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.
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. 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 by the way! I go light-heated, sweaty, shaky. My heart races and I feel dreadful. I actually passed out at work after eating my lunch and coming back.
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 ♥️
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AshB66
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I have both SLE and Fibromyalgia and will quickly say I have suffered from all of the symptoms you have described. I won’t go into the amount of appointments, medication’s and scans I’ve had in my 25 th year of having SLE. I’m also no means a doctor but I read a lot of medical journals and always looking out for a cure for all my ailments 🫰🏻. But reading your story has anyone looked into ME for you because it really sounds a lot like that. Like I said I’m no doctor but hope you get well soon and know that at least I’m out there routing for you to get the answers you deserve,
You poor thing. My sympathies. Sounds as though you are having to run just to stand still.
The NHS (and indeed U.K. medicine) is set up so badly for challenging interdisciplinary health episodes like yours.
I would ask - before a brain scan - what they are trying to rule out or in. And then, afterwards, what has been ruled out and what couldn’t have been seen on the scan but might still apply and needs checking. Am no doctor but am with you in wanting to rule out any kind of degenerative condition soon. So MS and all the rest. Wonder whether you need reflex tests as well.
Have you been tested for porphyria? I know there is a glucose component to its treatment but not enough to help you more.
Awful times we live in but if begging and hounding is needed, then beg and hound. Given your recent experiences of A&E, and non-diagnosis since, write to PALS and complain you are not getting good treatment. Say you have 4 children and that if their mother is ill, her lack of treatment affects them, too.
Get your partner to go to GP meetings with you, too, even if it means bringing a child along.
Could your symptoms be those of a person with low potassium? And are you supplementing now? If so, get a repeat test soon. And did doctors look at what could be causing your low potassium levels?
Endocrinology (am guessing your thyroid has been checked out already but worth looking at adrenals / anything else)?
Neurology? (Brain scan - prob already activated).
if you think any particular condition worth investigating, would recommend contacting the medical charities that run helplines for them. They know how the NHS should operate, even if it isn’t. And what tests to ask for.
Keep hassling the GP, in the meantime.
Constipation can be a nightmare, as you know. Read up on the reasons you can get it. I think MS is one - there are loads.
Check if any link to your menstrual cycles. V unlikely, but one of the things prob only you can tell / rule out.
Did you have Covid before all this started? And have you ever had an ECG? Thinking about vascular issues.
Hi, I'm really sorry you're having to go through all of that! I can't say I have any idea what is wrong with you or that I have the same symptoms. However, having had many strange symptoms over the last 4 years and many different specialists and blood tests, I can say that it's important to keep pressing the doctors for answers. I had a rheumatology apointment just over a year ago and all came back fine. I then had the same tests 3 weeks ago and all of the tests came back saying I had an autoimmunedisease (Lupus). My symptoms were basically the same as the year before.
All I would say is keep going with any exercise you can and eat only a whole foods diet - cut out all processed food and drinks.
totally agree--had symptoms 1-2 years before tests turned positive. The rheum was very dogmatic as I had a negative ANA and declined to test me one year later, found another doc and ana, anti-dsna roof high. I can also say that bloodwork for these autoimmune panels is not quality controlled by labs and you cna be negative at one labs (falsely) and if you do them at a higher quality say Ivy League Medical school lab they will be positive.
dear AshB66 I can’t really add to anything the other pair have said except I have the deepest sympathy for you. I just wonder if you had Covid and if this may be the ‘long Covid’ that is becoming more known about?
Apart from that I know that I felt partly the way you do when I had bad lupus flares. I got to the point of collapse before I had to give up work altogether . I had 4 teenage children by then and was a single parent. I just wonder if your body is rebelling against you because you are totally exhausted from having 4 children, a home and a job to juggle as well as going through the trauma of a global pandemic and lockdown. You (and all of us) NEED a really long rest to recover from all that.
I hope the MRI gives some answers but mostly I hope you have friends and family who will help so you can get some real rest. Think about cutting down on work, even if temporarily, and be kind to yourself. Get disability allowances if you need to. Please don’t keep pushing yourself to do everything to the point of burnout because your body will just fight back even harder!
