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Chronic pain

Doctors, nurses, patients, people - if anybody can help me. You’ll literally save my soul 🥰

17 replies

26goingon90 · 13/10/2022 21:15

Before I start, this is definitely going to be a long winded one but stay with me here if you can 😂

I’m absolutely desperate for some kind of answers, advice, similar experiences - literally anything to make me feel like I’m not going completely insane. I’ve just turned 27 last month, I have 4 children. During lockdown in 2020 with loads of spare time on my hands (as much spare time as you do with 3 children at the time) I decided use that time to lose some weight & get healthier and fitter. I managed to lose 2 stone, and felt amazing for it. I was so much more energetic, and for the next 2 years I would walk miles every day, always out and about with my kids and just enjoying life. Always been healthy. Only health problem was postpartum thyroiditis, resolved every time.

In April/May time this year I started to notice that my feet & legs were going really, really blue. When I was cold, when I was in the shower especially, or sometimes just randomly. This then spread to my hands. After about a month, I rang the GP (in England - NHS) feeling a bit stupid for even doing so as it seemed such a minor thing. The GP assured me it was NOT normal, and I was right to ring. He ran some blood tests. All fine.

But after this it was like it snowballed. It was like somebody had flicked a switch. I was suddenly struck down with this awful fatigue, and started to get joint pain & stiffness. Started in my knees (which have clicked & popped for years) but then kinda spread to my hips, lower back, shoulders. I started getting pins & needles and numbness in my hands and feet. I also felt just generally run down + crap. I couldn’t work it out but I knew I felt rough. I started to feel cold a lot, but had some increased sweating and was also very thirsty + hungry. My first thought was diabetes. Rang the GP again, he said they’d already tested for it. It had come back normal. But they were going to run some basic rheumatoid & inflammation tests. I started to look into this more. By this point, it all seemed to fit. I had worsening joint pains, tiredness, stiffness in the morning, and by this point also had some general weakness in my legs/arms. They were all clear. I was referred to rheumatology anyway.

I was given co-codamol and naproxen. This went on for a few months, gradually worsening until I ended up in urgent care twice because of pain so bad I couldn’t take a deep breath. Both times I was put on stronger painkillers & steroids temporarily. Back to the GP - a new one who thought I had ankylosing spondylitis. The gene test for that came back negative.

After another episode of horrific pain, I had another amazing doctor at my GP practice who ran every immunology test under the sun. All clear. In fact, everything perfect really except a borderline high ALT, borderline high but normal WBC count, and a low potassium. Thyroid antibodies to be expected.. At this point, I was okay as long as I was moving around. The less I moved, the worse I felt. I stiffened, I got sore, I was in pain. So I kept moving and it was awful, but bearable. I began sleeping on the sofa because night times were the worst. I tossed and turn in pain and discomfort.

Onward to my rheumatology appointment last month. He reviewed all my tests, and said they all looked fine. He said I had hyper-mobility, and would send me for a nuclear bone scan to see what was going on.

Now, during the last month or so the general stiffness/pain in joints has slightly improved. I still ache, and hurt but not unbearably. But the weakness has become horrific. My legs give way from under me and buckle, I have days where lifting a spoon can seem too much, I shake, and I have zero strength or grip whatsoever. I’ve also started to notice I feel less co-ordinated, more clumsy, just sometimes not on this planet at all. I’ve started to get weird dizzy spells where I just feel almost drunk. I don’t drink either by the way! I go light-heated, sweaty, shaky. My heart races and I feel dreadful. Last week I spent the whole night awake with the most horrific pain in my right shoulder that went all the way down my right leg. The pain was bad in my shoulder, but most worrying was the complete weakness in my leg. It kept giving way & buckling on me. I went my out of hours doctor, who gave me muscle relaxants for a ‘muscle spasm’ and sent me on my way.

