MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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gabpaul 07/31/2014

Hi,

I just wanted to share this with you all incase anyone has back pain. I have assumed for several years that it was due to MCTD. I also have thigh pain. Both bother me pretty much daily. My rheumy said there was nothing she could do about it.

I mentioned it to my internist and she was surprised my rheumy "just threw her hands up in the air." The internist said it sounded like potential spine problems. She sent me to the George Washington University Hospital Spine and Pain Center and that doc order a MRI of my spine.

Turns out I have Lumbar Degenerative Disc Disease that is causing the back pain. The good news is that the pain will finally be addressed. I will take Lyrica and get a steroid shot in my back on Sept. 2nd. My division director has the same thing (though he is much older than me - I am 45), and his shot kept him pain free for 2 years. People also have surgery if the condition is serious enough, and I have been told that leaves you pain free for life.

They still don't know what causes the thigh pain.

So, anyone with chronic back pain may want to consider an MRI of the spine.

Be well,

Gabrielle

Terrilynne 08/01/2014

Good point Gabrielle. I think often we just decide everything is related to MCTD and sometimes it's not. Good to bring it up. I mention everything to my rheumy but I think I will look for an internist to get a second look at everything.

I live in the DC area too-- Northern Virginia. What rheumy group are you with? I'm go to Northern Virginia Center For Arthritis. I'm pretty satisfied there. Just comparing notes.

Terrilynne

gabpaul 08/01/2014

Hi,

All of my doctors, with the exception of my cardiologist, are with George Washington University Hospital. It has been very good. What really helps is that they have an online system called "My Health." I can email my doctors, they can email me, I get appointment reminders, and I have access to all of my medical records and conditions. (I have a few other medical issues.)

It was a good lesson - don't blame everything on MCTD!

Cheers,

Gabrielle

tammib 08/02/2014

I have DDD and spinal stenosis. The injections didn't help me much so I had radial frequency ablation or something like that which helped a lot. The doctor that did it has flown the coop so I will have to start over with another doctor, which I already have too many of. I have been procrastinating, but your post has motivated me to start the process again. Thanks!

gabpaul 08/02/2014

Thank you for the information! I have heard that sometimes the back shot doesn't work. Hopefully we will be back-pain free soon (or at least most days)!

Cheers,

Gabrielle

MToennis 08/02/2014

I have had back problems for a long time. About 8 years ago, I developed severe pain in my back hip area. It did not hurt unless you touched it and then it was really bad. I would roll over at night in my sleep and fly out of bed due to the pain. I went to the back Dr and he did an x ray. Then he asked when I had hurt my back. He said I probably had a fracture in the past and it had set up arthritis at the lower end of my spine. I had one round of the shots and that severe pain went away in a few weeks. I still get soreness in my back and sometimes get spasms, but nothing like I had then that went on day after day. I hope you have as much success as I did with the shots. BTW- MCTD does make the inflammation worse, but the cause was a fall I had years earlier!
Mary Ann

gabpaul 08/04/2014

Thanks Mary Ann!

I just had a co-worker who had to have the surgery because the shots did not work, so my fingers are crossed.

Gabrielle

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