MCTD (Mixed Connective Tissue Disease)

Liyana I know how hard it is to try to cope when you have no energy. Family and social demands can wear you down. You need to focus on you for awhile. I found that resting and balance are the best way for me to get thru my days. Eating healthy has been the biggest help for me too. I can not emphasis enough the importance of setting up boundaries in your life. This means learning to say no is important. Family and friends need to learn to understand that there are going to be days when you just can’t get your head off the pillow. Listen to your body. Eat healthy, rest lots, reduce that stress and hopefully you will have better days. It’s raking me many years to figure this out but it’s worth the effort. Good luck.

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Thank you for your advice. I have always eaten healthy.,it’s the slowing down part that gets me not being able to do thing with my little boys. And I do love them sooo much and more. But I do always care about others more then myself. And that needs to stop for a while

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Take one day at a time. Rest. Rest. Rest. You are on a journey that requires you to take care of you first. Educate those around you about this disease. The more they understand the easier it will be for them to support you. It took me over a year to start getting my energy back. Good luck.

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I am trying diet and exercise as I can, but doing hormone replacement therapy with Sustanon (testosterone), prednisone, HGH and HCG.

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Thank you for advice. Are you on treatment for it.

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IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

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I have exactly the same symptoms. I have been off work since November 11, 2017. This comes from a guy that missed 10 days of work in 29 years. Mayo calls it central sensitization syndrome. What we have found is that it is related to adrenal fatigue and at some certain point it pushes it so far that it turns into Addison’s where are your adrenal gland is not secreting any cortisol at all. I have tried antivirals I have tried antibiotics I have tried antifungal’s been through 11 doctors and finally went to Mayo. I have a nurse that has been predicting this since the beginning that it was adrenal fatigue syndrome. So now I’m on prednisone and getting ready to do a regime of testosterone while seeing my local Endocrinologist. He is basically giving me a go ahead for this. Initially the prednisone was too low so I didn’t feel the full effects. Then I was doing it twice a day with more and felt better, but still not fully awake. I had been sleeping 2 to 3 days at a time and the time that I was awake was almost negligible because I wasn’t in any frame of mind to be doing anything. You start getting a feeling of worthlessness which just makes you depressed and drives this thing because it is a fight or flight type response that your body has which needs cortisolso you’re caught in a Catch-22. Thankfully I started taking it three times a day for 120 mg total 4040 and 40. This seems to do the trick or at least us far it has. The type of test tossed around that I’m going to be doing is not the cypionate that would normally be prescribed but rather such an on which is five different types of testosterone that are androgenic. At this point since 11 doctors of failed me and basically mayo has told me that I’m going to be very limited in what I can do and my entire life is going to be turned Upside down just to deal, that I really do not care what anyone thinks about this if it works well. Am I going to shorten up my life by taking prednisone every day at 120 mg almost certainly. However, I had no semblance of a normal life without it. The lack of testosterone will accompany it because it’s also secreted by the adrenal gland. I am not a doctor so I’m not giving you medical advice I’m just telling you what I’m doing and what has worked for me when nothing else has. Go have your cortisol level drawn and have the ACTH test That stress is your system to make your adrenal gland secrete cortisol. Mine actually did do it but it made me so sick and bloated for about six hours after the test that something was wrong. When I went back and looked at the lab work I had

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IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

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