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Old 03-11-2010, 03:49 AM   #1
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CFS? can't cope anymore... would love your thought

Hi everyone... don't know where to start.

Ive always been ill in some way... when i was a kid i had really bad glue ear and had surgery.. then i had constant 'sinus infections' which they always gave me antibiotics for but now as an adult i have had this diagnosed as constant chronic rhinitis and post nasal drip. From starting my period it was always really heavy and painful.. throiugh my teen years i put up with these problems and gradually my general health deteriorated - i got more and more tired, out of breath, couldnt do all the sports i used to do etc. Then i starte getting stomach problems, lots of gurgling/bloating, constipation, sugar cravings and excessive uncontrollable hunger. This lead to anxiety and panic attaks and later i started gettin severe episodes of stomach pain.

I am now 22 and things have just got worse and worse. For the past 3/4 years i have been seeing my GP constantly, had all sorts of tests, seen several specialists and have got nowhere. The only positive thing thats happened is i had a bad flare up of stomach pain which turned out to be a grumbling appendix which had developped into full blown apendicitis and i had it taken out. I have had no pain since but still all the other digestive symptoms are there. I have many of the symtoms of CFS but i saw a specialist and she said that becasue i complained of stomach problems being more of an issue than the fatigue that she was wary of diagnosing CFS, which made no sense to me. However i do think that all my problems could be linked. The more i read about candida the more i think i have it and it fits with all my probelms but my doctors dont belive in it.

Here is a list of my current symptoms:

Constant fatigue... always want to sleep, could sleep for 12 hours and still wake up tired, find it really hard to get up and out of bed. No motivation or concentration for anything, no sex dirve. just constantly feel totally exhasuted. Cant walk up one flight of stairs without getting out of breath. Have weird out of focus vision but my eyes have been tested and are fine.

horrible gurgling bloated stomach, can contantly feel my stomach moving and doing stuff. Docs say IBS but i have no pain/spasms and rarely get diahreah or constipation.

Chronis constant rhinitis/PN drip.

sensitive to hot and cold .. always got cold feet and hands, swet alot.

General anxiety, panic attacks, social anxiety. Depression due to all the above.

Heavy periods (eased slightly by being on the pil) - lots of spotting in between and discharge.

Would be great if i could get your opinions on if this sounds like CFS or soemthing else.

Most days i feel like im dying, but everyones telling me theres nothing wrong with me. It just isnt right.
If i dont get well soon, there's no point in me existing.
Thanks for reading.

 
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Old 03-11-2010, 07:27 AM   #2
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Re: CFS? can't cope anymore... would love your thought

It sounds like you need to address each problem separately, then see what's left to check for CFS. For your sinuses, go to an allergist or ENT. Get that resolved. For your period, it sounds like you're on track, but go to your OBGYN and see if that can be helped more. Get a full blood panel for anemia, B-12 deficiency, low iron, mono, you name it. Resolve whatever is going on there. See a psychiatrist/therapist for the depression (which is quite normal considering all that you are struggling with.) Keep doing that until you've addressed everything you can. The, check into CFS.

Most importantly, hang in there! I, too, am a 'sickie.' I hate it. I have so many health problems. It sucks. But despite it all, I do my best to have a positive attitude and be thankful every day for what I have.

 
Old 03-11-2010, 01:00 PM   #3
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Re: CFS? can't cope anymore... would love your thought

hey microwave,
thanks for your reply.

Well thats the thing, ive had loads of tests and nothings been found. And i cant treat each thing seperatly as im sure they're being caused by one common problems, and the stomach issues and anxiety are strongly related.

Ive been to an ENT they said i have chronic rhinits and post nasal drip but didnt know why. Ive had sinus xrays, camera investiagtions and tests for common allergies and they were all clear.

As for the fatigue and stomach issues, ive had stool tests, xrays and ultrasounds. Ive had full blood work including b12, ferretin, basic thyroid, ceoliacs, liver function, calcium etc etc. My b12 and ferretin were both 'low normal' but from what ive read on here, the low normal end of the scales is actually way lower than a healthy level should be, but by doc wasnt worried as it was in range. Ive also tried all the elimiation diets, fibre supplements, loads of antispasmodics ets from the gastro doc.

But this is the point, it isnt getting resolved becasue they cant find what it is.
I just don;t know what else i can do.

Theres no point seeing a therapist untill all the physcial problems are resolved as they are causing the anxiety/depressions. I am just totally stuck in this broken body!!!

Last edited by help wanted :(; 03-11-2010 at 01:01 PM.

