Strange CFS and sleep observation

That sharp pain sounds like gas from the wheat. My daughter is presently trying the ketogenic diet which eliminates alot of carbs and dairy. Amazingly she has been very "quiet " as to the gas issues. But you need to eat , and meat and veggies is nutritious! Ive been taking a probiotic 25 billion? And i havent been experiencing IBS as bad. Good luck to you. And all of us! 🤗

Hi Paul,

What about a home visit? A district nurse could take a blood sample. Or arrange patient transport to go for appointment. They can also have someone there to take you in a wheel chair to your appointment. It's a big step to do this, i know but, allows you to get there. I used to have to use patient transport to get to and from the hospital due to not being able to get there. Cfs/me does seem to have an affect of tolerence of food/chemicals/alcohol as well as tolerating exercise etc.

It can get extremely frustrating with our condition as things seem to change so much with no rhyme or reason.

Beverley

My partner has suggested a wheel chair a few times now, and it is my pride and anxiety that gets in the way. All my problems started nearly 4 years ago, yet it's only been in the last couple of years that my diagnosis has really taken hold and made me housebound. Even now I do struggle to understand and accept my diagnosis, and I think that is what is holding me back. It just feels like there is something else wrong with me, but without knowing the effects CFS and Fibromyalgia can have on someone as it affects different people in different ways, and is always evolving and changing, it's hard to get my mindset to accept the diagnosis.

I have had many blood tests in the past, including celiac disease, thyroid function, among others, and nothing has ever been found. I've also had stool and urine tests done and we thought at one point we might be getting somewhere. I had two separate stool samples tested for faecal calprotectin which came back positive with one reading being 1400 and the other being 300. However the follow up colonoscopy with biopsies said everything was normal, my colon, terminal ileum and rectum apparently are very healthy, apart from haemorrhoids, which I later found out are a form of inflammation and as such were possibly the cause of the positive faecal calprotectin results. I don't really know what other tests can be done now. I feel like I've hit a brick wall!

Hi Paul,

I took the leap and asked my doctor for a wheelchair a couple of years ago and he was happy to refer me for one. That was the first step. The second, getting someone to take me out in it! I went out late at night (so no one could see me) i felt so bad having my son push me but he was happy to oblige. It meant that i could now attend appointments instead of cancelling and it really gave me peace of mind. I haven't used it at all this year but have rested more and managed to get a car that has helped greatly. My cfs/me is from a car crash and so a car was a major hurdle as well as getting confidence boosting driving lessons which took alot of energy. I can't believe how far I've come with that. I dont drive on bad days and don't go out then. I have a daughter who is on the waiting list for an aspergers assessment and i have to supervise her to school so the car is an absolute bonus. I'm lucky that my other children have helped too as i haven't always been well enough to take her to school. Am sure these extra issues don't help my recovering.

Re the food issues, i don't have wheat or dairy and cut down on chillies as too many make me itch. Wheat free bread makes me bloat which is interesting so i cut back on that. Think it's the yeast. I seem ok with gluten because i can eat oats. Someone on here even had trouble having oils. I've been vegetarian anyway for over 30 years and gave up the wheat and dairy before the cfs/me. I was having feroglobin recently and although I didn't feel better, i didn't feel worse, if that makes sense.

Similar to you, my colonoscopy was also clear and healthy which i wasn't surprised at. All working fine but the car crash took away sensations i used to have and thus they had to rule out internal damage. It's weird when everything is normal but you don't feel "normal" isn't it?

I met a guy recently who all of a sudden developed an allergy to eggs, doesn't have cfs/me but, just thought I'd mention it in case it helps as he was ok before and now needs an epi pen in case he accidentally ingests it.

Beverley

Wow Beverley, it sounds like you have had a huge ordeal to cope with, and I'm happy for you that you seem to have overcome those hurdles and made a better life for yourself, your story definitely gives me hope, even though there doesn't seem to much at the moment. Its obviously helped having your very helpful children to ease some of the strain on you, good on them!

My CFS came on by a couple of factors. Firstly, being put under tremendous physical and mental stress at work, which developed into back pain, which was diagnosed as a popped disc. However, at the time I was also experiencing signs of upper GI bleeding (likely stomach ulcers) which can also cause back pain, likely to be caused by stress. The pain in my back wasn't easing so the doctor prescribed Naproxen without any stomach protection. Thinking it was only a harmless painkiller I took it without question, I wish I hadn't. Within a day I had unbelieveably bad upper abdominal / stomach pain, it felt like my stomach was being ripped apart from the inside. The next day, with continuing severe pain, I went back to my surgery and saw a different doctor, who looked down my throat and told me to stop taking Naproxen straight away and put me on Omeprazole, which incidentally I'm still taking. Within a day the pain subsided dramatically, and within another 2 days there were no more signs of upper GI bleeding. So for me it was a combination of work stress, and the trauma of the pain the doctor put me through giving me Naproxen.

I'm like you as far as bread goes, I cannot touch the stuff, but I can eat oats. I've also wondered if yeast might be a problem food for me, but even with leaving bread and yeast out of my diet, I'm no better. I do need to build the strength to attempt other foods again, but the fear of being in pain, dizziness and sickness puts me off.

