Me & my IBS: back pain & body aches

[ajc1001]

Hello!

I'm Adam. I’m a 44 yr male. I’m new here, but I have suffered from IBS for the past 15 years and have been on quite a long journey with it! I’m posting this message to introduce myself and see if my symptoms match those of others.

For me, a flare-up involves a particular pattern. (1) something happens in my tummy on day one, then (2) I develop aches and pains in my body, particularly my upper back and neck. But I also feel tender in other areas, like my hands. I understand it to be inflammation. This pain can last anywhere between 24 hrs and many weeks. The aching and pain is not horrific, but uncomfortable and constant.

I say ‘something’ happens in my tummy because it’s pretty hard to explain, but I know that something has changed, and my tummy is not functioning normally. It feels sluggish and heavy. The actual tummy pain is quite mild; it is the body pain that is much harder to deal with and impacts my mental well-being. I feel tired, irritable, and generally depressed.

I have a flare-up routine: I take strong (prescribed) pain killers, I try to avoid inflammatory foods, I take lots of baths (the heat seems to help, bit probably because it is relaxing). I then try and wait it out.

I’ve never discovered any particular food triggers. I tried the FODMAP diet but found no apparent culprits for flare-ups.

In terms of treatment, for a few years I used an antidepressant that the GP prescribed to me (because it numbed the nerve endings in my tummy). I used this for about five years, but I came off it recently as I was not convinced it was helping me much. In the meantime, I started using some Symprove as a daily probiotic, and I think this is generally helping. I still get flare-ups, but I get fewer of them, and they don’t seem so bad when they come.

I know my IBS is linked to my mental health in some way. We recently had a bereavement in my family, and this appears to have triggered a flare-up, which took a long time to shake off.

I have tried silicone gel in the past, but I haven’t used it consistently. I’ve had another flareup today and I’m test if any way helps.

Anyway, I’m sharing this in the hope that others might have similar symptoms and to find some comfort in knowing I’m not alone here! I’ve come to accept that it is a thing I have to live with but I really wanna live as well as I can and manage in a way that doesn’t mean every time I have a flareup I spiral and have a mental health crisis.

at the very least just being part of this network in somewhere helps!

Adam

[heartmatters1]

I can definitely relate to all of the above. Constant tummy pain & body aches.

You are not alone. Best wishes

[Luisa22]

Hello Adam. I am sorry you're going through all this discomfort and pain. I get lower back pain which can be made worse when my IBS decides to throw a hissy fit. Though it appears my back pain (caused by pelvic misalignment and some scoliosis) is a totally separate matter from my IBS, I feel they probably play together and the inflammation from my back can irritate the nerves in the gut. I usually manage my back pain, often triggered by overworking my body, with a back rub cream, and haven't taken painkillers (yet) as the back rub cream does relieve it for a while if it flares up badly.

It's worse in the morning just before I need the toilet, then always eases up after. So to some extent my back and my gut seem to affect each other.

But what struck me about you, is -have you mentioned possible fIbromyalgia to your GP?

Apparently it can be quite common for IBS sufferers to also have fibromyalgia.

[ajc1001 in reply to Luisa22]

I have always thought that I might have fibromyalgia but it’s never something I’ve discussed with the doctor, so I think I will pursue this. I realise that there is also no magic pill for that condition, but being taken seriously feels important to me as it’s about recognising my symptoms is genuine.

[Snowcat18]

hi Adam. Welcome! I’m Sure you’ll find some useful advice and support here. I’m sorry you suffer so much with your symptoms. And I’m sorry for you loss in your recent bereavement. I agree with Luisa about the possibility of fibromyalgia- I have that and IBS - they often go hand in hand. Maybe see your doctor and ask if this could be the case - they might refer you to a rheumatologist for a diagnosis as they did me. Sometimes the treatment for fibromyalgia can also help with the IBS.

