new to CFS

Hi roxy and welcome to HealingWell. I'm so sorry you are sick and that you are feeling so rotten. Knickers had a lot of really good advice for you. It's so hard to have a chronic illness and it takes a while to adjust and balance things out and figure out a balance between rest and activity. My entire life changed after I go sick but I am slowly creating a different way of life that is manageable for myself and my family. I have a 5 yr old, a 9yr old and a husband and it is very hard and I went through a lot of guilt about what I could no longer do. It was a big adjustment for my family, but we talked a lot and try to work together and balance things out (it's not easy and we still struggle at times). There's a good website called butyoudontlooksick.com and on it there is something called the "Spoon Theory". THe author does a great job explaining to healthy people what it is like to live with a chronic illness everyday. She has lupus, but the author says you it can all apply to any chronic illness. I printed out several copies of the Spoon Theory and gave it to family and a few close friends. I know how overwhelming all of this is especially when it is new. Just know that we are here for you if you have any questions or need to vent. Take care

Can you describe the rotten feeling you have?  I am 28 and I have been sick for over a year.  The strange thing is, fatigue isn't the main symptom.  I just feel really sick and horrible all over.  I have had dizziness, sore throats, headaches, muscleaches, anxiety, some fatigue, panic attacks, weakness.  I know all of those symptoms sound cosistent with CFS, but for the past month or two most of the symptoms are gone. I still ache in my back and neck, I can do a lot but I feel really really sick inside.  I am so irritable, I could lose my fiance.  I feel hopeless.  I have had extensive medical testing, and all tests come up fine. I have lost 18 pounds.  Can anyone relate to this horrible ill feeling I have?  The doctors hesitate to diagnose CFS- they are not sure.  I am thinking about going to Mayo Clinic.  If anyone can relate to what I am going through, please let me know.  Whatever this is, it goes way beyond fatigue- it feels like hell!!!

Roxy-bird-  I went back to the doctor again today.  He basically said he is not sure if I have CFS because I am losing weight and CFS patients usually gain weight.  He is running a few more tests(pointless), but he said he doesn't think there is anything serious wrong with me and that we will either find out what is wrong or I will get better.  He said I will not stay sick, so that was good to hear.  You are so lucky you don't have anxiety and panic attacks- those were pretty much the worst symptoms.  Beating anxiety is a battle on its own. How long have you been sick?  It really seems like we are suffering in the same way.  I haven't wanted to go anywhere or do anything.  I haven't been able to work out because it makes me worse.  It really is horrible.  I know I am getting better though because I drove myself to the doctor today- for a long time I was to sick to do that!! I will pray for you to, hang in there, it HAS to get BETTER!!

aquarias-

I have been feeling sick for about two years, but the last year has been the worst. Your right I am lucky I don't get anxiety attacks. I've seen my sister's when they are having one and I already know it's something I hope that I never have to experience. I don't know about the losing weight thing, I sure wish I could though.!! I really hope they do give you some kind of answer soon, like I said I think that one of the worse things is not knowing what is wrong. It is good to hear that your doctor doesn't think that anything is seriously wrong and that he thinks you will get better soon. I hope he is right. How long have you been feeling sick? Is it something that came on suddenly?
I'm kind of curious to hear what your doctor is leaning towards if he doesn't think its CFS.

I didn't have any viruses or anything that I can remember. I guess that if I think back I probably started getting sick along time ago, I just don't think I realized it. I don't complain much when somethings wrong and if I do complain it's usually because something is REALLY wrong. I think that I started getting dizzy first also, just didn't think much about it. When I started to notice that something wasn't right was about a year or two ago I started to get this pain in my ankle that ended up lasting for 3 months. I had a whole bunch of test but no one could tell me why my foot hurt. Then I got this pain in my chest which of course was really scary because it was on my left side and I thought that something was wrong with my heart, that lasted about two months. Then the dizzy spells came back which one doctor tried to tell me that it was just a spell of vertigo. After that my ankle started again which to this day has not went away. Anyway thats just the begining of the drama. I do feel alot better though. I can't tell if it's from the cymbalta or if I'm getting better on my own.

roxy.. the only way to really deal with this illness is to change ones life about it. Learn to pace yourself and dont over do things..if you do that, you may find it will improve. Also avoid stress.

Many find diet changes help greatly too eg going to freshly juiced vegatables, avoiding caffine etc etc etc. I know im heaps better when im only having freshly juiced things.

aquarius said " I went back to the doctor again today. He basically said he is not sure if I have CFS because I am losing weight and CFS patients usually gain weight"

aquarius.. im sorry but i dont think you doctor knows much about CFS. I know I lost a lot of weight at the start of the illness (in the first 12-18mths). I was bedridden with it, too weak and sick to eat...and hence lost weight. I truely dont think that would be unusual at all if one is very ill with this.