The weakness in my leg got worse over the weak, and then for some reason I was struggling to go the toilet. I’ve always suffered from constipation mildly, however this was as if I’d lost the ability to go at all. I was sent from urgent care to A&E, who x-rayed my spine and ruled out cauda equina and sent me on my way. I disclosed to the doctor that I was worried it could be MS, so they put in a referral for a brain mri. Awaiting this. Amazing.. but I’m still poorly?! I’ve spent the last week feeling the worst I have ever felt in my life. Weak, shivery, poorly, just unable to function whatsoever.

I went to the pharmacy for laxatives, who redirected me to my doctor, who sent me BACK TO A&E.

Are you losing the will to live with my story yet? Cause this is my life at the moment. 😂😂 it’s a ball.

I went back to A&E who diagnosed me with faecal impaction and sent me on my way with laxatives. But not before they’d taken my bloods and put me in the waiting room as standard. 10 minutes later they are running in for me and putting me in a private room in emergency care, telling me I’m having a hypo and I need a glucose drip fast. My blood sugar was at 3. I’d an hour before eaten a bagel with Biscoff spread because I’d felt so weak & shaky.

So I’m now at a complete and utter loss. I’m stumped, seriously. I have some healthcare/medical experience, I work in science, I’ve worked in midwifery, nursing care. I’m not a doctor but I have some knowledge there. And I’m seriously just baffled by what is wrong with me. I know for a fact I don’t have fibromyalgia. That’s all I do know. But I’ve cycled between RA, lupus, axial spondyloarthritis, diabetes, MS, ehlers-danlos. I just don’t have a clue what is wrong with me and it is completely ruining my life.

I have days where I can’t function, I crawl through the day most days. Then I have days where I think - mind over matter, I WILL get better. And I’ll go to work, or take my kids out for the day, have an amazing day. Then the next day I feel like I’ve been hit by a bus. It’s impacting my relationship, my parenting, my job, my life. I don’t know if I need a rheumatologist, a neurologist, an endocrinologist. My GP don’t seem to want to help unless I beg or hound them. I understand the pressures GPs are under before anybody says otherwise, but mine really have fallen short with me quite a few times. But I also, I understand that they seem at a loss as to what to do anymore. If anybody could help me, it would mean the world & more ♥️

OP posts:
isladeltesoro · 13/10/2022 21:20

On the diabetes theme, have you considered type 3c diabetes caused by haemochromatosis?

HilarysMantelpiece · 13/10/2022 21:21

Oh hon! I dont want to read and run, hopefully someone bright will be along to offer some new insight.
I have to say my first thought was 'connective tissue' issues but you say that Ehler Danlos has been outruled?
Did you have Covid- any chance it's an atypical Long Covid presentation?

RebornRebound · 13/10/2022 21:22

Gitelman Syndrome springs to mind. I am not a medic but a colleague was diagnosed many years ago. Wishing you all the best and fingers crossed for some answers.

CrookCrane · 13/10/2022 21:41

What makes you think it isn’t Fibromyalgia and have they tested you properly for EDS?

Bnotbroken · 13/10/2022 22:03

My guess would be fibromyalgia or eds I was diagnosed with fibromyalgia 20 years ago and suffer from everything you have described and more. I suspect I may have eds but having it diagnosed is an absolute shit show but the way I see it having lived with it for 20 years is that basically my body doesn't function properly most of the time and likes to throw in all the stuff!20 years later I'm still surprised by the weird stuff I experience and I'm still trying find a more plausible illness that can actually be treated! Sorry for your ordeal it's so hard to be in limbo with your health and not getting the answers you need, wishing you luck

Willowkins · 13/10/2022 22:15

Has anyone mentioned Lyme Disease? I'm not a medical professional but I was just thinking that maybe you got a tick bite, with all that walking, especially if it was in the countryside.

Chocolate2cake · 13/10/2022 22:46

Myasthenia gravis

poppymaewrite · 13/10/2022 22:49

I think it’s interesting that you started experiencing these problems after you made changes to what you eat.

