As many of you already know I have been formally diagnosed with Undifferentiated Connective Tissue Disease which is Lupus like. I have most of the Lupus SLE symptoms: positive ANA, thrombocytopenia, malar rash, other rashes, joint pain (feet, ankles, knees, elbows, wrists, hands), headaches, hair loss, night sweats, depression.....I also have psoriasis and Hashimotos. All of these things I can just about cope with on hydroxychloroquine.
I have been on long-term sick for 18 months now because I am constantly in flare. What I am not coping with is an excruciating pain that starts in the middle of my back (bottom of the ribs left side) and wraps around my left side to the front and into my lower abdomen/ groin. The pain is there all the time but it gets worse in the evening/night and I get intense stabbing pains too.
At my hospital appointment last week I expected to be able to get the results of my MRI scan and finally get some proper treatment for the pain. But what actually happened is that I had been sent to a Bechets specialist who said I didn’t have Bechets and that my symptoms were more consistent with Lupus (which is pretty obvious to anyone with half a brain). So I’m to be re-referred back to the general rheumatology team.
When I asked the Rheumatologist about the terrible pain in my kidney region she told me that this pain couldnt be linked to my UCTD and I would need to go back to the GP to find answers. When I asked whether anything had been spotted on the MRI it turns out they didn’t scan the area where I have been getting pain - no they scanned my pelvis and ruled out ankylosing spondylitis. 🤷🏻♀️🤷🏻♀️🤷🏻♀️🤷🏻♀️🤷🏻♀️🤷🏻♀️
I am at a complete loss as to what this pain could be. My only relief for the pain is morphine - lots of it. My GP has put me back on Prednisone but it’s not helping.
Does anyone else experience this or a similar type of pain with their Lupus? Could you please tell me what the diagnosis is so that I can focus my research.
At the moment I feel like there just isn’t any point to life anymore. I wake up in pain, I turn myself into a morphine zombie all day, then I go to sleep in pain. Rinse and repeat for 18 months. I’ve lost all faith in the NHS and I just want to get off the merry-go-round.
Take care lovely Lupies xxx
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Crazy_Cat_Woman
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Well I’m not a Lupie so apologies in advance. I’m just a Sjögren’s babe with Hashis and other rubbish. But your very relatable and heart wracking rant struck such a chord with me today.
I too seem to get the wrong parts and the wrong bloods and the wrong conditions investigated all the time. I’m honestly starting to feel despair. I don’t know how to get the right doctor or the right tests done nor can I explain the extent of my unwellness and pain to my husband, sons or any friends. They are sick of me being unwell I know.
I have almost the exact pain you describe in the same place. Last night I took the only pain med I have - paracetamol and 4mg of Diazepam. This morning I woke at 6am and the awful pain in my lower ribs had eased up. I guess this confirms that part of this is muscle spasms although I do fret that it might be liver related because the pain has moved from left to right and intensified x100. If it hadn’t been Friday night and if I hadn’t eaten quite a rich dinner compared to usual - I’d have thought I could be having a heart attack.
The problem for me is that I am my own worst enemy with doctors. I describe one thing, they double check, I think I must be consistent to be believed, only to afterwards realise that I’ve described or confirmed my symptoms inaccurately. Basically I’m not a professional patient and nor are you. Yet this is what the NHS is forcing us to become?
I had an MRI of my pancreas 3 months ago. It was a nightmare as I was in the wretched mobile unit for 55 minutes being told to breathe in and out by a guy who wouldn’t tell me how long to hold it out for.
So I knew I was doing it wrong but then when he took me to the lift afterwards he said that it wasn’t my fault I couldn’t hold my breath for as long as required to get decent images. So why didn’t he tell me to keep holding or give me an idea what number to count to before I breathed in? I held as long as I could but if I’d known I had to hold for even longer I would have done it in order to get out.
Anyway it turns out that it didn’t include my spleen, kidneys or my liver let alone my stomach - or if it did no one has told me or my GP. I’ve received no letter from gastro. The same thing happened with my sinus CT and my request that it include my jaw. They even phoned oral medicine to ask and my consultant said no not required. Then when I saw her the following month she asked if my jaw had been included or not?! Of course it hadn’t - or not all of it anyway.