 
Old 03-15-2010, 11:20 AM   #4
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Re: CFS? can't cope anymore... would love your thought

if anyone has any input, whatever it may be, i would be really grateful to hear it

 
Old 03-16-2010, 08:38 PM   #5
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Re: CFS? can't cope anymore... would love your thought

It sounds to me at age 22, you are at your wits end. And to top it all off, you don't sound like you have much support because your family and everyone is telling you there isn't anything wrong. Although I cannot reach out and help you personally, I urge you to take whatever action you feel necessary to get to someone who will listen. It sounds to me like there is complete desperation in your post..and at your age with no resources..that's not good to hear. Here's what I would do. I would call the crisis line in your city or town. They have counselors on staff 24/7. They are trained to talk to you, to help you when you can't help yourself. Tell them everything. Also, maybe getting into a short term hospital stay for depression would give you access to doctors who WILL listen to you. Desperate times call for desperate measures and whatever it takes, do it. I don't want someone your age to be another statistic. There's another fork in the road, you just have to find it somehow. Please do this and let us know what happens when you call crisis hotline. For now, know there is someone out here thinking of you and praying you will find an answer soon...

 
Old 03-17-2010, 12:38 PM   #6
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Re: CFS? can't cope anymore... would love your thought

Hi, you sound alot like me. I am a year older and almost 5 years ago started having problems. It started with digestive issues (I had severe daily diarrhea for years) and then fatigue, aches, infections and many other things followed. I recently looked into candida and was sure that was my issue. I've been on the diet for about 4 months and was taking anti fungals and have managed to sort out my stomach issues. Be very careful if you do attempt this as I've ended up even more fatigued and now instead of the doctors telling me I have IBS, they now say I have CFS! I would recommend the diet though as it's mainly cutting out sugar, caffeine, high GI carbs and this sort of diet is recommended for chronic fatigue.

I completely understand how lost you feel. I feel like no one around me believes me, when like you I feel like most days I'm dying! I'm trying to stay positive and am looking into alternative remedies. I've started taking licorice root (I did a test that shows I've got low cortisol throughout the day), magnesium, vitamin C, vitamin B12 and have had the odd few moments of feeling almost awake. Be very careful with supplements though, they can be very potent, as I found out with the anti-fungals! If this doesn't work, I'll probably end up not being able to work

I believe there is something going on with us that the doctors just haven't found yet! Have you had lots of tests? I've barely been given any and the one specialist I was sent to just told me I have IBS and he won't do any tests!

Stay strong, but I know that's easier said than done! Have a look into candida and other things that usually come along with it like adrenal fatigue. Message me if you want someone to chat to.

 
Old 03-18-2010, 04:11 AM   #7
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Re: CFS? can't cope anymore... would love your thought

Thank you both so much for your comments, it's so good to know someone out there is actually listening to me and taking me seriously.

WD1976 - thanks for your support. You're right, im floating around in complete desperation. The next few months are make or break for me, if i don't get well i would have lost my last chance at having a life. Im in the UK so im not sure what we have in terms of a crisis lines. However my doc has recently referred me to a local councelling service and i have my first appointment with them in a few weeks. But the problem is she seems to think that depression/anxiety is my main problem and isnt really interested in investigating whats actually happening to me. The fact is i have depression/anxiety because of all the years i have spent unwell and how much i am held back in life by my illness, whatever it is. So going to a councellor isnt going to help my physical illnesses and thats what causing the other stuff so theoretically the councelling wont help, but im still going to give it a go to shut my doctor up.
It is just so horrible not being able to help yourself.

Sochar, we do sound alike.
Do you think maybe your increased fatigue is due to die off from killing the candida? Have your docs done any tests before telling you its IBS? IBS is a sham, they just tell you thats what you've got if the basic tests show nothing else, or some doctors seem to put any stomach issues down to IBS when there could be so much more going on. I've ruled out celiacs, dairy intolerance, h,pylori, done all the different diets. I had grumbling appendix for years no one spotted which was casuing the pain i had, since i had appenidicitis and had that out there is no pain. You should get tested for celiacs as there are so many people who have it without knowing and it can cause stomach issues and fatigue, my nan was told she had IBS for 20 years and all along it was celiacs, which a simple blood test showed

I think you're completly right, there is something doctors have not yet discovered. Maybe its candida in some form, and they just dont take it seriously, or maybe its something else. But there are so many people out there with IBS, supposed candida, CFS and these are all things there are no definitive tests for. There are so many people trying to live with theseconditions which noone really understands properly, and yet we can cure cancer and grow new body parts.

As for the alternative remedies, ive tried all sorts of things, ive also tried loads of different drugs doctors have handed out to me but nothing has worked so ive given up trying to find something that makes me better, but have tired more to find out whats making me ill in the first place.

keep me informed as to how you get on with things. It's great to hear from someone in the sam boat. Next im going to push to try and get my doc to test my thyroid, i had a basic tsh test last year which was normal but i want a more indepth test as my nan has just been diagnosed with hyperthyroidism.

