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Not sure... suggestions? Maybe RA?

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Old 03-26-2012, 09:52 AM   #1
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Not sure... suggestions? Maybe RA?

This may get long so sorry in advance.

First, my mother has severe arthritis but they are not sure what kind...the dr.'s at UW (who have taken her case to conventions) all cannot figure out WHAT kind she actually has but they do know she has arthritis. They keep trying different things.

In March 2010 I started with plantar fasciitis in my right foot. I tried everything to treat it myself and finally went to the podiatrist in October 2010. When I had surgery (not my foot) in November 2010 we figured it would get better from the rest. Then in December 2010 it started to burn, couldn't rest the back on my heel on the bed (the weight of it there hurt soooo bad!), etc. In January I was put in a boot and told to be non-weight bearing. The pain continued to get worse and the burning got worse too...I was in bad shape (I was now having sensitivity to cold, wind, socks, etc. It HURT to have any wind blow over my feet as now my left foot was bad too). I got many opinions and finally found a dr. who figured it out. He ran all the tests to rule everything else out (even ran the RA factor test and lupus.) They all cam out negative. I was diagnosed with RSD/CRPS in May 2011 and had 6 bilateral lumbar sympathetic nerve blocks done. Thankfully, the nerve blocks helped with the sensitivity and burning. I only burn occasionally now and the I am only sensitive to air movement occasionally. I still have pain (though not as bad thanks to lyrica) and I can sleep most nights (another symptom is insomnia).

In August 2011 my ankles started to hurt..felt like crushing pain. My dr. and I both figured it was the RSD moving there (RSD can spread and can be really is a NASTY disease). In November (when it got cold as I live in AZ), my lower back and hips started to hurt in the mornings the most. Again, figured it was the RSD or lower back issues (x-rays have shown spondylidic disease going on in lower back). Then in January 2012 my fingers (both hands) started to hurt in the morning and were swollen in the mornings. It wasn't bad until one morning I went to brush dd's hair and the brush fell out of my hand. They loosen up as the morning goes on and they don't hurt as bad. My whole body loosens up after being tight in the mornings (though it is still tight all day). I figured it was from my body reacting to the pain in my feet...though I am not sure now. My body is so tight and painful and yet I am on baclofen 3x day. About the same time, I noticed this bump on my thumb joint. Also, my TMJ has been flaring lately (I do have degeneration on the left side already...have had for about 10 yrs now)

It is now to the point that I almost dread going to bed at night because I will have to wake up in the morning to the pain. I lay in bed as long as possible until I cannot wait any longer go potty. (haha...can you tell I have 6 kids lol) Just this last week I have noticed my knees, shoulders, and elbows have started in on this morning thing. I am falling apart. I am only 38...I still have a 5 yr old at home....and I am taking away from my family financially and I cannot keep up with everything I used to house is falling apart, etc.

Could this be RA? Or something else?? Can you have RA and have a negative blood test? Can the test be one thing in March 2011 and another in March 2012?? Should I push to see an arthritis specialist? I know that with my mother having arthritis I am more apt to have it. (She started with it about my age and had her first knee replacement at 45ish. She has also had that knee re-replaced, a hip replacement, and 1 wrist and both ankles have fused or are close to fused (all naturally). Arthritis is basically throughout her entire body EXCEPT her fingers.

Thanks for getting this far. I am just getting more worried about this as it seems to be progressing. I am having a hard time opening things, holding heavy things hurts, etc.


Last edited by 6kidz; 03-26-2012 at 10:01 AM.

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Old 04-01-2012, 10:28 AM   #2
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icecreamlady HB User
Re: Not sure..suggestions? Maybe RA?

I'm sorry for all that you're going through. You can have a negative blood test and still have RA but your xray that showed spondylitis probably means that you have some sort of spondyloarthopathy like Ankylosing Spondylitis or Psoriatic Arthritis. You will need to go to a rheumatologist. Make sure you take your xray with you. Good Luck.

Old 04-10-2012, 02:43 PM   #3
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Re: Not sure... suggestions? Maybe RA?

Hi 6kidz and let me apologize for being so late in getting back to you. The day you posted, I was having my 3rd spine surgery for OA. Just got my staples out yesterday so sitting no longer feels like I'm on a pin cushion.

The morning stiffness in bi-lateral joints is a pretty common pattern for RA. Doesn't mean you can't have another form or even 2 forms or have RSD with it. I've had severe OA since my late teens and this past surgery was my 23rd for OA. I'm 60. Had both knees replaced at 47.....I get it. Then I got severe RA 7 years ago and 2 years ago got Ra in both replaced knees......just to add insult to injury. and then added secondary Sjogrens when my eyes went nuts. It just never ends.

But I am what they call sero-negative RA. Not only sero-negative but they recently have diagnosed me with a rare form of Ra that hits the soft tissues worse than the joints as all my tendons have calcium deposits in them and I am dislocating joints from lax tendons. But when they talk about sero-negative, that doesn't mean no positive blood work. Most with RA have a high sed rate and CRP. You may have a high or low white blood cell count. Platelets go up too from RA. And you generally become anemia that doesn't respond to iron.

You need to find a good and patient rheumatoloigst who will test and observe and watch and takes time but sooner or later, whatever it is, will show it's true face.....unless it's your mom.

In 1900, there were 2 kinds of arthritis...OA and Ra. By 2000, we had 100 types of arthritis and it is predicted they will have identified 200 types by 2050. Sooner or later they will find out what your mom has and who knows....maybe it will be named after her. A sad leqacy for sure but she might help many in the years to come.

So please find a good doc(shop if you have to) but find someone who will LISTEN.

Let me know what happens..................Jenny

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