Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Chronic Fatique syndrome or C.F.I.D.S

Have read a bit about it . " Running on Empty "

I may have it ? .

What has me considering I have it is the "phantom Symptoms" that come and go no with pattern to it .
The pain in the white's of my eyes and sensitivity to light , sore throats , lymph nodes that are up and down like yo yo's . , Irritable stomach , neck pain .

Light headedness , vertiago , spaced out feeling , face can go numb

It really flares when stressed , I sleep heaps , but you wake up feeling worse than you went to sleep .

Would like to talk with people who have it .

Can you tell the difference between pain & fatigue associted with A.S and C.F.S. ?


Calixto

The diagnosis with CFS is made after you have been experiencing chronic fatigue for a period of six months... also if after exercise the tiredness becomes worse... or after rest the tiredness is no better...

Sore throat... cluster headaches... sensitivity to light... malaise... very painful lymph nodes (along the side of your neck)... sensitive skin (like you have been burnt)... sore muscles... are all symptoms of CFS. Low folate levels are also a deciding factor.

Sleep does NOT help the tiredness... you can sleep all day and still wake up feeling totally fatigued!

The difference between the two?... that's a tough question... I'm not sure where one stops and the other begins... at the moment... they are both just one big PAIN moulded into one!

Sorry I couldn't be of any more help...



Take Care
Ann

Hi,

I was diagnosed with Epstein-Barr before AS. I believe the diagnosis was a "shut up and stop complaining" attempt by my doctor. It was the rheumy that said I had AS. I still have flares of what seem to be CFS related. Right now, I am sick with a "summer cold", but I have felt it coming on for weeks now. I feel like I did for about 6 months last year. Just put me to bed. The strange thing is, and I wrote about this in the NSD forum, I am not experiencing my normal AS pain and achiness all over my right side from the tip of my neck to my foot. Only my upper back. My symptoms are all over the board. I really never know what is going on. It seems as though it is either one or the other. Flu like symptoms or AS pain (constant discomfort). A large amount of my fatigue went away when I finally went on low thyroid meds and the NSD. But, all the rest is still there. Feel free to contact me anytime. I am going nuts with this whole thing as well.


Linda

Nothing official yet, but chronic fatique is one of the things my primary doc is in the process of "ruling out". I relate to much of what you describe. Most of the time, it feels like I can't wake up my other self enough to do all the stuff this self wants to do.

I also tested positive for Epstein Barr, but that is such a confusing thing, I stopped trying to understand whether it's even significant. Seems most of the population is positive. Anyway, I sympathize.

Hi, Stephen:

There could be some connection to EBV/Candiasis (that seem to be related to CFS and possibly to FM) and AS; a Candida albicans overgrowth might even be one of the many triggers that can compromise the intestinal wall enough to both start AS and make it very difficult to treat. There are specific diagnostic criteria for FM, and I think that the most notable difference between AS and FM is that the pains are usually bilateral (both sides at once) in FM, plus there is a special type of headache quite similar to that with altitude sickness (oxygen depravation).

That which might have triggered AS in the first place, in addition to conventional treatments using NSAIDs, can result in a "polyarthritis" that will exhibit almost any, and certainly many, different types of arthritis and non-specific pain symptoms. These have been characterized by some as LGS; Leaky Gut Syndrome.

In the Zampieron, et al book (http://www.amazon.com/exec/obidos/tg/detail/-/1887299157/qid=1031417460/sr=1-2/ref=sr_1_2/104-4622339-3403111?v=glance&s=books&n=13996) there is a description of a successful treatment regimen. This and other good links can be found page two of Recipes and Important links post at top of NSD forum: https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch.

I hope that you can get some actual relief soon, Best Regards,
John

Hi Linda ,

Dr Dudd , that Rheumy I saw on friday was probably trying to shut me up too ! .
According to the " know it all " . I'm looking for something to blame it on , when it's really a life management problem therefore it's all in my head .

Same B\S they told you ? .
They both must have gone their degrees out of the same cereal box

My blood tests all came back normal , including thyroid .
Thanks I'll checkout the NSD forum as well .

Calixto

Hi Calixto, Sorry I haven't responded sooner but the computer was down. I read your post and I thought BINGO! These are the exact things which occur with me at times. Lymph nodes up, sore throat, dizziness, vertigo, tiredness....overwhelming at times. I have often wondered why I experience them. I have a rhemy appoint. next week and hope to get some answers. I hate to say it, but I feel relieved that I'm not the only one that has these syptoms. I thought I must have had some exotic disease or something. I don't know how I survived before I found KA. Cheers......I'll let you know what Ebringers brother tells me (he's my rhemy here in Aust.) Irene

There is always someone worse off than me!

I really don't know if CFS is associated with AS or not. It has been my understanding that they are two separate things altogether. I had a car accident and broke my back and as a result I triggered my AS. Before I was told I had AS I had severe lower back pain, in the mornings I would wake up with severe stiffness and as the day went on it would get a little better. I thought for the longest time it was due to my accident until I started getting irritible bowel, joint pain, stiffness in the neck and neck pain. Then my vertibraes in the spine started fuseing together. My wife has FM (Fibromyalgia) and according to her, it took about 3yrs to be diagonised with it because it is so similar to CFS. They are called the kissing cousins. One of the main differences between the two is that CFS is associated with tiredness, exausted, muscle aches all the time where with FM people are in severe pain. To have CFS you must have 8 of the 11 symptoms, mild fever, sore thoat, painful lymph nodes, unexplained generalized muscle weakness, muscle discomfort or pain, fatigue lasting more than 24 hrs., headaches, joint pain without redness or swelling, a neuropsychologic complaint such as depression or confusion or inability to concentrate, sleep disturbance and the orginal onset of symptoms developing rapidly, over a few hours or days. To have FM you must have what they call 11 out of 18 tender points in the body. There are 35 symptoms of FM, allergies, brusing, clumsiness, dizziness, dropping things, dry eyes and mouth, feeling of swelling, hair loss, high or low temperature, irritable bladder, irritable bowel, lack of endurance, migraine headaches, mouth sores, muscle spasms, nocturnal myoclonus (restless legs), numbness and tingling, photophobia, prementsrual syndrome, sensitivity to envirnoment, skin itch, mottling, rash, sleep apnea, sore throat, stiffness, swollen glands, tender lymph nodes, tension headaches, vision changes and eye pain, anxiety, confusion, moods swings, irritability, memory blanks, panic attacks, word mix-ups, trouble concentratiing. I have similar symptoms to the CF or The FM as in the irritable bowel, dry eyes, dry mouth, definitely PAIN, muscle spasms. restless legs, rashes, feeling of swellings, skin itch, but I don't have it. I think that this just goes along with the AS and are symtoms of AS. I hope this helps.