When did we turn into a series of vaguely related body parts?
Regarding this awful lower rib pain; so far my GPs have said it is probably musculoskeletal rather then heart related. They speak about muscles impacting on my ribs, making it hard for me to breathe fully in and out for pain. Do they mean costochondritis I wonder? I describe interscapular pain so perhaps they think it’s wear and tear arthritis in my thoracic spine? But apparently my thoracic spine was okay when viewed about 18 months ago and degenerative changes in the spine are usually slow to occur.
So why didn’t I just ask my GP what she meant? Instead I asked if she was describing similar referred pain to the neck muscle spasms I had earlier this year causing my terrible headaches? “Yes in a way - perhaps quite similar” she replied. Perhaps she thinks this is functional pain eg Fibro but I’m not diagnosed with this and she knows what I think about it. And so we moved onto heavy sweats and flushing and my post menopausal status.
Anyway I’m to have 24 hour urine test and blood tests now. Stupid me I wimped out of asking her what she was looking for. I just want her to like me and for her to feel I trust her. And I do to an extent - but at the end of the day I don’t trust any doctor with my health anymore.
My PV is over 2.00 now and according to everything I read this is too high to be inflammation or infection and points to Paraneoplastic syndromes. I really shouldn’t be worrying like this and nor should you. We should feel our doctors are in control of things in a positive way and would know if anything really bad was happening to us.
But with the NHS on its knees how can we not worry if we are feeling so sick with pain and discomfort?
I found Diazepam helped with last night’s rib pain and back pain and awful gastritis - but the pain and gastritis are building up again now as evening draws in. I also rubbed my ribs with aloe Vera and arnica gel so maybe this might be if temporary use for the pain? Sorry not to be more useful but I can at least empathise and sympathise with your incredibly frustrating predicament. Xx
I’m not a proper Lupie either just a limbo-Lupie!!
I’m so sorry that you are going through the same awful pain. It is just soul-destroying at times.
I can totally relate to everything you said in your reply. What I don’t understand is why the doctors can’t look at the symptoms we are describing rather than chasing their newest pet theory. To be honest I don’t really care what diagnostic box they put me in as long as they are treating it in the best way possible.
It’s interesting that you have the same pain in the ribs. It gives me more confidence that it is autoimmune related and not some random other illness that just happened to appear when I started flaring at the end of 2017. I will ask my physio what his thoughts are when I see him next month. If I get any answers/ new theories I’ll be sure to let you know.
I hope you have a quieter night pain wise Twitchy. It’s so horrible being in such pain. Xxx
I think that costochondritis is often assumed by doctors to affect the ribs closest to the sternum. But I read that it actually often affects the lower ribs and rear ribs too.
For years now I flinch with terrible pain if anyone tries to press on my lowest ribs on either side. I was told once by an A&E dr that this was costochondritis relating to the inflammation of RA.
I’m hoping to make you laugh here. One GP patronised me earlier this year when I had this same pain with cough and he saw me with a student present. He looked at my latest ultrasound results, settled on report of enlarged liver and delivered this lecture about me needing to exercise more energetically. I told him Sjögren’s can cause fatty liver and he politely said he didn’t know this in a tone that implied the student that I was a typical “expert patient” (🙄🙄🙄). I left feeling fat and fuming!
I saw him again a few weeks ago with lumps on my left rib side and told him that I had a strange new pain right in my heart. He listened and examined - organised ultrasound for the mystery lumps and was perfectly nice to me.
On Monday I went in at lunch time to collect a print out of clinical letter from oral medicine and he was standing at the back of the office eating a large muffin, all sweaty with the humidity, belly slightly hanging over his belt, looking a bit like a naughty school boy. The receptionist checked with him that I could have a copy he came over saying “oops sorry I haven’t had a chance to read it yet Matilda (my real name!) but as you can see I’m making a mess with a muffin so I’m sure you can have a copy and will interpret it well enough?!”. I replied “well it’s good to know you’ve got your priorities sorted and trust me to have a copy. I’m on the 2.5 diet by the way and today is my fasting day so at least MY mind is razor sharp!” He grinned goofily and said “oh dear now you’re putting me to shame!”.