[Haptonvalley]

Hi adam I am having a bad time at min had irrible bowel for 25 yrs but always worry when I have a flare up .My anxiety does alot had lots of poo tests last year and 3 months since an ultra sound.This attack as lasted about 4 weeks struggling at min with pain in left side and lower back . Trying mebeverine at min tried lots of other things wish I had a magic wand at times hope everyone feels better on here soon .

[ajc1001 in reply to Haptonvalley]

I’m so sorry to hear that you’re having a bad time. I know how that feels and how easy it is to go down a dark tunnel when nothing seems to help and there seems to be no end in sight. The thing that I try to tell myself is that the pain may go as quickly as it came, eventually. It doesn’t help me much in the moment, but it does make me really grateful for the times when I’m feeling happy and healthy. I hope you can find ways of looking after yourself and being kind to yourself.

[Southport-beach]

I was diagnosed with IBS over 30 years ago. I also feel very tired, have unexplained aches and pains, have struggled with insomnia for many years and can feel depressed when I get a flare-up. I was finally diagnosed with Fibromyalgia about 4 years ago. The penny dropped when I compared my symptoms with my Mum who was diagnosed with Fibro many years ago. I spoke to my Dr and he agreed with my diagnosis. Unfortunately IBS and Fibromyalgia frequently go hand in hand as Snowcat18 said.

I would have another chat with your Dr. There is loads of information out there and Health Unlocked also run a Fibro support group. I'm member of both IBS & Fibromyalgia Support Groups and have found plenty of helpful suggestions over the years.

[ajc1001 in reply to Southport-beach]

Thua is so useful, thank you for sharing. I will definitely pursue another conversation with my GP.

[Edgar77]

I agree with Luisa, this could be fibromyalgia. A rumatologist can confirm this. Worth looking in to. As it effects the nervous system it can effect anything. There are some medications out there that can help. Good luck.

[ajc1001]

Thank you everybody who has replied above. Just hearing your reflections and knowing that my experience is similar to others in someway makes me feel less lonely. I know this is something that I will never find a magic pill for and that I need to learn to live with it, but at times that feels the hardest challenge.

[xjrs]

I agree with the others about getting a referral for a fibromyalgia diagnosis and the fact it can go hand in hand with IBS.

There is treatment for this now (very new), so worthwhile pursuing:

msn.com/en-gb/health/other/...

[hamsterlobster]

Hi Adam,

Most people here will resonate with your story as getting to the bottom of stomach issues is a very long road in the UK. Being such a complex issue, whilst no one will have the specific answer for you, what you have here is support.

The mental health aspect of constant suffering is very much undermined when you have a condition that is yet to be correctly diagnosed. Some days you wonder if your life is worth living and other days you're grateful to not have a terminal illness. Its an ever evolving rollercoaster of physical and psychological torment that no one understands...except here! We all know what you're going through and sympathise 100% so you're not alone.

I see that you have several replies already and its really kind of people to share their stories with you as you never know, someone may suggest something that works for you, so keep trying.

My own journey spans 20+ years. I had a 'sensitive' tummy as a child which just got worse the older I got. I was told by many 'experts' that I have IBS over many years but I suffered every day until life became unmanageable. I've tried everything, Low FODMAP diet, Fodzyme, Symprove, Enterosgel, fybogel, every gel on the market, hypnotherapy etc...Eventually I paid to see a private consultant and told him I think I may have Bile Acid Malabsorption so he sent me for a SehCAT Scan and my result came back as severe. I didn't have IBS afterall but a physiological condition that had made me a shadow of my former self.

You would think after a correct diagnosis, treatment and management would be straight forward but whilst there is medication, its trial and error and most days the symptoms are present and therefore the condition is no more manageable for knowing what it is.

However, there is hope. I'm researching every day and at some point I will be able to live my life to the full again. In the mean time, aren't we lucky to be part of a community that have a wealth of knowledge and experience and are willing to share it. Whilst my symptoms don't match yours, its important to talk.