Just diagnosed with CFS and IBS, where do I go from here? Please anyone with similar experiences

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Dux
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/25/2010 8:30 AM (GMT -7)   
Hi im Andrew, but everyone just calls me Dux.

I have had declining health for around 10 years now, from being in school at 15 and being a straight A/A* student, and aiming to work as a graphic designer. I then left school with respectable but less impressive B's and C's. I had lost a lot of ability to remember facts, to concentrate, my motivation to do most things had wayned. This was put down depression (family problems all my life, brought up by a clinically depressed mother in divided household).

After school had a small series of jobs as I was pretty unsure what I wanted to do, and often I just 'didn't feel up to working', classic depression I guess. I eventually managed to pull myself together a bit and started an apprenticeship at a VAG garage as a mechanic, quickly moving over to Audi. Things started looking up, and within 3 years I was qualified with Merit/distinction, was working as the senior technician doing all warranty work and was heading for possibly the youngest master technician in the UK.

Then it all started to go downhill.

I had been struggling with my depression a little but coping to some extent. I enjoyed socialising but just found it far too much sometimes, after a couple of days out and about with friends, I would very rarely make it into work on mondays, and often this would last a week, feeling low, tired, fed up etc. Again this was put down to depression.

I used to mountain bike pretty heavy and hard, 45 hours of work a week and around 30 or 40 miles offroad riding. Eventually I had an accident, tried a 4ft drop off and smashed my left wrist up and my left leg. After a week the hospital decided my scaffoid was broken and I was placed in plaster for about 3 months. Aftyer 6 months back at work, it was found out after much nagging that my wrist was still broken. A bone graft from my hip and a pin eventually sorted this.

At this time I was under a lot of stress, my brother was suicidal, I was getting into debt as I could not afford my rent, and I had managed to find a total psycho to start going out with.

I eventually found myself living in Leicester working at Leicester Audi for about 6 months, and by the end of this I was VERY unwell. I had lost alot of weight, I was very depressed, I had developed a reliance on alcohol, I was not eating well, resting much and I struggled to keep my job, until I was off for a month, hardly able to leave my flat. I started to develope some odd symptons. When I was tired, I would feel very abstract, my head cloudy and foggy, Id sometime even have very minor hallucinations, hearing and seeing things. I started to get alot of stomach pains and problems. By the time I moved back to Devon to my mums I could hardly stay awake for more than a few hours at a time, absolute exhaustion took hold.

Back in devon it was a few weeks before I started work again, I built up my health a little, but many problems and symptons remained, which over the next 3 years, untill now have worsened. Each job I have I last at for a shorter and shorter period of time. My latest job I lasted 6 weeks at full time, Ive now managed 3 days in the last 5 weeks, and lost my job this morning :-(

I have been to the docters on and off for years, and they often see anxiety and depression on my notes, and basically ignore anything else I say. I have seen councellors on a few occations, but they talk to me for an hour and say 'Well you seem bright, you dont seem depressed and you seem to know how to think positivly and what action to take'.

I hardly drink these days, I am hardly able to socialise at all. I have started a gluten free diet in the hope this will help with the stomach issues, which over the last 2 years often leave me using the toilet 10-15 times a day, much of my food only seeming half metabolised.

My symptons are as follows, in no real particular order.

Exhaustion and fatigue- I sleep 7-9 hours a night, often disturbed sleep I wake up with pains, often my hands are completely numb. Poor memory and confusion, I dont seem able to hold thoughts in my head properly. I get really confused, I have an IQ of around 140 and yet I spent 2 hours trying to fix a car headlight the other day, it was the indicator...... Over the last few years I have been able to do less and less exercise, to the point a jog up the stairs leaves me flat out.

Eyes - My eye lids often twitch, my right eye doesnt open fully leaving me looking dopey. Eyes are usually bloodshot, dark bags, almost looking like I have a black eye at times. A few years age I was told in an eye test my eye lids dont close properly (before most other symptons started). I was recently told in another eye test, my muscles behind my eyes are weak, I dont follow objects in with my focus. My eyes sting and are teary and always see those little floating squibbles. If im particularly tires, my eyes will actually twitch from side to side on occasion for a period of about 5-10 minutes or sometimes longer.

Hearing - This has only started in last 6 weeks, I hear a 'whooping' like a yawn almost rhythmically when im particularly tired. Sometimes its almost like I can hear an echo of my pulse in my ear, so loud at times it actually hurts.

