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

Pregabalin can cause gasstric ulcers. It is possible you are in a situation where one thing is causing another and it is all a combined cycle.

I had about 5 years of ongoing symptoms that I just couldn't get under control and for which no 'true' cause could be found. I did have a thyroid disorder but even when treated my symptoms continued. They couldn't find anythign else wrong with me and I saw all the specialists I could. I also had the feet so sore I couldn't walk and the skin so sensitive that any pressure felt like pain, and horrible headaches.

I eventually just had to unwind the snowball effect of issues. I had to be sure my iron (and ferritin), vit B and vit D were all in a good range using supplements. I saw a dietitian and tried to take out foods that I found added to my issues or gave me stomach pain (I initially ate only a few plain foods). I went off all meds except my thyroid med and vitamin / minerals. I saw a physio therapist as my neck and back and shoulders had gotten very tight from all my lying and sitting. It turned out some of my joints had seized up from lack of use. I started being as physically active as possible. Initially this was just chair exercises. I stopped napping so that I could work on my sleep at night. I got more fresh air and sunshine. I spent time in the garden and really limited my screen time.

Eventually I got better. I think it was the combination initially of the autoimmune thyroid disease and then that schanged my lifestyle and those changes made me a lot less healthy and those unhealty habits snowballed into overall really poor physical and mental health and the treatments were making things worse.

I think the two things that helped me the most were keeping my ferritin and vit D levels up, and seeing the physio. It was incredibly how much work she had to do on my neck and back and what a mess they had become from being sedentary. It was very painful to do the physio but definitely worth it. Everything is connected and so as one thing started getting better, other things did too.

I spent two years going for every test and seeing every specialist and focused on finding and fixing the underlying problem without success, then about 3 years just crippled by symptoms and treating and dealing with side effecs of treatments to eventually working my way back to benig healthy again. I am probably 80% myself again and happy to be there.

I am not saying there isn't an underlying cause and I would keep pursuing that but also look at how one thing you are doing mught be causing other issues and do all the health promoting activities you can. I wouldn't change the first two years where I searched for a cause, but I would change the next three years where I just accepted and lived sick and everything snowballed.

Have a look on drugs.com at all the side effects of pregabalin.

It covers just about everything you are mentioning.

I am wondering if your original problem has been made worse by 2 yrs of the medicine to treat it. If you want to try and stop taking pregabalin at any point, you have to do it slowly as you can have withdrawal issues, but it might be worth asking a chemist about if there is an alternative that is a different type of drug, or if its worth trying to wind it down and do without it for a while to see what symptoms go and what remain?

Sounds like your having a real hard time OP, make another appointment and don't leave til you get some referral. The hospital often 'miss' the urgency of a referral.
And just to say I've been on Pregabalin for 5 years now for anxiety, I've been on doses up to 450mg a day although now only 100mg in combination with a SSRI.
I've never experienced the symptoms you have so although it could be possible of course, my personal experience is besides missing the time to take it which gives me a headache, I don't suffer from taking it.
A dose of 400+ a day basically makes you feel stoned though and foggy.

Can you afford to see a private GP. You can request your notes to take with you so no tests except perhaps blood tests have to be repeated. It's worth the money because you get a good hour of their time and it would be helpful to have someone listen to you from scratch and take an overview of everything you've learned so far.

Your doctor needs to update his knowledge on MS / people are diagnosed all the time without family history of it fgs! That makes me so mad that someone supposedly a doctor would make such a ridiculous dismissive statement

When you get your results back - check the levels of b12, folate and see if they are the lower end of normal.

If you google your drug - pregabalin you will find other people who have found that it has caused b12 absorption issues - which can make you feel awful.

Using this and getting treatment, have been life saving for me.

http://www.b12d.org/admin/healthcheck/diagnosticcalculator

I think others have said it but do not do any elimination diet of gluten as you still need to be eating for any investigations.

How scary for you.

It runs in my family with one of my siblings & one of my dc with it. Felt like I’d been punched in the stomach when my dc was diagnosed with it.

Terrible thing to know you’ve passed on an inherited disease but I didn’t know I had it till they were around 6 years old.

