Desperate need for help and advice

[Millysacca]

I began to experience pain in my central back and left side in November 2020. I went to the GP and had my stool and bloods checked which were all found to be fine. The year of 2021 was fine for the first half and then in August 2021 I had COVID and was bed ridden for a number of days. After my recovery I noticed my central back pain and left side pain had returned and it’s never really gone away since then. I’ve experienced a number of different symptoms over the past 2 and a half years which has resulted in me having a colonoscopy, CT, MRI, Ultrasound and numerous blood tests. All thankfully have come back positive but I’ve really struggled during this time. It’s been suggested my symptoms are consistent with IBS. I’ve tried to follow a FODMAP diet. However, I continue to live with episodes of night sweats, severe pain in my left side, random stabbing/shooting pains, constipation, stools full of yellow/brown mucus, aches and fatigue. It’s had such a negative impact on my wellbeing and the wellbeing of others. I have a young family. We’ve recently moved abroad mainly because of it as it had been suggested that it could’ve been led from stress from my job. I’d appreciate any advice or feedback from others who may have a similar story.

[winfong]

Unfortunately, IBS is mainly diagnosed by a process of elimination. I guess the good news is that it's not something more serious. That said, IBS can be awful.

Except for the night sweats, all the things you describe are IBS symptoms. That would actually point to inflammation - Crohn's, IBD, etc. Those would have shown up on the tests you had though. Was there any talk of your having a stomach bug?

You rightly ascribe stress as one of the triggers. I'm wondering, though, if moving to a new country isn't stressful in itself.

Have you tried any meds for it? What type of IBS do you have - constipation, diarrhea, or mixed? Knowing that, I'm sure this group can have some recommendations.

[Millysacca in reply to winfong]

Thanks so much for the reply. My night sweats have been awful over the last week. I’m in severe pain on my left side and definitely constipated. It’s interesting you mention Crohn’s and IBD as I’ve always felt my symptoms were more in line with these but they should’ve been highlighted in either the colonoscopy or CT scan. My symptoms have been ongoing for over three years now and it’s had such a negative impact on my wellbeing.

[xjrs]

It sounds like you have IBS-C (constipation dominant IBS) with visceral hypersensitivity (IBS pain) - though discuss this with your GP or gastro to verify. I have this and experience it as lower back pain overnight/early hours of the morning. The thing that has helped me with the pain has been Alflorex probiotic and Linaclotide on prescription.

If you have a gut bacterial imbalance, dominating bad bugs can oversensitise intestinal nerves causing pain (which can be referred to other areas of the body such as the back) - stress will also amp up this effect. A good probiotic like Alflorex may help with this. Linaclotide also helps to calm intestinal nerves - this reduced my pain by 50%-60% - adding in Alflorex reduced my pain to zero (unless I am eating something that I know disagrees with me still, though Alflorex has made me tolerant to a wider range of foods including fibre). I would try Alflorex first in addition to the Nerva gut directed hypnotherapy app to help with the stress.

Also what is your fibre intake like? I manage the constipation with dietary measures. I can post those here if of interest?

[Millysacca in reply to xjrs]

Thank you so much for the reply. I’ve been really struggling over the past week with regular night sweats and pretty much agony on my lower left side that prevents me from being able to sleep on it. I’ve an appointment with my gastroenterologist tomorrow so will be sure to mention your suggestions.

[CBRGirl]

I first just want to say thank you for being open to sharing your experience. I have been dealing with the same symptoms. I can especially relate to the back pain. I then spend a significant amount of time concerned about my health, no doubt, making everything a lot worse. It’s a terrible cycle. I just want to feel normal again. To not wake up with back pain and the constant concern that something more sinister is going on.

Like another poster had said, it’s good that your test results came back positive. I honestly am working to do what I can to eliminate inflammatory foods and find other foods and supplements that fight inflammation. I really think that and gut flora being way off really contribute to the issues I’m having.

I hope you find relief soon. But again, thank you for sharing. I know I’m not alone in my symptoms.

[Millysacca in reply to CBRGirl]

Thanks so much for the reply. It’s horrible to hear that someone else is suffering as I am but agree it’s reassuring. My brain is very quick to go down the road of thinking that something sinister is missed and it’s very much a vicious cycle. I’m having a particularly bad episode at the moment with daily night sweats and severe pain on my left side.

[Axial]

Wheat intolerance?

[Millysacca in reply to Axial]

Apparently not as I’ve been tested for that.

[KCIEM]

I've just been through what you had since the end of November, I am feeling better since having my CT results back and have been eating better having oats in the morning and taking Mebeverine. I do think that a large part is due to the stress and anxiety subsiding as a result of my tests coming back clear.I was having night sweats each night and even panic attacks, it's amazing what your mind can do to the rest of your body. These have also subsided so I hope they were too part of the anxiety, I'm looking into starting yoga and have downloaded an app for hypnotherapy to try and change my mindset and lifestyle.

I was diagnosed with IBS by my GP and have a constant ache in my stomach and lower back.

The past couple of weeks I've also been experiencing bone pain and joint pain, this has been worse at times but has also subsided as I type this.

I've not been given any information on IBS so have done all research myself.

I hope your symptoms ease.

[Millysacca in reply to KCIEM]

Thanks so much for the reply. It sounds like you have very similar symptoms to me. I’m reassured that my tests have continued to come back clear but then I’m still suffering. Do you have pain in a specific area? Mine is in the lower left area. I’ve had night sweats for the past few nights and wake up feeling dreadful. The pain on my lower left prevents me from sleeping on that side.

[KCIEM in reply to Millysacca]

My back pain is more on my lower right side which seems to spread to my lower left, I did a bit of painting in my daughter's room yesterday and after I finished I was wiped out with my joints aching and severe fatigue - I'm a 34yr old male who was going to the gym up to 4 times a week until the end of November when this started.Yesterday I took ibuprofen in the evening and had to get up at 3am and take more as the back pain was unbearable and I was shocked how well and how fast it worked.

Does your pain seem to be your bones/joints? If so try ibuprofen?

[Millysacca]

Update.... I've since had an Endoscopy and another CT scan. Again, these have come back to all clear. I actually got to the point that I was hoping they would find something as I feel I cannot continue in this way. Every day is a struggle. I either have sharp pains across my mid back area, severe bloating, constipation and the reoccurring pain in my lower left. I have regular episodes of tears and breakdowns and I'm happier when I'm asleep which is something I have felt for some time now. The gastroenterologist has advised me to start some psychiatry sessions as he says the pain is largely coming from my brain and I need to look to rewire it. This is equally difficult to accept and I'm feeling in a pretty bad place at the moment. Any advice would be greatly appreciated.