I hope and pray that you feel better soon and remember we on this forum are all here for you x
your fatigue sounds like post exertional malaise, which is a symptom of ME and long Covid. No treatment other than making sure you don't over exert yourself. Your dizzyness sounds like pots, again common with ME and long Covid. Unfortunately no diagnostic test for either disease, diagnosed by ruling out everything else. But worth looking at, because I'd you do have it, and you keep pushing through the fatigue, you will make it a lot worse.
hi your story sounds very similar to my own, I have pretty much had over the passed 2 half years most of your symptoms, I was fit and healthy then I slowly started having severe joint bone pains i hassled the doctors months i managed to see see some 1 who done tests and sent to remotologist, dianogesed with fibromyalgia, i accepted and just got on with it a few months later I kept feeling like I'd been hit by bus fatigue unbearable migraines worst ever joint pains feeling dizzy and just unwell, couldn't manage to look after myself never mind my 2 year old son. For 2 years of bloods etc everything was borderline they just kept saying I was having fibro flare so flare after flare I thought no this is not right, anyway It wasn't until I cought covid in July my face eyes swelled my body was weak I was so poorly it was worse I ever felt I went to G.p they done urine tests sent me straight to hospital I was leaking massive amounts protein, at this point I thought lupus so did the nephrologist. Anyway I had a kidney biopsy and bloods after bloods for 2 3 month my ANA was negative and no signs of lupus my immune test was remarkable, they did find I have a rare autoimmune disease membranous nephritus, and I need further tests with blood specialist as I too have been suffering from purple blue legs, dianogosed with raynards at Xmas gone as my finger and toes go completely white. So I'm waiting more tests he said it will be a long road finding out what's causing this. Sorry for a long one just wanted to share my story. Don't give up I did many times it took till I had covid and a random urine test for someone to eventually listen, and given urgent care. I have a fantastic nephrologist now. Its sole destroying when your getting no were stay strong and hopefully they find out what's going on with your problems soon give you peice of mind. Take care dani💖
I have lupus since 20s and dg with membranous nephritis mid 40s. Memb nephritis can be from lupus, other reasons or idiopathic. It has been controlled with tacrolimus and cellcept.
Firstly just wanted to say how sorry I am to hear your suffering and how the doctors don't look at the bigger picture. Alot of the symptoms you have described; the weakness/pin needles could be nerve/spine related. The cold feet/fingers possibly raynauds. I belive you take co-codamol that causes really bad constipation.
There is something definitely going on and as others have said..keep hounding and listen to your body. One thing I learnt is pacing..so pls pace yourself and learn to say No when you can't do things..ask for help from family and friends and lastly be kind to yourself. Wishing you all the best..and some speedy answers. Lots of hugs
Hi AshB, wow you have been through the wars! Thanks for reaching out, this is a safe place for all of us to vent and ask questions and get support. I know others have already said this, but one thing that came to my mind immediately was PEM (post-exertional malaise), common in ME but other chronic illnesses too. Your constellation of symptoms definitely sound autoimmune to me, even if you don’t know which AI disease it is yet.
I can relate to most of your symptoms, including dizziness, joint pain, fatigue and overall malaise. I don’t get the leg weakness you’re describing, but I do get overall body weakness where I struggle to stand up straight and walk around. I get shaky too, plus headaches etc. One thought I have is myasthenia gravis—I was tested for this earlier this year due to unexplained breathlessness, and it is marked by progressive muscular weakness. From what I understand, the MG weakness typically begins in the arms and legs, but can start elsewhere as well. The neurologist is the one who can test for that with a repetitive nerve stimulation test.
The brain MRI can rule a few things out, including MS and some long COVID neurological effects. Usually, if they’re testing for MS, they will order a whole-spine MRI to go with the brain scan as well. MS usually presents with lesions in both the brain and spine, that’s why they order both. (You probably know this already!) Anyway, do let us know how you get on with the brain scan and any other tests that crop up.
Being tested for stuff, and awaiting answers, is exhausting. You’re not alone, feel free to reach out here as often as you need to. Keep us in the loop, and definitely pace yourself, ie. rest before you need to. Take care x 🌈🌻💕
Have you seen a Rheumatologist? It's where you need to be. GPs are limited in knowledge and the blood tests they can do. Have you had a DSdna blood test? My advice if you can afford £150 or so get your GP to write a letter to a Rheumatologist as a referral and pay privately for a more thorough discussion with a specialist. Any blood work can be referred back to a GP (they give you an envelope with what they want tested) so you don't have to pay extortionate lab fees. Your GP will not really care who you see when you are paying they just write a letter of introduction. Research your local Rheumatologists via bupa or any other private consultant website. Find the one specialising in autoimmune conditions and ask your GP to write to that person. You shouldn't wait more than a couple of weeks for an appointment. The next trick is finding a decent Rheumatologist! So sorry you are having such a hard time. 😒
I had lupus test which came back negative when I was very poorly and nobody could find what was wrong with me. In the end, I was hospitalised and put on a steroid drip. They ran the test again and they'd shot up. I had lupus. Hope you get sorted soon.
