Acupuncture?

[Sophiamama]

I was just diagnosed with Sjs this past Nov.  I take Planquenil, and other RX/OTC for the eye and mouth symptoms.  The most debilitating symptom for me is the fatigue.  Thy rheumy says that there's nothing to be done for it.  He seems very conservative to me.  Does anyone take any rx meds to treat the fatigue or try any other alternative therapies.  I am willing to try most things.  Right now I drink apple cider vinegar every morning - which is pretty disgusting.  I want to feel like my old self.  Help!

[Leisa]

Hi, i'm a newbie here but have been reading here for several months and it has helped me a lot! I realize i'm not the only person sufferinf from this ugly disease.
Were you thinking of trying accupuncture? I tried that several months ago and was surprised that it did help but just temporarely!! In ordewr to stay pain free you need to have the injections at least 3 times a week! Insurance does not cover this expense so it is too costly for me. I was having a flare at the time i had the accupuncture so i had some immediate relief but only lasted a couple of days. So sad that insurance will not aide us in trying something other than western medicine.
Take care and let us know how your doing.

[dbab]

There is a lot of controversy over the meds that some docs use for fatigue (i.e. Provigil).  These work kind of like an amphetamine so there is a lot of scrutiny over addiction, abuse, etc.  Most docs will not prescribe them unless its an extreme case. 

As far as alternative medicines, there are all natural remedies but you must get the all clear to use these so they don't counteract with your meds.  Do you work?  I work full time and it makes this so hard sometimes.  With that and trying to fit everything else in the day and still get enough sleep makes everything worse.

I wish I had answers for you but I wanted you to know that I know how you feel.  Fatigue was the worst symptom for me from day one, unfortunately pain is a close second

[Epson]

I have been complaining about extreme fatigue to some of my doctors as well as brain fog.  Yesterday my neurologist brought up the idea of a sleep study as he did last month, as luck would have it, someone canceled their appointment and I was able to do my sleep study last night.

The theory is, I might not be getting enough deep sleep due to apnea, irregular brain waves or decrease oxygen from a collapsed airway.  I don't have the report yet and as you know the technicians are not supposed to give you the results or their opinion, but I usually am able to get some information (must be my charming personality) from them.

The technician said the test was not a waste of time, then I got her to tell me more, I stop breathing more than the normal person, but not extreme, leg jerking like she has never seen and very high Co2.  She said she wasn't sure what course of intervention that the doctor might prescribed and wasn't sure how to interpret some of the brain waves.

I was told that fatigue and what people call brain fog are often related to poor sleep and only deep sleep allows the body to physically and mentally replenish its self.  Hopefully they can find out why I am so fatigued and maybe others at this site have the same problem, I will be happy to share the results when I get them.

[LAU]

that's so interesting about not sleeping right. i thought the fatigue was more related to the body wasting its energy attacking itself.
like you know when you get a cold and you just feel knocked out because you're body is fighting off the virus?
i feel like that's what it is all the time. the fatigue makes me cry sometimes. i'm absolutely going to try acupuncture as soon as i get the energy to go 
in the meantime i'm going to go back to my doc and ask for provigil again because i just can't even get out of bed all day and night.
i used to take provigil as needed but i don't enjoy it very much, but its better than wasting my life away.

[JJ]

I agree about the sleep..I may get two whole deep sleep hours in a night...I hear every

noise...and then the snore of my BF is at least an eye opener for a few hours. But Epson

not sure if its the charming side of you that makes them want to tell you stuff or if they

just want you to go away. I know the bug them till they just tell ya to make you leave

angle works for me virtually every time....lol....the only thing that made me sleep were

the pain meds and muscle relaxers they gave me when first diagnosed...but I can not

function...so I just suffer it. Sleep when I can....my BF is good however about me taking naps

and usually suggests me not doing things around the house spouting something about

it wont fall down around our feet if you take a nap....but unfortunately I have that it has to

get done, or I have to check to see if the doors are locked at least three times thing going on in my

head. An OCD SJS patient....LOL

JJ

[Sophiamama]

Well thanks everyone for your input.  I am trying to eat healthy and that alone gets very expensive.  Too bad the acupuncture was only temporary.  It's good to know that there are others who know how I feel.  Best! 

[SassieCat]

Thanks, I really enjoyed watching it.  I love the way they harmonize and the type of music that they sing.  I've watched them on the PBS channel and they are really good.

Sassie

[SassieCat]

I had accupuncture for my fibromyalgia and it was really helping.  I even had a day without pain and was able to sleep better too.  Unfortunately the insurance did not pay for it and it bacame too costly to keep up with. 

I know that my girlfriend's sister suffers from TMJ and accupuncture is the only thing that seems to help her.  I'm a believer in it!!!

[Leisa]

Hello, yes i tried it too! It was very helpful for a couple of days. It was almost like immediate relief but too short lived. Also insurance does not cover or share in the expense so it is not cost effective that's for sure. I even had some saliva after i had it although i still could'nt spit! lol Too bad our country will not support us in anything other than western medicine.

[SassieCat]

I agree, it would be nice to have eastern medicine and less influence on drugs and surgury.  The health insurance I had while I was working was going to help pay for accupuncture beginning 2009.  Wouldn't you know.  Now that I am on retirement, even though it's the same insurance company, the plan is different. 

Just my luck.  The course of treatment I had was for 6 weeks.  Three times a week for two weeks, then two times a week for two weeks, then one time a week, and booster treatments every 6 months.  It was kind of embarassing as I fell asleep and was snoring.  The doc was pretty cool about it and just smiled and said it was good to see me relax.