Not sure if you are speaking to me or DMOM.

Before the diagnosis of fibro, my neuro had me try PT for 11 weeks. He thought PT on my neck/shoulders may help the headaches. At the time I was only having trouble with my left side. The moist heat felt great, then one person would come in and do a gentle massage, then the therapist would come in and do a more intensive massage. After that, I had to do some band exercises and a stationary bike exercise, then another short massage. By about 6 treatments, the right side began to hurt. By week 11, I was in more pain than when I started...the neuro said no more PT for me.

I was on Topamax for over 1 year with my first neuro, which did nothing, the neuro I have now took me off it.

I went on a candida diet to help with my leaky gut, lost 95#, am thinner than I ever have been in my adult life, walk daily in good weather (can't walk outside in winter months, my Raynauds causes too much trouble), then came my appt with the rhuemy.

The rheumy put me on Meloxicam, Flexeril, and 325 mg aspirin daily. I got very sick, the combination caused a flare in my leaky gut. I told him about it, so he thought he would give me something for my stomach, which I refused. I did mention that I can take Aleve 2x's daily, so he told me to increase it to 2 pills at lunch, 2 at supper, and a baby aspirin...caused more problems with my leaky gut. So, now I am not taking anything except Celexa for the anxiety it all caused. Finally, after 6 weeks I am doing much better leaky gut wise, yet still have the pain. I can deal with the pain much better than gut issues. Our nasty weather has been very hard on my arthritis, but I am holding my own.

Now if I can get my extreme fatigue under control, I will be happier.

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.

I am on medication at this time. I chose not to do the vitamins and herbs that a fibro doctor that I went to see suggested. I wasn't interested at
the time. I will work through that option if I get worse.

I'm on gabapentin and a muscle relaxer at this time. And my other medications.

Donna

Beware anything in the media, especially in regards diet and health!
Do your own research.
Why are the advisory bodies ignoring tests that contradict their published views?
One doctor said it's because of: pride, profit or prejudice.
It's interesting to observe that since the demonising of animal fats, eggs and dairy, and the promotion of margarine, vegetable oils, grains and a low fat diet, that obesity and diabetes levels have sky rocketed.
Coincidence?
Western diets have been shown repeatedly to create health problems when there were none before, especially heart disease-there are numerous studies in people with high animal fat and little carbohydrate in their diets, who were very healthy but became ill as their diet changed. Main problems were obesity and heart disease.

So much media 'advice' comes from the wrong people, or subsidised by them. These lobbies are just too powerful to ignore or deal with, so they hold sway.
I'm currently reading Eat Fat, Lose fat, by Dr. Mary Enig.
Absolutely eye opening. This is a carefully researched book and I'd advise anyone interested in their health to read it, and find out what lies and deceptions have been, and still are, fed to us.
It goes through it all calmly and steadily and unravels the whole sorry mess.

On page 25, on the benefits of cholesterol (yes, it's essential) it says that low-cholesterol vegetarian diets can lead to leaky gut syndrome and other intestinal disorders. Cholesterol plays an important role in maintaining the health of the intestinal wall.
You should find this book in your library. It's a must read.

Thanks Peter, I will do a search for the book. I have been reading some very interesting books as of late too. One was called "Drug Muggers" , written by a pharmacist named Suzy Cohen...very interesting. The other day, I grabbed anotyher book called, ""Diabetes Without Drugs", also very intersting, that's when I realized it is written by the same pharmacist. She says all diabetes should go gluten free for their health and I do truly believe that also.

Doctors recommend so many meds, then they have to give other meds to counteract what the first meds are doing. It seems, often we are just torturing our bodies with all these meds when often times the first problem is our diet.