Hi Deb, I'm interested in what your doctor has offered in the way of treatments, as a comparison to what happened to my daughter.
She was admitted to hospital by ambulance a few years ago when her heart began racing.
She told them what she had but they completely ignored her. They had no knowledge at all of either CFS or M.E.
Her requests for a darkened quiet room were ignored, as was her advice that any blood pressure tests must be done while she is sitting up, not lying down. It is when sitting or standing that the blood pressure drops.
Test that were done were a complete waste of time. They just didn't know what to do and didn't want to be told.
They were very rude, unsympathetic and uncaring.
As far as drugs go, she is very sensitive to them as a general principle, and will always start with a tiny dose-a sixth or a quarter, for a few days to see what happens. She also researches it before agreeing.
You can also get a reaction to the fillers used!
Exercise. If you have M.E. it is very likely that exercise will lead to a sudden relapse. You may be similar. Any exercise should be started very gradually, in tiny increments, and any adverse reaction looked for.
Many CFS 'experts' insist on an exercise routine.
In fact, rest as soon as the illness presents is the best way to lessen its impact. But if you can't get diagnosed quickly, it may be too late.
Fatigue is not a necessary symptom with M.E.-some have it, some don't. My daughter doesn't.
Was your fatigue illness rapid onset or gradual?
Is your doctor still investigating possible causes of it?

The more I read, the less I feel this could be an issue for me.

I know we can react to fillers in meds. Often times when a person reacts to a med and calls a company, when asking about the fillers, the company will have no idea what's in the fillers. To me, they have no business listing the med as gluten free if they do not know what is in the fillers. This has happened to me more than once. Just as your daughter takes a tiny dose, that is what I think I should do too.

I walk every day without issue. Well, my feet hurt and sometimes one knee, hips...yet I keep going. Neuropathy can do that to a person.

I think my fatigue was gradual, but I have had fatigue for so many years now, I'm not sure anymore.The fatigue as of late seems much worse, yet I can't say if it came on fast or not. Not much help am I?

I find it can be hard at times to remember this sort of thing, too. I now keep a diary and note all medication taken and the time, as well as a brief note on significant symptoms.
Is a leaky gut referring to reflux? This can be a symptom of M.E.
The health of the gut is vital to your overall health, and is the first thing that you need to treat.
A quote from the HFME site:
Some of my biggest mistakes include the following:
Not fully understanding the enormous importance of gut health and of diet. As I have recently learned, good gut health is vital to recovering from any disease as the gut houses half the body's detoxification system and half of the immune system. Food should be treated with the same respect as a prescription drug.

http://www.hfme.org/treatmentconcepts2.htm#703252345


Have you had comprehensive allergy testing done?
What is your doctor currently doing for you, or have you both given up on each other?

I eat very healthy, just not a wide variety of foods. I am intolerant of many foods, figuring it all out by trial and error. I have finally found the foods I do well with, and stick with them. I have decided, unless absolutely necessary, I will not take meds...they always cause a flare with my leaky gut.

I have not given up on my doctors, nor them on me. They respect my thoughts and I try to do whatever they feel I should try, within reason. They know I will only use meds as a last resort and never pressure me.

My food issues are not so much allergy as intolerance, which is much harder to test for and very costly. Over the last 11 yrs, I have figured a lot out on my own, often times asking the doctors for certain tests and they usually have no issue working with me. When I went on the candida diet and started losing weight I realized I had finally found one answer. 95# later, I am much happier, still learning though.

Yes, intolerance is the hard one. It's all so hard to sort through and try to spot any differences.
Have you considered a naturopath for a different assessment?

I have thought about a naturopath, but none are covered by my insurance and I just do not have the money available for uncovered care.

I think I have my intolerance's figured out..although I do want to have Alcat testing or Enterolab one day. Alcat may be covered by my insurance, haven't checked it out as of yet.

Have you tried pro-biotics and/ or natural yoghurt with a high bacilli count to get the gut healthy?

Oh yeah, probiotics kill my stomach. Being as sensitive as I am, I find if I just stick with the foods I know do not bother me, I do much better. I have a friend whom can not take probiotics either and neither of us can eat yogurt...both of us dairy intolerant. One day I may try to figure out how to make yogurt from my almond milk, but then still, you need some sort of culture to make the yogurt, and that seems to be the issue for us both. For some of us, the plainer the better..we do best without meds, probiotics, and such.

It will be 11 yrs gluten free for me in July. Over that 11 yrs I have learned so much about this old body of mine. I often times say I wish I had plain old celiac disease and not all these other issues.Life would be so much simpler for me then.

Life isn't so bad though. I am at a weight I haven't seen since I was 17, even wear a smaller size now than I did then. For now my fibro seems to be stable, and if I could get the fatigue under control, I would be much happier. As for the headaches, I have had them for so long, they seem like a daily part of my life now! Sad to say, isn't it?

So, how are you, do you have health issues too? Or have you told me? The memory isn't always so good either!

Have you tried goat's milk instead. I think it can be a successful alternative.
Do you think that your fatigue is actually caused by an inadequate diet, in view of the gut problems that you have?
Can be hard to get the right balance (whatever that is!) with enough fats, minerals, enzymes etc.
I've just read a book called The Diet Delusion, and that was an eye opener on the history of dietary advice. So much that we are told is just wrong, unproven or liable to lead to obesity.
Also describes how refined carbs seem to leech vitamins out of the body. The bad guys are definitely refined carbs, no doubts at all. Been known for a long time but it upsets the big companies so it gets no traction.
See if your library has it.

My ailments are mostly to do with a worn spine, so I get lots of pain in my neck, shoulders and lower back. This PC work is the worst!!! My shoulder just burns after just a few minutes of it.
I'm trying to minimise my pain meds and stay on the simple stuff, but I often need just a bit more. Usually I'll put up with it but then can't do anything as I just don't feel good.
No treatment for a worn spine, just pain meds or death!!! Trying the first one....

I'm happy to hear you made the right choice!!!Once when I asked a customer how he was doing, he said to me, "Well, I'm just happy to be looking down at the daisys instead of pushing them up!" I use that line often!

I will do a search at our library for that book, if not there, maybe in Amazon. I find often times you can buy used books in Amazon for next to nothing and I have never received one that didn't look like new.

My back has been givign me problems as of late, my neck/shoulder area all the time. Sometimes when I am sitting here, I keep an ice pack on my neck (I keep this rice filled pad in my freezer)..I find ice and/or heat work the same for me, just depends on how I am feeling at the moment as to which one I use.

The only carbs in my diet are in my veggies and nuts and they are very low in carbs and good carbs at that. For the foods I have left that I can eat, they are all very healthy. I eat no sugar other than the natural sugars in fruits, only use stevia for sweetener, make my own almond or walnut butter, my own almond milk..actually I feel I am eating healthier than I ever have. Thankfully, I do not get bored with my food. That's not saying I never miss the things I can't have. As sick as I get when I eat something I can't have, it's enough to keep me from touching any of those foods.

After being so sick from the meds, I haven't even tried taking an ibuprofen for pain. When I walk, my neck/shoulders scream, my knees ache, and my feet cry, yet I just keep telling myself this is my medicine and I must do it for my health.