I am really glad your doctor is being proactive and is much better than your last one. My doctors have not been very helpful overall, but my doctor recently suggested physical therapy for my fibromyalgia pain and a case of plantar fasciitis that I have as well. I have found it to be so helpful. I was limping very badly and lots of people have noticed that I am walking better. So, if you have time for PT, it might help you to feel better. I wish you all the best. May you be very blessed and find greater wholeness. Many blessings.

How lucky you are to find a doctor who is even willing to learn, my doctor is not willing.

I've been giving myself B12 injections for years, a full syringe 3 times a week. I stopped for a few years now because I didn't feel much better and on my blood tests my B 12 is so ridiculously high.

For good sleep I take 40 mgs. doxepin, 1/2 to 1 ambien and 4 mg Klonopin. I want to get my klonopin dosage down to 2 mgs but it's a hard med to taper.

I did have a knowledgeable CFS doc who prescribed the 3 times a week B12 dosage.

Thans for your kind words. Unfortunately here in New Zealand unless physio is needed due to an accident its extremely expensive to access. As are other more natural remedies like accupuncture, Osteopaths and Chiropractors. Something I'd like to petition our government to look at changing.

Hi hollie9

Yes I got lucky this time. However its taken 15 years battling Endometriosis and then ME and fighting with many doctors along the way for this to happen. I'm amazed that with so much research about ME happening recently that so many doctors still choose to remain in the dark about it.

I understand that B12 isnt going to work for everyone. I did discover something interesting though that even though B12 levels can seem fine in your blood tests it is actually the levels in your cerebrospinal fluid that give a more accurate level. Often those levels remain low even when the levels are normal or high in your blood work. People may find this link interesting to read in relation to this.
http://drjonathancollin.com/letter_B12.html

Thanks for the advice on what to use for good sleep. I will go and look up what those are called here in NZ because often the names differ here.

Ah, I see what you mean about physical therapy not being covered by insurance. That would make it out of the question for me as well. I'm so sorry you have suffered so much with doctors. I'm glad you finally got a good one. Many blessings.

I'm not saying the B12 does nothing, for awhile I really thought it was helping. I believe the real cause for stopping was my laziness (or tiredness) to give myself the shots. But now that you bring this up I will give myself a shot right now.

I am using cobalamin but I did get a methylcobalamin shot at a Natureopath's office and it was much, much better. I can't get ahold of any to have at home, I think it needs to be blended or something. I would highly recommend methylcobalamin.

Of those meds I listed, I take them at night and have a good sleep. Doxepin is the king of good sleep, an old time antidepressant that hasn't had any horrible side effects in the decades it has been on the market. Plus it gives me a bit of an antidepressant lift even at such a low dose (minimum dosage is 75 mgs). It also got me through menopause with zero symptoms, says my regular doc.

I'm surprised there aren't many informed doctors either. CFS groups have sent out doctor packages and tried to educate them but it didn't take.

You can't educate people about a matter which they believe does not exist.

Thanks for that hollie I've compiled a list of things suggested here and other things I've found in my research to take to my doctor when I see him in a couple of hours.

Featherjack is right though its hard to educate Doctors when the vast majority of them are convinced ME is a mental condition rather than a physiological condition. Even with all the evidence coming out regarding it.

In my research over the last couple of days I did come across an interesting book called "Reviving The Broken Marionette" by Maija Haavisto. Through consulting with various doctors that specialise in treating ME she has put together a book listing meds and treatments that patients have success with. You can purchase the book on Amazon or there is a free abridged version here
http://www.brokenmarionettebook.com/rbabridged.pdf

I found it very helpful and others might also.

I have a list of medications and supplements that have worked pretty well for me for several years which I'll share with you. It's only the last several weeks that I have gone into a crash and nothing seems to be working all that well.

The first doctors that I went to were at a clinic specifically for cfs/fibro. They worked on my thyroid, adrenal glands, sleep, hormones, and nutrition. They prescribed methylcobolamin (B-12) for me to take at home (1cc 2x per week). They also had me take nutritional IVs which contained vitamin C, the B vitamins, D-Ribose, magnesium, trace minerals, and Folic Acid. Both the shots and IVs were hugely helpful. For my thyroid, I took a Rx of T3/T4. For adrenal glands, I took a low dose of hydrocortisone and then later a supplement called Adaptacin which is a booster. My doctor also regulated my estrogen, progesterone, and testosterone. For sleep, I initially took Ambien, but now I take trazodone which is generic and works as well for me. It's been around for a long time and is considered to be safe, although who really knows.

Additional supplements that I take are Acetyl-L-Carnitine, N-Acetyl-Cysteine, Alpha Lipoic Acid, Zinc, Co-Q10, Spirulina and/or Chlorella, DHEA/Pregnenolone and digestive enzymes. It sounds like a lot and it is, but I was too sick to function and felt lucky to have discovered this clinic. It was all worth it, and I was able to continue working as a teacher for three more years before I was able to claim retirement benefits.

Hope you can find some things that help you, and I wish you all the best...
Sanni

Oh, I forgot to mention that my docs gave me medication for candida, too. I follow a very strict diet with no sugar, and that helps hugely, too!

A friend of mine went to a health clinic and got intravenous infusion or Vit B12 and magnesium for a sinus problem which helped her. Isabelle1954

sanni, that clinic sounds fantastic. How wonderful for you!

ghostrocker, pool therapy can help, though you did say pt was difficult to obtain. I also take a transdermal of ritalin that's working well enough, although if your in NZ, I understand that's only prescribed for adhd. I've heard the laws are very strict.

Trimipine (sp?), trade name Surmontil helped me sleep. I found it, for myself, to have less s/e than doxipine, though they are from the same category (tca's). I use tizanadine now, a antispasmatic muscle relaxant. Very sedating, I take 4-8 mg and reliably sleep. A bonus is it really helps fibro stuff. (Also called zanaflex.)

I didn't know one could self administer b12. A friend suggested them.

My doctor that I go to who is on my insurance plan is a D.O. He is more than happy to give me steroids and Xanax which I can't take because my body is too sensitive for meds but he will only give me one B12 shot per month because "oh no... we wouldn't want to overdo it." I get a little burst of energy for a couple of days and it feels great. My holistic MD says she would give me a B12 shot every week but she's not on my insurance plan (which is medicaid) and I can't afford to pay cash. It just makes me furious. I know some people have been able to give themselves B12 injections. How do you learn to do this? Where do you get the supplies? How much does it cost? If I could just get one every other week it would be helpful!!