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

Thank you for your kind words, I really appreciate them 😊

You sound like me op. You need to see a neurologist for tests and (electro conductive studies)& rheumatologist. Alot of the suggestions do sound like possibilities ie MS, fibro, hEDS, rheumatoid disease ie RA, Sjogrens, lupus. Your GP could in the meantime run CRP, ESR, rheumatoid factor, anti CCP, ena, ana titer/immunofluorescence, ds-dna, anti Ro A and La B. Some of these tests might only be done in hospital rather than by the GP. I'm also thinking you could have dysautonomia and small fiber neuropathy. Neurologist dx these. Good luck, it's miserable 😣

Have you ever been tested for coeliac disease? That can contribute to a lot of pain (in various body parts) osteopenia and obviously tummy problems.

Hi OP, I'm so sorry to read your post. General practice is not great at diagnosing anything that is out of the ordinary. And i dont get fibromyalgia diagnosis, it helped my step daughter get the right meds.

Could you self refer and see a specialist?

I have osteoarthritis in my knees, I grit my teeth to walk. Stairs are horrendous and I do my best to avoid them, but I found CBD capsules have helped me immensely. I then finally had steroid injections which kid you into thinking you're OK and so they helped me too. I also found for my joints that Krauter Pferdebalsam horse balm also helped. None are solutions but if any help you then it was worth sharing.

Noone knows what it's like to be in constant pain. 😪 Don't give up, keep fighting to find out what the issue is. Sending a hug xxx

Are you joints hypermobile? Have a look at hypermobility disorder. I have hEDS and had to fight for a diagnosis. Where in the UK are you based because I can recommend a truly excellent hospital in Shropshire. Take care. Ask me anything - I have lots of experience and many health conditions

Having had this kind of problem in the past I would suggest pushing to see a chronic consultant at a leading hospital (eg guys and St thomas) or a general consultant. I got referred to the latter, he asked me what was wrong with me, I burst into tears and said that's what I need to find out. He was the first person to look at my separate conditions holistically and give me a diagnosis of fibromyaligia. I agree with your doctor that this diagnosis is not particularly helpful if just taken in isolation. But it helps you to understand your body in relation to the problem and give you a start to research how you react and deal with things. But this is only one of many diagnosis, some of which can only be made by treating for and excluding others when those treatments do not work. It's a long process, keep a diary of both symptoms and such external influences as foods, temperature and stress levels. The more evidence you provide the better. Good luck.

I recommend you see a chiropractor & a private Nutritionist for a full allergy screen & blood screens… there are a lot more in depth than just a regular test from the GP.. lack or excess of certain minerals or toxins can cause a huge catalogue of symptoms.. not necessarily food, could be environment (daily toxins we get exposed to) in addition to a GP… lots they can help with.. did anything happen around the time the pain started in August? An emotional trauma or any vaccines or any changes to food you eat or where you live or products you use or mould in house? Any major stressful events around that time? Can trigger physical symptoms..

Oh you poor thing. I lived for 3 years knowing something was wrong. I couldn’t function. I had no memory. I would get lost driving simple routes. I was in pain. My limbs had pins & needles. I couldn’t balance. I had tinnitus, bladder problems & co ordination problems. I would become lightheaded & breathless. I went to the drs so many times. In the end the Gp said he couldn’t help me any more & suggested a HIV test as he didn’t know what else to do.

I felt like no one believed me apart from my husband & there was no one to help me. My friends husband had been diagnosed with MS so I thought it might be that. I didn’t sleep for weeks for the worry, but then I worked out it couldn’t be that. I went back to the Gp in desperation & when I mentioned the constant sickening headaches he sent me for a brain scan.

i’s realised I was reacting to gluten so if put myself on a gluten free diet & my my friend who had been really poorly mentioned some her symptoms. I said they sounded like gluten & said I would do some research for her. When I looked up her condition which is b12 deficiency I realised I ticked every box!! I called the Gp & got another blood test. A Uk level is considered okay over 250, but Many countries work on a basic level of 500. The Gp called me 2 days later & said cricketwidow you are really ill. I said I’ve been telling you that. My level was 24!! No wonder I was so ill. It had taken years for my levels to deplete to that. Turns out the Gp had never ticked the B12 box in the blood tests 🤦‍♀️

I’d been asking for help all that time while just getting sicker. I started the basic NHS treatment which is an injection every 3 months. I would improve for a few days & then go down hill. I followed this for a year while researching.

I then found out that I should be having an injection every other day while repairing & only when I’m optimum should I move to less regular injections.

I joined an amazing Facebook group who gave me all the info & support to take back to my Gp to request more frequent injections. They refused. With the support of the practise nurse who knew I fully understood my condition & that the Gp wasn’t going to help me I sourced my treatment from abroad & have been doing this now for 7 years.

I’ve managed to get myself back to the woman I was. I can look after my children. Work & have a social life.

Most of the people in my group have been failed by their Gp & have suffered serious neurological illness. Often written off with MS, fibromyalgia & other similar conditions.

I urge you to join some reputable Facebook groups such at the B12 one. Fibromyalgia, Lupus, rheumatoid arthritis & any other autoimmunes you can think of. Post your symptoms & ask for help. These groups are full of people who have had to find out their illness for themselves & push for their wellness. You will find some many people who will have walked in your shoes & will have the information you need to get help & find out what you need.

I would also write a letter to your practise manager saying that you can’t find a prescription for sunshine on the NHS website therefore you can’t accept this as a medical diagnosis.