I've just seen your list of things he's testing for and and I would try and get your parathyroid and calcium tested too. Have a read up of parathyroid disease. It's not to do with thyroid. They are small glands located in your neck which control calcium and vit d. When I was sent to rheumatology years ago and had a full spectrum blood test it came back I had raised parathyroid and raised calcium. Sadly I also have an endocrinologist who doesn't think my levels are high enough to warrant an operation that could possibly cure me. I've also been diagnosed with fibromyalgia which is absolutely debilitating and anyone including some medics who think it's not a real illness need to go back to mend school. There are some great podcasts on fibro which would help you understand more about it. But definitely please ask for your pth and calcium to be tested. Am so sorry you are having to live like this. I can totally totally relate to how you are feeling xxxx

I have fibro and have a wheelchair for emergencies when I'm too exhausted to walk or my hips and feet are super painful x

Soubriqeut whatever is wrong, get a good night's sleep tonight. It'll be better tomorrow.. have a good one xxx

Sorry if you answered this already, I tried to read carefully. In addition to the pregablin & ozempic, What medications are you on, when did you start using those medications, and when did you start using the wheelchair?

Do you have a diabetes diagnosis now, or any history of gestational diabetes?

When were you diagnosed with the osteopenia? Were you diagnosed with any other conditions as of 1 May 2022 or since then?

What is your BMI?

I second that you need to go down the autoimmune route. It can effect so many things and it sounds like your symptoms fit.
I know you said you can't afford it but if there is any way at all possible you & DH could raise funds to see a private rheumatologist even just for tests/results I would do, you can then go back to NHS for treatment if necessary.
I did when I was younger and the results have changed the way I am managed in hospitals/during pregnancy etc.
If not get the blood tests added and then push to see a rheumatology consultant if anything is raised.

How is your mental health? Could it be hysteria? DF is a doctor and he very occasionally comes across patients presenting with pain with no physical explanations.

www.sciencedaily.com/releases/2013/02/130225092250.htm

Definitely seek a second opinion.
It's worth asking if any doctors at your surgery specialise in chronic pain Conditions.
My last surgery had a doctor that took a special interest in those cases, due to his wife suffering. He was always booked up as he is absolutely amazing.
He diagnosed my fibromyalgia.
Try not to let this one close minded fool upset you. Fibromyalgia is a real and debilitating illness. You can also ask to be referred to the pain clinic.
They help teach you ways to manage and live with the pain.
Sending gentle hugs

Wow lots of comments. I’ll try and answer what I can

Im 34. No I’ve never had any form of diabetes.

Yes, the pain is on the sole of my feet when they kick off.

The medications I take are

Pregablin
Omeprozole
Fluoxtine
Iron tablets
Mintec

I also have fresubin as I have ARFID, and it helps me keep the weight on.

i have fibro. I have a brilliant doctor who listens and is very up to date.

At the moment i take 900 mg of pregablin
Tramadol
etodalac
Vitamin D
Something for my stomach

I can function with lots of rest and pacing

the pain started in my feet so that really resonates with me

OK if you have afrid then how's your diet? Vitamin and mineral deficiencies can trigger all sorts of neurological and autoimmune conditions.

Have you had iron, vit b12 and d levels tested in the last year? If yes, which levels did you get?

Arfid

No I haven’t had those tested for a while actually. I’ll add it to my to do list

There is a painful food condition called plantar fasciitis my friend has that, says it can be helped with insoles

One of the things that caused absolute havoc for me, was that as others have suggested, it turns out I had more than one illness, and that made me sound like a complete hypochondriac. The symptoms together didn’t make sense.

and chronic vitamin D deficiency can cause chronic fatigue and horrific pain, so the sunshine thing is a good idea, but most people in the uk could do with taking vitamin d anyway as it’s difficult to eat enough food with it in. Worth a shot.

also pregabalin has a mixed evidence base for pain relief. Some people swear by it, some get really sleepy, horrific symptoms and no pain relief. In others like me one pill left me hyper and unable to sleep for days on end.

it’s also very difficult to come off, so if you’re feeling like it’s not helping, I’d be asking the doctor for support weaning off it.

it’s never easy, even once you know the cause, but I’d be looking for a new doctor, and keep in mind that the symptoms may not make sense if you’ve got lots of things going on

Yeah I already have those