Apologies for the lack of responses from me for a while but I have had the worse couple of weeks. It started off with my eldest splitting up with his longtime gf (14 years) and he is in a bad place and my heart is broken for him. Long gone are the days where mommies kisses make it better...then wham, pain that will not go with any painkillers. Been to A&E twice via ambulance and still no pain relief, no further along with what it is and I'm at the end of my tether. It started off in my right lower abdomen but I couldn't tell if it is/was my back or tummy. This was nearly 2 weeks ago. By last Saturday I couldn't t stand the pain and called 111 and they called the ambulance. Off to A&E (who were terrible!!) Was there for 5 hours before seen a Dr and had in all i'd been given iv paracetamol!! I ended up with the shakes as in so much pain. They couldn't get any blood because it was clotting in the tubes but after a bit they did finally!!..sent for a chest x-ray...i was then given Buscopan which sent my heart rate through the roof then was discharged with no medication because x-ray and bloods fine. That took 8 hours.
Got an emergency appt with GP Tuesday and gave me Tramadol...1 fast response paramedic and an ambulance crew later, back to A&E with suspected stroke - it was the tramadol...im now on Naproxen, omniprazole, my hcq and cocodamol (30/500) and ibuprofen gel but I might as well be eating Smarties. I'm waiting for an 'urgent' mri scan but nothing even takes the edge off. Heat makes it worse and I can't bear the cold. I'm really at the end of my chain and I'm so sorry for moaning but your advice means everything to me.
A very desperate Charliebear ☹
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Charliebear68
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Oh my goodness CharlieBear - it sounds like you're going through the wringer there. So sorry to hear about your boy but I'm sure he'll get there in due course. I'm sure it helps him to know his Mum is there rooting for him still, even if you can't just kiss it better now literally as such.
What about you though? What a nightmare - it really does seem to be luck whether you get good treatment when you turn up at A&E these days. Did they rule out appendix problems for you - or has yours already gone? Just masking the problem with cocodamol and tramadol is not an answer so I do hope you get a proper diagnosis very soon. Abdominal pain is hard to deal with as it's so hard to get into a comfy place with it. Are you back at home now or in the hospital waiting for a scan? Not sure what else to suggest really - I had appendix pain about a decade ago so I can sympathise but I'm not sure what else to suggest for you really. Hope some of the others on here can help.
Bless you - appendix went years ago also had a hysterectomy at 30 ☹ just putting one foot in front of the other! Thank you, just reading your lovely response helps.
So sorry to read of your nightmare health problems and not a lot of help from A&E. Do hope you get the MRI scan soon as you need to know what this pain could be. Abdominal pain can be a lot of things and needs investigating. Sending you healing health vibes . X
How did you get on phoning the surgery. Hope you also got more pain relief help. Feel very sorry as you've had to cope with a lot lately!. How is mil?. Take careX
Sorry Misty - missed this one...in a cocodamol fog...
Surgery useless so trying different approach. MIL is at home but is driving us potty. Not using stairlift, not wearing her panic button thingy, climbing to reach things. She cannot see the danger she's putting herself in and the stress on us! She's so independent on one hand and so needy on the other. We're between the devil and the deep blue sea.
So sorry mil being a nightmare. You can do without the stress!. Hope your plan b works and you find out when your scan is. I'm taking Cocodamol too as three weeks ago I broke my foot. Very annoying and been finding it difficult to walk in the big moon boot they give you!. Three weeks to go before its re- Xrayed to see if healed!. Fingers crossed for you. X
As misty14 suggested, some form of further investigation needs to be arranged to sort out your unrelenting, abdominal pain. Diverticulitis, it seems, can cause awful pain. Also, I see you had a hysterectomy. Sometimes adhesions can develop as a result, causing abdominal pain too. Just another consideration. 😐
Do hope you are sorted soon, and that broken heart of yours is healing a little every day.💝
Im in a right funk ☹ with any kind of autoimmune disease, you get used to pain but this is different. I need answers so I can fight back!! I must admit, I did think of adhesions but can they really be this painful? Silly question I know....
Not that I have much medical knowledge and perhaps this is not the cause of your unrelenting pain but something is for sure. This was one consideration, and for the most, people have no symptoms of adhesions even if they have them. That said, they can and do cause pain. Since you had a hysterectomy and appendectomy it was something that came to mind. Sorry, I certainly don't wish to cause any unnecessary worry as I believe, right now you have enough to deal with.😏
Until I became unwell with a multitude of symptoms, aches and pains were just that...now, I m not sure why, but everything seems magnified - tenfold! Just one example, the food I eat is somewhat limited but I find even after eating the same food one day and the same some other day, my digestive system suddenly, for no apparent reason, will go 'off the scale' in that, I can be ok one minute and doubled up with awful, excruciating pain, gurgling and rumblings in stomach and bowel area. 😬 My GP's explanation - IBS'".