First of all, sending you HUGE support vibes, what a journey you are on - don't lose heart! You are clearly an immensly strong person, and you will get through. I think a lot of the lovely people on here have had to wait a long time for a diagnosis, some, like you are still waiting. I completely understand your frustration at wanting to feel "normal" again, sometimes you have to just rest and be a patient patient💜One odd thought crossed my mind, you say you were out and about with your children a lot before this hit you. Any chance you might have been bitten by a tick? Check out Lymes disease. Good luck with all the tests and let us know how you get on! x
Hi Ash, I am so very sorry for all that you are going through. It must be so hard with young children and working too. I really hope that your partner and family can help you, don’t be too proud to ask for help. Most of us here have been or are in your situation, desperate for answers. Your GP can take as many blood tests as they have needles but if they do not take the right tests then answers would not be found. I am pleased that you are getting an MRI, hopefully that will help diagnosis. It takes so long to get an AI diagnosis because they are so complex and overlap. For instance I was diagnosed with Lupus in 2009, this was changed to Bechets in 2010, to Low Grade Lymphoma in 2011 then back to Lupus later that year. Early 2012 it was changed to UCTD. For the next five years it was Lupus, Bechets and Fibromyalgia. Since then one Rheumatologist said Fibromyalgia and “ hysteria”, another UCTD. I have yet to meet my new Rheumatologist of three years but he feels it is more Bechets. Ultimately whatever the diagnosis you are very unwell to the point it is impacting every part of your life negatively. You need to push to see the Rheumatologist again. It is a struggle, one that we all know so well but you have support and understanding here. Be kind to yourself xx
First of all, I’m so sorry for all the trouble that you are going through! I know how difficult it is to get a Dr to hear you and to truly help you. I would also like to tell you not to be afraid to Dr “hop” if you are not happy with any of yours right now. All you need is one phenomenal Dr in your corner who can help you to make a HUGE DIFFERENCE in this fight. For me, it’s my Rheumatologist, he’s a God-Send and he helps me even when it’s not in his realm of expertise. He gets me referrals and he gets me updates and guidance quickly and never brushes me off. I have Fibromyalgia, Lupus, Gastritis, Brain Lesions, Sleep Apnea, heart arrhythmia, and a High risk for Glaucoma. Another thing to do, is to never give up on telling your Drs your symptoms because if YOU don’t feel well and you KNOW something is wrong, than you need to listen to your body. Don’t let them make you feel crazy or a burden or a bother. I was diagnosed with lupus in my 20’s (I’m 37 now), and I have joint pain, freezing fingers from lack of blood flow, I have weakness in my hands, muscle spasms, my legs give out frequently, I lose my hair, I can’t remember things, and I have a lot of trouble walking. I was on NSAIDs for years, and my stomach pain started to get so bad that I had to beg for an endoscopy to get them to hear me. So then they found the gastritis, which I’m on new meds for and off the NSAIDs. I had a CT scan, MRI and an MRA, which found Vasculitis in the veins and brain lesions. So I would HIGHLY push your Dr to do an MRA and an MRI, so that they can see the blood vessels. You may have brain lesions from Vasculitis of the brain! It may not be MS, it could be blood flow to your brain and nerves!
you are strong, you will keep managing until a diagnosis is found and treatment given. Many illnesses are diagnosed by the exclusion process, which will take time. There are many overlapping symptoms among the conditions you will read about here. If you can, go private ASAP to a recommended rheumatologist and get the tests started. The sooner you get a diagnosis the sooner you will start to be you again, out with your kids and enjoying life again.
In my humble and non qualified opinion the pain level you talk about sounds rheumatic in nature. Good luck and do update us.
