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.
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. Bizarre. 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 at all 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 they I don’t have cauda equina.. 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 ♥️
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