I'm new here - need advice. Sorry for the long post.

[nathanbarnard]

Hi,

I'm Nathan, I'm 19 and from the UK. I have coeliac disease so have suffered with tummy/abdomen pain all my life but was diagnosed 10 years ago so it's been manageable and relatively at ease since then.

However, last year I was admitted to hospital for a few days because I had all the symptoms of appendicitis. After tests and scans it turned out I did not have appendicitis although there was fluid found on my ovaries, possibly from a burst cyst. (I'm a trans man - female to male and still have ovaries and a womb. Please don't be horrible about that, I'm here for pain advice only not personal opinions). Nothing was done about it and I was sent home with some painkillers. Since then pain in my abdomen hasn't exactly subsided, after it calmed down from the big flare it never disappeared. For the last month or two I've been suffering with abdomen pain again, this time higher up, just under my ribs. Although it has been the full right side of my abdomen. I was admitted to hospital on 20th Jan '17 with suspicion of gallstones or appendicitis and after a week of CT scans, ultrasounds etc. but yet again, absolutely nothing was found and I've been sent away with pain killers and some tablets to stop excess stomach acid being produced.

My stomach is where the majority of the pain stems from, both left and right but mostly right. However, I also have lots of headaches, pain/numbness down my right leg, right arm and both hands and particularly in my neck also. Essentially the whole of the right half of my body hurts constantly and occassionally spreads to the left with mirroring pain from the right.

Basically, I have no idea what's wrong and neither do doctors. I'm on painkillers and anti-sickness all the time and hardly feel any better. I'm constantly tired and suffer badly with depression and anxiety too.

Any help or advice you may have is greatly appreciated. I'm losing it. I can't remember a day I haven't felt pain in at least 5 years.

[vizzio]

Nathan, I too have CD, I would suggest you ask to be referred to a Neurologist who specialises in Coeliac Disease such as Dr Hadjivassiliou at Royal Hallamshire Hospital in Sheffield. I have constant headache and pain all over my body and he diagnosed Neurological Manifestations of Coeliac Disease after a MRI found white matter changes in my brain. Hope you soon feel better.

[nathanbarnard in reply to vizzio]

Thank you, I will talk to my GP as soon as I can. Thank you again 😊

[grace111 in reply to vizzio]

i hope that your getting pain relief both posts sound horrendous. all the very best. grace xoxoxo

[Hidden]

Morning Nathan and welcome to the friendly Fibro forum - no one here will judge you we will only try to help you.

Ok so all scans X-rays bloods won't give answers for Fibromyalgia but what they can do is rule out any other skeletal conditions - if you go to fm.co.uk this will give you more info on Fibromyalgia

Question have you had blood tests done for thyroid function test - TPO - TgAb plus vitamin - B12, vitD, ferritin, folate and Selenium? If not I would suggest to ask GP to do them - am I right in thinking you will be taking medication to help during your change over - could they be causing the problem too ( just a thought) think back to how you were before starting them.

Unfortunately we can't diagnose only suggest what you can do and what maybe it's always best to consult your GP as they are the medics.

Wish you good luck in your transition and that you find out what is causing your problems - keep us upto date as to how you get on. Take care sending you hugsnkisses 😘😘🤗🤗

[nathanbarnard in reply to Hidden]

Sorry its taken so long for me to reply! I don't think I've had those blood tests don't specifically but I had about 6 done whilst in hospital. I'll ask my GP soon if they know at all.

The hospital pharmacists said that my testosterone injections can cause stomach pain in 1/1000 people which is a possibility but very slim. My endocrinologist team are gonna investigatie this.

I'll go back to my GP as soon as I can. Thank you for your help!

[Hidden in reply to nathanbarnard]

I forgot to mention that the pituitary gland is linked to the thyroid which is why I suggested you get the test done - it's worth a look as you are going through transition maybe the meds are messing with thyroid and pituitary gland - if you are already with an endocrinologist then it's possible the bloods you've had taken could be TSH thyroid function test. Let me know how you get on - whilst I think on - take a look at thyroid uk site too - there maybe some info on what you are experiencing also. Good luck 😉 😉😉😘😘🤗🤗

[johnsmith]

You are asking for advice to get rid of pain. This cannot be done. Advice to work towards reducing the emotional upset of pain that can be given. There are investigations you need to carry out to find out what works for you.

1. You need to look for ways to reduce stress. You are a chronic pain sufferer. This produces stress that could be taking you past the stress breakdown point. You cannot change the pain stress. You can change some of the other stresses you experience and reduce those. The reduction of these stresses will help reduce your stress below the stress breakdown point.

2. You need to get in touch with how your muscles behave. It is worth taking up yoga or something similar to do this. You are not looking for endurance you are looking for increasing awareness of muscle usage.

3. Your posture and muscle control needs to be re-trained. An Alexander teacher will be useful for this. A McTimony chiropractor will be useful for removing any micro cramps you may have.

4. You need to take up meditation and mindfulness. This will help you become more sensitive to yourself and your environment. You will notice more on things causing you stress and how to prepare negating their effects. Also as part of meditation and mindfulness when you have learnt the relevant skills you will find ways of letting go of the emotional impact of pain. This will take time.

Hope I have been able to be helpful.

[nathanbarnard in reply to johnsmith]

I wasn't particularly asking how to get rid of it, I'm just looking for possibly answers for the cause. Neither my GP, two different hospitals and their teams, nor I know what is causing this.

But your suggestions for pain management are very helpful. I already meditate and practise mindfulness but I will try your other suggestions for sure. Thank you

[Greeny513]

Hi....have they ever put camera up and down to see if it's anything in your stomach or bowel...?

It's just that I'm 49 year old female and 5/6years ago I got diagnosed with celiac disease after years of them saying it was something else. Anyways after a year of being gluten free I started to get very poorly again and lost weight very quickly and had lots of pain under my breast bone area and when they finally decided to put camera up and down they found in had colitis which is another stomach problem... I'm not saying it is this but this could be ruled out and stop all that terrible pain, cause my main was unbearable it was that bad I would roll around in pain plus I was any ibuprofen type tablets are not good for people with celiac disease they are to strong for the stomach so if you are also taking any of them it could also be this... also I was once told off a nurse if you have back pain this is due to the celiac disease.... hope some of this helps...julie ☺