Anyone feel like this?

[maryb]

Yes, feels like anxiety and just might be but I believe it is the inability of the autonomic nervous system to regulate itself. Your symptoms are pretty pronounced. I'm a big believer that everyone with CFS should have an Brain MRI with contrast. The contrast is important because they cannot see tiny tumors on the pituitary with regular MRI. I think that might put you mind at rest about the brain tumor if you haven't already done it.
I started having migraines and my neurologist found a partially empty sella that is a result of the infection i'm sure. That is when the membrane around the pituitary gland is ruptured and the spinal fluid starts to leak in and flattens the pituitary. My understanding is that some CFS people experience this. I should probably mention that pituitary tumors are almost always benign.
It's certainly worth checking out.

Wish I'd known to ask about the contrast MRI - just had one done which showed nothing - so my neurologist said over the phone - I suffered from horrendous pressure having to lie down in the scanner - for nothing it seems. Life with ME.

 

[Fuzzyhead]

I have had 2 mri's over the years and none with contrast and nothing showed.

 

[Zensational]

It's probably that a CT scan is cheaper and insurance will pay for it. Perhaps if something interesting shows up on the CT scan they will then send you for an MRI. If that happens please ask them to do the one with contrast. My doc did one with and without contract. Not sure why I needed both.
The pituitary, hypothalamus and the adrenal glands seem to be affected by ME and thus the variation in symptoms.
When I first became ill in 1984 I was having motor issues, falling when walking up stairs. Thus the MRI. The neurologist found my enlarged pituitary gland but discounted it due to the fact that I was going through menopause. Almost 30 years later when I started getting migraines they found the partially empty sella.
Please let us know the results of the CT scan.
Try not to be discourage by the doctors discounting you. I've had to do a lot of forgiveness work around doctors.

 

[Fuzzyhead]

I am not getting my hopes up they will find anything. It's the debilitating fatigue that's worrying me, it's there 24/7.

 

[Zensational]

I hear that. The only encouragement that I can give you is that I have had this for 29 years and I am able to have some semblance of a life. I was very sick at first but decided to the go the alternative route. Good call since the medical community has little to offer me. I am able to work from home albeit part time and sporatic, and I have a social life as long as I pace myself. The fatigue is debilitating I agree. I am very proactive in alternative health but it can be pricey. I am finding that the less I eat the better I feel. The worst thing I can do is get constipated and backed up with toxins. I take an herb called Moringa everyday religiously. I do alot of other stuff. I try not to feel sorry for myself because that is a slippery slope to depression. I must say that is hard to do some day. That's why this forum is here. We are not alone.

 

[Fuzzyhead]

I have had m.e for 12 yrs and I used to get fatigue if I overdid it etc. I don't know what's happened all of a sudden with all these symptoms and now the fatigue is there 24/7. I usually can cope and get out and about etc but I haven't been able to move out of the house much in the last month.
I usually go the alternative route too with supplements and osteopathy etc but I can't understand why I have gone down hill.
I know 2 days before all these symptoms I was getting really sharp pains in my spleen area all day. I used to get some pains in that area before a little relapse but this time it was every 30 seconds all day. I don't know if it's my spleen that is telling me it can't handle something like toxins or infection?

 

[Zensational]

I have had m.e for 12 yrs and I used to get fatigue if I overdid it etc. I don't know what's happened all of a sudden with all these symptoms and now the fatigue is there 24/7. I usually can cope and get out and about etc but I haven't been able to move out of the house much in the last month.
I usually go the alternative route too with supplements and osteopathy etc but I can't understand why I have gone down hill.
I know 2 days before all these symptoms I was getting really sharp pains in my spleen area all day. I used to get some pains in that area before a little relapse but this time it was every 30 seconds all day. I don't know if it's my spleen that is telling me it can't handle something like toxins or infection?

Well while you are waiting for the medical stuff I don't think it would hurt you to do a liver detox. You can do that by juicing or other methods. Lemon Juice is a good detoxer.
Here's a pretty good website about liver toxicity.
http://www.globalhealingcenter.com/natural-health/symptoms-of-liver-toxicity/

Looks like I need to do this myself. Heel makes a really good homeopathic detox kit. I've used it before with good results. It detoxes a number of systems. The reason I'm saying this is that we CFS people seem to have impaired digestive systems and thus the toxins build up is we are not eliminating properly. I know I am much more symptomatic when I am toxic.
All this in in conjunction to getting the medical tests done. Hopefully, they won't find anything you will feel better.

