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

Aww, I'm so sorry you feel this way. I can sympathise with you, because I went through the same thing with my GP. I was eventually diagnosed with Fibromyalgia and thyroid problems.

I had to except that there's only so much that medication can do and I find that yoga and other gentle exercises really help. You could try these. Even the meditation part of yoga really helped me to forget the pain for a short time.
For your sanity, I really hope you get a diagnosis and some help soon. Take care of yourself 💐

I’m so sorry, OP. For me, that upper stomach pain is a symptom of mast cell activation syndrome (MCAS). It’s almost impossible to find anyone on the NHS who will acknowledge it but I’ve got mine under some control with OTC antihistamines and a (very strict) low histamine diet. MCAS often goes along with PoTS, EDS, other autoimmune issues… Might be worth looking into as there’s a lot you can try yourself. Good luck xx

Another one to consider is hyperparathyroidism. The symptoms are sometimes described as ‘moans, groans, bones and stones’ as it can include unexplained pain, depression, anxiety, kidney stones and osteoporosis, but really it’s much more complex than that. You’re having your bone profile checked - ask what your calcium level is. You really would need parathyroid hormone tested as well as calcium from the same blood draw, but calcium alone may be an indicator. If it is anywhere towards the top end of a ‘normal’ calcium level, ask for PTH and calcium to be tested together. Hyperparathyroidism is nothing to do with the thyroid, it’s to do with the parathyroid glands which lie behind your thyroid, usually. Hope you get some answers soon x

He has - C reactive protein and ESR

AIP diet? Knock
out any foods that might be. Aiding inflammation and re-introduce very very slowly until you find the culprit. Good luck, sounds dreadful.

Do the soles of your feet hurt or are your feet painful all over?

From your post it sounds to me like fibromyalgia. The benefits of being diagnosed are

• you can get quick referrals to physio, pain clinic, sleep clinic etc
• you could get pip which may help alleviate any money stresses
• you will have a diagnosis which (although it sucks) will surely help you to realise that you actually have an illness and it isn't in your head and it isn't linked to the bloody sun!

There isn't a cure but there are management things you can try. But you need the diagnosis.
Good luck xx

I take pregabalin and ibuprofen - everything I can find says there are "no known drug interactions" between the two. In fact quite a lot of research papers recommending they be taken together.

You're not supposed to take codeine with pregabalin as you'll turn into a zombie (technical term lol) - they both make you sleepy. So only under doctors advice and don't drive.

• “you can get quick referrals to physio, pain clinic, sleep clinic etc”

can you?? I’ve had a fibromyalgia diagnosis for 8 years and apart from the complete waste of time that is pain clinic, I’ve never had any other referrals, quick or otherwise. Guess it’s regional.

Lots of people throwing suggestions out on here so I’ll add my 2 cents’ worth:

OP, you mention you’ve had numerous blood and urine tests done before, as well as a CT scan and an MRI scan.

I think it’s really important you get access to all of those test results, for a few reasons.
You may have already had an autoimmune screen done.
Your MRI scan will not have been a “whole body” one - they don’t exist in the NHS.
If you don’t know what’s already been checked, you can’t know what to request next - you’re shooting in the dark.

My thoughts would be :
If you’ve been taking regular ibuprofen and you’re getting upper abdominal pain I’d be worried about ulceration or gastritis, which would be seen on endoscopy. Investigation for H pylori would be useful - poo sample.
Agree with making sure an autoimmune screen has been done and if that shows anything, then go to rheumatology.
Your symptoms are not really consistent with MS. MS is not genetic, but there is a higher rate of MS amongst first degree relatives with the condition. If your MRI was of brain and spine then it would have shown up.
If nothing shows up on all investigations then you need to be seen by the pain team, or at least try and find a combination of medications that works for you.

I always suspect one of two things when I read posts like yours OP. Fluoroquinolone toxicity syndrome (were you treated with antibiotics such as Cipro, levaquin etc prior to onset of symptoms? I was tested for lupus and a host of other issues but everything came back negative, and I was offered no treatment because they couldn’t find what was wrong. Inset was 2nd day of taking Cipro for a suspected uti. Pain started to ease after many months, but it was widespread, affecting my feet, ankles, legs, arms, neck (spasms), severe headaches, peripheral neuropathy, hair loss, sharp pains in chest.... the list was endless.
The other thing, was inset after a covid jab?

*onset

The GP can add a PTH on to the sample if indicated based on the calcium/vit D and liver
function results.