Dear AshB - please don't feel that you are alone. Like you I am undiagnosed though with a different and much less severe profile - but we all have hit the brick wall that those with rare, painful chronic and female dominated diseases meet. And made to feel we are making things up /exaggerating - even by our nearest and dearest. And fibromyalgia and ME are convenient bucket diagnoses - no- one can fully test for - though fibromyalgia does co-exist with Lupus. I joined the Myositis UK private facebook page - as I had a slightly raised creatine kinase - but never developed muscle weakness just fatigue +++ nausea, joint and muscle pain. ... and now sun sensitivity and rashes - so atm looking to rule out Lupus. Like you I have some medical knowledge (I'm an slt). Some of your symptoms of muscle weakness chime with myositis - do read the descriptions on the website - it is excellent and membership is free - and Myositis often "overlaps" with Raynaud's / scleroderma/ (connective tissue diseases with lung and other issues) or Lupus. The person who moderates the page is so knowledgeable - she and the group can guide you/ are really supportive like they are here. Though this is their Conference week-end so they will be very busy. There are 2 Myositis centres of excellence in England - and many people go to more specialist rheumatologists privately for diagnosis - through full autoimmune antibody panels (ANA and ENA)... to avoid years of NHS suffering / less than optimal/ peacemeal care - and are then are managed in a joint care set up through local NHS rheumatoloists /GP's. This may not be so relevant but I also read about the unusual symptoms of porphyria/ the porphyrias when I was Google scholaring earlier thus year. It is actually NOT RARE to have a rare disease as there are so many of them. Don't give up or delay as these diseases can be very serious and best tackled early .... Wishing you
Firstly, I’m so sorry you’re having such a terrible time of it. I’m not medically trained but was previously diagnosed with ME/CFS and treated as such for years, so I know that side of things pretty well and note it’s been mentioned here. My symptoms changed just prior to having encephalitis, my blood test results also changed and now have an SLE diagnosis.
Personally, I’m not sure you solely fit the ME/CFS picture - you’d said - “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’. With ME/CFS that wouldn’t be the case, the more you move the worse you’d be - flat out for days on end regardless of the pain, and movement would make muscle pain worse. With autoimmune diseases for some, there can be a constant underlying fatigue which if you chose to ignore and override it, you will be worse after exertion as you’re laying fatigue from exertion over background fatigue which tips you over any tolerance level (or that’s my experience of it anyway). But, if it were found to be ME/CFS then you still have other things going on too which would need investigating imo (blue hands/feet, swollen joints, hypo episodes as they’re not generally part of ME/CFS).
I thought of Ehlers Danlos with your joint hyper mobility issues as I know that can have widespread affects on multiple bodily systems, some people are much worse than others. But, you do need other potential diagnoses ruled out. This will hopefully narrow things down and help the Dr know which way to turn and what to definitely rule in. I agree and think brain scan is a good next call. I’d also agree with others and try and get a private one-off appointment too, depending how long the scan will be. So, you’ve a plan there, the next few steps.
ME/CFS, EDS and Lupus and MS etc l have many crossover symptoms and it’s hard for them to unpick when there’s so much going on. It’s awful trying to get a diagnosis- many of us have been where you are right now, not listened to/understood, or that the medics know you are very ill but don’t know where to send you or what to do with you - to some (or a huge) extent. You WILL get there. There WILL be an answer, or maybe two. Things won’t always be like this for you. The difficulty is finding the strength to keep going when you are so ill, which we all can relate to, but you will, I can sense your strength in your post.
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 ♥️
I can’t even tell you how much it means to me, the advice and information you’ve given me is absolutely invaluable and I appreciate it so much.
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
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 ♥️♥️
Hey, so there’s progress! Fab news that your bloods are actually now showing how ill you are, finally - so hopefully this will point the way for your Doctor/Rheumatologist.
I can’t comment on your results, I’m absolutely not qualified to do so - plus we are all so different even within an SLE diagnosis, we have massively different results, plus it also depends on context and symptoms also. I just tend to know only what my own individual ‘abnormal normal’ results mean for me.
Fingers crossed your scan will be soon and sending you loads of 🍀 for your Rheumatology / GP appointments. ✨
I have had years of tests and am still sticking with it. The problem is the nhs doesn't have the resources they need. I know it's awful but you can get through this.
It's not easy for anyone on here but that is what everyone is here for to support each other.
I have seen the replies you have had and how supportive everyone is.
You are not alone.
Pacience is the only thing we have. You will get the help you want. It just takes time and a inner strength I know you have.
Bare with it no matter how bad or hopeless it seems. It will work out it just takes time but you have the support of everyone on here.
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PLEASE HELP?!? Unusual rash :(
Desperate for advice...
Help please
Help please 
