Right sided pain and "IBS" diagnosis... not convinced, need advice
Posted , 4 users are following.
Hi all,
Coming to the forums after reading many threads on here via Google, need some input into my current situation...
I've been ill one way or another for the best part of 7 months now, which seemed to start around the time I was suffering from high levels of stress at work.
Started the year needing a root canal, which was a rather unpleasant experience and took weeks to settle down (more on that later). Was given a 7-day course of antibiotics in case of any residual infection. Before the root canal was done my neck tightened up so much my shoulder was pretty much up by my chin such was the discomfort.
Following that around March I caught some sort of bug which caused fatigue, nausea etc. and took the best part of 3 weeks to go. During that time suffered from indigestion, getting up in the middle of the night to pee as well as shaking and pins & needles in muscles when walking.
After lots of physio and personal trainer I managed to get muscles back to some sort of normality and did some light exercise, although any physical activity did come with much longer recovery times in terms of muscle soreness etc.
A few weeks later I felt my neck start tightening up again then the sensations went into my jaw, chin and cheek. Upset stomach returned along with shortness of breath, muscle spasms and dizzy spells. Went to the GP to get a blue inhaler and also some antibiotics as the doctor agreed that it was likely a sinus infection.
Unfortunately said GP didn't read my notes and gave me antibiotics (Amoxicillin) that I was listed as being allergic to (I've never been told which paticular ones so didn't know what I was being given). Within a few hours I had a bad reaction to them, woke up in the middle of the night doubled up in pain with stomach cramps and severe pain in the middle-right section of abdomen.
Called 111 and went to A&E where reaction was confirmed, only treatement was to use water to flush the antibiotics out and Gaviscon to settle stomach.
Carried on feeling unwell for a week or so, using the little bit of sport I could do as distraction from the dizziness, twitching and upset stomach. Went back to see another GP who attributed some symptoms to severe hayfever (levels are very high right now) and advised antihistamines.
At this point neck glands were also sore but not visibly swollen. Fatigue continued, along with inflamed feeling all over body. Continude to notice pain in my right side, made worse when bending down.
Carried on for a few more days until again being woken in the night by pains in the right side. Went to GP who noticed my temperature was up so sent me to A&E with suspected appendicitis. Had blood tests, UTI test etc. and a doctor at hospital pressing various parts of abdomen who then came up with a diagnosis of "non specific abdominal pain". Said nothing serious and take painkillers.
The day after I came down with the symptoms of flu, which then really came over the course of 2 weeks. Massive amounts of yellow mucus from the left side of my head along with sore throat, stomach upset and all the other nasty fatigue effects of the flu virus. Never had anything like this as the flu jab usually keeps it at bay but I'm guessing my immune system was shot from the previous bug and antibiotic reaction.
Bowel movements were a bit constipated so initially was given Mebeverine, which helped restore some normal function and I hoped that would be the end of it.
However once the flu finally went it left me with bubbling, twitching sensations in my stomach, right side and into legs. I also noticed that when sitting down e.g. at a table to eat I could feel a strong pulsing sensation coming from the stomach area. Got quite scared by this (aneurysm) so went back to the GP to get it checked out.
Had another examination pressing on stomach etc. and the diagnosis was "IBS" due to stress. Was given Omeprazole 40mg and told to come back in 2 weeks. Those pills seem to have made me 10x worse as when I take them I get acid reflux (never had that before), raised anxiety, dizziness and recently migraines. Also since going on the pills now suffering with extreme muscle fatigue after pretty much any physical exertion and even vision problems (blurred vision, floaters etc.)
Want to get off this medication asap as reading threads on here the side effects do seem to outweigh the perceived benefits. Also seems they're mostly prescribed for GERD rather than IBS? Qutie ironic given they've caused reflux in my case.
Based on various threads I'm trying some more natural options like Slippery Elm before meals (seems to help), having probiotics such as Kefir and also tried the low FODMAP diet on GP advice.
What's worrying me is the fact the right sided pain is still there, along with the feeling that something is pressing on my insides if I bend over or sit up in bed etc. The tightness in the right side almost seems to go into my back and leg as well.
