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The UKFibromyalgia Forums • View topic - Your opinions please



Your opinions please

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Your opinions please

Postby Jimbo1968 » Mon Jan 04, 2016 1:02 am

Hello all my name is Jim and I'm 47 years old, please take the time to read my story, it has a lot of detail as I'm not sure what is or isn't completely relevant. About 2 or 3 years ago I noticed that certain greasy foods were giving me quite severe stomach pains while I was eating them (Macdonalds , Kfc , burgers and kebabs , you get the idea, all the wholesome foods lol). I done nothing about it for ages then in June 2015 I visited my GP about it, who thought I was getting acid reflux and prescribed Lansoprazole. I didn't go along with it and the tablets didn't help anyway. The only other health issue I have is a lifetime problem with psoriasis , which at times has been very severe (medical journal type severity)

On the evening of the 17th July 2015 I got some weird indigestion pain when I ate, this happened again the next day too I went to Chase Farm hospital the following day with these weird upper abdominal pains in front and back . They done an ECG found nothing wrong and let me go. That evening I was DJ'ing a friends wedding , while I was sitting there taking it easy , the pain would disappear and move to the extreme left back , then central , it would move around, all left side or slightly left of centre front and back but never in more than one place at a time. The moving pain made me realise that it wasn't my heart that was causing pain.

The next day gain I got a nervous twitch in my left hand then pains started again, I went to North Middlesex hospital this time. While waiting to be seen I got severe pins and needles in arms and legs and severe numbness in limbs that I could hardly walk. Anyway got finally seen, ECG, bloods all normal, because of numbness done brain ct scan found nothing wrong, the doctor asked me have you got any other symptoms , I said something stupid and almost seemed irrelevant at the time but hindsight may prove this not to be so insignificant , I said my eyes hurt in the wind (hindsight possible suggests dry eyes). I was released , went home went to sleep, when I woke all was well( no numbness or anything like that). I noticed also some hoarseness in my voice that same day, again trivial but possibly relevant.

Fast forward now to August 20th, I got a pain in my left hand side back all of a sudden , for some reason I also lost my appetite too , I was on holiday the next week in Paris , I struggled to eat much and kept getting these pains from upper chest to abdomen , front and back but all left side, on the evening of the 25th I went to a hospital near Notre Dame cathedral . Chest X-ray , bloods and. ECG later nothing was found and I was released . The next day I had pins and needles all day, which only disappeared when I went to sleep the following night, before that however I finally managed to eat a substantial meal, the next morning the diarrhea started , initially lasting non stop 5 days, only stopping with Imodium , since that day late in August I have not been 8 days without diarrhea, even when I'm not with diarrhea my stools are strange looking , often pale , often rough and fluffy and sometimes float. Prior to all this I'd suspected that the pains may well have been Fibromyalgia , however the gastrointestinal problems had taken priority.

To keep this brief I've had countless blood tests , stool tests an abdominal ultra sound and abdominal CT scan. With only a stool test indicating inflammation showing anything wrong.

Anyway I've got a few scans coming up but I have accumulated another couple of weird symptoms in the meantime. I keep getting a hot flush and sometimes a cold feeling in the back of my right ankle. Also when I'm eating food (any food not just greasy) on some days I get a burning type pain near my breast bone like I used to get of old but this is accompanied by a much more severe pain to the right just below rib level which is also a burning type pain. The food would hardly have left my mouth when this 2nd pain happens, some days it's really bad and scary other days it's non existent .

Also in the mean time the pains have migrated to both sides of my body as high as my neck and throat and as low as my legs and hips.
I have so much more detail and theories and questions to ask but this the story as brief as I could make it . I have omitted details of brain fog , dizziness , confusion , depression and anxiety which have all happened since late August 2015. Please give me your opinion.
Last edited by FluppyPuffy on Mon Jan 04, 2016 1:37 pm, edited 1 time in total.
Reason: Split post into small, clearer paragraphs for easier reading.
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Re: Your opinions please

Postby jllh03 » Mon Jan 04, 2016 3:31 am

Please get your checked gall bladder out. I had most if these symptoms for 12 mths and a locum dr sent me for scan and found my gall bladder was full of stones and pain in back was from them moving about. I had very severe sharp pain lasting from 10 mins to an hour that moved around my back. I also have costochondritis which is very common with FM. Please keep going to GP and see a different one if you can
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Re: Your opinions please

Postby moonphasewitch » Mon Jan 04, 2016 4:41 am

I would second the gall bladder reply, pressing hard on the right hand side below the rib cage is what a doctor did pre-scans to determine if my pain was because of my gall bladder. It got considerably worse within minutes of eating certain foods, especially eggs. I was initially fobbed off with the acid reflux drugs too but ended up admitted for emergency surgery as my gallbladder became infected. It can only be diagnosed by an ultrasound scan. I hope you manage to get this sorted out, or at least some satisfactory answers from your GP.
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Re: Your opinions please

Postby Carlyisfallingapart » Mon Jan 04, 2016 1:23 pm

I don't know as personally I suffered from similar stomach pains and sickness ten years back which they said was dyspepsia or an unseen ulcer ( had all the tests: ultrasound , CT , berium meal ,endoscopy, H pilori ) everything came back clear they treated me with ompeprozol and lanzeprazol and buscopan as they suspected I had an ulcer in my u bend . Skip forward ten years after being diagnosed with fibro and the doctor says it was more than likely a symptom of my fibromyalgia as I still get random sickness /stomach pain/ throw up blood/ have IBS . I'm still left unsure whether there was a seperate issue with my stomach or not .
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Re: Your opinions please

Postby FluppyPuffy » Mon Jan 04, 2016 2:07 pm

:welcome: to the boards Jimbo. I've moved you into here with this being your intro post. I've also split your post into smaller, clearer paragraphs to make it easier to read as quite a number of us on here struggle with reading large blocks of text.