Neck - My neck is swollen, thyroid (been tested for thyroid issues) is enlarged, and can often see my neck pulsing with my heartbeat. My neck is always stiff, seizes a little.

Arms and back - Despite being very muscular particularly in the shoulders and back, I am weak, unable to maintain strength. When I would work out a few years ago or be lifting gearboxes, I would just collapse under the strain far sooner than I should, like my muscles are all show and no go.

Chest - I have had asthma since I was tiny, but this cleared up in my teens. In the last few years it has returned, but oddly I was told a while ago by a docter its not asthma it must be.... STRESS! lol, I feel tight chested and often wheeze (particularly made worse when resting, and by animal hair)

The embarrassing bits.....- I hate to admit this at my age, but I often cannot sustain an erection, a year ago most of my pubic hair crumbled and fell out although that returned quite quickly (due to personal beleifs, I am NOT sexually active so this isnt any form of STI)

Gut - As I said before, over the last few years my stomach pains have increased consistantly, gurgling, squirting noises are common, horrendous wind (and I know im a guy, but this is ridiculous), 'loose' stools that just form a lump with undigested food contained in it often leavy a greasy slick on surface of water, I have also had problems with heartburn, reflex, mouth ulcers, piles, burning in my anus when I use the loo..... the list is almost endless.

Urinating - Since I was a child I have always had to urinate very frequently, but its at the point now im always dehydrated, what goes in just seems to flow straight out the other end, sometimes it burns a little, even when im not peeing.

Legs and feet - I often get twitching in my thighs, my knees ache often in an almost artheritic manner, since I was about 15 I have started running and running less due to pains up and down my shins, always thought it was shin splints, gets so bad if I play an hour of football I can barely walk. I get sharp stabbing pains in my the side of my legs if ive been fairly busy, that will leave me limping (at end of 8 hours at work).

Skin - I have a little trouble with eczema which has been getting worse on the face and on the eye lids although this is hardly noticable to be honest. Have etheletes foot in between my toes that WILL NOT go no matter how much money I spend on treatments.

Other - Serious egg allergy as baby, could not crack open egg in same room as me. Allergies to animal hair, pollen, dust etc. Appendix ruptured at 13 and removed, hospital took too lng to do this so it actually burst by the time they got in there.

Now I know some of these are nothing, probably most people get them, but it has gotten to the point where its constant on most of these. I have in the last year been tested for diabetes, ceoliacs, thyroid problems, hormone imblances, anemia and all other basic health checks. And I was actually told 'youre too good to be true' by 1 nurse, basically im the healthiest person out there.......

This is destroying my life, im 25 and live with my mum still, my GF is at the point of leaving me because I am never up to doing anything with her. I lost my job this morning, and now need to find a part time job as a welder, mechanic maintanence engineer.... that just wont happen. So im going to have to work part time in a shop on minimum wage. Byebye car, no chance of my own place to live again, marraige.... etc.

I am trying a gluten free diet, little or no caffeine, very little alcohol, no late nights, im basically now the most boring person ever, and Im getting worse. My brother has CFS, and can hardly leave his flat hes so bad, he cant work, cant go on holiday, cant go out much, he is married but hardly ideal situation. Am I going to end up like this?

I recently got a docter to agree that it is probably CFS, with an IBS/food intolerence issue tied in. Any ideas? Please?

scotsrish
New Member


Date Joined May 2006
Total Posts : 3
   Posted 10/25/2010 11:55 AM (GMT -7)   
Hello Andrew it seems you have a lot going on and you really should see a good Naturopath just because I feel that once you've been tagged with anxiety, depression or some form of mental disorder, that's how the docs see you. I am not a doctor but have struggled with many of the same problems you have. Both the gut and the thyroid are at the center of our being and if not functioning well can send everything else for a loop. Check out the symptoms of hypothyroid and make sure you are tested TOTALLY T3/T4 and including an ultra sound. The IBS, well hate to say it but you have to learn what works best for you that's why its called a functional disorder. I take slippery elm and L glutamine I also take Nexium for heartburn when I need it and for some strange reason it helps my IBS. Some people use pepto, lamotrigine, trimebutine it doesn't matter find what works for you. You might find a box of raisins a day keeps you in tip top shape ha ha the point is keep trying. Your mind and your gut share serotonin if one is getting more, than the other falls short and doesn't function well, that's where the L Glutamine comes in. Don't label yourself with CFS yet. This is your body and your a smart guy I know it's overwhelming because you can't get answers but become your best advocate and talk about your experiences you'd be surprised at how much company you really do have.

