Does anyone else have problems with their digestive tract when a flare up begins? I describe it as if I can feel my whole body shutting down. (And I can actually feel it happen). Immediately I start having problems such as huge swollen tummy when eating (I'm normally a size 12 and my waist goes to 42"). Then I have constipation and can go days without going, currently 6 days. I have no power or need to go. But suffer horrendous pain. I was hospitalised for 6 days in 2009 and had enemas and morphine but no diagnosis. Been treating it with Movicol and Mebeverine when I feel it start. Just had X-rays and CT scans but all clear. I've an appointment with a gastro guy at the end of November, but want to go with more details or a better way of explaining it. As Fibro affects muscles and ligaments, isn't the digestive tract just one long muscle so why wouldn't it be affected? Currently sitting with a tube up my nose, down my throat and down into my tummy as they also think I have silent reflux. Again I think this is another muscle not working properly due to my Fibro.
Or could it be the other way around? The Sunday Times had an article about leaky gut. It could be the cause of ME. Could it then be linked to Fibro?
Feeling sore, exhausted, choking (only 5 more hours to go), fat, old and crying all the time (but then this could all just be the menopause!!) Just want to curl up and sleep forever.
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josieb
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I felt so sad reading your post as it seems to me that you are going through a terrible time. I have had IBS for years which tended to be the gripping pain and trots kind of thing now it tends to be the constipated windy grumbling kind of constant pain. I was diagnosed with GORD some years back and have take medication since. I am wondering whether the constant pain lately not excruitiating but always there is through the medication as all these things that we take to supposedly make us easier build up in our bodies. When I first had this and was on cocodamal and pregablin the IBS was the one thing that really disappeared and my doctor said it was because pregablin helped to calm down nerve endings and as we had nerve endings in our guts that is why it was better. Now unfortunately my new doctor did not like te medication I was on and stopped cocodamal and DHC Continus and I am on other pain killers which I reckon is causing these problems. I am like you that I can literally start the day a size 12 and end up a size 18 with a tummy puffed out like a balloon. I have had tests for gluten intolerance and nothing shows. I had to laugh as the doctor sent me a diet sheet as my cholesterol is up and literally 3/4 of the things listed I can't eat because of the IBS we all seem to be in a vicious circle.
I do hope that they find the cause of all your problems. Take care, my thoughts are with you. Try to just take each day at a time as it gets too much if you try to foresee what the future will be. let us know how you are getting on.x
I too have been tested for gluten, and as I'm also asthmatic, I have been tested for oats, and a whole hosts of other food stuffs, all came back negative. I've done the rounds of Pregablin, Tramadol, Citalopram, Ammitripyline and I've done two drug trials. One trial was fantastic but hasn't been licensed yet. During the trials you have to go drug free for several weeks before the start. I found that there wasn't a huge difference between being on thee drugs and not. Except the whole host of other drugs I had to take for side effects. So two years ago I came off all Fibro drugs. I manage it by resting, breathing techniques, retreating and a glass of red wine when it gets really bad (I'm extremely lucky I have a very supportive network of family and friends). The way I look at it there's been more studies into the side effects or a glass of red wine than any drugs we take. I'll let you know what happens.
Amazingly it's my asthma consultant pushing this and he's very interested in Fibro as he thinks so many auto immune conditions (and he's convinced that's what Fibro is), are linked and genetic. And the additional fact that my sister is anaphylactic and also suffers joint pain, though hasn't been diagnosed with Fibro yet (just a matter of time). My mum was forever in hospital for tests before she died (breast cancer), and we think she also had Fibro, and then a second cousin was diagnosed with Fibro at 21, and had her gallbladder removed last week after 5 years of tummy problems, she's only 23.
Thank you for replying, it's quite cathartic to actually write it down and have someone reply with similar problems. I'm lucky I have support but sometimes I feel like all I do is whinge, I get sick of hearing myself sometimes. So thanks.
It does look as though there is a lot of family history there. I always joke that I got the worse bits of the health problems of both my sides of the family. I am also asthmatic and spent alot of time in hospital as a child and various tests showed allergies to this that and the other which later tests as an adult didn't seem to show although I wasn't tested for food intolerances apart from the gluten. I have a permanetly runny nose but no infection with it and always feel as though I am blocked up at the same time and sound croaky and antihistamines only havea limited effect. I get sick of people asking me if I have a cold and always have to have tissues and hankies handy, I joke that I need a permanent wind screen wiper for my nose.
