Strange CFS and sleep observation

Hi Paul

Brilliant news again! Makes me think yeast is a biggy for me bloating wise as we discussed that earlier in the thread. Milk is in lots of ready meals, crisps etc so do check for that. Is used in flavourings too as well as yeast.

Sounds like you're already feeling the benefits from eliminating these things from your diet. I bet it's kind of exciting?!

This heat is knocking me out! Hope you're doing ok in it.

Beverley

Hi Beverley

The heat is knocking me for six as well, so many times during the day that my eyes just want to close but not having actually done much all day, it's quite hard work and I do sympathise with you.

Funnily enough I have always suspected wheat and yeast as a couple of my triggers, but never thought milk was one of them. Thing is, as well as myself working in a processing dairy for a number of years, my father has always worked on farms and we used to drink milk basically straight from the cow (obviously filtered and chilled, but not pasteurised). I never had any problems with it, and my friends used to love coming over just to drink our milk as it was so nice, I'm wondering if this may have contributed to my intolerance to it. My last job, before I got ill, was working in a bakery, obviously loads of wheat dust and yeast floating around the working environment, and before that I worked for a well known agricultural company making cow feed, in which the main ingredients used were wheat and barley with lots of the dust from these items being in the environment. I wonder if all these exposures have contributed to my intolerances???

I do have a bit of a problem with regards the test results though, the company who did the tests said that if I have successfully eliminated foods from my diet for a long time then there is a chance that they may not show up as intolerances during testing. This means that I could be intolerant to other foods due to my limited diet, however they did recognise Tuna as being an intolerance and I haven't eaten that in years. They did also say that during the elimination process there may well be times that I actually get worse before I get better, for two reasons. The first one is that I'm cold turkey and I may experience withdrawal symptoms. The second being that the high levels of antibodies produced from my intolerances will still be attacking areas that are now not subject to suspect foods, apparently it could take up to a week for antibody levels to reduce to normalish levels. They said my antibody levels were huge.

I am certainly feeling a bit more upbeat about the recent developments, but even though there seems to be improvements, I remain skeptical as it is early days yet, but after months and months of feeling really quite ill, I'm certainly in a better place right now. Long may it continue!

Hi Gordon

Thanks for the info, I've found a wiki page for Dr Rosamund Vallings and it lists all the literature she has been involved in so I may well try and get hold of some of it. Any help is always appreciated, and I do wish your son, you and the rest of your family all the best for the future!

Hi Paul, thanks for your reply and kind words. I noticed some of your discussion surrounding food, dairy and wheat. As a family we have looked at the blood group diet for many years and used it to help rule out some foods that we don't naturally metabolise so well. I too grew up drinking a pint of milk a day, believing it to be healthy and only when I stopped did my fits of sneezing become so much less. My son is big on food, and has been for a long time. As an athlete he pays close attention to his food, sometimes to healthy extremes, save for a weekly cheat meal. We generally try to cut dairy and gluten down a good bit and now with his condition we are starting to study what may be beneficial. It's like a restart for us and I have recently been advised by close friends whose son had ME while he was still at school, to look into some basics like selenium, vitamin C, magnesium(we use raw cacao powder in smoothies and hot chocolate without sugar) and astragalus.(don't know what that is yet) We have been on this marathon for over 20 months, not knowing where the finish line is, and now with this recent diagnosis we are at a new beginning, but same marathon. Part of our

route will be to study foods, herbs and natural remedies as much as possible. I wish you too, all the best, continued progress and full recovery.  

I've actually had Acupuncture recommended to me by a doctor, which is very strange as doctors don't really like to recommend alternative therapies, but my doctor has covered as many possibilities as there are to try and make my life more enjoyable that he feels this might be worth a try, that is desperation now!