Thankyou both again, really appreciate your help.

 
Old 03-19-2010, 01:30 PM   #8
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Re: CFS? can't cope anymore... would love your thought

They did a few general tests but only after going back to them for about 2 years! they tested for celiac, diabetes, thyroid (TSH). They basically just told me to put up with it and I'd end up in tears at the end of every doctors appointment. It got to the stage where I was scared to eat and also my stomach pain that came with diarrhea was unbearable, I felt like I was being stabbed over and over. My fatigue came along with it so I just assumed it was due to my stomach issues. I do think maybe the candida die off stressed my body and increased my fatigue. I believe I even saw the candida coming out (white bits and strings in stool) and I no longer have my stomach issues, which after so many years is amazing!

I'm still pretty much on the diet but have reintroduced more carbs and fruit. I started the licorice root last week and on tuesday I had quite a few hours of feeling almost normal. It seems to be giving me the odd half an hour here and there of feeling alot better. The weird thing is that in these moments where my overwhelming fatigue seems to lift so do my other symptoms. I have this strange burning/stinging/aching pain under my left shoulder blade which always comes with my fatigue... do you have anything like this? I'm worried about autoimmune diseases as a few people in my family have them and they usually take years to diagnose.

Where abouts are you from? I'm from England... they seem to hardly want to test me for anything. I think we should both keep pushing for more tests no matter how frustrating it is. I refused medication last time I went as she tried to give me medication I'd tried previously which hadn't worked - basically a low dose anti-depressant to help with pain.

 
Old 03-20-2010, 03:42 AM   #9
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Re: CFS? can't cope anymore... would love your thought

I've had the same problem with doctors, i've really had to fight to get tests done. Its worth asking to see a specialist - ive been going to a dietician and gastro doctor, and although it hasnt helped i have ruled out most food allergies and taken all the pills hes given me so i can prove its more than IBS.
How long did you do the candida diet for to get rid of your stomach issues? what anti fungals were you taking?
No i havent experienced they shoulder pain you described, have you had anything like that before? The only pain i ever had was flare ups of extreme stomach pain which was my appendix.What are the autoimmune diseases in your family? have you asked to be tested for any of them?
Yeh thats the first thing they prescirbed for me was antidepressents, before they even looked at any of the casues. we have to fight for as much investigation as possible.
Im from the South West, how about you?

 
Old 03-20-2010, 05:28 AM   #10
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Re: CFS? can't cope anymore... would love your thought

I'm from the midlands. They sent me to a gastro only because I demanded it and he was worse than the GPs, just refused to do any tests. He did send a letter back to me (after being horrible to me and making me cry) saying he'd give me a special sugar intolerance test as I mentioned not having fruit helped my stomach. This came back negative.

I went on many individual elimination diets, like dairy and gluten and they all seemed to only slightly help. The anti-candida diet took a good couple of months to help - it was hard as when I first started it my symptoms worsened but I think this was die off. I tried many different anti-fungals, caprylic acid, grapefruit seed extract and pau d'arco, all in capsule form - not at the same time though, I rotated them. I now just use things like coconut oil (full of caprylic acid) in my cooking. You have to build the anti-fungals up really slowly - I ignored this advice and felt awful!! I think I just wanted to get it out of me as quickly as I could. Also, I started taking probiotic tablets right at the start and had to stop taking them as I was constantly running to the loo! When my stomach settled down a bit (after over a month) I found I could then handle the probiotics.

The shoulder/back pain has been with me a while. I used to get it when I had been doing cleaning or something and just assumed I'd tired myself out... now I seem to have it almost all the time. I read it can mean issues with your liver but I'm not sure. I mentioned it to my doctor but every time I go I have to describe my symptoms all over again (they don't seem to read/make good notes) and I forget some symptoms - due to the number I have to remember!

There are lots of different autoimmune diseases in my family, like 2 different Inflammatory bowel diseases (IBD), RA and others. I think the only test they gave me for this was the ESR test a few years ago. The problem is that these only usually show up as positive quite late on, as I know from a friend whose tests were negative for years until they found out she had an IBD. I might push to get this re-done aswell as an ANA test. I also want thyroid antibody test but am doubting they will do this! You should probably ask for these too, one of the symptoms of an autoimmune disease is constant overwhelming fatigue!

I find it rediculous that doctors are so quick to prescribe anti-depressants. Do you work at the moment? I can tell how downhill I've gone in the last year because not only have I stopped most social activities and all hobbies but now I'm making endless mistakes at work! It's so horrible feeling so out of control with your body, especially as we're pretty young!

