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

What you’re going through sounds awful OP and you really do have my sympathy. Waiting forever for an appointment, letting your hopes build that perhaps this time you’ll have an answer or a suggestion for something that works only to leave feeling like you haven’t been heard is heartbreaking and YANBU to cry or feel angry and frustrated.
I would urge you though to try and work with your GP and remember they want to help you and care more than it might appear about getting you both answers and treatment that works. Sadly there is a lot of uncertainty in medicine, more than most people realise, and your doctor is peeling away layers of the onion, ruling things in or out as they go. Common or life-threatening things are ruled out first and the next step is usually to perform blood tests and/or imaging. Even though it sounds like he didn’t explain himself well at all your doctor has requested a very significant number of tests, many of which wouldn’t be done initially. Health economics is complex and challenging but basically everything costs money and is subject to rationalisation. Hospital laboratories simply won’t do some tests until others have been done, symptoms have been present for a certain length of time, or for multiple various other reasons. Likewise hospital specialists are overwhelmed and won’t agree to see patients unless certain criteria are met. Its awful to have to wait for tests such as endoscopy but honestly the teams aren’t sitting on their hands, they just don’t have the capacity to perform as swiftly as any of us, patients or doctors, would like and they have to prioritise based on clinical need. The same endoscopy team trying to identify the cause of your pain are also stopping people bleeding to death from ulcers and are obliged to focus their efforts where lives are immediately in danger.

GPs technically have between ten and twelve minutes to assess their patients, type their notes and request any tests, write referral letters etc. and whilst I’m in no way trying to diminish the way your GP made you feel to me as an outsider it looks and sounds like he reviewed your history and previous investigations, suggested and arranged new ones, altered your medication and made recommendations about self-care. It doesn’t feel like it to you but he does appear to be doing everything right and is trying to help.

I would recommend having a good read of these posts and writing down anything that seems relevant, possible diagnoses, tests etc. and take them with you next time you see him. There may be something there he hasn’t considered since nobody can know everything. Try to think of it as an ongoing conversation and where possible avoid covering old ground. He knows you’re in pain and suffering, if it’s changed or if you have new symptoms then say so but otherwise try and get past the issues as quickly as you can in order to focus on making a plan. Be as open minded as you can be about what he suggests, sunshine may seem trite but is actually a pretty good call, and whilst this will probably sound patronising do everything in your power to remember it’s not the GPs fault the system is so broken. I guarantee you won’t be the only patient he sees that day who is frustrated to the point of fury waiting for investigations or specialist hospital input, and whilst GPs are very good at giving their hospital colleagues professional courtesy by not bad-mouthing them there isn’t a doctor in the land who actually thinks the system is working.

Not being rushed to hospital is a good thing, it means you’re not dying. I realise that sounds flippant but it is also true. Remember you and your doctor are partners in this, and (mostly) they genuinely want to make things better for you. Help them as best you can by engaging with them and doing what you can to help yourself. Focus your conversations on the practicalities - what you have done, what you are thinking of doing, what you’d like his opinion on, rather than how shit you’re feeling, as although it’s great to offload it doesn’t help make a tangible plan. You can post on MN later if you need catharsis.

I really hope you get the support you need and that years from now this episode is simply a part of your story. Good luck.

This is awful. Has your GP excluded other reasons than fibromyalgia? Ask for a referral to a specialist.

I have coeliac too and have horrific nerve pain. I take b12 supplements too as I feel awful without them

Thank you everyone.

It all started after my 3rd bout of Covid. I had it bad enough that it caused seizure like episodes but not actual seizures. That’s when they all started.

No antibiotics was taken before.

Some good news, I have my appointment with gastrology. It’s next month! Though I am dubious as it’s being done in my local hospital which isn’t known for doing these sort of procedures. It’s usually a MIU and a place where elderly go when they need help.

