New Member from Rochester, NY

315 Views 5 Replies 6 Participants Last post by Lily, Dec 21, 2008

tinamarie

Discussion Starter · Dec 18, 2008

Hi all. I was presented with Lupus symptoms two years ago, although it took almost the whole two years to get diagnosed. The docs originally thought I had Polymyositis since I was admitted to the hospital with my CK levels at 40,000. Over the years though I would end up with other symptoms, the last one being that I can never go into the sun again without looking like a muslim woman. That one was hard to hear! :sad: Most recently I have been having horrible knee pain. Hurts to stand, sit, bend, you name it. Hurts the worse after having it in the same position for awhile and then try to move it. I hate not knowing if new ailments and pains are part of the Lupus or something else entirely. My docs make me feel like a jerk for wasting their time with Lupus symptoms. Wondering if anyone else has these pains. Had it in my foot as well. I also have stomach issues as well and have an appointment with a Gastro, thinking that may be Crohn's. Why not, already have Raynauds AND Lupus. Might as well add one more autoimmune disease to the list. I also have three teenagers (14, 18 & 19), so I always have stress, hard to avoid it. Thanks for listening!

Tina Marie

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Maia

· #2 · Dec 18, 2008

Welcome to the site - you've found a great place for information and support. I have had that knee pain you talk about, for me it only comes in one knee which is one that was kicked by a horse so in my case we reckon it's due to damage from that. Although it is strange that it comes and goes and can be quite normal at times and then other times I have great difficulty going down stairs (going down them with that leg kept straight is about the only way - but then I risk throwing out my hip if I do that too much). Just yesterday my knee pain started in on my again and is much worse today, we are due to get hit with a major winter storm within a few hours so I wonder if the weather affects it too. Have you noticed that pattern at all?

Best wishes for a good GI doctor appointment & getting some help with those issues. Welcome again and I look forward to getting to know you better - maybe meet on chat sometime.

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onetay

· #3 · Dec 18, 2008

Tina Marie,
Welcome glad you found the site. Sorry you have so much going on with you. You are lucky it only took 2 years so yes that was fast for a lupus dx. I hope that you take the time to learn what works for you as not everything works for everyone. With 3 teenagers you will have to learn to say no to them more often, I know it is hard you are the mom. Super mom left your home the day you started showing signs of lupus, I know because the same thing happened at my home.

I know what you are talking about with the knee pain. It is not fun to be still or active with the knees. I too wish that one would help. I have found that by not being on them as much that helps and I move positions all the time even in my sleep. If it gets to bad I have a pain pill I can take. My doctor has been as helpful as she can be for me.

As for your doctor making you feel like a jerk, I have said this more than once they work for you and if they don't want to do that find a new one that will. I am not a great fan of doctors that think you are waisting their time when it is you paying the high office call fee and waiting to be put in a room, and waiting some more for the doctor to come in and spend (if you are lucky) 10 minutes talking with you. A doctor should never ever make you feel like a jerk or anything else when it is your money. Well, that is my rant on the doctor thing, even if insurance is involved you pay for that too. Ok done now.

I hope you start feeling better soon.
Tammy

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KarolH

· #4 · Dec 19, 2008

Tammy said it well, the doctors work for you........if they want to work against you then find another one. There are good ones out there.

Welcome Tinamarie to the board. You will love it here and get a lot of support and good information too.

I have pain like you everyday so know that your not alone. I am using the Fentanyl patch for pain and it is working well. Percocet for break through pain but not much anymore as the patch is doing the trick.

Hope to get to know you better.:wink2:

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Rose Maclean

· #5 · Dec 19, 2008

Stomach pain

Hi there,

Stomach problems appear to be unusual with lupus, but I have these too. I have been diagnosed also with mixed connective tissue disease. I had the misfortune of seeing an incompetant GI, who did a gastroscopy and a colonoscopy before telling me i had "unexplained" gastritis and microscopic collitis, with no follow up. My Rheumatologist tells me no such thing as "unexplained", she is suspecting scleroderma ( I suffer from bad Gastric reflux as well) and will be testing further. I really hope you get better info, but know this, there is always an explanation, just don't stop asking!

Best of luck

Rose

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Lily

· #6 · Dec 21, 2008

Hi Tinamarie,

I hope that you are able to find decent docs who don't make you feel like you are wasting there time

You should never be made to feel like that, with Lupus we can get many symptoms and it's their job to investigate them!

It's not terribly uncommon to have stomach issues with lupus, some people get gastritis and it's not because of an underlying scleroderma, it goes along with their Lupus. In other cases sometimes it's due to meds and both can be worked with to get some relief.

I guess with the stomach problems you would not be able to tolerate anti-inflammatories? They would probably help with your knee pain. However there are other pain meds they could try you on to see if you can get some relief.

Take care,

love
Lily

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