I've been looking up a lot about Candida recently and how it's symptoms can mimic the symptoms of CFS/ME, which are uncannily similar. The reason I'm suspecting this is due to having a food intolerance test done recently, and one food that I am severely intolerant to is yeast. Candida is a yeast like fungus, so found it quite strange that with this intolerance and my symptoms together seem to fit with suffering from Candida. I know I have a severe intolerance to yeast as whenever I eat bread, I suffer with incredible stomach pain a few hours later. I always thought it was wheat or gluten, but my intolerance tests revealed no intolerance to either. I'm sure previous treatment of back pain with Naproxen, which was suspected as a popped disc but now I believe was due to stomach ulcer(s) due to having typical symptoms of ulcers, has ruined my gut flora / bacteria and allowed Candida to thrive. According to a locum doctor I saw once, being given Naproxen without stomach protection, and having stomach ulcers was in his words 'a recipe for disaster', this is the point where my life started going downhill gradually. Another reason I believe Candida being my problem is that with CFS/ME I've read that sufferers should get a variation of good and bad days, my symptoms are constant and don't seem to get worse or better, it's just this underlying ill feeling everyday that can change in severity from one hour to the next. I recently had two positive faecal calprotectin results, indicating high inflammation levels which was suspected as an IBD, however the follow up colonoscopy with biopsies came back fine, in fact I was told during the procedure that my rectum, colon and terminal ileum looked extremely healthy indeed. I've also recently discovered that both Candida and food intolerance reactions do cause inflammation, which now could well be the reason for the positive faecal calprotectin results.

All I know right now Gordon is that 4 years on, I'm still none the wiser despite all the research and tests I've had done, but also realised that there still are plenty more avenues to consider, whether they lead to helping my symptoms, well that's any matter. All I want is to be able to have the odd few days hear and there to enjoy a bit of a life, I've already missed being my brothers best man at his wedding last weekend which has really upset me, now my aunt in desperately ill in hospital and we've been told she will pass away any time now, and here I am stuck at home feeling awful and won't have a chance to see her and say my goodbyes and probably not be able to make the funeral as well. Even my nearly 70 year old father has more life than me, and he suffers with diabetes and heart problems.

Sorry to waffle on so much, I'm not in a very good place at the moment, I just can't believe that 5 years ago I was a fit, healthy person that was able to do anything, go anywhere, eat anything and now I just feel like a piece of meat that just keeps living. I'll keep plugging away at trying to make life a bit easier for me, I haven't given up totally yet, I'm just starting to loose a bit of hope at the moment.

I do wish you, your son and all your family all the best and hope your research goes well and you discover some useful findings. Good luck for the future!

Hi Paul,

Firstly I wish you continued courage, belief and fortitude to continue this battle and win. After 4 years!I had no idea you have been riding the punches so long. There must be a solution and my wish for you is that you find it.

Two things jump out at me from your message. I have a cousin married to a doctor that I am in touch with. Haven't seen them for decades as they live overseas, but just yesterday my cousin suggested acupuncture and told me that both she and her husband go for acupuncture regularly. I have a Chinese client and once asked him about acupuncture and he said it does work and sometimes maybe not. I have had it myself and along with some specific stretching exercises my 5 years of chronic back pain started to subside. I do suspect the exercises may have been dominant but it all happened at the same time, many years ago.

Another thing stood out for me and that is that last night, while talking to another doctor who was assisting us in a referral, he asked me if, based on the book I am reading, ( Dr Vallings) I believed the diagnosis of CFS/ME was correct. I explained that I thought it was, but also mentioned that the neurologist who made the diagnosis, left the door open for another possible opinion, if we thought we needed to explore further. The doctor I spoke to last night explained how a second opinion completely changed the outcome for a young man who was told his future was bleak and later went on to become an athlete competing for a national team that fared very well on the world stage. He also told me that another rugby player, like my son, had a concussion, like my son, more than two years ago and was also not recovered yet, but not considered to have CFS. My son did have a serious infection (and several other injuries) that was considered to be the trigger.

