Originally Posted by Karate Mom
Hi, Geraldine. Wow...sounds like you have been through soooo much. It really sucks, doesn't it? I can totally relate. It's like the snowball effect - the problems just keep coming and coming...ugh! I'm glad you're feeling better!
I wish I could say that I was feeling better, but things are the same. Actually, one thing has sprouted lately that I am having difficulties with - varicose veins (ugh again
). This is a new one for me and I'm not sure why they've suddenly developed. One leg is much worse than the other. Very strange. Have you had any difficulties with varicose veins? I bought compression stockings and am wearing them, which helps, but clearly I will need to have these removed at some point. They hurt and I have no tolerance for pain!
My husband thought it would be a good idea to see a rheumy to either confirm or deny the PCP's DX. So, I have an appt. scheduled. I hope that he will run the proper tests so that we know for sure what we are or are not dealing with.
One more question, if you don't mind. You said you've been on Plaquenil on and off. Have you ever had any eye problems b/c of it? Are there other meds they can give you instead of Plaquenil? If I need to be on meds for this, I'm afraid of Plaquenil b/c I have glaucoma and don't want to take any additional risks with my eyes.
Hope you are continuing to do well!!! Thanks for all the great information! Karate Mom
Yes, everything just keeps coming at me. A couple of years ago I went to see an acupuncturist. He surprised me one day by telling me (after the first time I ever went kayaking) that I was NOT going to feel any pain the next day. I had fibromyalgia pain really bad at that point. I was skeptical but took the herbals that night, and I NEVER had the pain from the kayaking, also I NEVER had that SEVERE pain (like a mac truck) again. In fact, my pain diminished so much, no other drug had made me feel so good. I was finally able to DO things again. I do still get the same pain, mostly in my shoulders, but not as severe. My neck pain which used to be stiff and painful all the time went away too.
At that point I did have a turnaround. I started more supplements, took my plaquenil on time everyday, and was kayaking/exercising, even started walking. Some of my symptoms, including tingling on my face and burning on soles of feet, plus neck stiffness, disappeared. They were gone for a while, maybe a year, and then reappeared this summer. Coincidentally right after I stopped my plaquenil and chinese herbals.
Anyway, today I went back to my acupuncturist. Of every doctor I've ever seen, I always feel best after seeing him. He listens to every word I say, and remembers everything (or at least looks over his notes before bringing me into his office). He gave me a new herbal that is meant for my newer symptoms, weakness in the legs, cold/numbness, neuropathy, without visual signs of edema. He said my legs should feel a lot better in 2-4 days. I also am decreasing my other chinese herbals. This is exciting to me. The first difference I have noticed already is that my coldness is not here tonight, but I have had slight burning (which I haven't felt in a while). I'm pretty sure this herbal is going to work on my circulation.
There are definitely things you can try if you can't take plaquenil. And there are a number of other medications that a rhuemy would prescribe. Sulfasalazine is one. Plaquenil doesn't work for everybody, and some people can't use it because it bothers their vision. I have gone to the eye doctor once a year for plaquenil checks. I have been fine in the 5-6 years that I've taken it. Just recently they checked me for glaucoma because I am at higher risk with the type of vision - nearsightedness - and whatever other clues the doctor had. I checked out okay. I do not know if glaucoma would affect taking plaquenil, but it might just based on your feelings about it.
I think it is a good idea to see the rheumy to confirm your dx. Supposedly the tests will show a marker that is NOT there for other autoimmune diseases, like lupus or scleroderma or RA. I have asked my rheumy countless times if she's SURE I have MCTD and not one of these other diseases. She says it is definitely MCTD. However sometimes I feel she disregards some of my symptoms as not related because I don't have lupus. I believe I continue to have these overlap symptoms of a number of the diseases.
It's interesting that you mention varicose veins. I just noticed the last couple days that I DO think I have some in my ankle areas that get weak. And that coincide with my numb path. The tops of my feet seem to be more veiny as well. And for the first times I noticed my hands bulging, when I raise them the veins go down in 2 seconds, then lower them and they bulge again in 2 seconds. I'm worried about this. I seem to feel better when I wear looser socks though. I don't really know what compression socks are yet. Are they tight?
Let me know when you get some more answers! I hope some of this info helps.
P.S. When something is really bad, I remind myself that "this too shall pass," and that helps me to keep going. Until I got the very painful neuropathy and read that the tests might never show anything, that got me pretty down. But I'm going to keep trying and depending on how I feel this week I may put my neurology appointment off a month. I do not have the money for an MRI or Nerve Conduction Study, and I'm afraid that might be all they want to do at first. So I may have to wait. I can only do what I can do!
Hope you feel well too.