I'm sure that given time I will find the combination of things that can give me some relief from all the symptoms I experience, I just need to be patient and become a bit more adventurous. Thank you for your comments, I do appreciate them.

Hi Paul,

I'm amazed with the painkiller link. Just before wheat and dairy started to become an issue, i took ibuprofen for a frozen shoulder. I was pregnant at the time and, like you, thought harmless painkiller. I've never been a pill popper and didn't realise the damage they can do when not taken with food. Also, i won't bore you too much but, the UK government ok'd a milk boosting hormone (without telling the public) it changed the protein in the milk and now, 20 odd years later, they talk about how people who have milk intolerance can tolerate type a1 milk-the untampered one. The boosting hormone was removed as calves couldn't digest it. Anyhow, feel this was somehow linked to my issues. My children are also intolerant to milk and my youngest to wheat and milk.

Naproxen caught my eye too. I was put on this after the crash. Not straight away as i didn't want anything (i had a fractured spine it turned out) when i tried to move it hurt like hell and i took paracetamol but didn't touch it! Believe i took naproxen only once as it was like someone removed my brain and put a cloud in there. I just sat there wanting my cup of tea, looking for it, when it was in my hand. Co codemal after that.

Seems we both got our issues from stress/trauma. I woke up the day after the accident in this other world and never got back to where i was. I had a job i loved, i was injured and exhausted and got weird sensations and was terrified of cars! That was a major shock to me. I was stood in the hospital car park with ptsd symptoms. It was surreal.

Your path seems to have gone similar but, internally it has hit you hard. It can be such a fight. I had a friend with cfs/me too who had the endoscopy due to similar internal issue but, no bleeding like you just Acid reflux, constant gas, stool issues etc

It can feel like a brick wall can't it? Since the crash, My right foot (and nose) go freezing cold irrespective of the weather. So, i had nerve conduction study and mri to show me that there's nothing visable to record. I have a band around my middle that has little sensation and am no longer ticklish down my sides (again since the crash) mri again shows nothing. I recently started physio to help and found out something interesting about the deeper skin having a memory of the trauma and it reacts because of it. Quite amazing really.

It fascinates me how our bodies and minds react to stressful/traumatic events. Mostly it wants to protect us from harm but, can really be so unhelpful doing that!

Apologies for the waffling on, was on a role.

Beverley

No worries about waffling on Beverley, I could go on until the cows come home given the chance, the problem is I'll always end up no better off for it.

I know if it wasn't for my digestive issues I would definitely be able to have a bit more life about about me. If I do have Fibromyalgia and CFS, I'm sure they are being fuelled by the digestive problems I'm having. I've tried to get help from the doctor and dietician, but as I said before in this discussion we have all hit a brick wall, and I know it's down to me to try and make some changes to see if I can alleviate some of my digestive symptoms. Bloating is the worst aspect for me, I'm 5' 10" tall (175cms) and 10 1/2 stone in weight (67kgs), so for my height I'm the perfect weight, but I constantly look about 8 months pregnant. I also feel the need to pass wind and burp a lot, but most of the time I can't, meaning I get more and more bloated. I'm sure I'm so bloated at times that my digestive is being put under a lot of stress and strain, and I wouldn't be surprised if it is pushing against other organs or bones inside my body, which in turn causes pain, nausea and general discomfort. I cannot remember the last day that I felt sort of normal, there's always a sense of feeling just general abdominal grogginess (if there is such a word). Reassuring to hear your friend also had similar digestive problems with their CFS, sort of helps me realise that this all could be related to my condition.

I would carry on chatting but I'm having to deal with some quite intense, internal pain around my pelvis area at the moment, just below my belly button, it really quite bad to the point of taking my breath away. I would go to the doctors again today, but they'll just say it's IBS symptoms, as they always have done. They could well be correct, and since talking to others I have been made to realise that IBS can cause sever pain and be very debilitating at times. Such fun, another day of feeling terrible!!! 

Take care and all the best, and thank you again for your comments.

Hi Paul,

Yes, i get the bloating too and my stomach becomes hard as a rock and i too look pregnant! Not a flattering look at all. My research in diet, due to my intolerances, is that wheat and milk products are in everything! Crisps, drinks even hand creams. To eliminate is quite the challenge. My ex partner also used to bloat and make gurgling sounds and cut back on coffee and eat more porridge and this cut the symptoms down.

Sorry to hear of your pelvic pain, i know things can feel quite intense. Have a read about muscle spasms. It mentions the intestine spasms. I read about them because my legs "lock" and I'm in tremendous pain for a couple of minutes then it can go. Most of the time the locking just means i walk like I'm wearing callipers. It helps an understanding of the pain cause at least. Today my head hurts and i have slight neuralgia so will go now and hope that we can both have some relief from symptoms today.

Beverley

No I'm not. I have tried a few, Amytriptaline (? spelling) being one, but I seem to have very bad reactions to them, almost feeling like I'm going to have a seizure, so I stopped using them. I know I've heard they can have positive results, but as I said, I just can't tolerate them.

https://www.verywellhealth.com/postural-orthostatic-tachycardia-syndrome-pots-1746386