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

Could it be endometriosis OP? It sounds like the right area. Does it get worse around your period and ovulation?

Absolutely no history in my family either. But my brain scan lit up like a Christmas tree.

Came on to also say this. But definitely Rheumatology as well and your GP sounds shit, get a new one!

Have they checked for coeliac disease? It sounds to be some kind of autoimmune going on. Ask the GP to check for any ANA markers.

It sounds like they are doing quite a few blood tests so I guess go from there? And with the scans also. At least they are checking things out thoroughly.

Some great advice here, but I think that his comment about MS is ridiculous - it's not genetic

I don't want to derail your thread but the application for a blue badge requires medical evidence - simply using a wheelchair when out is not enough. I have recently completed an application for my 85 yr old mother who has osteoarthritis, can walk short distances with crutches but any further and we would use a wheelchair and she has been told that she can't get a blue badge without providing evidence of the osteoarthritis diagnosis. It sounds absurd but apparently it is because wheelchairs can be bought privately rather than always being provided as a result of a diagnosis. Did the NHS provide your wheelchair? If so, hopefully there will be a record of why they thought it necessary and you can discuss that with this doctor?

You could try Benenden health after 6 months they cover you for quicker scans etc

It took me over 20 years be finally diagnosed with lupus, sjogrens and attendant RA and fibro. Please ask for a referral to a rheumatologist OP. Sending supportive gentle hugs

You would hope that a full body MRI would show either brain or spinal lesions if you had MS. And that a follow up lumbar puncture would have been recommended. Your symptoms don't jump out as MS to me (I'm not minimising them) unless the stomach/gastro pain is actually the MS hug which presents like a tight band around your chest.
I have MS and also endometriosis and your pain sounds more like endo to me.
Sounds like you have a few things going on and getting to the bottom of them is key. I understand how debilitating pain is and I also completely identify with you feeling less and less a participant in your own life.
It does sound like you have been tested for a variety of things and I think that means you are being taken seriously, but unfortunately we can also be seen as having health anxiety or imagined symptoms until we get firm diagnoses and again that is draining and frustrating.
I don't know the answer but I do wish you well.

Me too, totally unexpected.

Have you done a strict elimination diet. My sister had terrible stomach pain, muscular pain and fatigue and headaches. She tried various eliminations of food (all the usual ones wheat, dairy etc) but made no difference for so she did a very strict elimination diet and very slowly introduced foods. Found out it was citric acid. She is absolutely fine as she doesn't have it if she makes a tiniest of mistakes she is in bed. Totally life changing. The way she did it was eating nothing but rice and chicken for 2 days (as a veggie that was hard but with it) And then very slowly introduced other bits. Day by day.

https://www.lupus.org/

https://www.hopkinslupus.org/lupus-info/lupus-signs-symptoms-comorbidities/

Benenden are great, but some services require a GP referral letter, particularly for a Neurologist.

@Soubriquet,

If you've had a full body MRI, then I'm sure they'd have been able to pick up any myelin sheath damage to indicate towards MS.
Sorry I can't make any suggestions for what you may have. Wishing you every fortune possible for getting a diagnosis. I know what it's like to go for years not being able to get to the bottom of what seems to be destroying your life!

I have found the GPs are happy to write letters, they can also refer for tests / scans directly.

I wondered with the pain in upper abdo and referral for endoscopy are they thinking reflux? That can be a nasty painful thing.

Yes, my mother was the same. She had COPD, Pulmonary Fibrosis and heart failure. She had to get evidence to show with her application. What diagnosis were you given OP when you were given your blue badge? (Not asking you to share!)

I have many of the same symptoms as you OP and use a walking stick nearly always and also have a wheelchair. I hi early don't mean to come across as patronising but honestly the best solution I have found is sunshine! It helps so much, I am on many medications for fybromyalgia, arthritis, T1 diabetes, polymalgia amongst others, these are some of the strongest meds available but sunshine helps so much. The heat from a sunbed helps me sleep when I'm having a particularly bad flare up.
The list of bloods you're having is extensive, as well as checking for auto immune problems, vitamin deficiencies and general full blood count he's also checking for inflammation in the body so hopefully it will help flag something up.

Is that true about pregabalin and co-codamol?? I’m on max dose of both plus ibuprofen (for fibromyalgia and other things).. I’d hate to be doing myself harm!

Well I don’t know. One doctor told me it’s fine, another one told me that ibuprofen and co-codomol can reduce the effectiveness of the pregablin.

He is checking her vitamin d levels - that's a sensible precursor to prescribe g vit d (which is available at any supermarket come to that).

Sunshine also has greater anti-inflamatory benefits than just vit d. Its not enough but its a good place to start whilst waiting for test results to come back.

Please look into mind body syndrome. I know someone with fibromyalgia who totally overcame symptoms. Look into the Curable app, Nicole Sachs podcast the Cure for Chronic Pain (lots of fibro episodes) and Alan Gordon’s podcast Tell me About Your Pain. I overcame interstitial cystitis using the same methods. I know you will think I’m cuckoo but I promise it’s worth considering.

If you haven’t heard if it, I would really recommend Nicole Sachs’ podcast “the cure for chronic pain” https://overcast.fm/+PIo9lVTj4 and the curable app. I have healed from chronic pain and fibromyalgia symptoms with this work. Obviously keep up the investigations to rule out anything serious, but I’d really recommend having a look at these if you’re not getting answers from doctors. Mine fobbed me off for years!

I got those links above from my friend who has lupus, no harm taking a look and see if it rings any bells. Whatever it is, make sure you don't let the docs fob you off, apparently it can be quite difficult with an 'invisible' condition x