Sushi

Hi,

I too have had absolutely spot-on diagnoses from several Ayurvediic doctors, both in India and the US. They mainly checked the pulses. Trouble was the remedies they gave me didn't help!

Amy,

I think I was looking at the same article but the link I found is:

http://www.fmpartnership.org/Files/Website...Explanation.htm

This research paper links fibromyalgia to the ANS. Interesting. I know that my very painful fibro has nearly disappeared with the treatment I am received for dysautonomia.

And to further Adria's comments, I have also found acytyl L-Carnitine very helpful. I take 2000mg. I was also told that if you take this you should also take Alpha Lipoic Acid ( I take 500 mg twice a day, which is again mid-range I believe). Taking the 2 together seems to be important as they enhance and support each other. Another doctor suggested taking benotiamin (a form of vit B1 with these 2, though I haven't tried this, though I do take 200 mg of co-Q-10 and since starting all this did notice a real improvement in energy.

Mary,

I am also low on D and supplement. It needs to be D3 and they just raised the recommended dosage. I take 2000 whatever units they are, and this is about mid-range according to some doctors who are knowledgeable about vitamins.

I too test low on B1, B12, and glutathione. I have been supplementing. Something is helping (course I am also taking meds) but I'd bet the vits are a part of it.

I take bio-identical hormones (post menapausal)--bi-estrogen (the 2 weaker types, I believe that premarin is the 3rd type, though I could be wrong.) I also take progesterone (also bio-identical, also oral made up by prescription at a compounding pharmacy. I get my hormone levels checked fairly regularly and the doctor adjusts the dosage as necessary. I feel better on them. And, I have bone loss, and that is another reason I take them.

Years ago I tried the Prempro stuff and was not comfortable on it at all. It works for me, but may not for you. Good luck.

Hi,

I take 2 meds that are supposed to be for ADD. My doctor is a dysautonomia specialist and has found that these meds help some of his patients with the dys symptoms--pooling, brain fog etc. There was never any suggestion that I had ADD, and I don't think I do either. I take strattera and adderall, both at fairly low doses and do find enormous help from both. I know we are all different so this is just to say that some dys patients respond well to these meds.

I tried ritalin first but it kind of dropped me all at once whereas I find the adderal (being a mixture of 4 amphetamine salts) wears off more slowly. If I have forgotten to take the afternoon dose of stattera, and stand up and try to walk, I feel like my legs are heavy elephant legs, which definitely reminds me to take it.

I also tried florinef but it gave headaches. Again, we are all different!

I am a library floor sitter too--don't even care what they think anymore, and as far as shopping malls--they seem to have a way of just sucking out the energy. It is more than standing, maybe all the chemicals. Subways in NYC in the summer--actually thought I was going to die and never took one again in the summer--air-conditioned buses!

Interesting sideline to this: The Blue Angels, Navy aerobatics flight team, are the only ones of such teams that don't wear G-suits to compress their lower body on extreme accelleration or those "fly straight up into the sky" moves. Instead they contract their abdomen, gluts and thighs to stay conscious and prevent pooling. They say the G-suits tend to get in the way of the controls (they inflate I think).

We've been trying to get someone from the Navy to teach these exercises to our support group. But I think you get the basic idea and it might help. Some of us do pilates to strengthen those same muscles.

Hi guys,

I too occasionally take a hot bath, particularly if I feel I need an epsoms salt soak for some reason. Here is a tip someone shared with me that has helped. When your bath is finished, pull the plug but stay sitting down and turn on the overhead shower--moving it from warm to quite cool, slowy. When you've adjusted to the cool and feel quite comfortable, slowly stand up, holding onto things for balance.

It takes a bit of fun out of the bath, but I have not felt a bit fainty when I did this. This is, of course, only for those of us who don't easily faint or have plenty of warning signs first. Agreed, drowning ain't worth it!

My other main sin is overdoing it--really getting into something and not being able to stop, even though I am starting to get my little chest pains warnings. Thiis one I pay for later. But after the enforced lethargy some of us have lived with, it is really hard to stop when you get into an activity you love, whether it is exercise or writing.

Hi Luckycharm,

Isn't it great to come out of a Doctor's appt feeling hopeful?

I've had good results with Adderall. I was started on a low dose and slowly upped it to a moderate level. It has helped a lot with brain function and energy. It did suppress my appetite at first, but it is slowly returning.

