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...
I know I'm new, and obviously no fountain of information. But sometimes new is good. Hopefully I turn out that way. All of the existing pain scales I've seen are overly simplified causing guess work on our part and the doctors. If you haven't hurt in weeks its obviously feeling worse at than someone else at the same pain level who feels that way everyday. Our complaints are based on change also. I'm going to attempt to create an excel worksheet that takes a few more things into consideration without being the S.A.T. and come up with a pain graph.
I would like to incorporate some questions that would jostle the memory since your last visit because we all hate driving away from the Docs office and thinking "i forgot to tell him" or " I wonder if this would have made a difference"
I find that Doc's are similar to key word search engines. They hear the right word and they go with it. And it's really hard to find anyone who always understands what your trying to say.
If anyone has any input I would appreciate it. I think if people living with these different pain levels would be very amazed at the concerns of each other were and would be another tool to learn the complexity of this question.
I would like to incorporate some questions that would jostle the memory since your last visit because we all hate driving away from the Docs office and thinking "i forgot to tell him" or " I wonder if this would have made a difference"
I find that Doc's are similar to key word search engines. They hear the right word and they go with it. And it's really hard to find anyone who always understands what your trying to say.
If anyone has any input I would appreciate it. I think if people living with these different pain levels would be very amazed at the concerns of each other were and would be another tool to learn the complexity of this question.
Mary Ann
Then I always leave 1 cause Im sure theres worse (I dont want it please)
so my worst labour was a 9 .
My worst MCTD muscle pain was an 8 ,I couldnt stand it if it went on for days Id jump off a cliff. Prednisone saved me there thankfully.
Next pain gall bladder 7 operation 6 cause you get pain killers OK both 7 . fibropain 5 most days
I guess that is your answer. I found it in a dream.
Mary Ann
My doctor has never given birth so I don't use the 'labor' scale.
I do use 'pins and needles', 'hot molten lava' and 'crunched up glass shards in my brain, neck and spinr'
Mary Ann
-Kate
Before Cymbalta, for nerve pain from a car accident, I lived with a daily pain scaled that ranged between 5 and 7, without stress, muscles spasms to add to it. I was like this for 18 months or so.
I can handle a daily pain level of 5 or so, but the brain fog, severe morning stiffness, muscle spasms, sharp pains in specific spots (different from those that normally hurt) are what kick me. So I guess, as long as it is consistent, I can manage.
My counselor asked me, on our second visit, how can I handle it. I said, I don't have a choice. I have had pain (except for the7 to 10 days that pred has taken it away) every day since August 10, 2005.
I've been dealing with the knowledge of an autoimmune aspect since Jan 31, 2011.
I still don't have a true diagnosis, they are telling me, that they may only be able to narrow it down to the family of conditions and not get a specific condition. I am ok with that. My counselor asked me, how I could talk about the test results and the possibilities so nonchalantly. I explained, stressing out isn't going to help me get better any quicker and it makes me feel worse. I understand the science of it all and have to trust that eventually we will have enough pieces to put the puzzle together.
Today is not a crappy day, not great, certainly not horrible. So I am grateful. The pred is still helping with my morning stiffness, so I am able to get moving more quickly when I wake up. Which means, I can sleep in longer. Instead of spending 45 min to an hour and fifteen stretching and/or letting meds kick in before I get up.
This makes me content.
My energy levels are dropping (last medrol was Friday), so I know tomorrow will be a little worse and I am prepared for it.
I have one week of classes and finals next week, then I am off for four weeks. I see my rheumy on the 21st.
What do I want for Christmas? Meds that help me feel like day three of a medrol dose pack.
Am I asking too much? Maybe, but that is my goal.
Brand new to this group and just diagnosed last week, so forgive me, but I am still confused and trying to figure all this out.
I was a gymnast for 14 years and have a very high pain tolerance - or so I thought. This has literally brought me to my knees and brought my life to a complete halt.
As for describing pain -
Feels like I was in a boxing ring for 4 full rounds, or like I fell down a complete flight of stairs. Everything hurts... just hurts. Ache, burn, stab, etc.
I have had many injuries and surgeries due to my gymnastics, and I must say this has got to be the worst! I'm not sure if it is because it is every day or what - but this pain in enough to drive a person crazy. As of right now, my doctor (Rheumatologist) has only prescribed Cymbalta, but it is not helping at all - not in the least.
I am trying to stay positive, and I am feeling hopeful now that at least I know why I am feeling so miserable - but does anyone have any other ideas on how to ease the pain? How do you cope? I just want to scream!
LOL Ok, sorry if I sound like a whiner, I'm just so darned confused.
Oh, and it feels like someone is twisting my ankles off, has their other hand stuck inside my hip joint and is prying it apart with a shoe horn... Owieee
but you can also search previous topics and try to get answers. But #1 the Doctor shouldn't leave you in pain. Go back and visit before the holidays
I asked him, what about if you are in chronic pain? You get in the habit of learning to ignore it, as LR noted above.
He kept telling me, "No, that never works. Getting more in touch with your body is always the way to go." Sorry, dude-- that's just insane. And I know this guy has never had a serious illness. He's a very empathic and gifted clinician, and I'm sure his patients really want to please him, but I don't for a MINUTE believe you can cope with chronic pain without some disassociation.
Another thing I explain to doctors is that pain isn't just about how much you can stand, it's about how long you can stand it. If my headaches happened twice a month, I wouldn't need narcotics, because they're a seven. If it were five or six days a week for two hours, I could probably stand it until the fourth or fifth day. But it's five or six days a week for four to six hours.
If it were eight to ten hours, I would probably need Oxy or Percocet. Fortunately, it's not-- and I don't. Thank God.
So true about the disassociation and pain. I try not to wallow in my pain as I find it hurts more. At times, I think I feel find but if I practice awareness, I discover that I do have pain, I am just ignoring it. Now, nobody can ignore anything but mild to moderate pain and I am blessed that most of my pain is in that catagory. But, if I have intense pain, I can decrease the intensity of it some by ignoring it- and by taking something for pain!. But it seems I am never completely free of pain. Just have learned to live with it!
Mary Ann