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Can you believe my rheumy said....
lisaisweavebee posted:
So I'm at my rheumy appt and I'm telling him how my hands are hurting so bad and I've lost so much strength in them and my wrists that I'm having a very hard time decorating and carrying large wedding cakes. And that after decorating I pay for it with arm pain for days. So much so, that I am giving real serious thought to closing my cake business.

The a-hole looks right at me and says, "you know, you never look as sick as you say you are"

I expect total strangers and people unfamillar with lupus to make the asinine comment "you don't look sick" but from a Rheumatologist?

nancyj95 responded:
Get a new one!!!!!!!!!!!! You can't put up with one who treats you that way. Know how you feel, but find one who's more knowledgeable and understanding. I am lucky with mine because even though my case is mild, I've never been able to get off steroids, and he is so supportive and willing to try other things.
Hope you can find a new one.
renalupie1 responded:
I was a cake decorator in my youth. I totally understand how you are feeling. I couldn't even begin doing that again full time. although I miss it terribly!!

Find another doctor. For crying out loud that is about as insensitive as you can get....

David Zelman, MD responded:
I believe you are a frequent poster on this site and so I will take the time to respond to you. My guess is that you also have fibromyalgia but would agree that it was not the most diplomatic way of expressing the idea that perhaps your pain complaints bespeak the central amplification characteristic of that disorder.
David Zelman MD
MarySings replied to David Zelman, MD's response:

Could you put your comment into plain english?

"perhaps your pain complaints bespeak the central amplification characteristic of that disorder."

Thank you,
lisaisweavebee replied to MarySings's response:
Hi Mary,

What Dr. Z meant was that the symptoms I was whining about are common complaints of fibromyalgia patients.

Could it be fibro? I suppose anything is possible, however, I think it's much more likely that my rheumy is just a insensitive jerk.

My money is on carpal tunnel as that would make sense considering I squeeze a icing bag all day long. I am getting tested for it today.

Either way, I won't be back to see that rheumy - I've lost all respect.

David Zelman, MD replied to lisaisweavebee's response:
Pain is magnified via the brain and spinal cord in FM and can also be present in lupus patients. Many of the posts on this site suggest that and many of the "undiagnosed" on this site likely suffer from it or some variation of it.
Lisa you could have carpal tunnel. That would be a good outcome in that you could be treated for it
David Zelman MD
nancyj95 replied to lisaisweavebee's response:
My ortho docs thought I had carpal tunnel and I wore the braces for years, but when I was finally diagnosed with lupus and put on steriods it magically disappeared-so be careful.
lisaisweavebee replied to nancyj95's response:
Hi Nancy,

Well I don't have to worry about that as the test results for the carpal tunnel came out negative.

Just that insensitive jerk will think I made the whole thing up.

I hate my body.

lisaisweavebee replied to David Zelman, MD's response:
Thanks Dr. Z for the input, unfortunately I don't have carpal tunnel and am at a loss as to what is making my hands numb. I swear I'm beginning to think I'm crazy...would a crazy person know they are crazy? :^)

troys1963 replied to David Zelman, MD's response:
dear dr i have severe lupus,i have never been in remission ,dont do well on most lupus drugs,seeking rx for rapamycin or rapamune from a oregon dr,do you know of any drs in oregon that will give rx for drug ,this is my last opition befor seeking stem cell rebulting???
lisaisweavebee replied to troys1963's response:
Hi Troy,

I'm so sorry you are having such a bad time with the lupus. It's horrible when the drugs don't work. I did want to mention that WebMD doesn't allow anyone to recommend physicians by name. I just thought I would mention it as I didn't want you to think Dr. Z was ignoring your request.

Are you under a rheumatologist's care? I'm unfamiliar with that drug.

Sorry I couldn't be of more help and I hope you're able to find some relief from the lupus soon.

dozzi responded:
Get another doctor I know about the pain for 3 months before I found out I had Lupus, I was hurting all over even the bottom of my feet. I had trouble doing simple things with my hands it hurt so much. My doctor help me I am on hydroxychloroquine for Lupus and meds for inflamation don't suffer from that pain for now. But I am still in pain from Pleurisy inflamation in my chest rely on pain medication for that for now
auglynn replied to dozzi's response:
Before I found out that I had Lupus, I was going for a massage eevery 3 days, which I couldn't afford, but it did help. i was aching so badly, I didn't care what the cost was.
Octoberschild responded:
I'd get a new doctor if my doctor treated me in such a way. I have a wonderful Rheumatologist though. She is the best! I have pain in my hands, fingers, wrist, and my feet as well as other areas. I'm never sure if it's my Fibromyalgia or the Lupus causing me so much pain. I'm allergic to just about every pain medication there is, so my Rheumatologist has me on a muscle relaxer. I was on a anti inflamatory drug. Since she checks my kidney function as well as many other things everytime I see her, the test showed my kidneys weren't fuctioning like they should be so I was taken off of the anti inflamatory. Those that don't have Lupus and Fibromyalgia can't begin to understand the pain we live with daily. If I were you I'd first find a new Rheumatologist, then get checked for Fibromyalgia. I know of someone else that has Lupus and also has Fibromyalgia. Now I read on here that others also experience both illnesses.

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