Revenge is a muffin best served all warm and sweaty in a GP’s office?! Xx
Oh no I had this with someone yesterday - tried and tried - in the end I discovered that I’d been logged out so re-logged in and okay after that. But my reply to this stranger on another HU was very brief! Copy before clicking send if you can. Hugs xx
I have been diagnosed with Central Nervous System Lupus and the biggest symptom is chronic pain down the whole right side of my body. My lupus Dr thinks i have a lesion on my spinal chord but they just can't find it. For 18 months, nothing was taking the pain away. I get a deep throbbing pain with sharp intermittent pain. I responded well to Tapentadol, a very strong pain med that my GP had read about in a medical journal, and that with my other meds (hydroxy, Nortryptyline, mycophenalate) seems to massively help. I still have flare ups but not as often. I also cover myself head to toe with heat pads. Pain is the worst thing in the world to me because i know i will have this forever but thankfully there is now a balance of meds that helps. Please keep strong and determined in ordee to find your right balance. I was persistent, always calling to get an appointment to try something different. I know things are looking hopeless but i promise you, there is something out there for you that will help.
Thank you for your suggestion. My pain is exactly as you have described - a deep throbbing mist of the time with intermittent stabbing pain. Sometimes you can actually see the area swell and feel the it pulsating. It’s so strange.
I will make a note of your condition and the meds you are on and ask my GP if these could perhaps apply to me too.
It’s so hard to keep fighting all the time but you are right - we can’t give up on ourselves.
I have a lesion on my spine Ange . It showed up on a spine mri. I have transverse myelitis which is rare- only 300 diagnosed in UK each year. Rheumy says it’s not due to Lupus as bloods are normal. One Neurologist thinks otherwise. The other neurologist agrees. I’m having a lumbar puncture tomorrow and more bloods to rule in things and rule out things. I too am in pain
I had 5 MRIs, nerve testing and a lumbar puncture and they couldn't find anything. Slight build of protein but that was it. But with my chronic pain, vblood results and other symptoms my rheumy Dr said that it all pointed to CNS lupus and i got sent to get a second opinion from Prof D'Cruz at Guys and St Thomas, who confirmed the diagnosis. They are convinced the lesion is there.
i can relate to most of your symptoms. I only have pain on my right side which has thrown Drs.
How are you managing pain? How active are you?
I hope your lumbar puncture goes well. Send hugs and healing thoughts
Dear Crazy_Cat_Woman, I am incredibly sorry to read that you are in so much pain to the point of despairing. You have my deepest sympathy because I know exactly where you are coming from because I have been there myself. I experienced six years of continuous pain after a massive lupus flare in 2012 and can still experience pain so bad that it makes me sick. I too have been prescribed morphine and even fentanyl ( which I did not take because it was so strong it frightened me). It is very easy to despair when you are living in a world of pain but please know that it can be overcome. You sound strong despite everything that you are going through and determined to do your research so you will find a way! I found an excellent rheumatologist who does both NHS and private work and found her superior to some private London lupus specialists. For example, you do not mention corticosteroids and she gave me intravenous steroids in order to break through my pain and my flare. Her name is Dr Wendy Holden and she works out of Basingstoke hospital. There are more details of my journey on my profile. Again, you have my massive empathy for what you are going though, huge encouragement that you will find a way to get you out of pain, and with my very very best wishes, Lily
Thank you Lily. I’m sorry to hear about your journey. The pain is absolutely the worst part of my illness too. I can just about handle everything else. My GP has just put me on Prednisone but it’s too early to tell if it is making a difference.
It’s hard to stay strong some days and I think I need to regroup after last week and all the disappointment.
Thank you for your very reassuring reply. I really appreciated everything you said. X
Hi ,so sorry to hear of your dreadful pain i was just wondering as you describe where the pain is and how bad it is and that you had eaten a rich meal if Gall stones had been ruled out,i had very similar symptoms and this turned out to be the cause.