I wish you well in your fight to get to the cause of this, but please known there are many people who have walked in your shoes & will have the knowledge to help you get to where you need to be x

This. Same here. Although OP has had an MRI scan and it should have shown up on that, but it depends what they were looking for at the time, I suppose. It should definitely be tested for so that it can be ruled out, at any rate.

C-reactive protein is an inflammatory marker blood test.
OP-hope you get some answers and help very soon.

Really sorry to hear about your pain.

I was diagnosed with fibro after they ruled out other stuff in the same way as you. I resigned myself to a life of managing pain. I also had other symptoms too.

But then I found it by accident (long story), it was actually B12 deficiency. This had never shown up on blood test but NICE guidelines are to go on the symptoms even if blood test shows no deficiency. So you could ask to try 2 weeks of loading injections to see if it helps. If it does then you will need them 'ever other day until no further improvement' and then regularly thereafter.

Having been given a diagnosis of fiybro by a consultant rheumatologist and it turning out to be something so simple and treatable, I think it's worth everyone ruling it out!

Even if its not the cause, it won't do any harm if you are a bit run down xxx

Aw @Soubriquet <3

I have a lot of these symptoms and have recently been diagnosed with Undifferentiated Connective Tissue Disease. I also have a hiatial hernia which has been mentioned on this thread (thanks to my pregnancies!) and thought my issues - which started in my feet, couldn't get up in the night for the kids, horrendous - were plantar fasciitis which has been mentioned too. UCTD takes various elements of lots of autoimmune diseases - for me it's incredibly dry eyes (to the point I can't open them) from Sjogrens, Malar rash from Lupus, joints/feet issues from Rheumatoid Arthritis and so on.

Thought that might be helpful to share? When did all this start for you? Mine was triggered after my second birth (traumatic) which is classic autoimmune. I felt hugely better in my 3rd pregnancy which is also classic autoimmune. I'm also 33 if that's relevant.

I am not a doctor, have been a patient. Is it possible that for one of the issues you have a stomach burn from some of the meds. If so, can this be treated now? I would ask if it would be possible to try a short course of a different proton pump inhibitor and have a break from the iron, as well as a diet to combat stomach burns. Saying what helped me and as I said I am not a doctor, so of course check.

Is there anything that happened or you had shortly before symptoms escalated?

Definitely look into FND, some of your symptoms sound like my friend. She had to properly fight to be diagnosed with it :-(.

Your symptoms are almost identical to those my daughter has suffered since she broke her ankle about years ago. After many, many tests, that all came back clear, like yours, the doctors finally diagnosed fibromyalgia, basically by a process of elimination.

She has been advised that there is no cure as such, and it a case of managing the symptoms and finding the best options for her. They prescribed low dose opiods for pain relief (not really effective) but they have also told her she needs to make lifestyle changes, like losing weight, reducing carbs, exercising more (yes I know, it's hard to exercise when you are constantly exhausted) We go to the swimming pool and just walk around in the leisure pool allowing the water to support our weight (I'm obese, going for bariatric surgery soon) and she does find that the symptoms pretty much disappear while in the water.

She also finds that sugar free Dr Pepper helps with the stomach cramps !!

I hope you find some form of relief as soon as possible. Good luck to you, you don't deserve to suffer in this way.

Co codamol is opiate pain relief though. Ibuprofen is not.

taking two opiate based products is never advised really due to the CNS depression it can cause.

@JellyBabiesSaveLives sorry didn’t mean to tag you!

Hi I suffer with fibromyalgia and as I was reading your post, I thought fibromyalgia, the pain in your abdomen is more than likely IBS which some people suffer with. I really hope that you haven't got this illness because it's not nice to live with

In terms of medications/whether you can take ibuprofen - I haven’t RTFT so someone may have already said this - ask to speak to the pharmacist attached to your GP practise rather than a GP. They have much more knowledge of drugs and interactions than GPs.

Did you have a course of antibiotics before the pain started?

https://www.medicalnewstoday.com/articles/322429#other-warnings....

Some info about pregbalin on here, OP

I had 2 autoimmune conditions and felt exactly like this. The first one I tried to get help for 14 years before they eventually agreed to an endoscopy when I stopped eating anything as everything made me so ill. It was coeliac disease, which also causes malabsorption of every damn thing, so b12 and iron were buggered too. Fast forward to 3 years ago where i started to struggle to walk and swallow. Basically told it was in my head, but with the help of the b12 society I now inject every day and can walk and do almost everything I could before. There will be an answer to this, you just need to keep digging unfortunately. And don't think bloods are normal if they say they are. Mine were normal and I couldn't walk and could barely see. I'm so sorry you are being abandoned like this.x

Also currently being investigated for Inflammatory Bowel Disease which I didn't think was relevant to you but perhaps it is if you're having abdo pain - all connected etc. I dunno. It has to be something OP!!

Not saying it's the same as what you have, but maybe part of it? I had pains in arms, shoulders, feet and legs, was hardly capable of dressing myself (putting my bra on with the hooks in front and then turning it around because I was not able to reach behind my back). I was limping, had trouble getting in and out of my car, hurting all the time. GP couldn't find anything. A friend suggested I maybe had magnesium deficiency. No prescription needed for magnesium, so I started taking double doses. Very quickly I felt better, day to day progress. Later I was at the GP with one of my children. I still had a slight limp. He decided to take my blood. Results came back, and only then did he see the magnesium was barely reaching the minimum limit - after 6 weeks of double doses! So that had been the problem all the time! I hope they find what's ailing you and wish you all the best!

Have you ever been tested for coeliac? When I’m having a flare up, I have terrible abdominal pain and skeletal pain as well as nerve problems. Might be worth a month of eating gluten free and see if that can help with any symptoms?