It might well be related. Sometimes when people go on diets, they start eating more animal protein under the belief that this will help them. It might be great for weight loss, bit consuming animal protein is stronly linked to autoimmune diseases.

Don’t write it off as being the cause behind this. I suffered from debilitating health problems before going vegan. My only regret is not doing it sooner.

If you’re not eating more meat, eggs, chicken etc, my question would be- are you eating enough? Your body may be weaker if you’re not getting enough energy.

Pixiedust1234 · 13/10/2022 22:54

Every time I try and post the site crashes, so for the fourth time..

Why are you so certain you don't have fibro? If you don't then maybe I don't....

The blue legs that started it all - no idea
Faecal impactation - probably a seperate thing but auto immune can screw up your digestion. IBS is linked to fibro for example.

The biggest two helps while waiting for the medics is high strength Vit D with K2 for general pain, and multi Bvitamins for the nerves.

Casimira · 14/10/2022 11:49

You poor thing. I really do sympathise.

I have a lot of the same symptoms and have a diagnosis of Ankylosing Spondylitis. You said they tested you for the gene but that came back negative - is that why it was ruled out? It is possible to be HLA-B27 negative and still have AS.

26goingon90 · 20/10/2022 20:35

Firstly, thank you from the bottom of my heart for everybody who has taken the time to not only read but reply to my post ♥️

All my ANA, ESR, dsDNA, antibodies to CCP were negative. However this was a few months ago, and from what I have read it can change.

I can’t even tell you how much it means to me that you’ve all replied to my post - the advice and information you’ve given me is absolutely invaluable and I appreciate it so much. Makes me feel much less alone at a really crap time.
Just as an update if it offers anything more - things are finally starting to show in my bloods at long last.

Awaiting speaking to my GP/rheumatologist to discuss but my blood test from last week showed:
CRP of 21 (previously 0.3 consistently)
Raised ALT & alkaline phosphatase
Low WBC & low neutrophils
Borderline red blood cell count & haemoglobin

Not sure if that helps anyone, but I’m praying that they can find some answers for me now.

Thank you, you truly beautiful people ♥️♥️

OP posts:
HangryFeminist · 20/10/2022 20:41

It’s not Reynauds is it? My friend suffered terribly with it before diagnosis but now manages it quite well.

Zarzuela · 20/10/2022 20:51

If it were me I would look at a whole system reset. I would look at something like the Joe Cross reboot, see his film Fat, Sick and Nearly Dead for an example of how this can work.

I am a huge fan of fasting for health, there are books you can read on how diet affects us in many ways eg Better Health Through Natural Healing.

I would start with a supervised fast and rest at

Volterra · 20/10/2022 20:58

Does any one in your family have psoriasis? I’ve just been diagnosed with psoriatic arthritis finally that I’ve had for years, probably triggered by pregnancy and flared up badly with menopause. I had flaky scalp which was in hindsight probably psoriasis but it was only when my Dad was diagnosed with psoriasis last year aged 84 that I realised that it was in the family and that my brother, aunt and cousin all have it and things slotted into place.

In some people the arthritis predates the skin involvement or people have it without realising eg. Scalp or nails. One of the questions the consultants asked was about my digestion. Just a thought.

QuietLieDown · 20/10/2022 21:36

Like others, I'm wondering why fibromyalgia has been ruled out. Have a google of: POTS/dysautonomia, hypermobile Elhers-Danlos (I know you've mentioned that one), and Mast Cell Activation Disorder/Syndrome - often co-occurring and with a wide range of symptoms that can very between and even within individuals, making diagnosis tricky and often very drawn out. There's a school of thought that along with autoimmunity and gastric problems, there's actually a "pentad" of conditions as they so commonly co-occur.

Best of luck, hope you get to the bottom of it all soon.

jenniferjane21 · 20/10/2022 21:56

Sounds very like Lupus to me. Reynauds, hypermobility, joint pain are often pat of Lupus.
Poor you, really hope you get some answers soon.

whyhere · 30/11/2022 21:52

Wondering how you are OP....

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