I'm getting scared by some of the links I'm reading about misdiagnosed IBS and some of the serious illnesses it can most (big C included) then see this one just after signing up, terrifying...
https://patient.info/forums/discuss/irritable-bowel-syndrome-not--521868
I'm going to ask for a referral to go private when I next see the GP this week as I feel the NHS are happy to go with this almost guesstimate diagnosis of IBS without running any tests to prove otherwise or try to treat the root cause.
What I'm not sure of is if all this is a complication of the various illnesses I've had over the past few months or if it goes back further. Thinking back I can remember having a strain feeling in the right hand side for over a year now but blamed it on a sports-related muscle strain as I was very physically active prior to all this happening.
Apologies for such a long post but so much has happened over the past few months and I'm still trying to figure out what's going on 
0 likes, 19 replies
margaret22116 egs1707
Posted
hi, I had a lot of similar symptoms and issues to you. The pain has moved around....in my back in my side etc. I had the diagnosis of irritable bowel and I had the dreadful migraine. The neck pain too.....muscle and joint pain. I was also just getting a lot of stuff going on....flu like symptoms and nerve pain. Sciatica. So many issues. It was a terribly frightening time. And all the time no one coming up with anything.
It was only after going to a rheumatologist for the joint pain that I got on the track to diagnosis. I have a form of vasculitis. It is an auto immunde disorder of which there are a number of varieties. Specifically I have Bechet's syndrome but there are other forms of vasculitis too. The symptoms seem random and unconnected but basically vasculitis can cause inflammation in different parts of the body including the central nervous system.
Have you just been seeing your family doctor or have you been referred elsewhere?
egs1707 margaret22116
Posted
Hi Margaret, just the GP so far as he's sitting on the fence using anxiety and IBS as a catch-all diagnosis. Blood tests are all normal (had to have ALT re-done but it came back normal 2nd and 3rd time round) so they use that as an "all clear" when I feel anything but.
Did you have a virus as the trigger for this and has the treatment helped you now it's been identified?
So many of these potential explanations also seem to have "no cure" in the description as well which scares me with the thought I'm on a one-way street with no way of returning to previous healthy state
margaret22116 egs1707
Posted
yes anxiety and IBS was what I always got too. Blood work was unremarkable for me too. The problem with these disorders is no blood test. They are currently working on that at Addenbrooke's in Cambridge.
No not in my case a virus. But it's interesting because that can be a trigger.
The way it was explained to me is that you can have the dodgy genetic make up but something triggers the gene into action....virus infection whatever. I had had this in childhood with a long period of remission and it came back.
Incurable, yes these things usually are. But it is not to say how you are going to be with it.
Some people I know take one medication and get along fine with it. Others, like me, have complex symptoms which are tricky to treat.
Sorry, wish I could give you a bit more reassurance about what is going on but your story, give or take, is so similar to mine.
My current treatment is fantastic and I am symptom free right now. If you get something that works for you, it really can work super effectively.
You need to be asking your gp for a referral now. If it is something like this they can't diagnose it.
I don't know where you are based but I'm in London UK. I know of specialists around the UK I could recommend to you. If you're in the States or somewhere else my knowledge wouldn't be so good but I can ask on my international help group.
Please feel free to ask anything else you want to. I'm pretty open to discussing symptoms etc. I think it's crucial you move forward with a proper diagnosis.
I feel certain that there are also things which could be more transient sorts of illnesses which cause similar symptoms but I think the referral would be the same, maybe an immunologist.
egs1707 margaret22116
Posted
I'm near London too, will be asking for some sort of referral on Tuesday, will see what this private health insurance I've been paying for actually gives me as I can imagine waiting times via NHS are going to be horrific...
kate01577 egs1707
Posted
I had similar symptoms to you too, pain in my back, constantly dizzy and fatigued and the pain in my abdomen was unbearable and constant. After months of being in and out of hospital and a colonoscopy I was diagnosed with severe IBS, everyone said it was great news (as many suspected I had Crohn's disease) but to me it just felt like a smack in the face! I felt like I had just gone through all these procedures and pain only to be told that there was basically nothing wrong with me! I immediately thought that it had to be something worse as there was no way a small disorder could possibly cause me so much pain. The healthcare system in Ireland is so slow that I couldn't even follow up because it would take even more months of running around so for now I am going to attend my gastroenterologist and see where it gets me. As for the pain, I'd recommend bringing up fibromyalgia with your GP or even google it and see if you can relate, it's common among people who have severe IBS. Also if you find yourself with little energy look up chronic fatigue syndrome as it also ties with IBS in many cases, good look!
egs1707 kate01577
Posted
Hi Kate, unfortunately I'm all to familar with both of those as the thought of CFS being the side-effect of these flu viruses came up a lot while I was in the worst of the muscle cramps \ fatigue \ pins & needles and searching around (mainly on this site) for answers.
