Young CFS Patient, PLZ HELP URGNT!!

[Endzone]

Thank you Emma for posting your story. In spite of the many difficult things you have to endure, you do seem to have a good attitude. You are obviously very sharp and intelligent. It breaks my heart that a beautiful young woman such as youself has to deal with this. I have CFS, but I don't have it nearly as bad as you do. But I have Irritable bowel which is really hard to deal with at times--very painful gas several hours.

I hope that you will get better. You say you are already feeling a little better. This is just a suggestion, but would you please ask God to help you? He is so very real and loves you so much. Even though your parents may not be able to understand what you are going through, I'm sure they still love you very much too.

I will write more later. Please tell us how you are doing.

[emmawati]

Dear Capricorn,

Was great to hear from you! Yes this illness is hard....my attitude is not always so positive but I have gone through many of the things that people are posting about and I know the outcome. I am a spiritual person and I have people (friends) from many religions and countries praying for me. I used to lecture Advanced academic English to international students at university so this is a big change for me. Its heart breaking for me so I try not to think about the past too much. I had also saved to go travelling the world in May and had everything planned to the tiniest detail, tickets were purchased, friends overseas were notified etc. After I wasn't getting better for 3 months and the date came closer, I had to cancel everything. It is terrible that our lives are basically put on hold. I try to do little things that make me happy (when I am up to it of course). I have come to accept that my body has been pushed to its absolute maximum due to me not respecting myself enough. I put other people first before myself and this aim to please everybody has made me vulnerable to further stress. I was the healthiet person but if you are stressed then your immune system can become very weak. It is important for those close to you to understand this as you must remove yourself from any emotional situations. Easy to say but hard to do. I feel like I need to protect myself from the world...but its hard to control those around you.
For months and months, I had this fear that something else was wrong with me on top of CFS but after every test, medication, xray, untrasound etc. I am finally coming to accept that it is really all apart of this illness. Yes there are many symptoms but it is normal for someone who's body is suffering from CFS. I get horrible gas too and I feel like something is alive in my belly when it gurgles. Its not as bad when I am resting, eat only fruit and veg, and calm. When I am stressed or have done too much is gets worse. CFS sufferers do get irritable bowel. Try Astra Forte, astra 8 or olive leaf extract. Many people say that is does help (a little). I think it does a bit...it can't hurt. As your organs are working overtime and we get digestive problems, bitters are great for helping them so they don't have to work as hard.
OMG i wrote so much....head now hurts heaps. gotta go.
All the best.

[neil25]

I can totally identify with what your saying i have gas trouble and it really does feel like i have something active in my stomach. I think like you say its an immune system problem or down to a chronic virus. CFS has so many symptoms and you can worry that its down to something else but cfs symptoms can vary so widely.

[Bridget T]

Hi young CFS sufferer. I was very sick when I was 21 in 1989 and after that I was exhausted for the next 10 years. Finally when doctors recognised CFS as an illness and not a mental disorder, I was diagnosed!
When they did finally diagnosed me they told me I only had CFS. Previously they thought I may have had rheumatoid arthritis or primary biliary cirrhosis. So at least CFS was not going to kill me. However I used to wish I was very old so I could just go to sleep and never wake up - not suicidal but pretty close to it! I had three little kiddies to look after.
Well when they diagnosed me with Primary Biliary Cirrhosis I got on the Internet ( it was pretty new in those days!) and found out that the best diet for this was zero fat and low carbs. I started with this and could feel a small difference straight away. Before, most meals had made me feel I weighed 2000kg and all of that lead - just like you. I never felt "light"and always felt exhausted. Now at least I wasn't falling asleep in my dinner plate.
So I started seriously looking into my diet and it changed my life. If I do not follow this diet I am back to square one within a month - very sick and very depressed.
The diet is high protein (soy drinks, lean beef, chicken fish and oily fish), low carbs (mainly rice), plenty of FRESH fruit and veg, NO FAT at all (no mince, lamb, vegetable oil, butter, cakes, biscuits, pork, cheeses, salamis, pies, etc etc the list is very long). Also no additives, preservatives or colours. This includes subjecting yourselves to chemicals such as chlorine in swimming pools or cleaning agents in the house. No smoking, drinking, caffeine, chocolate.
Take plenty of vitamins and Spirulina.
This may sound horrible and boring (actually it is!), but really it is what I call my Asian diet, lots of healthy stir fries (use olive oil to fry), peanut butter and honey on rice biscuits and fresh oily fish with lightly boiled veges. And If it works you'll know pretty quickly. You won't even care it's boring because you'll have way more energy. Nowadays I do not have to follow this diet so strictly - you DO get your life back, be patient.
Just because you have CFS does not mean you don't have other conditions too. Look into them.
Good luck.

[Capricorn]

Dear bridget, thanku for sharing useful information. We all have a few different symptoms to each other but it helps to know about other's conditions. I had severely lost my appetite during the tougher phase of my condition and had an odd craving for french fries and spaghetti only, and maybe fast foods and stuff. But I am much better now (thank God) and have gained my appetite back. I have finally found a doc who mildly understands my condition (I dont thnk they believe I have CF) but there treatment is working... The major problems I am still facing are the walking problem (legs are either too weak or too xhausted, but I can flex them good when lying down or sitting) the urination thng and now by abdominal swelling has increased and therez a noticeable bulge.

I have a question, xactly how many months did take for u to recover? tell me the whole count of the months whn CF started and when did u finally recover? My CF was a gradual but sudden condition, I mean I cdnt relate it to any after affects of some past illness as usually ppl say the got CF after some severe fever/flue or illness. I'll be waiting for a reply soon, thnx.