You seem to be feeling like me today. I needed to vent as well. It helps I guess but I can totally feel your pain. I hope tomorrow will be better.

Someone gets it! That in itself helps. Hope tomorrow is a better day for you.

Just wondering if either of you have symptoms of gas, gurgling and digestive issues.

I have had some success with taking digestive enzymes and a dairy digestive pill. The immune system is mostly in the gut so anything that relieves those issues seems to help ....somewhat. No miracles but feeling even 30% better is GOOD. Generic Gas-x (simethicone) also seems to cut tummy pain.

I have a lot of nausea. The doctors ask if I have any nausea and when I say every day, they just look at me! Good thing is, it usually isnt all day. Just waves from time to time. I sure do get the digestive issues. Prevacid 2 times a day helps and Tums sometimes. I have taken Carafate also. It helps ulcer pain. As for gas, no milk for me!
Rainbrother- Welcome! Read some past posts. There is a wealth of info on there. I found Mobic, Celebrex, Motrin all to be lifesavers with the pain. Just miracle drugs. But my stomach did not agree. Have you tried any of those? Maybe it will give you a few more spoons.
Mary Ann

The problem with anti inflammatories is they are hard on your stomach. I take pres prilosec 40mg and have forever it seems. Also nexium. Also about every anti inflammatory made. Problem with them is they eventually stop working and you have to try something else. Its frustrating for sure.

I can't say I have any GI issues, other than the usual thing from 300mg of codeine daily. Restoralax in my coffee takes care of that.

I agree, anti-inflammatories are murder on the stomach. I was on Vimovo, which is naproxen with an added buffer. It's much easier on the stomach.

Welcome, RB. For what it's worth, I think opioids are a fine treatment for this illness, though that dose seems on the high side, depending on body weight. The online equivalence calculators put 150 mgs. as the equivalent of about 15 mg. of hydrocodone, and I take 10mg once per day.

Of course, the problem is tolerance, dependence, addiction. I'm a big fan of once per day doses to kind of limit those problems. I find that most of the time, the hydrocodone totally does the trick at 10. If it doesn't work, I don't take more. Occasionally, I've gone as high as 12.5 mg., maybe ten times a year. But at those doses, if there's an earthquake or terrorist attack and all the pharmacies close, the withdrawal probably won't be too bad.

Don't drink on that crap, either. I did for ten years and got away with it, but I was just lucky. I totally could have died. I don't drink at all now.

Graduate to oxy or dilaudid or something? Not for me. Tolerance and withdrawal are far worse, and if you increase, the lethal dose can get easy to hit by accident. Not yet, anyway, hopefully never or not for a very very long time.

Pain is just pain. I don't try to get rid of it, just take the edges off. Eventually, I think, the neural pathways for pain just burn out, and it's a dull annoyance-- doesn't feel like as much of a crisis. In fact, I think that may be one reason we are so exhausted, we are actually in pain that we're not even aware of anymore.

My GI issues are really hit or miss. There are rare but scary acid reflux events...

And then there's gas, which is usually a problem only in the morning. It's really humbling when you're a guy in your late 50s who imagines you are a sharp dresser and fairly presentable, and you have to find some well-ventillated place to...

Okay, I don't want to descend to grade school humor, but you have to laugh or you'll cry. Of course, these... gastric events... not only have olfactory sequale, but sometimes they can be an auditory inconvenience as well.

My wife is rather hard of hearing-- but this particular sound is in the one very narrow frequency range that she can hear perfectly.

Thanks, Cat. I agree about not going higher on the opioid scale. My last GP wanted to switch me to percodan, and I said I'd rather increase the codeine. With the latter, I can at least work and function: with perc, I'd be staring at clouds all day. The codeine contin is time release, so it doesn't really mess with my head.

My new GP did say, pain-free is unrealistic with MCTD: if we can get to 25%, we're doing all right. And that's what I get to most days, and I can more or less function. Well, not most, but the good days. On bad days, even 300mg of codeine does very little. Lately there have been more bad days than good, days where I think it's really not worth it at all. Days like last Friday, where I left work after an hour, cried all the way home from pain, and went to bed til the next morning.

I've always been an ace trumpeter, since I was a kid. But I have noticed the last few months that it indeed has been getting worse.

You mean you play trumpet? Yeah, my guitar playing is getting worse, too. But I haven't stopped yet.

If you have a 9-to-5, try to power through to lunch, keep a clean history of taking sick time in four-hour blocks or however they like to do it.

Buy yourself time while you look for a backup plan, stash as much cash as you can in your 401 K.

It was a huge transition to freelance when I made the jump and cost me over 50 grand, but way worth it. Glad I didn't do it too soon, though. So hard to call it right.