I’m thinking hypermobility as well, it can give a barrage of symptoms and it just takes someone thinking outside of the box to put it together. https://www.ehlers-danlos.com/assessing-joint-hypermobility/ it didn’t just have to affect your external joint but can affect internal.
i wish you well in your journey for better health and a much better doctor. But it’s good he’s giving you further blood works. It might be worth checking to see if you have a parasite have you had any holidays? Check for Lyme disease as well x

Poor you. I got diagnosed over the phone as having fibromyalgia by a locum doctor 😂, it’s utter crap that when you are ill long term no one wants to look at you. I eventually ended up in a&e with a dvt, and a haemaglobin of 80, where I’ve seen loads of doctors and have had loads of tests, I had an iron infusion because my ferretin was really low, I’m now waiting for the results of other tests I’ve had. It’s absolutely ridiculous that GPs don’t want to actually do anything for you, it seems they just don’t care. You end up really ill,and prob in some cases it’s too late, to get the care you need.

I’m sorry to hear that 😞
our GP has been great for my 19 year old who’s been diagnosed and has seen physio, has a regular appointment with the pain clinic and has a sleep clinic appointment next week xx

This doesn’t sound to me like FM and I’ve had CFS/FM/POTS/EDS for a really long time. It doesn’t fit MS patterns either.

A wild stab would be autoimmune/inflammatory - but only testing will narrow it down. I would start with rheumatology.

Hi @Soubriquet do your feet burn as well as pain?
I see one test he’s doing is the HBA1C test for diabetes. Peripheral neuropathy can be excruciating in your feet from diabetes so good he’s checking that out.

The uncomfortable pain in the top of your stomach - are they testing for helibacter pilori?

And have they already done the CA125 test?

If he’s checking your vitamin D level that’s good - a deficiency can cause bone/joint pain.

Hope you get something useful back to help you move forward with the correct treatment.

Just to say that sunlight- especially early morning- is brilliant for most people but not those with lupus as the uv causes inflammation. The book ‘the body keeps score’ is excellent and well worth reading by anyone with chronic illness. Would also agree that keeping active and mobile as much as possible is sensible (and i also have chronic pain so I know how hard that is) but it’s harder to regain strength and mobility if lost. Even armchair yoga is worth doing.

I too would consider exploring possibility it may be mast cell activation syndrome. Know hard to find anyone on the NHS who will acknowledge it but knowledge growing. Good primer here for doctors, treatment recommendations etc. https://sci-hub.hkvisa.net/10.1007/s10620-020-06264-9

Can you afford a private appointment? If so find a consultant that works NHS, then you can get NHS prescriptions etc

So sorry you don't feel well and haven’t got to the bottom of all your symptoms.

Your GP has referred you for several things and the blood tests you have shown are very comprehensive. Your GP sounds like they are doing everything they can.

If you are spending most of the time in bed then lying outside in for some of the day will prevent worsening of your osteopenia as Vit D helps the body absorb calcium and you need the Vit D from sunshine from March to October.

Can we ask your age and when this started.

What was the start of this? Which symptoms?

Was it the back pain from pregnancy? or something else?

You mention taking one medication normally prescribed for nerve pain and standard painkillers on top. Do you take any other medication?

Abdominal Pain can be caused by conditions such as GORD (acid reflux)or gastritis. People taking certain painkillers for long periods of time need to take another medication to protect their stomachs or they run a high risk of damaging their stomach lining causing gastritis etc; This is very painful abdominal pain often worsened when eating or in the hour afterwards. Over time damage daily to the stomach lining prevents the body absorbing B12 and you become vitamin B12 deficient - this affects your nervous system and needs treatment. ( Thankfully he is checking your B12 levels).

Have you lost weight or are underweight now due to problems with eating due to the pain or is your weight stable? Some people find their stomach pain gets worse if they are very underweight.

People with gut issues can find they have weird coloured bowel movements or loose bowels or the opposite if they are taking alot of painkillers - constipation will be common - severe constipation will also cause abdominal pain.

Speak to the GP about a gastroentology referral and a rheumatology referral.

Your GP is a twat, especially with the wheelchair comment!
Even if there is nothing that he can diagnose you with right now, some empathy wouldn't go amiss!
Can you change your GP?

Just in regard to painkillers - I am on 500mg of Pregabalin, but also on co-codamol and naproxen. Don't try just managing this with Pregabalin and basic painkillers. I also have Diazepam for the anxiety caused by the pain and sleeping pills to help me sleep.

Ask to be referred to the pain clinic if necessary - the Dr seems to be making you suffer needlessly. I can't help with the diagnosis (although, pancreatitis seems likely with a lot of the symptoms you are mentioning, can you keep food down and have you had to restrict your diet to do this?), but you are definitely being denied the ability to cope with your pain symptoms. Is there a patient advocate that you can access at all?

I’ve just read the fast 800 book. I’m not suggesting you need to lose weight, but there was a section on doing a 3 day (I think fast) which had been known to re-set your system. If it is autoimmune, might be worth looking into. I know it sounds a bit mad, but it sounds like you are willing to try anything.