Do i have Chronic Fatigue? *Please read*

hi everyone, im from the UK, ive just registered on this forum and am hoping you guys can help.

I suspect i have Chronic Fatigue Syndrome, i will explain my symptoms which i have noticed over the last 12-18 months...

after approx 15 mins of standing or walking i begin to feel very dizzy, light headed, go pale and sweat a lot from the forehead and the back. my legs feel weaker and i feel the need to sit down asap or i will collapse. I used to be able to stand/walk for around 45 mins when i first noticed something was wrong.

this can also apply when doing the simplest of household tasks such as cleaning. I can be sitting down and still get the above symptoms.

I have tired patches through the day, my joints ache a lot and so do muscles too. warm temperatures bring symptoms on quicker.

I have been to my doctor who has sent me for several tests (CFS has never been mentioned as of yet), i passed all the tests, they included:

1) ECG - Passed
2) 24hr blood pressure monitor - had normal blood pressure, no problems.
3) Tilt Table test - Passed this too, despite feeling terrible as i was standing for over 35 mins, i sweated loads and was pale and clammy.
4) MRI Brain Scan - Normal result, i do have scar tissue on the left temperal lobe from epilepsy that i have had for over 27yrs but no tumors etc.
5) blood test to test liver, kidney, diabetis etc - all ok.

As i said above i do also have left temperal lobe epilepsy, have had it for 27 yrs but the new symptoms above are very recent and my neurologist does not think they are epilepsy related but would not give me any idea what it could be. I Take Carbamazepine (tegretol) and Zonisamide (Zonegran) for the epilepsy.

Do these symptoms sound like Chronic Fatigue Syndrome to you guys? I am due to see my doc again on 11th March and am seriously considering putting my concerns of CFS to him, especially as i have had numerous tests eliminated allready.

thanks for reading, hope to read some replies soon, its had me really demented for some time as it affects everything in my day to day life!!

Post Edited (Lord G) : 2/28/2010 2:06:10 PM (GMT-7)

My wife has been fighting with fatigue/fibromyalgia/chronic pain she even though lyme disease at one point, for about three years now. She recently has been trying to go gluten-free, and this has helped a lot, she just started a blog to document her experience

www.glutenfibrofree.com

By biggest suggestion would be to keep a food/mood diary. My wife did not do this, and she never knew what was working and what was not. For instance, she thought she had developed a fish allergy, when actually it was more likely the gluten in the fish stick breading that was the problem

Best of luck finding something that helps.

-James

Mark,
CFS can resemble several different illnesses and is not often made as a primary diagnosis until EVERY OTHER possible thing has been ruled out. You could be suffering from several things so it would be best to let your doctor's test until they have some valid data.

One thing that I might suspect from your symptoms would be hypoglycemia. This disorder is difficult to diagnose without a food, rest, exercise and blood glucose diary. If I were you I would get an inexpensive blood glucose meter (and most importantly one that uses inexpensive test strips!) and whenever you feel this overwhelming fatigue, test your blood sugar levels.

The food diary part of the record will show (if it's hypoglycemia) the reactions to be from quick spikes and then dramatic drops in blood sugar after high glycemic carbohydrates such as pasta, rice, baked goods, breads and pastries. Recording your fatigue levels after exercise or any physically energetic activity will also show the doctor what's going on. So, if you get yourself a meter and start a notebook you will at least have some kind of data to share with your physician. Maybe then you can figure it out together. Also, if you do not have hypoglycemia this will help you and the doctor to rule it out.

Good luck with this.

Harley,
This forum is for chronic fatigue and not many people here can help you but I'll try. There are several things that can lead to shoulder pain. You could have bursitis or arthritis, a torn or irritated rotator cuff or even a pinched nerve from sleeping on your side. You can try several thing to help yourself and see if they lessen or remove the pain.

Sleep on your back with the affected arm resting on a pillow. This will prevent you from rolling over on to that side and pinching the nerve.
Take aspirin or ibuprophen on a regular schedule WITH FOOD. These are non steroid anti-inflammatory meds and they will help if you have and inflammatory process going on such as bursitis, arthritis or tendonitis in your rotator cuff.
Use ice and/or heat to relieve pain. Ice will often lower inflammation and heat will speed healing. Use whichever feels best. You can fill a sock with rice and heat it in the microwave for a minute to make a safe heat pad that won't burn you.

Hope this helps.

Hi Lord G, it has to be stressed that syndromes like CFS are not a well defined disease. You would be hard pressed to find two people who have been diagnosed with CFS who have the same or even similiar symptoms. It sounds very likely you have some sort of dysautonomia (a cateogory of illnesses of which CFS may be included). You mentioned you passed the tilt table test, but even still, it sounds as though you may have postural orthostatic tachycardia syndrome (POTS). The leading symptom of pots is, as you describe, is orthostatic intolerance. Unfortunately, for most dysutonomias modern medicine won't be able to help you. But before you start trying to manage the condition, I suggest you continue getting tests done to rule out anything more sinister. It seems most dysautonomias are not life threatening, no matter how hard they are to deal with.

Once you have ruled out other diseases, a good management solution would be to formulate an exercise (cardiovascular) regime which you gradually build up (so as not to make you feel uncomfortable). Also make sure you drink a lot of water spaced throughout the day (make sure your salt intake is not reduced if you are doing this). Also try and avoid excessive alcohol and caffeine which make these problems worse.

There is a positive though: It seems as though many dysautonomias drastically improve or even dissappear if you maintain a regime like the above. So this is something to keep you motivated.

May be orthostatic intolerance