But I guess we shall see

My mother has A.S (ankylosing spondylitis) this all sounds exactly like how she started. Hers started at 31 but symptoms almost always appear before 45.
I think it’s a possibility?
not a lot is actually known about it in the U.K. more in America

Just to add ankylosing spondylitis generally starts when there is a stressful or traumatic experience. Having covid? Could have been the kick off

I know how you feel.

At 41 years having had surgery at my diabetics appointment yesterday the nurse asked why I walked with a stick at ‘such young age’

I said I’ve had spinal surgery and do not want to risk a fall. A hospital who told me I’d have to live with numb stomach but noted formally I walk with a stick so it beggers belief.

Couldn’t find a pulse in feet and I’m finally going through a pelvic gynee scan 5 months plus after numb stomach started. But only as gynaecology scan on a Saturday. I’ve looked into it all and driven myself mad. Plenty want me to accept me as spinal injury with no idea I’ve lost two close relatives to the second largest cancer killer. I cannot thank the NHS for fitting me in on a Saturday and not interfering with work, I truly thank you. 🙏

Have you looked at endometriosis

I was going to suggest they add PTH to your next blood test, and then saw that you already have osteopenia, and that was a real red flag.

The parathyroid glands are 4 tiny glands usually near your thyroid, although sometimes in random places somewhere between jawline and heart!

They are responsible for messages telling your brain how much calcium you've got in your blood etc.

If they don't work properly, they will tell your brain you haven't snug calcium, and you will start drawing it from your bones.

So I think it's the definitive answer? No.

But given that it produces myriad symptoms, many of which you list, I'd ask for it to be added to your next blood test, along with the ANA stuff.

Don't complain about the sunshine, do keep pressing for more tests.

Fibromyalga sounds very likely and it a recognised illness for which you can even obtain PIPS! Get a second opinion

The ESR on your blood forms is the one that checks for inflammation

The majority of Brits are too low on vitamin D. It's easy to take, but you do need to be aware of the need to take a lot, and with vitamin K2 so calcium is properly regulated. Perhaps that what your gp means by sunshine.
Suggest you check out the research. I take 10,000 units of vitamin D3 with 200 mg of vitamin K2. Also a tablet of trace minerals, and sometimes magnesium.
I did this to recover from cancer. But to be careful, I started at 2,000 IU a day, and worked up to what I'm taking now over a few weeks.
So do your research, and make sure you are happy with what you choose to do.
Discuss with your doctor and ask for a vit D blood test.

If you don't want to take supplements, sunshine lamps are available. Eat plenty of foods containing vitamin K2, and magnesium.

I hope you recover soon.

What about psychotherapy? Would he refer for that? It's worth pursuing.

See another doctor - MS is not genetic (likelihood is higher if people in your family have it but certainly is not a genetic condition). My mum has MS and there is no family history whatsoever. I’m so sorry you are going through this x

Your symptoms sound like the years of misery I had after glandular fever, diagnosed as ME/CFS. I know someone else who is slightly younger than you and wheelchair-bound with long covid. Don't underestimate the effects of post-viral fatigue.

ESR and CRP are on the list they are inflammatory markers

Darling I'm so sorry, insist on a referral to a consultant, absolutely insist xxx

Oh my goodness your post has had me in tears!!!! I am so so sorry for your experience as I am sure you think that you are crazy and you are NOT!!! I truly truly believe you have an auto immune condition. I have spent the last 35 years I’ll housebound and largely bed bound with m.e, myalgic encephalomylitis. What breaks my heart into bits is I was 21 and am now 66 when I started to go through what you’ve described!!!!! I believed I had made it up….I saw physical doctors, physiatrists and after 2-5years got a little better , fast forward getting married, 3babies and that was the beginning of the end of my life as a well human being! I am not saying this very well as I don’t want to compare my experience to yours , but I can’t believe we are all these years on and nothing has changed for you !!!! It is a complete travesty and I am so so sorry for you and your family, especially if you have young children. You are not not not mad…. You are ill and need validating…. Please let me know how things go for you…. I want to fight for you!!!!! With admiration and respect xxx

