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MCTD: My Life Is Ruined And Doctors Won't Help
I was diagnosed with MCTD three years ago. In those three years I've seen countless specialists and none of them have been helpful at all (or even believed me when I talked about being in pain).
I have tried every single medication you can list. Literally all of them. None of them have worked. Some made me insanely sick or had such severe side effects they weren't worth taking for the minuscule amount of help they may have provided. A lot didn't work at all.
I have tried that homeopathic BS that absolutely doesn't work and I Don't' know why it keeps getting recommended to me. I've tried the TENS unit thing that also didn't do anything other than make me feel more pain and irritated after it was over. I've tried meditation, yoga, mindfulness, breathing etc whatever that BS is that they claim will TOTALLY cure you and doesn't do anything. I've tried exercise which is supposed to be a "Cure" and it only made things worse. I can't smoke weed because it makes me super paranoid and even if it didn't, it's never helped my pain even a little and I can't take CBD oil because of other medication I'm already on. Even if I could take it, same thing, CBD has never helped pain for me whatsoever.
There is one medication that has helped my pain consistently but doctors won't prescribe it. Ever. And I know this. I know for sure that my life is entirely ruined because of this. I've been housebound for 2 years cause of pain and other complications. I can't do anything like I used to. Just doing simple chores like the laundry or vacuuming or trying to cook a decent meal are insanely complicated.
I'm 100% sure doctors are doing this because they want me to off myself because it's an easier way to "deal" with me than giving me meds that actually do work. I'm so sick and tired of being treated this way and day after day I spend more time in bed not wanting to move due to pain because there's literally nothing that works and no one who will help me. My life is completely over and I'm being punished for a crime I've never committed, it's unfair and I don't see why I should keep living like this.
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I am sorry you are going through all that. I have found that nothing really takes the pain away but some things might ease the pain so that I can semi function. Does anything do that for you?
It is really hard when the life you were living or the life you envisioned is not there anymore.
I found when I focused on the positive, even if it’s I got out of bed today or the 10 minute bath or shower eased my pain for a few minutes, it helped focus my mind away from ALL the negative.
You got this. Prayers
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4 ReactionsHave the doctors tried low dose naltrexone?
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1 ReactionRegarding suggestions you try Low-Dose Naltrexone/ (LDN).. If you decide to pursue this, maybe one of these online resources can actually help you-- LDN Research Trust's Prescriber List or general telehealth services (Amwell, Lemonaid)---Sadly, since scammers are experts at portraying themselves as legitimate---please consider asking someone here/now or make a new post asking if someone can help you track down a legitimate online MD who knows about LDN .
May all unfold so that, at last, your suffering decreases---ideally, that it disappears entirely.
PS: And to all who are commenting here, thank you for wanting to help "sporkswafflez's"--Your voices are greatly needed in today's world of negativity.
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2 ReactionsSad to hear that you are going through this. Tying into your title about doctors, I think it is best, sometimes, to stay away from doctors, (but do checkins to see when they maybe finally figure things out). They used to say that an apple a day keeps the doctors away and now they know that apples are high in quercetin and other anti-inflammatories which do reduce needs for doc visits!. I know that some of the meds that I’ve been given have actually hurt my health way more than the original issue. If you know something helps, why won’t they prescribe it? What is it? We just passed the Winter Solstice so days will start getting longer and I hope things get better for you. But keep taking your Vitamin D until we make it out of Winter!
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1 ReactionHello again spork, if I may call you that. Something happened to me recently that maybe could happen to you. Actually, it happened to my grandson. He is 16 years old and since the covid school closures, he has been in obvious trouble. He has sleep issues and more than the appearance of nacrolepsy. He stops, freezes mid-sentence or in the middle of doing something. All this with little to no sleep at night, He has seen lots of doctors, done lots of tests, was probably over-medicated with psychiatric drugs, inspite of an off the charts IQ was placed in Special Ed. Then recently he got a new Primary Care doc who noticed something none of the other docs had, a deviated septum. Tests done and we learned he had zero air flow on one side and only 40% on the other. Surgery and when the splints were taken out, he said, « Wow! I did not know people could breathe like this. » It is too soon to be completely sure, but it looks like he is normal now and really happy to breathe well. Miracle, for sure.
So, I conclude that perhaps you shouldn’t give up trying to find compassionate and skilled doctors. They are not all sadistic bureaucrats.
@sporkwafflez Wow. I had to look up MCTD because I never heard of it. Sounds pretty bad and I don't blame you for wanting Percocet. Doesn't it inhibit your bowels when you take it? And after a while, I know it wears off so you need a bigger dose. That may be part of the reason your doctors won't give it to you. Have you been on an antidepressant at all? Some of those ease pain and can be an advantage, even if you are not depressed. And seeking a therapist to talk to regularly about "these doctors" and the anger you have would seem to help too. I cannot suggest any other pain med myself; I have RA and scoliosis and have to rely on Tylenol. Other opiods would bind me up so hard that I would never be free of the constipation. I have IBS-C. Another miserable condition.