To just want to cry after seeing doctor

[Soubriquet]

I’ve been in constant pain since August. I’ve been to A&E 3 times last year to try and get a handle on it.

I have symptoms 3 pages long. I’ve had numerous blood and urine tests. I’ve had an ultrasound, I’ve had a CT scan, I’ve had an MRI and it’s all clear.

I’ve been waiting since September for an endoscopy. I was supposed to be on the urgent list..heads nothing yet. He’s told me to ring them and push for it to be done quicker. Not sure what my word will do but fine I’ll do it.

I went to the doctors today (first time this year) because the pain had increased noticeably and the medications I have weren’t working.

He did his mumble bumble, gave me more blood tests to do, more urine tests to do, and then prescribed me….sunshine.

He even asked me if the wheelchair I was in, which I have a blue badge for, was necessary!

Im just so frustrated. I can’t walk properly. Literally stumble to the toilet and that’s it. I can’t do stairs. I can’t stand and cook. I have to rely on my husband as a carer.

I can’t be a mum to my kids because I’m having to be stuck in bed as it’s the only place where I get some form of comfort

I’m just stuck.

He asked me what I think it could be, and I mentioned MS and fibromyalgia.

Got told it’s extremely unlikely to be MS as no one else in my family has it, and there’s no point diagnosing fibro as the it’s a waste of my time and doesn’t benefit me.

I just want to cry now

I have fibromyalgia and I’m in a wheelchair 75% of the time. Telling those of us with the lived experience that we don’t need one is ridiculous.

Seriously??

Would you like to come and live in my body for a week and then come back and tell me how I’ve got a “hysterical” illness?

Trust me, if the real pain we live with was ‘all in our head’ we would be queuing up at the psychiatrist to be fixed.

If the soles of your feet hurt it could be an inflammatory arthritis (not necessarily RA).

Trust me, if the real pain we live with was ‘all in our head’ we would be queuing up at the psychiatrist to be fixed.

All pain is generated by the brain. All pain is real. Whether you have chronic condition, phantom limb pain, a broken arm... There's a lot of misunderstanding about pain. You can get locked in a pain loop when structural pain has gone, but neuroplastic pain remains, this is a predictive pattern where you brain says, this hurt me last time I moved my back like this so I'll send pain as a warning to stop. It's a protective response. Typically people with chronic pain have hyper active nervous systems which are overly protective. It's a very complex topic. Well worth reading some Alan Gordon who is very interesting on this topic.

Just had a thought about the tummy pain, I take fluoxetine as well and it can give me a bad tummyache if i have it on an empty stomach. Eating somethign with it really helps.

It's a perfectly reasonable diagnosis she's not putting down anyone who's in constant pain

Many people with chronic illness would do well to have a psychologist or psychiatrist on their team. The mind is powerful and very connected and intertwined with the body. The brain is the source of both physical and psychological symptoms. It isn't an insult to look at illness through a holistic lens or to look at psychological causes or influences. The neurobiology of mental illness is a pretty fascinating field and a science. It isn't about weakness or poor character.

If you have seen people with conversion disorder (functional neurological symptom disorder) or other somatic disorders - you realize how powerful the mind can be and how interconnected the body and mind are.

I take them after I’ve had breakfast

The emerging science around chronic pain and conditions such as fibromyalgia etc, is really highlighting the role of the brain. It’s not “the pain is all in your head” - and believe me I have heard that plenty from doctors. It’s that we are not a separate brain and body. We are a combined system, and our nervous system and the neuroplasticity of our brains, unfortunately does often lead to the development of chronic conditions, which when a doctor is purely looking for the “physical”, they end up stumped. No one is making up their pain, or imagining it. It is real. Mindbody syndrome/TMS or many of the other names it is known by, often sees people have debilitating pain and symptoms. I know because I was there. Chronic daily pain throughout my body, fatigue, other symptoms which are too many to list.

for anyone suffering, again, try and keep an open mind and look up the work of Nicole Sachs, Alan Gordon, the curable app. Myself and many others have healed from things that doctors couldn’t get us answers to and fobbed is off about for years. Yes fibromyalgia, long covid, chronic pain, Ibs, plantar fasciitis… they are all a sign of a disregulated nervous system, and a brain that is firing pain signals when it doesn’t need to. We are not broken! And we can heal!

