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 would honestly take a Vit D supplement and start eating as clean as you can

What you put in your mouth affects you massively

I have a condition and I started eating clean for other reasons and I was blown away by the difference it made. Similarly I started walking and I couldn’t believe how well I slept! Energy etc all increased. And I was heavily fatigued but I just went for it. Started off small. It does make a difference.

have you looked at online image of your tummy pain? It sounds like your pancreas?

I’ve been on pregablin for years. It started off originally as back pain which I think was left over from pregnancy (my youngest is now 8) and the fact I have osteopenia.

This stomach pain, started in august and has progressively gotten worse. I was originally taking 1 50mg tablet, once a day.

I had my prescription upped last week to, 2 twice a day.

I don't understand why he wouldn't recommend a vitamin D supplement, when it's obvious that you require a wheelchair to be out and about.

In any case...maybe try it yourself? Vit D deficiency may line up with some of your symptoms, and even if it does nothing you can at least shut down that line of investigation next time, in the hope of actually making progress.

Call back and ask for a referral to a Rheumatologist. Also request the tests as PP have said above. Make another appointment and take your Husband with you. This is a situation you need to push and push for a diagnosis. It's unacceptable you have been left in this much pain and so little quality of life. I used private insurance through work for my diagnosis of Fibro, ME and he told me I had Allodynia which explained the sensitive skin. I can't bear anything touching areas of my body, my skin feels like its burning and I feel bruised inside. I'm in the process of changing GP practices because of the care or lack of I've received the last few years. Good luck and I know its difficult, but keep fighting for answers. 💐 x

Do you take omeprozol? Could help

Oh this sounds so much like fibro. I had a whole host of tests years ago and was referred to rheumatology where I was diagnosed. Some days the pain is so severe I want to go to sleep and never wake up. I'm on tonnes of painkillers and am housebound now age 49 with a teenage son. You need another dr to refer you to rheumatology and the pain management clinic where they will try to find a better cocktail of meds to help you op. Sending gentle hugs

I'd also ask for a Neurologist referral as some of the symptoms sound like FND.

What diagnosis was given in order to obtain the Blue Badge?

Just sending you my sympathy, sounds so hard.

Coeliac disease can do this and it very common. When my coeliac was u controlled all my symptoms were neurological and I thought i had MS too but it was ruled our and it turns out when I eat gluten my body attacks my nervous system. Worth looking into, it sounds like you need to be under a neurologist in any case. Hope you get answers soon OP.

ESR and CRP are both on that list

I do.

And no official diagnosis as of yet, for the blue badge but I am claiming standard mobility PIP, and that has allowed me to claim the blue badge.

I had called and requested a change of circumstances regarding PiP as things are different. Before I could stand and cook. I could bathe independently. I can’t do that now

@PastMyBestBeforeDate · Today 16:09

"I didn’t know anyone else with MS, no family history of it. Didn’t stop me being diagnosed with it. Utter nonsense."

Hi Soubriquet,
I agree with the above - I have MS, and my understanding from my Neurologist & the MS Society is that it doesn't run in families ( & I'm certainly the only one who has it in my family!).
None of your symptoms seem to particularly stand out as MS though to be honest. Although it's the sort of condition with vastly varies from person to person.
Was your MRI on your head & spine? If so, I would hope that MS would be picked up from that.

Full body MRI if I remember correctly

I too have Fibromyalgia, as well as EDS & Multiple Sclerosis. I just want to ask what you mean when you say you have a Blue Badge for your wheelchair? Blue badges are issued based on the nature of how your disability affects you, not on whether or not you have a wheelchair. Same with PIP & LCWRA (I have each of these as well as a blue badge)

Fibromyalgia doesn't usually result in needing a wheelchair as it's not that type of pain (don't get me wrong, I'm NOT downplaying it! I know it's bloody painful but as you know the pain is more neuralgic.
Obviously I'm not saying you're lying! I'm saying that perhaps there's something else undiagnosed going on? Have you seen Rheumatology lately? When was your last MRI?

I know fibro affects everyone to a differing degree - of course. But the type of pain it creates, isn't usually the sort of pain that prevents walking - on a daily basis anyway. All of us with Fibro have bad days with it sometimes, naturally.

If you're struggling to walk then I would say that there is definitely something else going on and would change doctors.

Do you see the Pain clinic?

Do you have any blood pressure probs or find yourself feeling faint?

Maybe look up lupus? Have you ever had your iron tested?

The skin thing is called allodynia and I get it right before I am sick.

https://en.wikipedia.org/wiki/Allodynia

Ignore my last post about Fibro, I totally misread your OP that you actually had a diagnosis for Fibro 🤦🏼‍♀️ I can read, honest!

I've been diagnosed with MS and nobody in my family on either side had it. Same with EDS

Are you hypermobile OP?

(I'm in an MS relapse and my brain just seems to confuse info I take in and jumble it all up!)

I think I need to restart this thread from the beginning....

As you were....

Not that I know of

My badge was issued for the fact that I require a wheelchair whilst out and about.

It hurts too much for me to walk and if I try and push myself, I can end up having an attack, which means I have extreme cramping style pains all through my abdomen

Have you tried taking an antihistamine?

I would take two - see if you have any improvement in any area of your symptoms

Random advice there..I’ll give it a go! Can’t harm me

What specialists have you seen OP?
Sadly sometimes there are no answers, and you have to learn to live with symptoms. Psychotherapy can help.