I often wonder whether to try reducing my medications right down as I also am on high chlorestrol and high blood pressure drugs as well as the concotion of painkillers and with all the side effects it makes you wonder. I definately wouldn;t mind ministering to my ills with a glass of champagne four times a day!
I think there is starting to be a bit more awareness of fibro as a illness but as we know it mimics so many others I think your specialist could be on to something there.
Anyway fingers crossed in the near future that they find something to help us. Anyway let me know what happens.xxx
I am so sorry to read that you are suffering and struggling so much with all of these issues, and I genuinely hope that you can find some resolution and relief to the problems. My own personal belief is that anywhere there is a muscle then you could get Fibro, as it affects muscles? That is what I believe?
I think the leaky gut syndrome is somewhat controversial and not studied scientifically in any way. There is a woman who started the theory who gave a talk at the last Fibro conference, I bought her book, then I looked her up on the web and she is making a hell of a lot of money out of her theories but she has done absolutely NO research or even fully recorded any cases. Her name is Dr. Natasha Campbell something and I think she is a charlaton, other people have leapt on the leaky gut bandwagon and they have slightly different regimes and they too make a lot of money out of selling books, food supplements, and consulations. Guts do 'leak' anyway - they have holes in them so that your food and any poisons you happen to put in your mouth (including your medications) get into your bloodsteam. The theory of Dr. Natasha (who qualified in Russia and is not registered as a doctor here in UK) is so complex that if you keep to her regime for 7 years as she suggests so if you say it doesn't work, she will say you did it wrong. I am a real believer in alternative medicines but not this one.
Oh josieb - I can empathize... For years the intestinal problems were the first signal of a flare up for me, and all the other symptoms followed in a predictable sequence. How many holidays or special events were ruined by this... does that mean there is a stress connection? A relaxed colon is a happy colon? ☺️I think your muscle-argument is valid. My TCM doctor once explained to me that the elimination process uses up a lot of energy and an exhausted body will preserve enrgy at all cost; keeping in waste will then toxify the system further.... would that link up with the leaky gut argument?
Looking back I also recognize so many of my symptoms in my mother and other female relatives.
I am sorry you had such an awful time yesterday, hopefully there is an answer to show for it.
Yes, yes, yes! Thank you for your post, as you have described exactly what I have been experiencing for months now. I had been putting off making an appointment with GP as I was not confident I could describe to him effectively what was happening. My Digestion slows almost to a halt and my stomach becomes sore and inflamed. I take Lactalose daily, and my digestion is so slow that Laxatives which are supposed to work overnight can take 2-3 days to be absorbed. I am frequently uncomfortable and backlogged by 7-14 days, but it is reassuring to see that I am not alone or cracking up! I will pluck up the courage to make that phonecall today in the hope that my GP may be able to prescribe something more effective than the 'over the counter' preparations I have been using.
I hope your discomfort is shortlived and that your spirit is soon uplifted.
hi im suffering with gastro problems at the mo so much so that last sunday i was taken to A&E i waited 61/2 hours on atrolly in a corridor to be told this i have had fibro for over 10yrs but only diagnoised 3yrs ago i was told it was the muscle gel i was useing causeing my gastro pain but i think it may be my fibro as i have been useing this gel for 6months plus an never had this problem before ive been given omapezole to take hope ypu are as well as can be take care joanne x
Thanks for all of your lovely comments. They really help. It's not so scary when you know you are not going mad and others have the same things happening to them. Yesterday I began to feel a bit more normal, not so sore and more active. And guess what, my tummy issues started disappearing too. Got into my new favourite trousers last night and didn't have tummy cramp once. My friends and I were laughing at my huge baby belly carefully disguised under a long top, so at least I'm keeping my sense of humour. And today I've never stopped going to the toilet so I think by tomorrow I'll be back to normal. And this has all happened with no medication. As the tests I had this week meant I couldn't have any. So I'll be asking the Gastro guy how and why does my body do this. It definitely shuts down and then starts again. Hopefully as he works closely with my Asthma consultant he is as open minded and can start seeing the links between gastro and Fibro. My appointment isn't till the end of November but I'll let you all know what happens. Thanks you
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