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Update on First SSD Exam

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Fibromyalgia
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Posted 3/15/2013 12:00 AM (GMT 0)
I'm back from my SSD exam. rolleyes

The doctor was an occupational doctor who tests people to see if they can work. His first words to me was you can't have lupus and fibromyalgia at the same time. nono

He did a bunch of range of motion things and an eye exam ( confused ). I was so sore when I left there I had to pop a couple of pain pills.

I did find out that my dominate hand is weaker than the other. This is the arm that keeps getting the shakes a lot. eyes

He even questioned my rheumy's decision about holding off the MTX for now.

Posted 3/15/2013 1:56 AM (GMT 0)
Typical, Joy. I saw two doctors and they were terrible...couldn't hold a candle to my doctors. I don't know where SS digs up these doctors.

Sherrine
Posted 3/15/2013 3:51 AM (GMT 0)
Wow. Aren't you glad to know that you can't have both? Ok, which one don't you have - Fibro or Lupus?

Hang in there!

Debbie
Posted 3/15/2013 4:59 AM (GMT 0)
Can I give up both, Debbie?

I'm sick of the constant pain and inflammation of both of them.

While I'm at it I want to get rid of all of my illnesses and get back into the work force. I'm tired of not being able to pull my own weight (and it's a lot). >: (
Posted 3/15/2013 1:32 PM (GMT 0)
Joy, you aren't getting inflammation from fibro because fibro isn't an inflammatory illness. It just feels that way. Those of us who have fibro only test negative for inflammation in our blood work. Now, I also have some inflammatory illnesses and do test high for inflammation but I know that's not from fibro. It's from the other inflammatory illnesses.

You know, maybe your doctor can mention, when they send your records to SSA, that you definitely CAN have fibro and lupus together. Perhaps send proof, too, because that is such a stupid, uninformed doctor they sent you to!

Sherrine
Posted 3/15/2013 3:12 PM (GMT 0)
It does seem as if your doctor should point out that the evaluator is predisposed to rule against because of a preconceived and inaccurate belief.

If you are working with a lawyer, make this point with him/her.
Posted 3/15/2013 5:04 PM (GMT 0)
I don't have a lawyer, but will get one if I'm turned down.
Posted 3/15/2013 5:35 PM (GMT 0)
Still, let your doctor know what the SSD doctor said.  They might make that correction in the paperwork they send in.  It's worth a shot. 

 

Sherrine

Posted 3/15/2013 11:11 PM (GMT 0)
I honestly didn't know for sure if inflammation was involved in fibromyalgia. The last time I had blood work done was a couple of years ago, and they said I also have inflammation but didn't know what was causing it? Are we sure it isn't fibro related, just asking?
Posted 3/15/2013 11:17 PM (GMT 0)
That's what the doctors that are studying this illness say. 

 

Sherrine

Posted 3/15/2013 11:24 PM (GMT 0)
So my inflammation is the Lupus but the tender to the touch is the Fibro?
I'm so confused???
Posted 3/15/2013 11:29 PM (GMT 0)
Yep....That is why Fibro is mainly diagnosed with ruling other things out as well as the 18 point tender point exam.

It's both our brain sending the wrong "pain" signals to our zillions of nerves throughout our body. And then because of having this type of pain 24/7, our muscles will tighten up to try and "protect" ourselves..This is why nerve pain medications like Cymbalta or Lyrica were developed to try and help break that signal. As well as muscle relaxers can be effective for the actual spasms.

My explanation in layman's terms obviously...LOL

Post Edited (Snowbunny21) : 3/15/2013 5:37:00 PM (GMT-6)

Posted 3/15/2013 11:32 PM (GMT 0)
Okay, I understand now.
I tell you, you learn something new everyday with this disease.
Posted 3/16/2013 3:29 AM (GMT 0)

Snowbunny21 said...

And then because of having this type of pain 24/7, our muscles will tighten up to try and "protect" ourselves..This is why nerve pain medications like Cymbalta or Lyrica were developed to try and help break that signal. As well as muscle relaxers can be effective for the actual spasms.