Again the thought of that for the rest of my days is a depressing one, especially as sport and being active makes up a major part my life.
Thanks for the replies so far everyone, really appreciate it
margaret22116 egs1707
Posted
margaret22116 egs1707
Posted
egs1707
Posted
The main muscular pain that I do feel that needs to be got to the bottom of is the right hand side and belly button area.
Is this really typical of "generic" IBS as it feels like something is either swollen or strained in that area that also causes gas \ acid when I'm hunched over, doesn't feel right at all...
margaret22116 egs1707
Posted
no to me it's not IBS. I kept on getting that too. IBS is what they say when they can't find the cause! It felt like something strained to me too. And the pain in my lower back. Awful. I would also say to Kate if you're seeing a gastroenterologist they may not be that much use but ask him/her about wider systemic disease....they won't be able to diagnose it but may refer you on. x
egs1707 margaret22116
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margaret22116 egs1707
Posted
ok so I went to a rheumatologist in Lewisham because of joint pain. She considered ra but said she thought I had an underlying inflammatory condition. She sent me to a gastroenterologist thinking maybe Crohns. He said IBS. Found nothing.
I was also referred to an oral immunologist.In coversation with her we got to talking about ulceration (I have a specific form of vasculitis called Behcet's which causes ulceration). I was sent to her because they thought maybe Sjogren's. Sjogren's was pretty much ruled out by her but she mentioned the Behcet's and I got referre on again to an immunologist at the Royal London. A year and a half of monitoring symptoms and she diagnosed it.
Key for me was an episode of mild uveitis while attending her clinic and also the ulceration specific to Behcet's.
Other forms of vasculitis have different key symptoms. x
kate01577 margaret22116
Posted
egs1707
Posted
Bit of an update... not getting anywhere quickly at the moment...
GP still seems to be holding back but said I could come off the Omeprazole straight away, which was at least some relief as the side effects were far outweighing any positive effects (didn't really see any in the time I was on it)
Was told I had to wait 2 weeks for the Omeprazole to leave my system then do a stool sample to rule out H.Pylori infection. Can do that on Tuesday then further weeks of waiting before they'll refer me to a gastro specialist.
In the meantime I had a week away pretty much blighted by the right side pains again, was told to just eat normally and see what happens and the end result is I now feel bloated (starting to become visible under clothes) and have lots of grumbling \ gurgling noises in the stomach. Muscles hurting and feel really fatigued, praticularly in the morning.
The more I read the more scared I get of Bowel cancer and how IBS was misdiagnosed in young people who ended up with it. Quite frankly I'm terrified now and it seems the only way to check is the colonoscopy op, which adds to anxiety levels even more.
Or alternatively there's the less sinister but life-changing possibility of gluten intolerance etc. Not sure if the plethora of blood tests has included this so far but won't find out until I see the GP again and who knows when that will be.
Really losing hope and getting scared in equal measure now, the future looks bleak either way. Really feels like this is the year I've lost my healthy status, can't believe this is happening
margaret22116 egs1707
Posted
Hi...muscle pain...fatigue....ibs. I suffered all of those symptoms due to an auto immune disorder. Any other health issues at the moment. Seems amazing that no one ties the symptoms together but they don't and blood tests are often of little use.
Ask your gp to check your inflammatory markers x
egs1707 margaret22116
Posted
Is that the CEA test? Been reading about it on another post. Not sure if it's already been done but will have to ask, hopefully I can get an answer without a 3 week wait for an appointment.
Was up at 4am with nausea, gurgling stomach etc. again and today the whole abdominal area feels like it's being ripped apart.
Will have to get in contact with the local private hospitals and go down the expensive route to get some proper medical diagnosis rather than being fobbed off to keep the budgets down...
margaret22116 egs1707
Posted
egs1707 margaret22116
Posted
After being diagnosed with celiac (see below) the last doctor I've seen has agreed to do the ESR and CRP tests - just hope I don't have that as well as this gluten isses which are a nightmare on their own.