With the array of problems you have described, expressing an opinion as to what could be the reason behind them is quite difficult as it could suggest any number of potential issues, some of which could be FM~related, or could be stand~alone problems.

If you haven't already done so, it might be worth trying to keep a daily journal/diary over a period of time to help illustrate how you are affected on a daily basis. Having something like this to show Drs etc can help show if there are any patterns/links in what you are experiencing. You could include a detailed food diary, rating/intensity levels for pain experienced {such as marks out of 10} activity levels, sleep patterns and anything else that you may thing helpful. Whilst a list of symptoms can be helpful, having something showing what is happening over a period of time helps add a bit more to that overall picture you are trying to explain xx


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Re: Your opinions please

Postby nogginpodge » Mon Jan 04, 2016 4:02 pm

I'm so sorry to hear about the problems you've been having. I've had fibromyalgia for 20 years now and one of the problems I find is the tendency to put every odd symptom down to the fibro. I think this is because there are SO many symptoms when you have fibro.

However, I began to experience all the odd pains, digestive disorders, heartburn etc that you describe and ignored it, putting it down to fibro. I woke up at 4am one morning screaming my head off in terrible pain (just below my sternum) and was rushed off to hospital where they found 2 huge gallstones. I had, apparently, already passed one and that was the pain I had felt.

If I'd had these symptoms investigated earlier it wouldn't have come to that emergency situation. I was admitted with acute pancreatitis, which is a life-threatening illness and had to wait a few weeks for my gallbladder to settle down before they could even operate.

I would urge you to get these symptoms independently investigated. I think its your gallbladder.

I have a feeling that the neurological symptoms of numbness, tingling, hot, cold etc. were caused by a flare-up in your fibro because of the other problem but this probably clouded the issue when you were admitted to the hospitals because they didn't know what symptoms to concentrate on.

I do wish you well, hope you get a correct diagnosis of your disturbing digestive symptoms. Don't ignore them, they won't go away! x
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Re: Your opinions please

Postby Jimbo1968 » Mon Jan 04, 2016 7:30 pm

I completely agree with all the opinions of you good people concerning my gall bladder . I've been to A&E on several occasions complaining about pale stools and right hand pain and specifically stated I was worried about pancreas and gallbladder . This has been to no avail. They entertain me with blood test for pancreatic function and scans , are they looking with their eyes closed .

I've paid a handsome sum today for a private Abdominal MRI scan. But the radiologist has already told me that it is no better than CT at checking organs it is just better at looking at small bowel. The location of the pain is certainly classic gall bladder . The problem is the timing , as all the text say (and many people who have had the problem). The pain comes as a result of eating , not literally just as you try and down the 1st mouthful.

Incidentally I've had all the classic fibro symptoms , relentless tiredness , pains all over body , brain fog . As I said originally my symptoms were classic fibro however once the diarrhea kicked in I had to prioritise my problems. However I feel that the diarrhea and fibro are intrinsically linked. Help one and you'll help both I think (hope).

I have some tips for other fibro sufferers to try, it was stuff I was told to do for the gut , however they seemed to have helped more with pains than bowel movements . I'll start another tread for this.
Last edited by FluppyPuffy on Tue Jan 05, 2016 1:24 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Your opinions please

Postby *Lisa* » Wed Jan 06, 2016 1:45 pm

Have you had a gastroscopy to add to all of the tests ?

Im no doctor but what I think is that you need a scan to see if you have gallstones. Iv had this and had the op not long back to remove them but really suffered well for 6 months before removal.

Also Iv had a gastroscopy to and they found a hitas hernia causing symptoms. This type of examination should find if any the cause of symptoms when you first eat etc...

2 things going on I think.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Your opinions please

Postby Jimbo1968 » Wed Jan 06, 2016 8:36 pm

Hi Lisa sorry for late reply. I'm having a colonoscopy and endoscopy next week. Maybe it will show something there That the previous 3 scans have missed. I hope so (I don't want something wrong but I'm not normal now and don't want to carry on like this ). I don't get it , my dad had gallstones, he didn't even make a fuss they found them easy. Why can't they find them in me. They're is a version of the endoscopy called an ERCP which takes a much better look at bile ducts gall bladder and pancreas, however at nearly £2000 cost private (no insurance ) I'll have to hope that the NHS endo finds something. Thanks you for your input . Jim
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Re: Your opinions please

Postby *Lisa* » Thu Jan 07, 2016 12:05 am

As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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