I finally gave up on deep tissue massage therapy. After years of the most amazing message therapists working on me, no one was ever able to break up the mass of muscle knots in my shoulders. This is the best explanation I've ever heard of why I have them and why no one was able to get rid of them. hmmmmm...........
Posted 3/16/2013 4:11 AM (GMT 0)
I read today people with lupus are not to have deep tissue massages because it activates some type of fluid in our muscles causing us more pain.
I wonder if it's the same for fibromites?
Posted 3/16/2013 4:56 AM (GMT 0)
My exam was essentially the same. Blood pressure, eye exam, and he had me walk normally, toe-to-toe, on my heels, and on my tiptoes. I think he figured walking toe-to-toe was too much, because I leaned against the wall a lot for balance, so he didn't ask me to hop. He didn't make any declarations about not believing in fibro, though.

He asked me about my fibro, my low back problems (sciatica, spinal stenosis, DJD), nerve pain in my left leg, interstitial cystitis, and asked me what all medications I take. I told him about the fatty tumor that is in my sacrum that cannot be removed. He asked me if I had polymyalgia rheumatica and I told him I hadn't been diagnosed but that my doctor thought I may have that because almost all my problems range from my thighs to my neck. He poked on my elbows and knees. He listened to my heart and lungs. He didn't ask anything about my asthma, chronic blepharitis, or anything else (I can't remember what else he asked). Then he sent me for an AP and lateral lumbar spine x-ray, and that was it.

I have no idea how an hour meeting with someone who knows nothing about you can determinate your fate. I think they give the contracts out to the lowest bidder. You know, even someone who is the last in his class is still a doctor.
Posted 3/16/2013 4:57 AM (GMT 0)
Oh, and my friend who had lupus was told by the leading doctor in lupus circles (Daniel somebody) that she couldn't have Chrohn's and lupus at the same time. She dropped him like a lit match.
Posted 3/16/2013 5:00 AM (GMT 0)
Oops, I forgot: he also had me raise my arms to the side and to over my head and tested the strength in my hands.
Posted 3/16/2013 5:30 AM (GMT 0)
Arm raising
leg swinging
bending waist, neck, knees
rotating ankles, wrists
listen to heart, breathing
thumped on stomach (weird)
hit my reflexes
Strength testing of hands (failed the left hand)
vision test
weight
pulse
blood pressure
wrote down all of my prescriptions
Posted 3/16/2013 6:04 AM (GMT 0)
My massage therapist gives gentle massages and gets the knots out that way. She said people with fibro should not had deep massages.

Sherrine
Posted 3/16/2013 6:34 AM (GMT 0)

Sherrine said...
My massage therapist gives gentle massages and gets the knots out that way. She said people with fibro should not had deep massages.

Sherrine

I've had both types over the years and finally gave up on them. I've even had hot stone massage. They all felt wonderful while I was on the table but the pain would be back later that day or the next day. It got me to thinking I was just throwing my money away, and so I've stopped going now. If I had any kind of lasting relief, even for a few days it would be worth it, but they unfortunately never worked for me. When my muscles feel overly tight now, I soak in a warm tub, or apply heat and use my theracane which helps. I LOVE my theracane!
Posted 3/16/2013 1:58 PM (GMT 0)
Me-Ouch, did you go to massage therapists who are trained to massage myofacial pain syndrome and fibromyalgia? That makes a huge difference. My MT is trained in massage for a large variety of illnesses...including cancer. Yes, there are special techniques for this. She also is board certified. All this makes a difference. Also, you do have to drink a lot of water the day you have the massage to wash away the toxins that were released with the massage.

I was hit badly In the stock market a few years back and tried to cut back on expenses. I stopped the massages and started having more pain so I started them up again. I now will not give them up because they do help me a lot.

Sherrine
Posted 3/17/2013 1:15 AM (GMT 0)
yes I know about drinking the water...also I went to a massage therapist that worked in a chiropractors office, so I would assume she was properly trained. In fact, she was the first one who ever mentioned fibromyalgia to me and that was so many years ago before I was even diagnosed with it.
Posted 3/17/2013 2:26 AM (GMT 0)
Sherrine,

I get the massages once a month also. It seems to help keep the knots out of my neck and back as well as I can move better and sleep better the first few nights.
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