Help please xx

Hi all x. I was diagnosed with chronic fatigue syndrome & functional muscular chest pain with disordered breathing ....

This has been a 2yr struggle which started off with a sinus infection! I was told it was chronic, i was on antobiotics for 16 months solid, i started having stomach issues panic attacks ect cut my diet very restrictivly to help me fight the panic & pains ect and now, 2 years later, tons of crazy symptoms, no real pain, but my swallowing and breathing are really concerning me as is my diet. I have eaten the same 5 foods - which includes milk and butter, for a year now. Ive lost a total of 5 stone in 2 years and i am just 2lbs from being underweight, but no one seems to see this as a problem apart from me. I feel like o cant belly breath anymore, i physically shudder, yet im told its functional. I dont know how people can live like this?? X. Any advice would be greatly appreciated x

6 Replies

oldestnewest
  • Hi Pinkangel,

    So sorry you have been going through such a tough time.The initial weight loss I see as a good thing but you naturally want to be able to maintain a healthy weight now.What are the five foods that you eat ?Do your symptoms get worse if you stray from this diet ?I assume you have been checked for gluten intolerance .You might want to take a vitamin/mineral supplement if you are not already doing so.Do you feel like you struggle to swallow or more like there is a lump in your throat at times?Regarding breathing,does it feel like hard work and muscles are not working properly and is it constant or fluctuating,does anything seem to make it worse ?What,if any, medication do you take for your symptoms?

    No advice at the mo I'm afraid as I am unfamiliar with your particular symptoms but I would be interested to learn more.Angela x

  • Hi. Not sure I can help as not medically trained or anything. With a very restricted diet I would suspect that you are missing some very essential vitamins and minerals. Have you had any of the following checked? They are known to cause neurological and muscle dysfunction if they are too low...and for some people, too low is still well above recommended minimum levels! Magnesium (essential for muscle and neurological health), Vitamin B12 (essential for neurological health), Vitamin K (kind of new to this kind of discussion, so your dr may not see it as essential, but it's good to get it checked), Vitamin D. Other supplements that might help may include a good multi vitamin/mineral (since your diet is so restricted) and a Multi B vitamin.

    I am surprised that you have kept milk in your very restricted diet. Gluten intolerance is extremely common in people with functional disorders, and milk comes along for a number of those who have gluten problems. Many of us have improved significantly after going on an extremely strict gluten free diet.

    In spite of traditional thoughts about oils and fats, it seems that we need to increase our good fats in our diet...by a lot! Coconut oil especially is good for us to maintain good joint and muscle function.

    If you have a lump in your throat when swallowing, it could be functional or it could be that your neck has a kink in it. If you run your fingers down your spine behind your neck and there is a significant sharp bend in it, usually around where your shoulders are joined, then then can cause the lump when swallowing. Stretching exercises designed by a physiotherapist are good...but not some others that just make it worse! An alternative is to slowly turn your head left and right while swelling - if it's your spine, one direction will be a lot easier while the other direction will make swallowing virtually impossible...so turn the better way when swallowing.

    all the best...and change your diet to include a wider range of meats, fish, vegetables and fruit. I track my diet at myfitnesspal.com and they have a lot of good suggestions.

  • Sorry ive just seen these replies! Thank you so much for replying and with your suggestions x. Basically ive eaten the 5 same foods for 2 years, i also ate macaroni cheese until august last year but cut that out and my phlem production has almost halfed since. I eat the exact same things at the exact same time every day. 1 slice of wholemeal toast with 1 portion of baked chicken every morning, lunch is 2 slice of wholemeal toast & 3 rashers of smoked bacon minus the fat, dinner is 1 1/2 baked chicken with mashed potatoes mixed with butter & milk and supper is 1 1/2 slice of wholemeal toast.

    I havent eaten a fruit or veg in over 2 years now and the only things i drink are bottled water and about 20 cups of tea a day with semi skimmed milk. I started having reactions to foods when i first got sick, doc said little allegies and advised to restrict diet, i did that and then i was on 27 different meds over a 2 year period for illnesses it now turns out i didnt have. An endoscopy revealed gastritis, esophogitis and a hatial hernia. Theyve said i have ibs and reflux although i have no reflux symptoms. I tried 3 different proton pump & h2o blockers and they made my symptoms worse. I havent been tested for any mineral or nutrient deficiences as my gp didnt think it was needed and now my neuro has diagnosed fnd & crohnic fatigue, theres no need to apparently? Which i feel is very wrong. I honestly believe its all down to my crazy diet, meds tearing apart my whole gastro tract and the fact i was on abti bs for 16 months solid. I now suffer from severe food phobias and im terrified to change/try anything else incase i worsen symptoms as i havent a clue what is good or bad for me. Ive been advised to follow a fodmap diet, but the stomach cramps seem to trigger my breathing probs and im litteraly just too terrified to do anything now without knowing roughly whats likely to happen. I havent managed to swallow any kind of pills since choking last september on paracetamol, so i have no pain relief whatsoever as all the liquid variations are sucrose based, which because ive been defecit of sugar for so long would cause my body to crash apparently? I feel so stuck. Im sure my breathing problems stem from a diaphram problem possibly linked to my hernia, but theyre adamant its not. I have no pain as such, but any time i eat or stretch or lift things i feel a constant tick in the middle of my ribs, i always bellu breathed before after 3 years of training to control my asthma this way, so thats why my body seems to be taking it so badly as once it starts i can take a deep breath in no probs but i feel a tightness in the middle of my ribs spreading out down both sides of my ribs and my stomach shudders as im releasing my breath and it goes on from there. I cough, gulp air, yawn anything to try help me reset it. Im virtually bed bound for the past 4 weeks as even walking to the toilet was triggering it. I have a hot water bottle pressed to my lower ribs 24-7 now and its the only thing that seems to ease the ticking x