Alternative treatments have never phased me. I have been to doctors who recommend certain medicines that look scary to me and I have taken that script to a homeopath and got them to translate the medicines to something natural, often with great results. To be fair, these are usually for minor ailments and I do believe that  all doctors have much to offer us in our process of healing. I believe they all want the best for us and I also believe that sometimes the answers can come from one or both or more of the medical fields. So I would explore all avenues without the exclusion of any. I once asked a doctor who dealt with both fields of medicine to prescribe something homeopathic. He told me what I had was going to kill me if I didn't take the anti biotics, which needless to say I took and I recovered well- thankfully! 

Sometimes the answers are difficult to find, like in your case, and my son's it seems. I wish I could find the article I once read, since now it is all just memory. I mentioned before that I used to sneeze a lot during my milk drinking youth. I still get the odd sneezing attack where I'll sneeze for a few minutes and always try to think if I had any dairy or what it was I had eaten before. However, it is so much less than when I was younger that it is nothing more than a few minutes of irritation. I once read an article about a guy who sneezed all day. It went on for many years. He clearly couldn't work at all since apparently he was just sneezing all the time. His life was a mess. He saw doctor after doctor and eventually one doctor did some tests and they found one of the foods he was eating was the trigger. He stopped eating that food and soon afterwards his lifelong ailment simply dissipated. He stopped sneezing almost completely and got his life back!

I have never forgotten that story and it comes strongly to mind right now, when I think of what's happening to you, to my son and the many others out there. If there is an answer out there and we can find it, we can heal and move on. I wish that for you and for every other person on this forum and beyond. We have no choice but to find those answers and get better.

We will continue seeing the doctors we are getting referrals for, researching the literature, and yes, we will try acupuncture as well. My cousin recommended we try 12 treatments and see what gives.

You have developed tremendous courage to have endured what you have for so long. I wish for you continued fortitude and I wish for you that you find your health, and get it back and that there is brightness in your future as well. I wish that for all of us.

All the best, Paul.

Gordon.

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Hi Paul,

Just wanted to tell you that i can relate to you on the missing family occasions. My mum died last year and it was really hard for me to visit before that. At that point i was relying on public transport and the journey was awful. My sister, who lived 5 mins away was very pushy and i felt so guilty that i couldn't visit more. I got to see her the day before she died and she had no real responses at that point. She had pneumonia and Alzheimer's and i made two epic journeys to see her. It was so difficult and i wish i could have been well and brought her home with me. Can someone take you to see your auntie? Can you use a wheelchair? I have one for bad days where I'm forced to go out for eg hospital appointments. I can only imagine how you felt about missing your brother's wedding. I've missed family get togethers and have come to terms with the fact that i just can't make it sometimes. It's hard to be gentle on yourself in these situations but, you have to be. You didn't ask for this condition and you don't deserve to feel so ill. Don't feel guilty.

Beverley

Thank you for your kind words, it’s very nice and reassuring to know that others have been in the same boat as me, although it doesn’t really help the guilt and disappointment I feel right now, not meaning to sound ungrateful of course. Unfortunately my life is governed by my Fibromyalgia, CFS, digestive issues and Anxiety. Personally, it the digestive problems and anxiety stopping me from going out for fear of having a flare up. There are days when the FM and CFS don’t feel that bad and I feel able to do something or go somewhere, and then just have to deal with the consequences the next day. But the other two issues are always putting doubt in my mind, and then stop me from doing anything, until I can get my digestive problems under some sort of control, and then address my anxiety, which has been extremely prominent in my life, then I feel quite stuck. It’s a long road ahead I know, but as long as there are kind people out there, like yourself Beverley, willing to help others through it, then things can surely only get better.

Thank you again so much, I really appreciate your comments.

