Do i have Chronic Fatigue? *Please read*

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Lord G
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/28/2010 1:57 PM (GMT -7)   
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)


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/28/2010 2:01 PM (GMT -7)   
I am so sorry to hear that you are not feeling well.
I cant help but ask if you have been tested for lyme disease?? you may want to if you havent. I am not a doctor but sufferfrom both cfs, and Lyme among other things.

I used to and still do feel exactly as you describe. ready to keel over at any second.

good luck on your journey,
melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


fibrohubby
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/1/2010 6:41 AM (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

Lord G
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 3/1/2010 10:00 AM (GMT -7)   
thanks merrygirl and fibrohubby for your replies.

I did forget to mention i also have had my thyroid tested and that came back as ok.

I should have also mentioned i have some irritable bowel syndrome type symptoms, i.e if i need to go i must go quick, not normally the type of thing to mention on a forum but this is different as people here would understand!

hope to see more replies soon, i really am convinced its CFS. I read it can be tricky to get a diagnosis here in the UK.

Mark

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 3/3/2010 8:56 PM (GMT -7)   
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.
~ Jeannie
Moderator for Fibromyalgia and Diabetes


harley ultraclassic
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/11/2010 11:30 PM (GMT -7)   
Hello  Im a new member.  I believe that I have frozen shoulder.  I somehow was reading forum from 2007  and that confused me.  Ill try this.  My shoulder is very painful when I move it certain ways.  I do not like the idea of manipulated surgery. Change of breaking bone in arm.  I had surgery on my left neck shoulder area. Including down to the scalpula bone.  Soon after developed this frozen shoulder.  What should I do ?  Or can anybody please share with me their experience.  Thanks Harley

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 3/11/2010 11:40 PM (GMT -7)   
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.
~ Jeannie
Moderator for Fibromyalgia and Diabetes


Tizz
Regular Member


Date Joined Jul 2007
Total Posts : 48
   Posted 3/24/2010 3:12 PM (GMT -7)   
Hi Mark
 
I hope if you haven't already done so, you will soon find some answers and relief from your symptoms. I too am suffereing what sounds like the same symptoms as you and although I have been unable to undergo any in depth tests, CFS has been repeatedly suggested to me. I am a long term anxiety & panic sufferer but what I've been experiencing the last 7 months now has gone beyond that. Like you I am hardly able to stand for any real length of time. Infact as time has worn on this has become worse, almost completely disabling me. If I get up, try to walk around or undertake even the simplest kind of tasks. Even standing to wash the dishes is like climbing mount everest! And I am totally exhausted afterwards. The funny dizziness and light headedness sets in so fast, my legs feel weak and if I don't get the heck out of there I feel I will collapse any minute. I can hardly do anything for myself anymore.
 
My Doctor initially diagnosed chronic vertigo but nothing has helped. And since CFS has been suggested to me again I thought I woukd pop on here to try and find out from fellow sufferers exactly what it feels like ... I do have all the symptoms, but wanted to hear first hand what it feels like ... whether that is what it is or not, I don;t know but reading your post struck a familiar chord with me ....
 
 

chambershex
Regular Member


Date Joined Sep 2008
Total Posts : 26
   Posted 3/24/2010 6:52 PM (GMT -7)   
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.

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 3/26/2010 8:41 AM (GMT -7)   
Hemoglobin and thyroid levels should be checked out as well. Both of these can contribute to fatigue factors.
~ Jeannie
Moderator for Fibromyalgia and Diabetes


ohsofibro
Regular Member


Date Joined May 2010
Total Posts : 61
   Posted 5/27/2010 9:08 AM (GMT -7)   
May be orthostatic intolerance
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