Ive had CFS now for 10 yrs..and I are not overweight (im average weight). Your doctor may have an idea in his head that just cause we cant exercise much we get fat.. or something along those lines. I actually doubt if our weights are different to the rest of the population!!! (Ive done a ton of research on CFS and never have seen a study saying that CFS people are more obese).

aquarias.. i dont want to get you down but many of the people Ive spoken to who have CFS, have to change their lives some and live at a different pace to what they previously did. Some recover.. many dont. Some that recover easily, I wonder if they truely actually had CFS in the first place. Many will go into remission for a time or many years.

The less severely you are with this in its initial stages.. the more likely you will recover. I was completely bedridden for 9 mths initally so I was (am) quite a bad case.

At a slower pace.. yeah one can still enjoy a normal life, thou I must admit right now my life isnt all that good as the CFS has affected mine severely in every way possible eg I had to quit college after two years of it, so never could get my diploma, I cant work properly, Im struggling to work just 3 hrs a week, my relationships even suffer, I cant look after my family so my daughter had to go and live with her father.

Instead everyone has to pitch in and look after me at times, my brain fog is so bad that I struggle to do the simplest of things at times. Im fighting it hard thou, not willing to give in.. all which probably makes it all the worst for me.

My whole life has been destroyed by this illness and I should be on disability, Im fighting to not go on it but Im about to be forced too. Ive had to let go of all my dreams. please note that may life may become much better again if i go into remission once again from the CFS. Take your illness serious thou and avoid relapses or worsening of it at all costs, its so important to pace yourself and not make it worst and therefore give yourself a chance to heal some from this.

With CFS..exercising can often be a very very bad thing for a CFS patient to do, many dont recommend that at all. One is short of energy and tired anyway..and using their energy just to exercise.. often causes one to further crash. Exercise can often actually make someone with CFS much iller and further damage ones health.

The best thing I find for me (and for most with this illness).. is rest ...and lots of it. Its resting and avoiding stress... which allowed me to go into remission and stay in it for a long time.

I got my CFS from pushing myself too hard in the first place and the stress in my life at that time. I got it while at collage, tried to push myself throu exams but I just kept on getting like bad flu symptoms which came in more and more. Until I had to defer all my exams, I was never able to go back.

At the same time as trying to do collage full time, I was also being a sole parent of two young children, one who is disabled. Like most with CFS.. Im a personality type A kind of person, so was very highly motivated and pushing myself hard. There was so much I wanted to do.

I did have EBV (mono) 10 yrs earlier when I was 14 yrs old.. and also test positive for CMV (it been said by some that could be a cause of somes CFS) and also are positive for the toxo. parasite. So like most with CFS.. I have a lot of things laying dormant in my system but could reactive.

I'll cut and paste a list of my symptoms here seeing you asked. This is the list I take with me if I ever see a new doctor to give them some idea of CFS and the things I have to deal with.

My symptoms... of cause not all at once!!!!! thank god!

