MCTD, Fibromyalgia, Reynauds

Posted by boconn89 @boconn89, Apr 6, 2022

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

gina5009 | @gina5009 | Jun 25, 2023

Gabapentin was not helpful for my pain. We switched to Progabolin and I am down to 50 mgs. If I take more it puts me to sleep all day and night. The Progabolin works very well, and if I have some residual pain I use Baby Teething Medication. I rub it on my gums. I have heard of the restless legs problem. I have a friend whose husband had the problem. I will ask her what they did.
Gina5009

yellowdoggirl | @yellowdoggirl | Jun 26, 2023

In reply to @becsbuddy "@yellowdoggirl. I see that you take gabapentin. How long did it take to adjust to the..." + (show)

@becsbuddy and @gina5009 and @griffin1120 ,
Good morning!
I'm sorry it took so long to respond. I got a pacemaker May 12 and the stress woke up the toe nerve pain!
At first, gabapentin made me very "stupid", forgetful! Then the pain was excruciating all day, I titrated up to 1900 mg over the day as fast as possible. That was 2016. Pain was ok for 3 years until big stress, cardiologist told me this happens.
Took weeks to adjust to gabapentin.
Be patient, if possible, and I hope you feel better!

yellowdoggirl | @yellowdoggirl | Jun 26, 2023

In reply to @gina5009 "Gabapentin was not helpful for my pain. We switched to Progabolin and I am down to..." + (show)

@gina5009,I read that gabapentin only works for 60% of people. That leaves a lot needing something else!

yellowdoggirl | @yellowdoggirl | Jun 26, 2023

In reply to @becsbuddy "@yellowdoggirl. I see that you take gabapentin. How long did it take to adjust to the..." + (show)

@becsbuddy ,
I was given only tramadol for the toe this time - didn't work! Old opiates did, but I don't like to play with them.
I tried 2.5-5 mg medical THC (also "expired") from a dispensary (had a medical marijuana card). Also upped the gabapentin dose.
It worked!
Still dopey in the AM though.

gina5009 | @gina5009 | Jun 26, 2023

In reply to @yellowdoggirl "@becsbuddy , I was given only tramadol for the toe this time - didn't work! Old..." + (show)

Gabapentin did nothing for me. I am taking Progabolin 50 mg. Keeps the Neuralgia at bay.. I also use Baby Teething Medicine on the gums.
Gina5009

dorma | @dorma | Jun 27, 2023

For some reason, doctors will not tell people that Gabapentin makes one very tired and sleepy!! I used to take it, but NEVER in the day time! Only at night. The side effect was that I could sleep, which I truly needed at the time.
I take a green tea capsule as soon as I wake up, along with a Tramadol. In about 45 minutes I can function better. Tramadol does not help with real pain, but it does help the Fibromyalgia aches!!

harley22 | @harley22 | Jun 27, 2023

I thought I was the only one who had weird toe pain,but after reading comments from others, I see it’s not that unusual.
Sometimes it feels like someone is putting a pin thru my toenail.
I take extra strength Tylenol and Tramadol 50 mg at bedtime for nerve pain.
It keeps the stabbing,pain at bay for the most part.

laurie6 | @laurie6 | Jun 27, 2023

In reply to @yellowdoggirl "@gina5009,I read that gabapentin only works for 60% of people. That leaves a lot needing something..." + (show)

GABA can reduce blood pressure as well as some meds for blood pressure. Be vigilant in monitoring your blood pressure with gabapentin. And a lot of people only take theirs at night unless a daytime nap is worth the relief to use it during the day.
Once you build up a tolerance, you’ll have more insight for taking it when it can be most helpful.
Or so I’m learning…

laurie6 | @laurie6 | Jun 27, 2023

I have the Raynaud’s also. Nicotine makes it VERY SERIOUS so don’t start smoking 🚬lol!

I actually did better with tramadol and Tylenol in the short term and then gaba (the dietary supplement, NOT THE PRESCRIPTION gabapentin) has been helping without more side effects besides the need to watch BP.

I keep small amounts of magnesium handy at bedtime as it can be very helpful during RLS (restless leg syndrome) and or muscle spasms.

yellowdoggirl | @yellowdoggirl | Jun 27, 2023

In reply to @harley22 "I thought I was the only one who had weird toe pain,but after reading comments from..." + (show)

@harley22 ,Huh! My doc wanted me to only use 25mg tramadol with the x-strength Tylenol. Not enough tramadol to do ANYTHING! 50 was better, but that tiny bit of THC worked wonders. Now 2 days and counting.
Needed nothing special last night, just regular amount of gabapentin.

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