To anyone with pain in chest ( like what one might imagine a heart attack would feel like) that can wrap around and also hurt in the back - and sometimes just be felt in the back especially under the shoulder blade- consider seeking treatment for a rib being slightly “out of place” - a good chiropractor or physical therapist can easily palpate this (some can see it just by looking at your back) and the relief it provides when they pop it back into place is absolute euphoria! I have lupus and not sure if these rib issues are associated with lupus or not, but the solution is so simple and after years and MRIs and ultrasounds and traditional doctors all failed to even mention this as a possibility for the pain - it was such a relief to find help from a simple manipulation by a chiropractor and now I have a physical therapist who can pop them back when needed. Hope this helps someone
PLEASE hang in there. I am sure things will come right in the end.
I was diagnosed with UCTD with lung involvement back in 2012. Today I have about 80% of my life back and boy oh boy it's good to be part of the world again!! So as I said just hang in there.
What works for me: 20mg MTX + 200mg HCQ. I am in the final stages of coming off steroids with 1 more drop to go before I get to zero. The steroids saved me initially with a 30mg dose of Pred knocking the lung attack on the head. So today I have mild lung damage and through lots and lots of swimming my lung function is back to normal.
Sending you a huge hug and saying sorry you are part of this club - see the glass half full and you will get through it.
Oh crazy cat lady I’m so sorry for you and I absolutely empathise. I too live with pain constantly and also hear ‘ thats odd’ from doctors when I try to describe the type of pain and it’s whereabouts.
Inflammation is always going cause pressure on surrounding organs and skeletal structures & typically doesn’t show up on scans or MRI.
I wish I could offer advice. I can only send 🧚🏼♀️🧚🏼♀️🧚🏼♀️ gentle hugs from afar.
You wrote: "I have been on long-term sick for 18 months now because I am constantly in flare. What I am not coping with is an excruciating pain that starts in the middle of my back (bottom of the ribs left side) and wraps around my left side to the front and into my lower abdomen/ groin. The pain is there all the time but it gets worse in the evening/night and I get intense stabbing pains too."
I have got the exact same pains on the same location for almost a year now. I am also exhausted to hell. My life consists of working fulltime. My husband works fulltime too and does all the household en cooking.
I only get Plaquenil from my rheumy for the diagnosis lupus like disease with early scleroderma/polymyositis overlap. I feel very undertreated and rather die after a few years from now than bear all the horrors this disease (and probably SFN) has for me.
What medicine did you get from your doctor to help you with these agonizing back/rib pains?
Hi Patricia - I am prescribed morphine to cope with the pain in my back/left side/abdomen. I take Zomorph and Oromorph.
My Rheumy has just switched me from hydroxychloroquine to Methotrexate but I haven’t seen any difference as yet. I’m hoping that time will change that.....
My GP is referred me to a pain clinic this week. I understand that this is to help with the psychological aspects of pain management.
It is soooo hard to keep going some days. I completely understand the hell you are going through. I am ‘lucky’ because I have been able to have a long break from my career. I have been off sick for over a year now. I could not cope with work and the pain right now. I’m so sorry that you don’t have the same luxury. Perhaps you could reduce your hours at work to take some of the pressure off?
Please don’t give in to your disease. If you are feeling depressed I urge you to speak to your GP about this. I take antidepressants on top of everything else.....I have also spoken to The Samaritans in my darkest hour and they were wonderful.
I have found that writing about my lupus really helps me gather my thoughts and gain perspective on my condition. You can find my blog at icebeaver.co.uk - perhaps you could try something similar???
Dear Crazy Cat Woman, thank you for your kind mail. I hope truly your pain becomes more tolerable.
I will start a rehabilitation trajectorty for arthritis patients in 2020. I hope they will give me guidelines how to live with my failing body and lacking energy. My intake with the doctor,
occupational therapist and physiotherapist were all very hopeful.
As you suggest I will need to work less. That is hard in my line of job. I can work less hours but the work will keep piling up further.
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Test Results and SUPER confused
Hi there, I'm new here and confused 🙄
Confused???
Lupus coagulant? Prednisolone? Confused and let down?
