyy and of course, I have an aggressive OA to go along with my aggressive AS.  Why does everything have to be so aggressive and let me add if one more person tells me that exercise helps I MIGHT GET AGGRESSIVE!

While I do appreciate the suggestions and comments that I often get (ok, I try and appreciate) they all seem to come from folks who are HEALTHY!  Sorry, for yelling, but for real!  I walk to the mailbox everyday LOL  But, seriously, yes, staying as active as one can is important.  The exercise that one must do with AS, OA and bs (sorry ha) is very different.  It's a gently exercise.  Because of AS every single thing that I do will affect my entire day or even my entire week.  I will NEVER be pain free on this earth.  I have a disease that currently has NO CURE only treatments.  This disease causes other things, such as EOA and the medications I'm on so I can just manage a "gentle" day..well, can kill me.  There you have it.  If you've read this far 2 thumbs up and thank you for caring. 

This is the beginning of a long painful journey called my life.  An invisible disease that destroys the body on the inside. I could go on about my eyes, but I'll save that in another post and another day--cause this white screen is making them hurt, thanks AS, NOT)

AS has my body, but NOT me!  cause I look great LOL

3 comments:

  1. I really do know what you are going through and my thoughts are with you at this horrid time. I have had AS for over 33 years - came on when I was 24 and the pain was excruciating. One minute you would be walking ok the next you cant even move your little finger without it causing you so much pain you want to scream, but you cant because that would hurt too.
    Just when my lower back problems seemed to ease off to a manageable degree I got Iritis - for 10 years after the birth of my youngest son I was either in or at outpatients for 30 attacks and each attack could last for 3 weeks up to 4 months. I never thought I would lead a normal life, walking shopping etc. but thankfully I now play golf twice a week. But try gardening, or standing up at the kitchen sink for too long then I suffer. Carrying anything for more than a minute of so then I feel it. My motto is why I can I will. So hang on in there it does seem to settle down to a more manageable level. I now have cataracts and two shot knees but enjoy life. I am now 57. Take care and be kind to yourself - if you can do something then do, if you cant then dont. love Barb x

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  2. Hey, Ive had AS for 15 years now. First time it got real bad was in my early 20's. I did some research and was lucky enough to get some injectable Hyaluronate Acid. I did 20mg (2ml/10mg/ml) once a week for 4 weeks. In my 4th week I had a moment on my way to work that I will always remember. The pains were gone, I could get a full stretch out with absolutely no pains! It was a miracle I thought. My mind flooded with good thoughts, I can run again, I can jog again, so many things that I had all but written off before. Anyways I lived pain free for the next 5 years or so until the pain started to creep back in to my life. The last 3 years have been really advanced stages, it has really sped up and not slowing down, its really bad, bedridden a lot of days, very minimal movement as it hurts to much, even when I am on strong pain meds, even those aren't working much anymore. I am having a heck of a time tracking down this product again. I am about to buy an arthritic horse and get it prescribed that way If I have to lol. The docs just want to put us on TNF medication and forget about you, I tell them that the HA cured me before I want to do it again and they just ignore this and stick to what their texts tell them to do. It is sad. Anyways I will let you know how it goes once I track it down and try it again! I should be trying it early next year! See from my research I found out that a LOT of these degenerateive arthritis's and fibromyalgia etc a lot of times comes from having bad HA in your synovial fluid... causes inflamation and pain! just gets worse and does not get better on its own... Best way I have found is to use HA injection to sort of 'flush' out the bad HA for good HA... Like going in for an oil change... the good part about taking HA is that it teaches and gets your body to KEEP producing good HA... so you stay painfree for a long time until you come down with the disease again from starches and what not, what ever did it the first time around... Thing is it is so easy for us to catch these things with the way our foods and environment are these days... but this HA "oil change" idea did the trick for me before... and will do it again..

    I might forget to update your blog so please email me later and I will tell you how I make out.. fxconsultingservice@gmail.com

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    Replies
    1. Tried the HA in my knee. It did nothing for me. Glad it works for you and best of luck.

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