Terrahawk
Regular Member


Date Joined Nov 2010
Total Posts : 104
   Posted 11/16/2010 9:16 AM (GMT -7)   
From what I can make of your illnesses you have some form of CFS. But, It does sound as though you have many other problems as well. It all seems a blur due to the fact you have so many problems. Best way forward is to deal with each problem one at a time. First get help for the depression! you need you strength to deal with all your problems and depression doesn't help. Ask the Dr for Sertraline. I personally find this a V. good anti-depressant and have recommended it to many sufferers. Seems to work well for all concerned. Secondly, ask the Dr for a drug to deal with the CFS. There are a few out there. I have not tried any and have suffered due to this fact. This was because no Dr I have met has had the insight to prescribe me some.
You are likely to find that breathing problems and memory problems go hand in hand with CFS. Don't worry to much about them as they will always work but just not at the same pace as everyone else. Once you have dealt with these two problems (Depression/CFS) then deal with the other problems one at a time.
Good luck...
Runckle

Take a look at this:~

www.youtube.com/watch?v=r0w9-eQ_fKQ

TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 12/2/2010 8:17 PM (GMT -7)   
Hi. I hope that you can be patient with yourself to find the solutions to your health and personal concerns. This can be figured out and you can get what you want from life if you are patient with yourself to find what can heal you. Reading your post, I was thinking that maybe some things to look into:
Are these symptoms side effects of meds? Actually, not knowing if you're taking anything, I really wonder if these are side effects to meds. Also, do you have blood in your stool? Could the IBS really be IBD (Irritable Bowel Disease), which is auto-immune and can cause some of these problems, including fatigue and skin problems and joint pains.

You're young and can and will find the answer to this. You're not living how you want to now and t may take some time, but there's light at the end of the tunnel. Good luck and best wishes to you.
UC Relapse after about 2+ years in remission. Stress, I think.
Self prescribed Asacol 4 pills 3X's/day, Canasa in am and Rowasa in pm
(left over from previous rx's) Waiting for my GI appt 1/3/11!!!!

kittyb2113
New Member


Date Joined Dec 2010
Total Posts : 7
   Posted 12/27/2010 8:37 AM (GMT -7)   
Hi!

Goodness you have been through a lot. I have ME/CFS for the past 2.5 years andhave struggled to adapt to it but I'm finally getting somewhere I think. If you want to chat send me an email - you can find it on my profile here or by clicking on the "contact" page of my blog. x
~ http://www.mycfs.me - blogging about Chronic Fatigue Syndrome and ME ~

juli4health
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/16/2011 2:34 PM (GMT -7)   
Hi Andrew, I know your pain! Instead of going into my LONG and extensive history, I will tell you this: After 10 years of a myriad of doctors who told me I was "healthy" and "fine", I found Dr. Wightman @ Holtorf Medical Center in Torrance, CA. Their website is www.holtorfmed.com. Read all you can on the site, as it's FULL of great info! In my case, I had low thyroid, a compromised immune system (which had led to a blood candida infection, active Epstein-Barr infection [from mono I'd gotten in college]), and burned out adrenals. FINALLY...answers! They KEY is finding a good diagnostic doctor and then following the regimen, which has been a whole "lifestyle". I barely drink alcohol now, eat little sugar, low-carb diet, don't do caffeine, stay on a regular exercise and sleep schedule (sounds boring, but there are "cheats" here and there). In addition to being on thyroid bio-identical hormones, I went on an anti-fungal medication for a short while to kill off some of the candida. I also give myself B12 injections (with glutathione for the immune system) every couple days (which does wonders), and I take LOTS of nutritional supplements from Holtorf. Check out that website and BEST OF LUCK. Most of all, now that you are not alone. I know how depressing and alienating the whole thing is. Don't give up, but TAKE ACTION. It doesn't go away on it's own! And it usually is the result of "multiple systems" going bonkers. Take care, Julie

juli4health
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/16/2011 2:38 PM (GMT -7)   
Andrew, I forgot to mention in my last email: I also have food intolerances (and multiple chemical sensitivities). It's all inter-related. It's immune system stuff, and over-burdened liver, etc. I also have a natural health practitioner that just tested my urine for "heavy metal toxicity". Several years ago, I had my metal fillings drilled out. Apparently when this is done, the metals become vapors which are inhaled and absorbed through the mouth and nose tissue, and go into the surrounding tissues. He believes this is what made my thyroid go wacky. Hope all this helps... :-) Julie

