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MCTD, Fibromyalgia, Reynauds
Hello, I'm new here. I was just diagnosed with MCTD, Fibromyalgia, and Reynauds. Just wanted to connect with others dealing with similar things. I have lots of questions, so I'll try to summarize my situation. I have felt unwell for almost 15 years, (I am 33) but the past few have been exponentially worse. I've had fatigue and widespread pain since I can remember, it would wax and wane for many years, but lately it is constant and getting worse. Some other symptoms I have are dry cough at night, tinnitus, HORRIBLE brain fog, muscle twitches, lightning type headaches, and internal tremors(?) In my torso and hands. I could go on, but I think you get the point. It's debilitating, I can't do fun things with my kids(I have 4) , I feel like I'm falling apart. So first question is, does anybody else share these symptoms? What works best for you dealing with them? Next is, since this is so new for me, anyone who has had any of these dx for several years, how has it progresses? So far my rheumatologist has started be on Gabapentin, but I feel like it makes my fatigue worse and makes me somewhat foggy. Has anyone else experienced this? I'll start with just these questions for now, because I could go on and on. But trying to not ramble on for my first post. Any input would be greatly appreciated! I am super happy to have found this forum, as I have felt super isolated dealing with this. So Glad to be here, and look forward to connecting with others going through similar situations.
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@boconn89 , Darned if I didn't fail to take the whole 400 mg gabapentin last night, only took 300, and hardly slept after 2AM due to nerve pain in that darn toe!
I take Buspar, too, and my younger self would be very judgemental!
After all this time, wouldn't you think I'd know better!
I just hope this isn't a "new and improved" phase! I had forgotten the misery of night time nerve pain! 400 tonight!!
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1 ReactionI don't know actually. If that is included in a standard vitamin/mineral panel, then yes
Hello, sorry to hear of your illness. I have had Raynauds since my early 30's and I am now 92. I have it in my hands, and it started as just a little in the tips of my fingers, and I now have it over the second knuckle. I have to keep my hands warm. Any cold weather, or hands in the freezer to get food are a definite NO NO. They become painful, and of course I have to be careful not to get Frost Bite, so gloves are a must. I have Trigeminal Neuralgia so I take Pregabolin 50 mg twice a day. I took Gabapentin for a short time, but did not find it useful. The Pregabolin does make me sleepy, and that is why I am trying to make it on as small a dose as I can. Hope some of this maybe helpful to you.
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1 ReactionHi. My diagnosis, MCTD, FIBROMYALGIA. I'm sorry that I don't have answers. But I'm thankful to have come across this group and will be following. My diagnosis came about 3 and a half years ago, I'm 60. I also have had symptom for years. I've been on Duloxetine for about 2 years now. At various times throughout that time, I tried to wean myself off for various reasons. I've had such a hard time with it, but I'm determined. I haven't yet told my doctor that I cold turkey stop taking it two weeks ago. I would like to know how others dealt with the side affects of this drug and if there is an alternate drug with less side affects. I know that it's not recommended to abruptly stop the treatment but the side affects have gotten unbearable. On a positive note, the wrenching low back pain has subsided since stopping the medication. If I can find relief for the nausea and brain zaps, I'll be happy.
God Bless
Linda
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2 Reactions@school2health. Hello and welcome to Mayo Clinic Connect! Everyone here shares their health journeys and what works for them and what doesn’t. We’re glad to have you join us! What specifically. Didn’t you like about the Duloxetine? What kinda of side effects did you have?
@yellowdoggirl. I see that you take gabapentin. How long did it take to adjust to the medicine. My neurologist started me on gabapentin 100mg for restless leg syndrome. The headaches are terrible! And she wants me to slowly taper up to 300mg twice a day! I can’t even imagine! Did you have headaches or anything else?
I took gabapentin for almost a year. After all the Grover’s Disease symptoms started to decrease, I tapered off. 300-200-100 & then only a couple of times to sleep when the itching started again.
Off all the way now & no need for it either.
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1 ReactionI saw your comment on gabapentin. I tried this for Trigeminal Neuralgia, with no success, but no side affects. I am now on Pregabolin 50 mg and most of my pain is gone. I was on as much as 200 mg a day, but I was constantly asleep. When I begin to have pain in the jaw, I use BABY Teething Medicine. Rub it on the gums,, and everything is much better.
Gina5009
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1 ReactionI do not have your toe pain, but I do have Jaw Pain (Trigeminal Neuralgix). Gabapentin did not help me at all, but I am taking a very small amount of Progabolin 50 mg once a day and it is all I need with the help of Baby Teething Medicaton. I cannot take larger amounts of the Progabolin because It just puts me instantly to sleep. If I take it before bed, I usually sleep 7 hours, and this is with a CPap machine humming in my ear.
GINA 5009
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1 Reaction@gina5009 thank you for your answer. I m taking gabapentin for restless leg syndrome. Have you heard of it? In the late afternoon, me legs start cramping and jumping around. It can be very painful. So far the gabapentin at night has helped but f I take it early afternoon, my head feels like it will explode! Aaagggghh. And the doctor wants me to taper up to 300mg! Oh, my