Hope you have a good response to it.

Persephone and others,

I've had fibro for many years and was positive for all the trigger points. Pain was a BIG problem--even turning a door knob

Then I was diagnosed with dysautonomia and treated for that with a number of medications, and guess what? Over the months the fibro has gone away almost entirely, which does make me think it also has a neuro origin. The medication that did it for me was strattera. It was prescribed because it has helped many dysautonomia patients in various ways, but for me it also worked on the fibro. I was dreading growing older with more and more pain medication.

I take cymbalta 30 mg and it is very good for me. Wish I'd had it years ago! Two other patient friends have noticed big improvements after starting cymbalta too. So it is one of those "find what works for you" situations.

I don't know why it works, but cymbalta helps me and a few others I know, a lot. I take only 30 mg. Definitely helped with brain function and that tendency to sometimes feel I was jumping out of my skin. I am just much more comfortable in my body with it.

That said, it was hard for me to get used to and I had noticable side effects for about a week. But now it is one of those I would not want to be without.

For air travel, just book it through the airline--a courtesy service. I am planning a long trip and will request one to avoid standing in long lines and struggling to carry hand luggage. You should be able to get one from the moment you do curb-side check in.

Did the provigil work immediately for you? I have been trying it for 3 days (cutting them in half) and so far I haven't felt any effects but headaches. I'd so love for this drug to make a difference?

I also researched the generic date and found about what you did. But I believe you can buy it from other countries (India I think?). Hope you can tell me that it took a while to get used to it and then it did its magic.

I got the arctic heat vest from the Australia site rather than the US site cause they offer a medical discount. Pro--it is very lightweight and looks "normal", con, it doesn't stay cold as long as the cool vest. If you want to order it put a note to Sue in the comments section and ask for a medical discount. It came to $134 including shipping. I love mine.

So sorry about the fatigue. Most of us know exactly what you are talking about. I discovered (after a month) that clonodine was actually causing much of the fatigue--it just wasn't for me, even at the very low dose I was taking. Have you been taking it a long time?

Now I am taking adderal, which helps a lot, but you may have conditions that prohibit that. Wish you the best.

I love my cool vest and never go out without it, in daylight at least. I carry a small cooler bag with freezer blocks and pop the vest in there after the car cools. When I am going somewhere with a fridge, I stick it in the freezer till I leave. It is making summer do-able, and I am in Florida.

Mine is the arcticheat one, ordered from Australia with the medical discount and including shipping--$134.

Hey for those of you who have had sleep studies is there a protocal about keeping on with your meds, dropping some of them (like ambien) or is it up to the individual sleep doctor. I am going to do one and doubt if I would sleep at all without at least some of my meds. Would appreciate your experience. Thanks

I can't remember whether I posted it here, but I have one from Arctic Heat. Instead of pockets where you insert frozen packs, it has built in "ribs" of gel that freeze when you pop it into the freezer. It weights about half as much. They also give a medical discount. I ordered mine from the home site in Australia and it came out less expensive (even with postage) than ordering from the US site. You can also pop it into the microwave in the winter. They make several types of "garments" I also got a head band. Here is the Australian site. You have to ask for the discount. http://www.arcticheat.com.au/

I use it whenever I go outside. If I am driving, after the car cools down I put it in a light weight cooler with an ice block till I want it again.

I was told by a health practioner that vit A at that dose should only be used for 3 days. You might want to research it more on the internet.

Hi,

The thing about the herb butterbur, is that there are some toxic elements, but Petadolex is licensed from a company in Germany (Weber and Weber) and they claim that they have purified the butterbur of those elements. From the research I did, I would only use the Petadolex product, which in the US is supplied by Enzymatic Therapy. To simply take butterbur itself could be risky long-term.

Hi Dayna,

Petadolex has stopped my migraines completely. I used to get them at least once a week. I've taken it since last summer. It is much cheaper online--$25 a bottle and if you buy 4 bottles, free shipping. It has been truly great for me. I get it from Herbspro.com. They say that after the first month or 6 weeks, you only need 2 a day, and that has been my experience.

Heidi,

There is a specialist (only treats autonomic dysfunction) In Pensacola. I see him and he is great. He also has POTS, so totally understands. He also understands people's need for disability. If you want more info, just ask me.

Best wishes