I was told that many times before when experiencing a whole host of other non- specific symptoms and 'IBS' being a major one. Eventually it was discovered that it was caused by severe endometriomas that were growing on the bowel- my reason for having a total hysterectomy some 20 years ago. Now I suppose I try to find some reason behind every ache, pain and rash to justify why I feel so 'rough'
Hopefully with your numerous visits to A& E, and all fingers (and toes!) crossed, your GP will assist you in getting to the bottom (no pun intended) of what is actually causing you so much distress.
That's terrible, Charliebear. Have you any sense of what kind of pain it is - I mean, sometimes there's a special quality to pain that is characteristic, isn't there, and that can sometimes help you to work out how to treat it? For me, there is definitely a kind of colic pain that responds very well to peppermint oil capsules, but there's also a more achy pain that does better with a hot water bottle...Oh I am sure you will have tried to do this a million times so I'm not exactly helping. But hang on in there, Charliebear and imagine the triumphant post you can write when you pull through! Hugs etc x
Thank you - your post yesterday was so honest. We do our best to hide our illness to the world. Not for anyone else but for ourselves. You looked fit to burst with pride and that made me happy. If a picture could paint a thousand words? Not needed from your lovely picture - your face says it all. Sometimes the pain can just bugger off long enough so well done you!
Tbh I'm not sure if its tummy or back. I'm ok first thing in the morning before I move anything and then it builds from getting out of bed. Once I've moved that's it then, not to be crude but I can only just wipe my own bum! I make noises like a rutting stag, I'm extremely grumpy and if I could remove the bit that is causing this, i would do it with a spoon if necessary 😐 in an earlier post, I said it feels like appendictis but it's that plus bone rubbing against bone hence my uncertainty of tummy or back. I'm just at the end of my chain - my GP is useless, the pain relief just doesn't work and I don't know where else to turn.
I'm not the kind of person to get down, always the glass is half full kinda gal so this is a new and unwelcome experience but! Down but not out 🙄
Thank you for your kind words, Charliebear. I know that others- including yourself - struggle with stuff that is every bit as difficult as mine, and more. I'm also struggling to think of anything helpful to suggest. "Mindfulness" exercises and "being in the moment" is all very
well, but not much help when the moment you are in is chuffing agony! So on my worst days I just squat in my armchair and peer at something undemanding on the laptop - I've been bingewatching "Unbreakable Kimmy Schmidt" recently. It's pure distraction. Um...TENS machine? A bath or shower directed onto the affected area? Er....massage? (ironically, a friend of mine just posted something on FB about the importance of soothing touch - a friend who has not visited me once in all the time I have been ill!). Not much good, sorry, but if I think of anything, I will post again x
Thank you. If I had to explain the pain in a way that resembles any experience of pain like this it would be when I had appendictis. I'm not constipated nor do I have diarrhoea. I still cannot 100% hand on heart tell if it's tummy or back!
Thank you so much - just have you wonderful friends out there makes me feel better.
C xx
Oh no poor you CB - I really feel for you and empathise on every front! For what it's worth I've been there with son and similar breakup and he's now flourishing and back in U.K for a spell - having a ball. No regrets about the split at all in retrospect although at the time it felt like the end of the world for him - and therefore for me on his behalf.
It sounds to me like you're in a grand stress related flare up but who knows? I have avoided A&E this past weekend but have exactly the same response to Tramadol as you and all the others too so am currently unmedicated for pain. Tbh I'd rather suffer pain than drug induced illness - and they do say that a very high proportion of hospital admissions are drug intomerence related.
In my case I think almost all of my horrible GI problems from childhood are to do with poor motility. This did improve greatly when i lost a lot of weight, stopped eating gluten and dairy and started DMARDs for supposed RA. But Prednisolone gives me terrible gastritis and I did have severe nausea from Methotrexate even by injection. And this morning a GP confirmed that Mycophenolate could well be having a similar effect on me as codeine always has - i.e. poisonous to my sluggish motility - especially at the highest dose.
I really think for me constipation is an evil that has ruled my life for long periods - particularly during my childhood and over recent years. I keep hoping to be referred to gastro but have got nowhere with this yet so far - having had a satisfactory colonoscopy last year. All ultrasounds, from womb to CT and gallbladder (now gone) etc have always highlighted severe constipation. The thing is, because the pain is also in my back and I go to the toilet often and take Lactulose regularly i think I'm fine. My doctors and I don't always clock the constipation much further up the colonic passage - right at the top basically.
Presumably they've looked at your gallbladder if you still have one?
Otherwise I have no suggestions for you but much sympathy and empathy ? We are at least on this horrid abdominal journey together to some extent and are certainly twins over Tramadol! 👯 Xx
The tramadol twins! Sounds like a Victorian side show act 😁
Thank you - you always make me feel better! If you can't laugh then it's time to throw the towel in and just because I'm an awkward little bugger I won't!
