Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

No sugar (including honey, fruit etc)
No refined carbs
No dairy
No yeast
No citric acid
No vinegar or fermented things
No smoked foods or strong spices
Only organic meat (I'm more or less veggie)

Basically, I can eat wholegrain rice cakes, salad (no dressing), veg and potatoes. It's pretty much an anti-candida diet because there's a theory that my mitochondria can't make energy properly due to damage to my gut & how my body absorbs nutrients. They think that having lots of antibiotics when I was young many have caused the damage so this diet is meant to allow my body to heal. Am now on lots of supplements to try and help as well. It's a bit extreme but I was so ill & desperate to try something as painkillers etc just weren't helping.

That sounds a difficult diet especially when you have children to feed, Grockle. Everything is worth a try and if you are getting even a little better its worth it.

Wow grockle, well done for persevering! I am thinking if doing the clean eating diet so cutting out all sugar and processed foods. We eat mainly gluten and dairy free as ds1 is coeliac and they both have dairy allergies too.

I need to try something as this amitriptyline has made me put on half a stone in 2 weeks!!! I'm trying a chromium supplement as well to see if that can help combat some of the amitriptyline caused cravings for sweet things!

Hope everyone has a good weekend. I'm only just up but need a nap again!

Wow, Grockle sounds hard-core, you're my hero! A few people have said I should do that diet (or similar) as I seem to get thrush EVERYWHERE very frequently due to my immunosuppressant drugs. What sort of nutrition doctor is it you see, if you don't mind me asking?

Oooh! Grockle! I did that type of diet with Barts as part of a trial, but I couldn't keep to it :( I really hope it works for you :) Good luck!!

wow that's some diet good on you for sticking to it mush be hard but hopefully worth it

I assume no fermented things means no wine or yoghurt? Hope it works for you Grockle. I have made a mental note to cut out all sugars ( except my D-ribose), in the hope it helps. I wonder how long I will last (hide wine behind back).

Chiropractor still thinks the inflammation in my back is contributing to my symptoms.

Candy, it may well be worth it. The dr I see is a private one - he used to be a GP & has done lots of work with Fibro & CFS. He's a homeopathist mainly but is able to treat CFS on the NHS.

Magso... no alcohol! I can eat a little natural yoghurt so that's what I have for breakfast.

Am also taking B vitamins, magnesium & zinc as well as a load of probiotics.

Wow, grockle, I'm impressed! How do you do it? I find one of the hardest things for me is finding the energy for making food, and so I end up eating poorly just so I can eat something. I can't imagine if I had such a restricted diet.

Wow grockle I'm in awe of your willpower. Glad it's only a temporary diet though!

I think I have a cold it's been brewing for a while.

Also I have an ultrasound on Wednesday to look at my troublesome ovaries. Nervous as to what they'll find.

It's hard not to give in and eat cake but rice cakes are easy to eat so that's what in living on. And natural yoghurt. I can have some hummous (but lots contains citric acid & I can't have that)

I was so unwell last year, I was willing to do anything that might work. I think you get to a certain point where the struggle seems worth a shot. Had I not been terrified of ending up unable to speak, move or look after myself & DS again, I'd have less incentive.

Hope ultrasound goes ok fuzz

Hi guys! I hope you don't mind me cutting in. I occasionally lurk on this thread as I suffered from CFS all through my twenties so I really sympathise with your pain, despair and frustration.

Mine was triggered by glandular fever and caused all sorts of probs including food intolerances/ allergies. I would get reactions in the form of blisters when I ate gluten, dairy, yeast. I went on a very strict anti candida diet too and stuck to it religiously for a year and a half at which point I was able to reintroduce things. It definitely helped to repair my system.

I also went to a nutritionist who put me on some comprehensive supplements which made a big difference too (after years of trying lots of stuff including dosing myself with natural thyroid obtained from America and making myself tachycardic as a result...yes I was desperate).

So I just wanted to say that while the diet is tough it can make a difference any doesn't have to be forever.

I will admit I have been a lot better since seeing ( or rather telephone consultations) with a nutritionalist. I was also told to limit sugar (I am a savoury eater and not into cake so don't eat many sweet things anyway), but I was advised to drink water with lemon juice first thing which I struggled with ( it upset my stomach). Then I had a long list of supplements including probiotics, b vits,( including pantothenic acid) vit d magnesium and various fats - eg ALA etc. I do think this needs someone who knows what they are doing, and its quite expensive. Its a pity the NHS does not look at nutrients and that side of things. Its probably time I went back, but my money is going on the chiropractor at the moment. I will let you know if chiropractor helps with my CFS (the theory being that nerve compression at the discs and inflammation can cause functional loss as well as pain) - I am still unsure although it helps with the back pain obviously. we are probably all different.

