MCTD Support Group

Its good you are seeing your dr tomorrow. You need to get this checked out. I haven't had anything like that but know others who have, hugs

Hi wrknprogress,

I was diagnosed with MCTD in early 2007 and very shortly after, as a result of lung involvement, I was diagnosed with ILD. Unfortunately, the condition of my lungs has continued to deteriorate and the treatments to date have not been successful. Get this checked out soon and i hope it doesn't turn out to be the same for you.
Good luck with your appointment tomorrow.
Josée

Fortunately for me there is nothing wrong with my lungs so far... but I do have the raynauds. The doc has me on blood pressure meds for it.. Since I already have low blood pressure it makes me feel dizzy... but I am happy to report that I think it's helping!!! What I'm taking is called Norvasc. (in the USA) What has also helped for me (before I was on Norvasc) was just making sure to keep really warm, lots of layers everywhere, especially hands and feet. And I found these boots on eBay that are made of real fur and sheeps skin... I hate to buy something that is made of animal parts solely to wear it... but it's truly the only set of boots that really helps prevent RP attacks. They may have you try nitroglycerin cream on your fingers... they tried that for me but it didn't work well... and my dad tried getting me battery operated warming gloves... I wouldn't invest the money in those... Well that's my advice! ^_^

Thanks so much for the input. I periodically post on the TMA website, but it depresses me so. A lot of folks there don't really help themselves and tend to be a bit whiney...I'll stick around here for a while...seems a bit more upbeat:) Thanks again...I'll let you know how it goes today:)

Just a quick update...
I was put on Norvasc for the Raynaud's...so far I love it...only had like, 3 episodes yesterday...

Have a pulmonary consult on the 7th of Aug. My doc seems to think it's asthma, actually. Well, okay then...this is MUCH better than the ild dx I was anticipating! Asthma is VERY treatable. So, I won't know for sure until after the 7th, but I ran yesterday and I actually think the Norvasc may have helped a little with my breathing...or it may be a placebo affect...nonetheless...I got a mile and a quarter in...after my lifting!!

Thanks for your input:)

Not much to add here... I do find running is impossible, and biking very difficult, and breathing is occasionally a bit of an issue. Hiking is hard, too. Skiing I can do at a pretty advanced level, and I can swim at a moderate level... but I do get winded more easily than my wife.

You could just have sports-related asthma with a little extra topspin from UCTD, This doesn't sound like pericarditis, and if you had pleurisy they probably would have picked it up by now. Hopefully, this will prove to be just an inconvenience you can work around by varying your workout routine.

Hi! I'm a bit late with my reply but just thought I'd add my experiences.

I've had severe Raynaud's Disease since I was 9 (I actually can't remember what it feels like not to have it!) It's pretty rubbish so I'm glad to hear the Norvasc is working already. If for whatever reason it doesn't work out, try Nifedipine. I’ve been on for a month now and it has worked wonders. Without meaning to sound melodramatic, it really has changed my life!

Other things that have really helped me are my little electric blanket (which I think is actually for back pain) but I plug it in and put it under my feet when I'm sitting down. It's a little mat, about the size of a piece of paper and you can take it anywhere (it's discreet too - I hate standing out from the crowd!). I have a big electric throw blanket too which I use whenever I'm sitting around at home or in bed. And my latest discovery is heated insoles for your shoes. They're disposable, last 8 hours and get really warm. The thing I like best about them is that they are so small and thin I can wear them with any shoes (even my ridiculous high heels!!) without anyone noticing. The thing I like least about them is the price... they are £4.99 a pair at my local chemist so I only use them as a special treat! If you can get them in the US I would definitely recommend them!