Hi Paul,

Yes, guilt and disappointment are hard. I too have digestive issues that concern me sometimes. I had a colonoscopy where everything was fine and super healthy so the medical profession aren't too bothered. I've been to see bowel dysfunction specialists too. Again, they aren't worried! In a way i am lucky because my system appears mainly regular and so I've only had issues a couple of times when out. Disappointment and embarrassment i can totally understand. Is the anxiety linked to that? I'm dairy and wheat free and vegetarian which i think helps a little. I've been having some physio on my back too which i believe has also helped somehow ? Do you have any physical involvement from anyone?

I saw a muscular skeletal specialist on monday who was quite understanding of cfs/me, fibromyalgia and the sympathetic and para sympathetic nervous system being affected by it. Am in much pain right now in my neck, head and shoulders that i know is from doing too much earlier. So frustrating but, not much i can do about it!

Hope you're having an ok day of it today.

Beverley

Hi Beverley

Sorry to hear your in a lot of pain, must have been something about yesterday, I had a pretty awful day too. Really hope you are feeling better today.

I had a good long chat with my brother last night, he seems fine with me not being able to attend the wedding and be his best man, he just wants me to get better and get my symptoms under control so I can start to enjoying life again. This has helped reassure me a great deal, doesn't fully get rid of the guilt, but then again I'm one of those people who struggle to let go of it.

I've always suffered with anxiety as far back as I can remember, stemming from my childhood and having to deal with abusive parents where drink was heavily involved, having to move to different schools often due to my fathers work, being bullied due to my size (I was quite a large chap), this then carried on into later life where I would get into trouble, nothing serious mind, but enough to affect the course of my life, then my wife cheated on me, had to go through a messy divorce where she would use our children to get at me, then have to deal with my children being bought up by different chaps from one month to the next, and letting previous employer walk all over me as I was too afraid to stand up for myself. I've always struggled to make the right decisions in life due to lack of guidance, I tried to do the best I can in life, but for one reason or another everything I seemed to do went wrong. So as you can see I've always had background anxiety issues, now that I've settled down with someone who has proven to be there through thick and thin, my children are old enough to make their own minds up and see me without being held back, and I don't work so I haven't got a boss walking all over me, my anxiety has now turned into generalised health anxiety. The problem I have is that I'm so worried of having a flare up whilst I'm out and about, that I'd rather not risk it. At times my symptoms make me feel like I'm going to faint and I really don't want to go through that panic feeling in full view of the public. If my symptoms weren't so random, and I knew when waking up that this was going to be an ok day, then I'd happily go out and try to get some quality of life back, but my symptoms can come on and go away from one hour to the next, I would just like some consistency.

As for physical involvement from anyone, unfortunately I live in the middle of nowhere really, the nearest CFS clinic I could attend as I have been diagnosed with CFS as well, is over 40 miles away from me. I have to rely on our local doctor for support and advice, and he only has a certain amount of knowledge, so I'm very stuck in that respect. I'm grateful I have the opportunity to live in a rural location, but it's not always that helpful to live in the country.

Thank you for your comments, it does help a lot to know that I'm not alone and all help and thoughts are greatly appreciated.

Hi Paul,

I'd love some consistancy with the condition too! Random, fluctuating, up and down is the nature of this condition for me also. I plan things and have to cancel them but i don't want to feel i can't do things. I am at peace with the disability this condition brings. I am glad i have a wheel chair when I'm so disabled by it that i can get out at least. I've had to accept the vulnerability because it gets too much otherwise. I've been so incapacitated and have cried so much with this condition. It doesn't matter if i do things i enjoy or things i have to do eg: washing up. I still get the same symptoms or i may "get away with it" and then end up very poorly another day. My walking is my main issue that bothers me as I'll set off ok and then start to drag my feet and it will be agony and I'll be walking like I'm wading through treacle. I used to worry about it but, i don't really care what others think as it's nothing to do with me if they judge disability meanly.

You can have telephone appointments from the cfs/me service nearest to me, maybe you could too? Also IAPT psychological services could help you with the generalised anxiety and could also offer telephone appointments which may help.

Unfortunately today hasn't been great as pain wise i have suffered. Hopefully tomorrow will be better.

Beverley