 
Old 03-21-2010, 07:40 AM   #11
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Re: CFS? can't cope anymore... would love your thought

Hi, I've just been reading up on how vitamin D defficiency can cause alot of the CFS symptoms. Have you had your level checked? I am definately going to ask for this test as living in England we barely even get any sun so are probably lacking in this!

 
Old 03-23-2010, 01:51 PM   #12
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Re: CFS? can't cope anymore... would love your thought

My gastro doctor is also pretty useless and unsympathetic, last time i saw he he said there not many nore drugs i can try so i mite have to just 'live with it' which obviously i cant do. Just shows how much he understands what im going through.
Have you considered acid problems? The no fruit helping could well be due to candida but its also highly acidic so maybe this has something to do with it? I sometimes have trouble with very acidic things like orange juice and when i eat really unhealthy i almost feel like im sweating acid as it burns my face and feels odd.
Have you tried VSL#3 probiotics? My dietician recommended them and ive read lots of good things about them on the web. I havnt tried them yet but im pretty sure you can get them on prescription here.
It's definately worth asking for those tests, im going to ring and ask for more blood tests.
I do work but im being made redundant soon... frankly i cant wait but i know ill have to continue to work time or ill spend all day everyday in bed. i find it so hard to get through a day and have major vision problems in work looking at screens under the horrible lights. Im hoping to go back to college in September but theres no way i can do that until i get well. ive been putting education off for years, this is the last chance for me to have any chance at life.

 
Old 03-23-2010, 09:22 PM   #13
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Re: CFS? can't cope anymore... would love your thought

Ask your doctor if you can try a course of nizoral or diflucan - if candida is playing a part, it should produce a dramatic reduction of symptoms. Even if the doctor doesnt beleive in it, a 10 day treatment would be atleast harmless.

Taking probiotics (vitacost sell a great one, NSI 20:10 Porbiotic, for 10 dollars for a 50 day suppy) and prebiotics (inulin, Metamucil Fibre Sure) can also be a massive help.
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Old 03-24-2010, 12:06 AM   #14
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Re: CFS? can't cope anymore... would love your thought

It sounds you are dealing with a lot. My Chronic Fatigue started when I was 19, though I did not have nearly as severe symptoms. I would recommend a few things:

See a chronic fatigue specialist. They're expensive, but really worth it. You cut through a lot of the crap you have to deal with standard physicians. And they believe you, they see people like you every day. They know what to test for with blood tests and what range of treatments work (yes, there are treatments). There's no magic bullet, but working with the right physician, you can start to feel better gradually. Continue to work with your standard physician to make sure you do not have other issues.

Consider that you may have Irritable Bowel Syndrome and Multiple Chemical Sensitivities (MCS) (both of which are often seen with Chronic Fatigue). I had MCS for years and did not know, this contributed significantly to brain fog, depression, irritability, etc. without ever knowing the cause. You pretty much have to eliminate all chemicals, perfumes, deodorant, shampoo, etc. You'll notice a different right away if it is due to this. For IBS, generally eliminating wheat, dairy, sugar, coffee, tea, meat heavy diet should make a difference in a day or two. So yes, that means mainly steamed/grilled fish, veggies and white rice (brown rice causes problems for me).

Find what you can do. To stay sane and find some sort of enjoyment, you have to find what you can do and what makes you happy. Even in the worst of it, I still did the things I could do. Even if this is a short walk or bike ride, you need to find these activities and friends.

Try meditation and breathing exercises (pranayama), breathing especially if you cannot do regular exercise. This may sound out there, and not recognizing your serious health issues, but trust me, this has and always makes me feel better and is one of the great learnings of having my illness and suffering.

Best of luck.

Last edited by moderator2; 03-24-2010 at 06:56 AM. Reason: please read the posting rules

 
Old 03-24-2010, 10:14 AM   #15
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Re: CFS? can't cope anymore... would love your thought

hey i was also the same age as you from 18 going through all this and ill share a little bit of help.

it sounds to me as if theres more than one thing going on here. The first would be your digestion, your symptoms indicate low stomach acid. Best way to up your stomach acid level is via the use of digestive bitters and re-establising your good flora levels via fermented foods/probiotics.

The digestive bitters will cleanse your liver so make sure to increase your intake of water this will help alot of your symptoms also.

The other thing that sounds from your fatigue is happening, is adrenal fatigue. Adaptogenic herbs such as ashwagandha, jiaogulan, schizandra berry and suma root will help increase your energy, restore proper adrenal function and resistance to stress/illness.

Hope this helps, i was at my ends wit also with CFS/digestive issues.

 
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