OP I’m so sorry to hear of your health difficulties. I too have undiagnosed health problems spanning the last 5 years +. Sometimes it feels like a constant cycle of trying to fit symptoms to yet another illness you’ve discovered and think it could be, only to be told no you don’t fit the ‘criteria’. Constantly having scans and being told everything’s fine. Well it bloody isn’t is it. I’ve found not feeling validated one of the hardest things, worse sometimes than dealing with the symptoms. Mentally it takes its toll. I’ve started to move past needing a diagnosis. My issues aren’t as debilitating as yours though (although they have been) so it’s probably easier for me to say that than for you going through a terrible time. I have left doctors appointments in tears many times. I don’t have any advise but I hope this thread has made you feel less alone as it certainly has for me x

I hope your appointment reveals some answers, I can hear the frustration in your post.

I think there are many people like this undiagnosed, some with relapsing and remmiting symptoms all their lives which are never resolved, you are in eye of the storm by the sounds of it. If the pain continues and is unmanagable, go to A and E.

As the pp's have stated certain health issues are difficult to diagnose and after numerous negative tests people can be labelled as difficult and time wasters. It's truly dreadful for those who never get answers, you have my sympathy.
Have any of you had genetic testing ?

You need investigations, don't give up.
xx

Have you been tested for Lymes disease? A friend of mine, thought they had fibromyalgia and by chance her own dr was on hols & German locum said to her I think you have lymes - sent her blood away to be tested and low & behold that is what is was!

The info you’ve been given regarding it can’t be MS because no one else in the family has it is utter nonsense. MS might be more prevalent in families with history of MS but it doesn’t preclude people from families with no history from developing it. MS is usually diagnosed by a combination of reviewing the symptoms together with blood tests, lumbar puncture and MRI scan.

I've only read the first page of replies so I'm sorry if someone else had already said this.

I was diagnosed with MS 29yrs ago and was told I'd been experiencing the symptoms for 17yrs before that (so I've basically lived with it for 46yrs now and know quite a lot about it).

There's no-one else in the family with it, so your doctor's suggestion of a required family connection is totally wrong, it's a very small percentage of people who have MS that also have a relative with it.

There is an extensive list of symptoms that people with MS can experience (generally 4-7 of around 60, but it can be as many as 20 of those 60ish), BUT.... from the symptoms you've described, it doesn't sound like MS to me, although I do agree that it could be something else autoimmune related.

I agree with other PPs, that if you're not satisfied with your GP, you can always change to another who may send you for more tests.

Finally, it isn't a good idea to consult Dr Google, as you'll be diagnosing yourself with a multitude of ailments that you've definitely not got and will possible have an adverse effect on your mental health, and believe me, when you've got issues with your physical health, you really don't need mental health issues added into the mix, you need your wits about you just to cope with the physical issues!

I am sorry you are going through this. I started developing fibromyalgia a few years ago and it turned out it was because I was not sleeping enough to go into a restorative sleep phase so huge amounts of inflammation was being created in my body. Acupuncture really helped as did an anti inflammatory diet plus vit D. Even now if I start getting random pains I know I need to take vit D. Plus massage for my plantar fasciitis.
The thing that concerns me for you is your stomach pain. I would pay privately to see a local endo for advice. Even if you can't afford the investigates they will refer you more quickly in the NHS. If you are in to alternative therapies I would consider seeing a credible colon irrigation specialist. I saw one who used to be a nurse and helped me sort my stomach out.

I had this problem and had to quit my job. I had years of it my GP was very good . At one stage I was on Morphine patches and Tramadol. I was pres cribed nearly every narcotic you could think of. Turns out I have rheumatoid arthritis. I see a rheumatologist now who has prescribed me med to keep it under control, and now and again I have a steroid injection. Kerep on at the doctor its your right. Nobody should have to suffer constant pain it affects your mental health.