My son is starting to cope, he's getting angry now which he really needed to do. Part of the healing process but if I could take it for him I would. Thank you and I'm glad your son is happy now. Time is a great healer it just goes sooo slowly when you're hurting.
I read your post from the other day and it sounds like you are taking the bull by the horns! You go Twitchy! I think it's brave, a bit mad and bloody marvellous!!! You will be so successful I just know it. I also read about how thoughtless and casually opinionated 'friends' can be. Even if one suffers from a similar condition we all have varying degrees of pain, flares, chronicness (not sure if that's a word!) If they could walk a mile in your shoes and then pass comment then it would be a different story.
Me? I'm having to go back to London to see Dr T. My 'urgent' MRI scan request hasn't even been sent by my surgery to the hospital yet...even when they do receive it, an appt can take up to 5 weeks. I'm really in no fit state to make this trip but I've no choice. I'm utterly exhausted but can't sleep. Every time I move...
I know you're going through it at the minute and I have no idea how you cope without pain relief. You're a tough cookie 😁
Your kind words mean so much as does your wicked sense of humour.
Thanks Charliebear - glad the anger has started to kick in as part of the healing process for your son. 🤞🏽 for him and for you that the bereavement period isn't too protracted.
Well I'm rudely awake now and could murder for a morphine shot! Not so brave at all really you see - just sadly drug intolerant.
Restarted the Mycophenolate last night and have woken now with all the usual leg pain plus this excruciating band of burning pain right about my flanks. Had a scary dream that my rheum phoned to say that x-rays (i haven't actually ever had!) of my knees say that I have no knees - hence the toothache pain?!).
So I've gulped down some Gaviscon and am 🤞🏽🤞🏽🤞🏽"Yeah pain - whose the boss here? Me or you?! " (all bravado). So much for tough cookie eh?!
Regarding Dr T and all the travel etc - what do the A&E people say when you're there - hopeless as they are re 5 hour waits etc? Surely they could and should give you an MRI or at least ultrasound while you're there or keep you until they can do so?
When i was admitted with similar sounding pain in 2015 they kept me in overnight and did various tests including an abdominal ultrasound (no MRI facility in that small hospital) each time. In fact they kept me in for a week each time on IV Gentamicin because of blood and protein in my pee and high CRP of 150 - but no real conclusions when I was finally discharged apart from some kind of "inflammatory process". But at lease they did try!
I'm well out of my depth with this but have taken a notion about my pain - which I wouldn't risk mooting to a GP yet. Apparently there is a form of mild autoimmune pancreatitis and I think I may have this. I know that Cuttysark here does and it can be associated with or part of Sjögren's, Sarcoidosis and other conditions.
I don't know if this would show up in our blood Amylase or not - it certainly doesn't mention the Amylase in the diagnosis section of NHS link below. But the pain I had with Azathioprine led me to 2 of the hospital stays I mention here and afterwards my GP and rheum both felt I'd had Aza induced pancreatitis.
The GP last week did say sometimes the Amylase is just mildly raised and they don't think much of it - but perhaps it is relevant to this autoimmune form of pancreatitis?
Just a thought but I will be researching it for myself as this Mycophenolate induced pain feels very familiar and similar to what I suffered with Azathioprine. But knowing my luck it's just the usual upper colonic constipation - so keep this idea just between ourselves for now eh?!
On a serious note it might be worth mentioning this possibility to your hospital doctors as they obviously haven't a clue?
Hello CB. So sorry to read your post, on both fronts. I hope your son is doing OK. 14 years is a long time to be with someone and he is going to have to heal, in his own way, bless him. You must feel useless, as a mum I mean, we always want to make everything OK for them, don't we and this time you can't. All you can do is be there for him, which I am sure you are in every way. As for you. What a mess. I was given tramodol after my hip operation and after taking it for 2 days, got rid of it. Absolutely terrible drug, for me anyway and it seems you. It made me feel hot, sweaty, shakey and as if I was on a ship in rough weather. I wouldn't touch it again. I hope you find the strength to keep fighting. Keep going to A&E and keep pestering your GP. If your GP doesn't listen, see another one. You must find out what this pain is, especially if nothing is touching it. Please keep us posted. Take care. Thinking of you. Wendy xx
I'm so sorry to hear about your pain and really hope all will get better very soon, by the sounds of it you have been to hell and back you poor man. I have also heard of the effects of Tramadol, and was prescribed it by a GP. After reading the directions that came with it and the side effects, I sought advice and was advised not to take it. thankfully I heeded their advice. Anyway Charliebear all the best to you and hope you get well soon.
Thank you for your heartfelt concern but thankfully, this was a year ago.
We got through it and we're all back on track! It is lovely to know that there are the wonderful friends on HU have your back 😊
I don't post much on here but read everyone's posts to keep an eye out. Hope that you're well and fighting like a good un!! However, just a heads up, I'm female 😊
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