  • Hi Pinkangel,

    I went gluten free for a while after a sterilization op (Filchie clips ) as it seemed to badly flare my IBS symptoms (couldn't eat for a fortnight ).I found a whole range of items in the gluten free section of the supermarket so the diet didn't have to be boring.After a few months I gradually introduced gluten back into my diet and seem OK now.I only get symptoms with pain/spasm at a certain time of the month,leading me to surmise that it is hormone related.

    During my illness two years ago (suspected Encephalitis ) my stomach was like a cauldron for several weeks.I took loads of Gaviscon (aniseed,as I found it less sickly than peppermint )I ate only Ready Brek for weeks but took vitamins/minerals ,B12 and omega 3 - these were easy to swallow with a mouthful of moist soft porridge..I got soluble paracetomol from my GP and was advised to take the max dose daily.Not only is it a pain killer but also an anti inflammatory and has a calming effect on the nervous system - do look it up.The aggravated/lump in throat feeling can be caused by bad digestion or anxiety.

    Not sure what you meant by the ticking but I developed an internal ping feeling below breastbone during illness that has remained,if I rub with knuckles in that area I can bring up wind,after a few tries the ping stops,so it appears to indicate trapped gas.If you meant muscle twitching,I get that sometimes also,then again I have some spasticity as a result of the illness.

    Try not to focus/worry too much about the symptoms as this tends to magnify them,If they felt you were in any imminent danger the doctors would not have let you go home.Take care, Angela x

  • You sound like you have a lot of my problems! Breathing, diaphragm issues, ibs, gastritis, problems swallowing, suspect hernia that they couldn't find, etc etc.

    I have a semi paralyzed diaphragm which seems to cause the same issues that you are having with breathing. I suspect mine is half neurological and half functional in origin. Fixing the other issues you have should help with this. A simple chest X-ray shows my right lung is several inches shorter, with a huge dome shaped diaphragm sitting way up high inside my rib cage instead of down where is should be almost below it.

    You diet is almost exactly the opposite of what you should be eating...apart from the meat, which is good, the only other things you are eating are bread and milk. I would bet almost 100% that they are the main and possibly the only cause of your is, gastritis and possibly even your swallowing issues.

    As you say, you are frightened to replace them, so do it gently. Replace all the bread with rice. Boiled rice with meat, rice cakes instead of bread. Rice and pears are usually considered baseline foods when checking for allergies as almost no-one ever develops sensitivities to them. So, introduce pears into your diet.

    A day or two later, after your body has had a chance to adapt to this very gentle change, try challenging gluten by eating one slice of bread, and see how your body handles it. I bet it won't like it one little bit, and you might be ill for a few days, firstly with pain and bloating, then feeling like a migraine the next day and like a bus has hit you the day after. You probably won't sleep the first night, either (Valium or even the milder natural form Valerian, plus Paracetamol/Tylenol is the only way I can sleep after an accidental ingestion of even the tiniest amount of gluten, such as in the coating on frozen potato chips!)

    Once you have settled down from that test, switch from milk to soy milk. Make sure it is gluten free, as in Australia where I am, half the brands of soy milk aren't gluten free. Again, wait for several days, then challenge it with one glass of regular milk (or just enough for a cup of tea/coffee). My very first bad reaction to dairy was 35 years ago when I had a cup of tea with milk for the very first time...My goodness, did my oesophagus burn after that one! I kept drink milk for another 15 years, and eating ice-cream and cheese for another 5 years after stopping the milk. My issues with milk are a lot more than just lactose...it also includes milk solids.

    Also swap your butter with non-dairy and gluten free margarine or coconut oil.

    There are lots of guides out there for re-introducing different foods back into your diet, checking for food allergies/sensitivities as you go. Naturopaths and health food shops are also excellent at supervising or advising you. Let us know how you go. Remember rice and pears/pear juice are the best start you can make, and rice makes a good substitute for bread/biscuits.

  • Diagnosed yesterday, Jan 14th. I too have breathing, swallowing problems which have worsened along with the weakness , fatigue, right- sided muscle spasms, stiffness, double vision, right foot drag, heaviness, etc etc etc. Each post I read sounds like what I deal with everyday. I can't believe how much worse I have gotten and still trying to have some type of quality of life. I cannot walk very far before having to sit down due to fatigue, weakness, shortness of breath. Am concerned about what's ahead for me.

You may also like...