How do I cope with a pain that no one believes is real?

[BraveheartPenguin]

I hope it is okay to post this here; I just feel totally consumed by my pain at the moment, and lost, as well as alone, in the journey of figuring it out. It all started 7 years ago, when I was 18- a nagging sharp pain started at the top of my abdomen, between my ribs, which lasted a few days. One morning as I was getting out of bed, the sharp pain shot across my abdomen towards my lower right side (it felt like I had been ripped in two). From that point on, the pain has remained on my right side- it is tender to touch my lower right abdomen and my right flank. The pain fluctuates- sometimes it is just a gnawing aching pain, sometimes it is barely noticeable as if someone has their finger slightly jabbed into my right side, other times it feels as though there is a massive amount of pressure/swelling/not enough room on my right side for whatever is hurting, and other times the pain grows in sharpness and radiates towards my lower back, shoulder blades, and back towards the centre/upper abdominal area it originated. Over the 7 years, I have undergone ultrasounds, a MRCP, an MRI of my small bowel, and a sigmoidoscopy (of the first 20% of my bowel) - all of which came back ‘normal.’ In the first year of the pain, I had a stool inflammation test, and a blood test, which both showed levels of inflammation (I am unsure of what those levels were), which resulted in the doctors attempting a colonoscopy. Half way through the examination, ‘my pain’ was triggered as a sharp attack on my right side and upper abdomen, so the doctor was unable to complete the colonoscopy (50-60% of my bowel was examined) and I was discharged. The label the doctors have currently handed me is IBS- which may well account for the episodes of intense nausea and diarrhoea experienced alongside my pain- but I truly don’t believe it explains my pain. I mean, would IBS cause pain in the exact same place on my right side for years and years?? Does IBS cause abdominal tenderness to the point that wearing tight clothing like jeans can be too painful?? (Perhaps I don’t know enough about ibs, but at the moment it doesn’t feel like it fits for me). I feel like my doctors have given up on me at this point- my complaints of pain are met with “what do you want me to do?”, “there’s nothing else we can do”, “your scans and tests all appear normal”. I feel crazy for still having the pain if everything is ‘normal’, I feel disappointed that the pain that started when I was 18 may well last for my entire life and I don’t know why, and everyone around me seems to think it isn’t real… I have never felt so alone and lost in my life, so I would appreciate hearing from anyone who may understand or relate to my journey, or anyone who may be able to point me towards next steps for investigations or next steps for coping. Thank you all ☺️

[studebaker]

I had a lot of abdominal pain and it was sometimes very sharp and had all kinds of investigations which found duodenal ulcers and acid reflux. They were both treated with results of less pain, but the discomfort persisted for years. Finally, I thought to try to go dairy free for a week and no pain.

I was lactose intolerant for all those years.

It might be possible that trying to eliminate certain food for set time and keeping diary can help to find the culprit

[Scotsman53]

Many people experience pain that is real but has no physical cause. Search "Sarno TMS".

[cyberbarn]

After gastrointestinal issues have been eliminated, one of the most common causes of abdominal pain is nerve entrapment. But sadly health care professionals often don't think of that.

In fact there are over 90 causes of abdominal pain, but usually clinicians give up looking after they have examined for the top five. That what sounds like has happened to you.

Have a look at Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES) for a start and see if that makes sense to you. That is where a nerve runs between the layers of fat to serve the skin on your abdomen.

There are nerves that run between all the ribs as well, and they can be irritated. One of the conditions that it would be is called slipping rib syndrome.

There are other areas where nerves can be trapped, or where ribs can move around and cause pain which can radiate away from where the nerves or other tissues are being irritated. You may have heard of costochondritis?

Pain in the abdominal can also be caused by nerves in your back as they come out of the spinal cord.

Have you been referred to a pain clinic? They maybe able to diagnose where the pain is coming from. My son recently had an appointment with the pain clinic and they were really good.

He had pain in his upper abdomen and of course the GP assumed reflux, but PPIs didn't change it, and my son kept mentioning it only appeared in certain positions, but even if it started in a certain position, it would keep going after he moved.

Next was the endoscopy that found nothing. It was that person that said it was likely positional pain caused by the connective tissue disorder my son has, Ehlers-Danlos syndrome.

But no one listened to her or us, and we spent 2 years arguing with GP and Gastroenterologist. Finally I put my food down, and my son (27) sat there in tears, and between us we managed to convince the gastro that it wasn't gastro. He finally referred us to the pain clinic who made the diagnosis.

So keep going. This pain is not in your head, as in it is psychological, (although it is processed in your brain). Pain can be complicated, but that is what clinicians usually say when they have given up looking for the cause.

I hope you can find some relief soon.

[kev60]

hi, you are very welcome here . There are lots of people out there who understand what you are going through. I suffer with FND, GORD, COPD (emphysema) and OA of the spine. But I also suffer with pain in three areas abdominal, back and chest. Today it is 8/10, 8/10 and 6.5/10 I used to tell doctors by % but they don’t like that or don’t understand it that way and prefer number out of ten. Last year I was offered social prescribing by my gp , didn’t know what it was so went and had a look see . The first meeting there was my wife and I and the prescriber but over time (met once a month) more and more people turned up , this was for people who suffer with any pain and the variety was off the chart and people just spoke or not but I thought I would not be speaking but ended up talking a lot but it helps you realise that you are not alone. My pain is 24/7 and is different every day and I’m on pain patches 30mcg and paracetamol and codeine for emergencies at best it’s a constant ache at worst I am bedridden. So welcome to the most unwanted club and I hope you find what you need/ deserve here . Kevin

[Macblank]

Morning my lovely.

