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

You don’t “obtain” PIP for having a “recognised illness”. You are awarded PIP based on a points scheme related to how your condition affects your daily life and mobility.

OP has a medical condition that needs decisive medical drugs and medications for, when the cause is identified. It could be extremely easy and fast to treat, who knows, buts it's a needle in a haystack situation untill she gets a diagnosis.

In the meantime, psychotherapy won't help because it isn't mental, it's medical - but I'm sure poor OP has been accused of it being all in her head, many a time (I'm not saying that was your intent, though, just highlighting it!).

I sympathise, because I had a 20 year medical condition that doctors couldn't find any explanation for, and the people lining up to tell me I was just too stressed, or it was anxiety, or whatever (the old well meaning 1800s you're a hysterical woman stuff) was quite long. It was patronising and horrible to hear, especially the 'mental health 101' lectures where people kindly explained to me very basic information that I already knew about how anxiety effects health etc. It was easiest to just nod along and exit swiftly.

Anyway I found a cure eventually and you will too OP - in my case it was quite simple in the end relating to a massive deficiency in a mineral which fixed it in days (and for odd, complicated reasons didn't show up on routine blood tests). Good luck OP you'll get a diagnosis in the end, and it's a good thing your doc is ordering those blood tests - shows he's casting the net wide and doesn't want to settle on a fibromyalgia diagnosis as that isn't very elucidating treatment wise.

Ask him about Sarcoidosis, a friend of mine had very similar symptoms a few years ago & this was the diagnosis. It's an 'exclude everything else' diagnosis & is autoimmune too.

I would definitely ask for a second opinion.

Sounds awful op. I do hope you get some answers soon.

Check out Dr Gundry. Has loads of podcasts and various books. He's a cardiac surgeon but 20yrs ago looked into ways to prevent surgery. He looked at food. It really is eye opening on how this can impact on our physical health: namely auto immune diseases. It's to do with 'Leaky gut'
Also, look up Gabor Mate. He looks at how the body holds onto emotional pain and how this impacts our physical health.
I know this might sound airy fairy, but there's an increase in science to back up functional medicine.

Hope that helps 💐

@Soubriquet I’ve noticed you said it started after you had covid. Has anyone suggested you have long covid? I don’t know much about it but I believe it causes extreme fatigue, digestive issues and pain. Hopefully someone on here knows a bit more about it as another possibility to be investigated.

My ED would empathise with you with regards to your gps remarks about being in a wheelchair. She has CRPS, and has had it since she was 14 and is now 25. She has it in various places but also in her heels so can't walk very well and is in constant pain, so uses a wheelchair to get around outside of the house. She would use it in the house if she could. She was referred to a rheumatologist and the first thing they said was why are you in the chair? Do you really need it? It made her feel awful, and as if she was making up her pain.
I hope you get to the bottom of what is causing all your issues @Soubriquet

This sounds auto immune or similar. Fybromyalgia may fit but it isn't really a diagnosis as such. Consider Lupus or Ehler's Danlos?

Also I'm so so sorry - this must be miserable for you.

OP must have a diagnosis….she has a blue badge.

I'm so sorry. Have you tried injections? I had my first one privately and now do my own. You have b12 deficiency I expect, but because you supplement your bloods look normal. Please look at the b12 society website at the list of symptoms. You will likely have a few. They are working on the NICE guidelines atm to hopefully stop thousands of people living in misery.

You could well be correct @Kugela . There are lots of people on autoimmunity/long Covid forums with awful weird neurological and painful symptoms to the point of disability. A colleague of my DDs had to give up her role in the NHS and could they give a f*ck?-no, limited support! My condition went haywire after Covid + booster. There can be medical gaslighting, denials, psychological & purposely induced dxs, clueless medics and people falling through the cracks. You have to be your own medical detective & be persistent. Make sure every test is run for vitamin deficiencies and everything else mentioned on here. Good luck OP 💐

You have my sympathy. As other people have suggested, I think you should ask to see a rheumatologist as a matter of some urgency. My husband - much older than you - has had a combination of various inflammatory conditions and extreme mobility problems for years - and although he is in pain, his consultant has been a huge help. But he had to have a whole spectrum of tests. He takes pregabalin and co-codamol with no problems, on the explicit instructions of said consultant, (along with various other meds) - but he was taken off anti-inflammatories like ibuprofen and similar because of stomach problems, so wonder if these are adding to your troubles. Now, he also has a weekly (self administered) injection that dampens down his immune response. It's newish, expensive and you have to take extra care if you get an infection of any sort, but it helps a lot and in some people, I believe it's like a miracle. This can only, I believe, be prescribed by a consultant, and after other meds have been exhausted - so again, I do think asking for a referral to a rheumatologist is a must. After years of experiencing the horrible problems of auto immune disease albeit in somebody else, it does often seem to present in all kinds of odd ways - but finding somebody who's an expert is definitely the key to getting help.

Goodness so many suggestions and possible diagnoses, must be quite overwhelming for the OP

Surely it is a good step the GP is doing lots of blood tests and then to go from there, for example if there are raised markers for autoimmune etc, best of luck OP

@ScotsBluebell what weekly injection is your dh on? I just wondered if it's one my dd has tried

Have a blood test privately.Its not expensive, my brother had one and it was best thing he did.

The problem with accessing appropriate care from the NHS these days is that you have to be both knowledgeable and assertive. It shouldn't be the case but it is. Definitely use all the info here and request politely but firmly for extra investigations. If declined insist on solid reasons why these should not be arranged.

Also I know I’ve mentioned Antiphospholipid but ask them to check for it as it’s often misdiagnosed as multiple sclerosis as it can present with similar symptoms.

Crohn’s disease can give you painful plantar fasciitis under your feet, painful abdomen after you eat, headaches, osteoporosis, and vitamin deficiency. It mostly affects the intestines but can present just in the stomach.
It’s auto immune and immuno- suppressants control it well.
Also, in the meantime perhaps your GP can prescribe you an additional medication like amitriptylene to work alongside your pregabilin. It will help you sleep too.

His dismissal of MS and Fibromyalgia bothers me greatly. I'd also be considering Elhers Danlos Syndrome (EDS) as it comes with hypermobility, pain and gut disturbances as well as eating issues. You could also have ASD which causes Sensory Processing Disorder and has recently been linked with hypermobility and gut issues too.

Getting some sun is not a crazy idea, as long as the Dr is also working on finding out what is wrong. I have a recent onset auto-immune issue and via D supplements have been prescribed. To limit damage from steroids, but also to reduce symptoms. I try to get sun exposure when possible.

Has to Dr checked rheumatoid factor and ANA?

Gastritis? Caused by the iron tablets?

OP, I’ll ask again, how did you get a blue badge without having a diagnosis? You surely must’ve had one to get the badge?

No.

I made it clear on the application I had no diagnosis, but I explained how my current illness affected me, and I’ve been granted one for two years