1/ post excertional fatigue (both physical and mental)
2/ fatigue
3/ exhaustion (physical and mental)
4/ feeling weak
5/ feeling feverish
6/ feeling fluish
7/ feeling like "death warmed up" (like feeling pale and like one is on deaths door)
8/ feeling faint and dizzy
9/ apathy
10/ feeling overwhelmed at times (this happens when I get overload..eg too much
stimuli happening.. it can throw me into body shakes)
11/ feeling depressed (that was the first year of my illness)
12/ panic attacks (new symptom this year)
13/ rapid mood swings (new symptom this year)
14/ feeling suicidal (first year of illness.. and also this year)
15/ feeling cold (I sometimes need to wear a jacket or even gloves on warm days)
16/ feeling hot (I sometimes heat up doing the slightest thing..eg vaccuming one floor)
17/ Im intollerant to both heat and cold
eg ive collapsed twice at different jobs when it was hot so my bosses wouldnt
allow me to work with them in the heat anymore and just freeze up and go into
shivering very easy on a cold day
18/ intollence to light, it hurt my eyes (only back when I had the FM)
19/ intollerance to sound (hurts my head..and fast music can be too much in the speeds of its beats for my head and can send me into shaking)
20/ body sensation numbness ..
eg At the moment Ive got a numb right hand... I couldnt feel my friends hand
holding it well or him stroking it well today. Its a new symptom.
21/ feeling stiff (only in the past when I had the FM)
22/ muscle pain
23/ bone pain (only in the past when I had the FM)
24/ all over body pain (hurt laying on the bed cause of touching it.. with the FM)
25/ strange body sensations (like ants all crawling over me.. and also of like
spiders biting me..so much I'd yelp with it at times)
26/ pain inside my body which would change places and like pressure or pushing (only
with the FM)
27/ joint pain (back with the FM.but the muscle and bone pain was more of an issue)
28/ eye pain like behind my eyes (only with the FM)
29/ headaches (when ive over excerted myself)
30/ sore throat
31/ swelling of my toes of both feet and pain there (I couldnt wear shoes for two
weeks..doctor said I had chillbanes and gave me medication)
32/ swelling right hand (a recent problem.. no pain involved with it)
33/ weakness of my right hand (a new problem ..specific to that hand, affecting fine
motor skills eg its hard to dip a biscuit in a cup at times. I cant hold my
newborn neice on that side for even 5 mins at the moment)
34/ major spasming of right hand (a new problem.. spasms at rest)
35/ loosing control of right hand (a new problem.. it will suddenly let go of things and at
times I cant write with it anymore cause its hard to control, cant feel it well)
36/ Raynards syndrome in my fingers (when cold or I get stressed)
37/ Pins and needles feeling cause of poor circluation easily
38/ swollen glands
39/ blurry vision (only when I had the CFS/FM)
40/ severe memory problems (short time and long term) which are worsening eg I
forgot how to use a phonebox yesterday and then when i left there..i left my
money there!!!. I forget friends names at times and once forgot where I worked!!!!
Ive done the same thing with my car..thought I
it had been stolen when my car was right in front of me, i couldnt recognise
my own car.
41/ blank outs/mind lapses?? (bad new problem, I can be looking for something but not see it cause Ive had a blank out)
42/ confusion eg yesterday..freaked out thinking i'd lost my purse so was looking for it,
it was in my hand the whole time
43/ difficulty concentrating
44/ difficulty working out things which require mental effort eg adding up can be hard,
cant work out things in my head easily
45/ difficulty understanding language..
46/ difficulty talking ..I often say wrong words in sentences and at times find myself
able to speak properly.. eg forget how sentences start..or jumble the whole
sentence up
47/ slurred speach
48/ rashes (I have a rash of some kind on my right arm at the moment)
(a doctor said it could be a viral kind of rash..but he didnt seem to know)
49/ shortness of breath (new symptom.. its like i cant get enough air, it can
happen on excertion)
50/ muscle weakness (my legs can buckle and give way if I stand in the one spot too
long. Standing in phone box talking to someone can be hard)
51/ muscle twitches
52/ poor appetite (i need to temp myself with foods to make myself eat)
53/ food intollences (a new symptom.. causing stomach pain, sore throat,
tiredness etc) Im now worried about what foods are going to cause me to react
and its putting me off of eatting at times.
54/ insomina (okay at the moment, had problems with that last at the start of this
year and in the past)
55/ balance problems (I loose balance easily and can just suddenly fall over)
56/ I cry easily at things
57/ easy bruising??? (I always seem to have bruises)
58/ easy marking on touch (a friend of mine noticed this with me a couple of weeks
back.. i was running my finger along my skin and it left a big red mark. My skin
dont seem to be doing that right now thou).
59/ thirst (ive stopped doing that several mths back when I got treated by a
homoeopath... i was drinking about 3 Litres on a normal day more when hot).
60/ sweating .. (bad night ones when I also had the FM) .. I still sometimes break out in sweat easily eg while vaccumming a room.
61/ body shaking/trembling (on over excertion
62/ tic (In the past couple of mths Ive developed a head tic ..major when it happens..
body overload can send me into it.. once a breeze blowing on my face sent
me into it. Its constant till the stimuli is removed)

In the past few mths with all this.. Ive been diagnosed with

1/hypercholestrolemia (high cholestrol)
2/ CARP (central auditory processing disorder).. (my ears hear something but my mind cant process what im hearing so its like i have hearing problems but its actually a brain problem)
3/PCOS (polycystic ovulation syndrome) the CFS is stuffing up all my hormones in my body.

Since i wrote that symptom list a mth ago.. I now have more symptoms as this illness is affecting my brain.

64/ My ability to taste is being affected.. eg I will be eatting a salad sandwich but will be tasting pineapple which isnt on it.
65/ My ability to smell is being affected now eg toilet smells can smell like something like strawberries.

(both of these strange symptoms ive been told can be in epileptic patients..but my recent brain scan (MRI) when I was hopitalised for a couple of days due to the CFS recently.. were negative).

66/ A couple of nights back.. i couldnt eat dinner as the smell of food even thou it smelt good and i wanted it.. it was making me gag and almost vomit.
67/ inability to tell the temperature at all. It can be very hot day..and i think its a cold day and lay in the sun with jumper.. Im completely unable to tell at times, doctor says Im at risk of getting heat stroke without realising Im overheating.
The other day I also felt so hot.. and it was a cold night. Fortuantly I took my temperature as I was about to wrap myself in cold towels to cool down.. it turned out my body temp. was already low.. my brain cant tell how warm or hot my body is anymore. ... brain damage of some kind is happening...
68/ ??? I may be now getting IBS (irritable bowel syndrome) symptoms. When the food was almost making me vomit.. I could feel abnormally strong peritalsis actions of my intestines.. cramping, my bowel motions have changed.

TaniaAust, your symptoms sound a lot like the ones I have experienced over time. Have you ever been tested for lupus or similar diseases? I think when you have CFS or FM, you have to monitor your symptoms really carefully and make sure you aren't developing something on top of CFS.