I've lost 2kg this week purely by cutting out junk and reducing carbs. I have been randomly vomiting but I've been randomly vomiting for a month now and it hasn't affected my weight, so I'm going to assume it's the new healthy eating plan. The rheumatology nurse and the healthcare at home nurse, who checks on my new treatment, both feel the random vomiting is not from the injections but it seems a bit coincidental. The trouble is that my symptoms are improving but is vomiting a fair trade off?! Anyway, my fatigue has hugely eased thus proving my theory that my fatigue was caused by untreated widespread inflammation. My pain levels have reduced, now all I need to see is less swelling and more joint movement and I'll be a happy bunny. I'm hardly 'cured' and I'm probably not in remission but a reduction in symptoms is good enough for me. Now all that's left to do is to stop puking in embarrassing places.....!

Welcome Totesamazeballs, its nice to hear positive stories. Hope you are fairly well now.
Glad your treatment is helping candycoated, just hope you can find a way to stop the vomiting, as I am sure it is most unpleasant.

My 9am cortisol test came out low, but its probably the CFS not anything else. Explains a lot though. I am at my worst in the morning. Whats the betting its high at night when I don't need it? I have not lost any weight despite trying ( and eating few carbs) but at least I have stopped growing - well I hope!

mago What were they testing your cortisol for? I have high cortisol, I was meant to have further tests but I never erm got round to it.

I thinks its because of low BP and tachycardia standing just to rule out addisons, however I think its just due to the topsy turvy world of CFS where nothing quite works properly. Have to do a short something or other test. Cortisol is supposed to drop in the evening ready for sleeping and rise in the morning for waking and to cope with the demands of the day. I always have trouble sleeping but then in the morning really struggle to get up again. It always helps to understand why I'm not working right!
Well now you are feeling a little better and have the worst of the inflammation under control perhaps you could chase up your tests Candycoated.

I just came to ask about Cortisol as I was meant to have some kind of adrenal gland test before I see the CFS/Fibro specialist again on Thursday.

Is anyone else under the care of Dr V. Patel at George Eliot hospital in Nuneaton? Asking because I think he said I could only have 2 appointments with him and this week's will be the 2nd one.

Hi Deepbreath. Do you know what test it is you are having? The test I am to have is a short synthesin test ( or something similar - not sure of the spelling. I think they do a blood test (to check cortisol), inject you with synthesin (which stimulates the adrenals to make cortisol) then redo blood tests to check cortisol goes up as it should. If it doesn't go up then the adrenals are not working properly. I think poor cortisol regulation is not uncommon in CFS.

Our local CFS/chronic pain/FMS clinic (miles from you) is run by a team of physio/OT/nurse so there might be a team or specialist nurse/OT to be sent to once the specialist is sure what is causing your symptoms. I was diagnosed by a endocrinologist (my GP was not sure), who saw me once and diagnosed after checking the test results. I only had to go back (2 years later) because some odd things happened when I went for surgery for something else.

Hullo everyone. Bad week so far. Very flat and so bored of it all. Can't summon up much energy. Had a good few weeks so might try to see this as a holiday but just feel so bleurgh.

Lumbar puncture on Friday, trying not to be nervous.

Finally been to see GP! Spent most of the appointment explaining about the tachycardia and my medicine, and he thankfully agreed to continue it, while he waits for the off-license approval paperwork to transfer over from my old surgery. I told him that I was having fatigue problems but would like to make another appointment to go into detail, and he has ordered blood tests for later this week, and then I'll see him again. I think this will work well, because I'll actually get to talk to him after the blood tests -- with the old GP it was just a 'everythings normal' answer from the receptionist (not even a phone call, because they only actually phone if there is a problem). He seemed very open and friendly and so I hope our future appointment will go well.

Hope all goes well, building & that you feel a bit better soon.

Raggedy, that sounds like a great dr

Hope all goes well tomorrow Building and the findings are useful.
Sounds like the new GP is just right Raggedy.
I am going to my local sports centre for a fitness assessment/ advice session. This could be very embarrassing! However I am hoping to work out how to get slowly more well, and build up strength in my dodgy back. One step at a time.

I've been struggling massively recently, although I'm having a better day today.
My fatigue has become disabling, every time I go to the GP she questions the diagnosis of Lupus, she thinks my symptoms are too extreme and varied.

Anyway, on Monday I developed a tremor so along with difficulty in swallowing and reduced reflexes, the GP has made me an emergency appointment with a neurologist, a throat specialist and a rare disease specialist. She also gave me a medication to reduce my tremor and some sleeping tablets.
I feel a touch better but my body feels like its in crisis, it's shutting down. It's a very scary time for me and my family.

What I really want is for Dr House to come along and diagnose me!

Accidental it must be very worrying. I'm so SO glad that your GP is making more referrals, though. Hope you get some answers and treatment soon.