And I reiterate again. I am NOT saying “the pain is all in your head”. It isn’t. But the solution to healing isn’t in fixing one’s body. I know many people will dismiss this, along with the posts others have made saying similar. That’s okay, medicine is taking it’s sweet time to catch up and trickle this down and we’re so used to looking to doctors for the answers. It is getting there but slowly but I get it feels like a leap when you’ve no doubt been fed a load of bullshit snake oil before now if you like with a chronic condition. If this seems like woo woo bullshit right now, I hope that somewhere, in the back of one’s mind, a curiosity grows and one day you look into it.

I have eds and mcas. Strangely I’ve been told that mcas is where the body signals a reaction where there isn’t actually a histamine response, so even prescription antihistamines which I’ve been on for years don’t do anything to prevent the reaction, as it’s not a true allergic response, it’s like a false positive.

it’s why o can react to something with the lip swelling and throat closing, rashes etc one day and eat it the next.

I just wanted to say that I really feel for you OP. I hope you find some answers because you're young and shouldn't be living like this. I have stage 4 cancer and a few disabilities thrown in and like can be so hard to manage. I also thought rheumatology and I'm surprised you haven't been referred. Best wishes I really hope you get help 💐

Life*

Apologies, I thought OP write ozempic but I guess not.

Are mintec & iron tablets over counter, or were either prescribed?

Why were you prescribed the Omeprozole, for what symptoms or diagnosis?

Fluoxtine : means you have a relevant diagnosis or set of symptoms, what is the diagnosis/symptom bundle?

are you doing or taking anything for the osteopenia ? Recommending more sun exposure for the osteopenia is reasonable.

Our reactions are partly about how full our “histamine bucket” is. How much histamine and other mast cell mediators are already circulating in our bodies at any given time contributes to how we react. So, if we’re already struggling with a hot day or big change in air pressure, a food might push us over into a severe reaction. On a cooler day we might have been able to eat without a problem. https://www.mastcellaction.org/articles/the-histamine-bucket-theory I can’t function without a cocktail of antihistamines and mast cell stabilisers!

I must just be unlucky then as I don’t have raised histamine during reactions aside from tomatoes or cochineal. Hence no difference at all between taking the max dose fexophenidine plus loratadine on top and not taking it, still react either way. If I have a genuine allergy then yes I do get the benefit of them, such as tomatoes or cochineal it helps stop blistering and throat closing up etc, but when it happens on its own, nothing stops it

What stood out to me is the muscle cramping you experience when you walk. Apologies if this has already been mentioned but have you come across metabolic myopathies? https://www.mda.org/disease/metabolic-myopathies/signs-and-symptoms

There are different types. They’re rare so often missed. I believe they’re managed with dietary changes.

Ask to be referred to a rheumatologist- they will look at possibilities such as fibromyalgia and lupus. Good luck. xx

so sorry to hear of your problems ,it is so difficult when you can't get a clear diagnosis,I have over 20 yrs with fibromyalgia and have been disbelieved and ignored too many times as I look fine. The chronic pain teams are often the best as they deal with the physical and mental effects of long term pain. Often there is no clear cause but that doesn't make it less real just different ,as we all are.Keep going they will eventually get you support even though it feels rough at the moment.X

Your symptoms sound like Vitamin B12 deficiency & folate deficiency. I see your Dr has requested a blood test for these, however you can be “in range” but still symptomatic . Please join the FB group Pernicious anemia/B12 deficiency group. It has over 40,000 members who generally feel like you. Unfortunately the medical profession are sadly unversed in this.

This is shocking that you are in extreme pain- and that they cannot get you to the top of the list for an endoscopy now - I really feel for you🌸

Try cutting out gluten. And possibly lactose. X

So sorry you have unsympathetic doctor, ask to see another doctor within your practice it might possibly be fibromyalgia, speaking from experience it is a very awful condition, however strange as it sounds have you been checked for gallstones? That can be extremely painful with a lot of side effects. Hope you feel better soon

Sorry to hear what you’re going through.

I don’t have any medical pearls of wisdom but while the investigations are ongoing could you see an occupational therapist to help you manage day to day?

Have they checked for hiatal hernias?