 

[Fuzzyhead]

Thankyou.
I don't know if I should do the liver detox yet because my liver function test was raised. I had other bloods done for hepatitis etc and they were ok. I am having an abdominal ultrasound on Friday to check my liver. Its been high before since I have had m.e and then it goes normal again. If its ok I might give the detox a try.

 

[Zensational]

Well you know your body better than anyone else. Sounds like a good plan.

 

[Fuzzyhead]

Just read the liver detox article. Very interesting because I have just said my liver function was raised and my gp said it could be inflamed. After reading that it describes me, fatigue and depression can come from the liver. Like you say it might be toxins etc.

 

[vamah]

Thanks vamah. I am seing an immunologist next month so I am going to ask about lymes etc but I have heard the tests in the uk aren't reliable. I know I have been tested for lupus in the past and some autoimmune stuff. I always say that I am anxious because I am ill not I'll because I am anxious.
I just wonder after 12 years why these problems would appear.

Unfortunately, lyme tests are notoriously unreliable everywhere. A lot of false negatives.

 

[Zensational]

Just read the liver detox article. Very interesting because I have just said my liver function was raised and my gp said it could be inflamed. After reading that it describes me, fatigue and depression can come from the liver. Like you say it might be toxins etc.

Very likely, I'm detoxing right now.
.

 

[Tammy]

fuzzyhead.......you said.........I know 2 days before all these symptoms I was getting really sharp pains in my spleen area all day. I used to get some pains in that area before a little relapse but this time it was every 30 seconds all day. I don't know if it's my spleen that is telling me it can't handle something like toxins or infection?[/quote] Strange that you mentioned pains in your spleen area because when I was reading some of your symptoms..........I was thinking that you had spleen deficiency......but as it relates to chinese medicine.......

 

[Fuzzyhead]

Hi Tammy. What is spleen deficiency? Do you need to see a chinese herbalist?

 

[maryb]

Very likely, I'm detoxing right now.
.

My problem is that probably the very time I need detox is when I feel at my worse and unable to tolerate anything , my MCS goes off scale etc. I know by how bad I feel in the mornings, hit by a truck feeling we all know.
What do you use? Do you know of a gentle one to start with?
I looked at the Heel and the other link, difficult to work it out on your own though.
Just don't want to add to the hundreds of unused supplements in my cupboards

We have a dearth of well qualified holistic naturopaths in the UK, especially in my area, plenty that have got a 12month certificateWe probably know more than that group.

 

[Fuzzyhead]

I looked at the heel as well maryb and I couldn't figure it out either. And like you when I probably need to detox like now I am always scared my body won't be able to take it. I am going to see if anything comes from my abdominal ultrasound and go from there. If my gp can't get to the cause I will have to try and figure it out myself as always.

 

[Zensational]

With the Heel Detox, at least the one I've used with 3 bottles, you just put 10 drops of each bottle in a glass of pureified water at the beginning of the day and drink it all day.
Juicing is an excellent way to detox and there are guides for juicing different fruits and veggies that cleanse different organs. Beet juice is a good thing to juice but just 1/4 of a beet at a time because it is a powerful detoxer.
Drink lots of purified water.

 

[Fuzzyhead]

Just looked online and the heel detox is £38 for 3 bottles of 50ml on amazon. I might give this a go to see if it helps my symptoms because some of my problems could be toxins i.e sweating at night, nausea, fatigue, brain fog and loose bowels. It's worth a try, I did the Perrin technique for 2 years which stimulates the lymphatic system and rids the body of toxins and it did help but I couldnt afford to carry on going and I had to travel 2.5 hrs there and back.

 

[Zensational]

Here's some interesting info on Beet Juice and detoxing the liver and spleen.
http://www.antioxidants-4-life.com/benefits-of-beet-juice.html
I think I am going to go make myself some carrot beet juice.

 

[Tammy]

Hi Tammy. What is spleen deficiency? Do you need to see a chinese herbalist?

Fuzzyhead...........yes , spleen deficiency would need to be explained by a doctor of oriental medicine........western doctors would not know anything about it. It doesn't necessarliy mean that you have a diseased spleen......just that it isn't working up to par............could be that the liver is working over time and therefore overriding the spleen...........but like I said this is something that a DOM would be able to diagnose.