Those that know me will know that I have systemic EM with Sjorgens . Sjorgens has got so bad that my eyes are dreadful, I am really struggling. My voice box is affected most days too. Thats ok if you want to work one of those suspicious phone line services. Its so deep and husky lol!
I was thinking of trying Chinese herbal medicine.
Has anyone tried it?
Wishing all Sgrinn-ers a 'comfortable' day
Hi Mads. Please forgive my ignorance -- what does "EM" stand for? If you choose Chinese Medicine, I recommend finding a practitioner who is very experienced -- and one from China would be ideal since they grow up with this medicine and have a deep knowledge of it. I go to a young acupuncturist who, in my opinion, must have been the best in his class. He has a lot of knowledge but, so far, he's been working hard on my digestive problems from SS and is now going to hone in on my pancreas -- which SS attacked and put out of commission as far as digestive enzymes. Now he going to move my formula over to healing the pancreas. He put my long-time hypo-thyroid back to normal levels in 5 months so I have confidence in him. But I would still recommend someone who is an expert because I think they will get to the root of it all faster. I hope it goes well for you!
Im so sorry. So use to abbreviating EM = Erythromelalgia.
What has he been doing? Interested to know more.Are things improving for you?
Gosh, Mads, that sounds painful. I looked it up. Chinese medicine would probably refer to that as a "heat toxin" and they would try to cool it down using herbs, etc. I basically go in and it's great -- because it's one place where someone really listens to you and asks you questions. He does acupuncture and moxa on me (which is an herb that he burns over some points to put heat into them). Then I usually go home with a formula to mix with water 3 times a day (mine kind of tastes like coffee so I like it) which is specific for the symptoms I am having at that time. The herbs have been helping my digestive tract to calm down. He's the whole reason I even found out about my pancreas problem -- he gave me a test kit to do and send in to a lab in NC. But it seems that the whole intestinal problem is because of the pancreas problem so now he is going to head straight for the pancreas with the herbs. I will let you know how that goes after I'm on them for awhile. Chinese Medicine does take some patience, but it took us a long time to get ill so it's good if we can be patient healing. My next appointment is in 2 weeks and I'll get the new formula then.
I have never tried Chinese medicine. Thats why i am interested. You have really inspired me. I shall see if I can find one near me. Im UK.. I have to stay cold - does the moxa warm your skin?
Im thrilled its helping you. This S-grinn thing is terrible. My eyes are dreadful. Do you suffer with eyes? I mean today my voice gone. voice box affected. I get frightened when i cant swallow . What a bloody life lol!
Oh, you're in the UK! I hope you find someone good there. Yes, moxa is a very warm herb and is only used when heat is needed in an area. In your case, they would see you already have a heat condition so Moxa would be contra-indicated for that. I'm so thin (from the pancreas problem) so I have a cold condition, and that's why he adds heat. But no one should do that on you on your case. I studied Chinese Medicine for 3 semesters over 20 years ago but had to drop it because the tuition was climbing so high that I couldn't afford it anymore. I remember the basics, though, I think.
I've only told my guy recently to work on my dry mouth. I'm so sorry about your eyes AND your mouth. I agree about the SS. What a royal pain it is! Someone here mentioned taking Blackthorn oil (I think that was the name) to help with the dry mouth and eyes. I haven't gotten any yet, though.
There's something called "Thunder God." It is called another name too. I don't remember. I was excited about trying it. But, then days later I found an article stating that it has A LOT of really bad side effects if you aren't monitored. Now, I don't feel safe taking it.
My dermatologist told me that using Tea Tree Oil is very good for our SS skin issues.
Hey Mads….as a side note, I know the feeling when the eyes are just horrible, no matter what you do but I really hate the voice bit. My voice goes from coming out soft or halfway and cracking some days. Other times, it goes completely out like I have laryngitis. Its beyond annoying. I take eating very slow now with sips of water even when I'm having a good day because I find that I get caught off guard as soon as I don't.
I am very into the idea of essential oils and herbs, massages,etc but just don't know enough about it but this thread is definitely helping with that.
Sjoggies do have it tough but ya gotta just keep going.
I don't have any experience with chinese medicine.
Do you have a problem with your mouth/throat at night? I do and I've only found a few ways to deal with it.
For the longest time I went to sleep with a cough drop. Which horrified all the Drs. I told and they all begged me to stop. As they were afraid I would choke on it, which could be very very bad.
The best thing I've found is using my CPAP machine w/ a humidifier. (A wonderful sideffect of the treatment for my sleep apnea).
More recently I discovered (on this site actually) about XyliMelts for Dry Mouth. Their little mints but one side sticks to the side of your mouth.