juli4health
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/16/2011 2:46 PM (GMT -7)   
Oh and more... Somebody else had talked about the "gut", which I didn't go into. I agree with all that too. I didn't "appear" to have gut issues but do. Did you know that around 80 percent of your immune system is in your gut? And that if it's not working properly, your food isn't getting digested and utilized by your tissues properly, and being turned into ENERGY! My naturopath has me making a protein shake in the morning with:
1) whey protein powder (Jay-Robb vanilla rocks)
2) ground flaxseed
3) ground hempseed
4) glutaloemine (this has glutatione and aloe)
5) slippery elm
I add from Holtorf Medical Center (you can get this stuff online)
1) Energy Enfusion (this is the MOST POWERFUL vitamin, mineral and amino acid powder mix)
2) RiboMax (D-ribose and malic acid mix)
It starts your morning with a TON of nutritional energy! Try it out!

Quietly Here
New Member


Date Joined Dec 2010
Total Posts : 4
   Posted 1/17/2011 4:30 PM (GMT -7)   
Hi Dux:

I just wanted to lend you some emotional support. I am 46 and deal with multiple issues. My CFS first blew up when I was severely depressed in 1996. I was diagnosed with CFS in 2008. I have struggled all my life with mental health issues, someone finally gave it a name when I was 32, that was 15 years after having seen my first counselor.

I struggled a lot with trying to figure out why something was happening; why did I sleep 22 hours; why did my intestines explode etc. I feel more sure of myself after reading about the various conditions that I have (I have throw in Tourette for some extra excitement). More and more I focus on...this is what's happening, now what do I do to feel the best I can?

It's okay to be confused. This is scary stuff. Then throw in not feeling well on a daily basis. I once summarized my life to a friend by saying I am a life-time member of Beta Gamma Sigma which is the management equivalent to Phi Beta Cappa. I have difficulty grocery shopping.

Someone before me posted; figure out what works for you. Try to find some support to help you figure out how to go about getting the medical assistance you need. That's okay to do. If you have some sort of medical insurance (which I know you might not because of not working) you might be able to find a case manager. I found some help at an agency that worked with people with disabilities. Someone to help you make a chart and figure out what's going on and where you will get the best treatment.

SofiaMacdonald
New Member


Date Joined Jan 2011
Total Posts : 7
   Posted 1/18/2011 10:17 AM (GMT -7)   
I am suffering from "Chronic Disease". Please help and suggest me so the I can get cure from this disease.

BetterThanHellThough
Regular Member


Date Joined Feb 2011
Total Posts : 50
   Posted 2/7/2011 9:09 AM (GMT -7)   
Hi everybody,
It is amazing on this site to see, first of all, that I am not the only one suffering with chronic desease tthat nobody seems to understand Secondly, to see, that we are still alive and hoping
this tells me a lot about the beauty of life
I am very inpsired by many post of many of us here who struggle
Dux, I admire your inner strength
excellent, don't give up don't give up
We, the sick, are heroes in some way, not giving up....
And lastly I want to say, try to connect with spirituality, spiritual organisation
Beware the fanatic and the ill motivated, but amonf the Christian and the Buddhist, for instance, we can find genuine support and prayers can bring tremendous relief.
Of course there are even cases of"miracles' or faith healing>
I believe in that> In my case, Although I quite often feel depressed being endlessly weak and suffering, still my intense involvement in spirituality bring tremendous joy to the whole scene, and I am happy.
Maybe you could just enter a church when nobody's there, if you don't feel like meeting anybody... Just enter and just breath some air charged with centuries of prayers. As a punk teen overwhelmed by the modern life, its rapid pace, its crazy indifference to the sensitivity and suffering of others, , I would enter churches just to enjoy the silence. No aggression in there.
Today I like rituals and the like, but that was not at all the case then, and it was still very supportive, even though I did not believe in God and was brought up as a Jewish girl, suspecting any Christians to have brought my ancestors to the ****s....
Try the first church, or the one you like, just enter and breath a few minutes, it can't harm...
You may pray, even, say, Hey you, whoever, if you have power and compassion, say hello or bring me some relief...
You know, it's your secret, your own privacy, your spirituality...
There is a lot of power there because it follows after death as well.
Try it, it does't cost a penny...
Good luck and thank you for your posts
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