Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fibro seems very differant then A.S....HELP

Hi ValsMum, unfortunately no my ESR is low right now...2, but it was a 6 when I was diagnosed. Can't remember the CRP...but it was low too the last time they did it...so it doesn't seem to be much of an indicator of my disease activity.

I have a pretty clean diet but I know what you mean...unless we grow it hard to know what the value is...and most of our fruits and veggies are coming from California or South America...long transport...I grow kale and Swiss shard all winter...but buy the rest....I read about the mucinex..and see what I think.

thanks very much.

Hi Laurel,

I was a little concerned with the 5-HTP your taking. I know in Canada it has been taken off themarket as far as I know. This is why

5-HTP (5-Hydroxytryptophan) is a chemical by-product of the protein building block L-tryptophan. It is also produced commercially from the seeds of an African plant (Griffonia simplicifolia).

Don’t use 5-HTP until more is known. 5-HTP might be UNSAFE. Some people who have taken it have come down with eosinophilia-myalgia syndrome (EMS), a serious condition involving extreme muscle tenderness (myalgia) and blood abnormalities (eosinophilia). Some people think the EMS might be caused by an accidental ingredient (contaminant) in some 5-HTP products. But there is not enough scientific evidence to know if EMS is caused by 5-HTP, a contaminant, or some other factor. Until more is known, avoid taking 5-HTP.


I pasted this from Web MD

Amitripyline would probably be safer and is well researched for years.

There are some that are helped with a decongestant but Fibro lies in subsets as well and doesn't help all. I have never hurt in my lymph nodes with Fibro. They used soft points to diagnose Fibro clear up until recently, thank goodness. They used that old diagnosing back when they were doing trials to see what was causing so many people to hurt. Now they know it hurts all over. It hurts systemically everywhere and makes you burn like a bad sunburn. Most of the "Guru Fibro Dr.s are toting supplements. Some help and some don't.

Thanks for the warning...I will check with my Naturopath...who prescribed it...Funny though, I live in Canada and it's on the shelves in BC...But I will check into it.
Thx.

Thanks Pea...

Hey Laurel,

I don't have Fibro but was very interested to read your thread....I hope you can start to find some relief from your pain!

I was given a great book once by a pain psych called "Explain Pain" - it talks about how pain technically IS in our heads - it's our brains receiving messages from around the body but that does not in ANY way mean it is not real and does not get us down!! That was a huge help to me as for years Dr's have fobbed me off with "it's in your head", "you're trying to get attention", "ignore it and it will go away"!!!

Hope you can find something that works for you

pasted this here in case anyone else takes 5 HTP and is worried...I am not worried as my Rheumi, GP and Naturopath support me taking it...But I appreciate the warning and will ensure my blood work is good.
Thanks again.


Eosinophilic Myalgia Syndrome & 5-htp | LIVESTRONG.COM
www.livestrong.com › ... › Amino Acid Supplements › 5-HTP
Sep 7, 2011 – Eosinophilic Myalgia Syndrome & 5-htp. L-tryptophan and 5-HTP are widely used , 8220natural8221 alternatives to prescription antidepressant ...

Thanks!:)

Hi Laurel, I don't have much to add, but just wanted to say I hope you and your doctor can come up with a treatment that helps soon. Best of luck!

PS, if you're able to do some gentle exercise, and your doctor/physio/naturopath has suggested that you do, then it may help the pain. Just listen to your body - if it hurts too much, don't push it. Also check out the No Starch Diet (NSD) - it's helped many people. One more thing, I don't think that blood inflammation markers are the only indicators of disease activity. My mom and I have never had elevated markers - and she's fused all over the place (and still very active I might add). One of your best weapons in the battle is educating yourself and it sounds like you're well on your way. Ok so maybe I did have a bunch more to add... lol

Thanks Megan, that was very encouraging and confirming!:)