IBS isn't just irritable bowl, it also means inflamed bowl syndrome.

These 2 are slightly different to each other.

Normal IBS I don't think covers your condition, but I do wonder if inflamed covers you better ... Look it up.

I guess you've been under lower GI team?

I'm wondering if you have an allergy in something you eat.

A friend had a similar thing but not constant, only now and again. Turned out eventually from a food diary, she was allergic to tofu.

So keep a food diary, and see if some days it's more intense than other times.

So (pure example) you have gluten intolerance.

Now sausages contain breadcrumbs, that day you g et pain, but cos it's a small amount you only get aches.

Sat morning you fancy a maccies breakfast and have a mcmuffin. Of course being so much bread, a few later your in huge pains.

Do you see what I mean?

So every thing you eat or drink, write it down.

I maybe asking you to do something already done, and am sorry.

I guess they checked your appendix ?

Spelling issue ... You could have an extreme case bification. Small dents in your bowel, and shit gathers in these dents, and eventually gets infected. Until flushed out, sometimes the infection stays, and does cause pain.

But it's how this seems to start that seems to rule that out?????

I do, daft sudden question. Have you seen gyno over this?

Wonder if something like endometriosis... Just a thought

Anyways.

Best of luck.

[Dancer2021]

OMG it could be me writing that! I am exactly the same as you. They just keep saying 'we don't know what to do with you', and leaving me in pain. I am mentally broken and finding life unbearable and there seems no way out.

[Defenders]

Oh, I feel your pain and I’m so sorry! I also well understand the feeling that no one believes you. I’m in the UK too. I don’t have abdominal pain but I do have pain that there is no treatment or cure for. I have Peripheral Neuropathy now diagnosed as caused by the antibiotic Ciprofloxacin (a Fluoroquinolone) prescribed 9 years ago for sinusitis. I feel angry and devastated that I have to bear this pain which was done to me, not caused by me. Mindfulness helps by staring down the pain to the other side. I know it will never go away, it gets worse in hot weather, so as the world is heating up, my pain heats up too. This may not help your pain but at least you know you know, you are not alone ❤️🇬🇧

[Mitch48]

Hi there,

I’m so sorry that you are in pain.

I have Ulcerative Colitis, I realise that you do not have an IBD ans that would have been diagnosed by the tests that you have had, colonoscopy & lab work etc. I note that you must have had a CRP test to determine the amount of inflammation in your body.

I wonder what your symptoms are regarding constipation & diarrhoea & any patterns forming particularly with what you eat & how much fluid you take, also if you take laxatives, including which ones & when. A diary recording all of this information can be very helpful for not just yourself but any health professionals.

Constipation can be so incredibly painful, ok I’m talking from my perspective and I feel pain from that on the right side of my abdomen but it could be a consideration for you. Straining on the loo can cause pain to radiate from my experience many years ago, before I stopped doing it.

I’d seriously consider the diary I mentioned, also a pain diary - date, time, type of pain, which area/s of body, duration, what helped the pain improve, etc. You can look online for examples. I also have severe chronic pain from cervical & lumbar spinal injuries (20 years) and use a pain diary daily.

Do you have any meds to help with pain or other symptoms? What do you do yourself to help with pain etc?

Good idea to ask for a referral to a pain clinic, they could be of great benefit to you.

Kind Regards,

Mitch.

[Southerngirl2787]

My issues, missed and ignored by doctors ended up being an allergy to cow's milk and Celiac. Food allergies. Constant pain, agony at times, bowel issues, and tremendous inflammation. Changing my diet enabled my body to heal, it took a while, and you have to be dedicated to the dietary changes...gluten and other grains that mimic gluten were the biggest problem for me.

[PainConcernProjects Partner Community Champion Pain Concern]

Hi Braveheart Penguin

I'm pleased to see you've had lots of responses so far. Firstly, well done for posting on the forum. I know it's not always easy to do. Often people find being in a supportive group useful in itself - people 'get' what you're going through - and I hope you do too.

One option could be seeking a second opinion form another health care professional if you're not satisfied with the answers you've been given so far.

Information you may like to consider reading for managing the pain if you think it will help are:

1) Our leaflets (particularly 'manage your pain' and 'managing emotions' painconcern.org.uk/product-...

2) Our pain education sessions - ​ ow.ly/bz3450SZb7g

3) Airing Pain 145 (Podcast) - painconcern.org.uk/airing-p... We've had positive comments about this episode making people feel believed about their pain, and I hope it will help you too if you decide to listen to it.

4) Our Helpline for information and support painconcern.org.uk/helpline....

I hope things become easier for you soon and that you are reassured that you're not alone.

-Pain Concern

[KM1986]

I'm so sorry you're going through this and the pain is definitely not in your head.I had a very similar journey and was eventually diagnosed with endometriosis.

You don't mention any gynecology investigations which should be a priority when females present with abdominal pain.

Endometriosis affects 1 in 10 women and is as common as asthma or diabetes, yet is hugely under diagnosed.

Even if you think it is not connected to your cycle, it should still be investigated. Mine has grown around kidneys, bowels, bladder and barely touched my reproductive organs.

Good luck xx