I've been in bed for a few days, I literally have no energy & feel wiped out.
I spoke to my GP today about my reoccurring blood blisters in my mouth & oral ulcers & also a new lip blister that has popped & left a really raw patch of flesh.
I feel like I have the flu, all my joint ache deeply to the bone, my skin hurts ?! It's strange but true, I'm that achy my clothes brush my skin & simply stings. My throat is red raw & sore, wheezing cough! No appetite, just feel bloody horrible.
I'm wrapped warm in bed but my hands & feet are cold as ice & blue.
I haven't been anywhere to get a virus as I've been bed bound. Apart from My Gastroscopy, which could of caused an infection as I haven't felt well since.I don't think I can take much more.
My doctor has prescribed some throat drops ????
It's been a week & im
Not better & she just said to stay hydrated & give it some time,
I've never suffered with this many ulcers & ive never had blisters in my mouth. Or on my lips.
But no one seems to be taking me seriously.
My health is a burden! & I can't & don't want to carry the weight of it anymore.
Just getting to the toilet & back to bed is a mission but she feels like it's nothing to be concerned about..,,
Will someone please Shoot me!
Written by
LauraMk30
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So sorry your suffering so much. Your very depleted because of not being able to eat properly so your extremely run down hence the ulcers. I do find Difflam oral rinse is good for ulcers inside the mouth. It's an anti inflammatory so numbs the pain. You can buy it or have it on prescription as its very expensive!. Good luck for your biopsy results this week. You must be helped somehow. X
You do sound very unwell, and I agree with misty that lack of appetite can leave you very run down. I know exactly what you mean about the pain feeling right down to your bones. Sorry, I can't help much with the mouth and throat problems,
Hey Lupiknits, I love how my phone already knows your name as I just tapped on the first few letters & there u are
I'm doing my best to eat, I know if I don't I'll die. So I'm introducing it slowly but surely. I'm having sips of shakes as solids are quite overwhelming. Whatever I eat mash with I get full after 2 bites. I do feel ravished at times & most of the time I'm not hungry & I know it will hurt after much I have to try & push past the fear to get something in me as I'm getting weaker by the min.
You helped by messaging it's the little things that have a big impact xx so thank you
Oh, the eating problem! As you know, I've been through the same thing but have got to the point that I seem to be maintaining, albeit well below a healthy weight. With the sore mouth, it's much more difficult. One thing that works a bit for me is something my brother noticed ( we're a family that runs to fat unless careful). He said he could overeat all day if he had something sweet followed by something salty/savoury, followed by something sweet. It does help a bit for me, though I can't manage large portions. Maybe try it when your mouth feels better?
Edited to add: the sweet/savoury trick can work with just liquids.
I do feel bad for writing negative posts, I hope some good news is on the horizon.
Thank you for being so understanding, whatever is going on inside my body It's very debilitating. I'm looking forward to seeing the consultant on the 28th sept hopefully some results & a plan of action will be put in place. As I'm
Not getting any support from my GP's, this guy said he would do everything in his power to help me & try & give me the Answers I so desperately need.
I'll try the mouth wash misty, I just crave for some relief. How are you feeling ? And how is life treating you ? Xx
You should be in hospital and shouldn't have been allowed to get this bad!. I just hope you make the 28 th and this Gastro can help you like he said he wanted too!. I just don't understand your gp's so when you can you need to change surgeries!. I've just had the flu jab and ache all over thanks so much for asking. You TAKE CARE X
I know 😞 I should, I'm striving for the 28th, its a glimmer of hope for me. I'll be changing surgeries next week the one I wanted to go to his full & not expecting new patients. 😣 so I'm having a good look around.
Do you think it would be wise for me to have the flu jab ? I've been told that those with a bad immune system can get really ill from it ?
I hope the aching passes soon for you misty, big hug x
Thank you Laura for your good wishes. I'm glad your changing surgeries but sorry you couldn't go to the one you want. Shows how popular they are!. Can you go on a waiting list for them as they get vacancies all the time?.
I think you need to seek advice re the flu jab. Are you on any medication for lupus?. Some of those put you in the at risk group so a flu jab is recommended. Have you seen the criteria for one?. Big hug to you too. Just hope you improve soon. X💐💚😊
Sorry to hear that you are feeling so unwell and down with it all. Sometimes it just totally overwhelms you doesn't it.
I am on hydroxy, MMF and mepacrine - that trio of drugs since 5th June this year. Since then I have had 2 styes on my eyes - which I've never had before and instead of cold sores which I have been prone to all my life, I get these blisters pop up, around my nose and mouth - but none of the tingling warning that they are coming, they just pop up. Esecpially when tired and run down. Friday blisters popped up on my lip and nose. The nose ones went within 24 hours??? but the lip one scabbed over. Still there now. It wasn't as big at the lip one I had in April when run down, that was the size of a 20p piece and scarred my lip - it was deep. Then I've had a dry dry cough since mid July and am waiting for my chest xray results. Bizarrely, apart from that I am feeling relatively well, think my meds are working at keeping the lupus under control and haven't had a major flare since Feb/March/April. That's the longest break from flares I've had. I think my niggling issues are caused by my meds and them reducing my immune system. When I was diagnosed I'd had a sore throat for months on end. The sorest I've ever known it. Literally like I'd swallowed glass and it had shredded it inside. I got sent for a ENT appt to swallow the camera and see what was going on. He couldn't see anything. How stupid did I feel. But I knew I wasn't imagining it! These symptoms on their own, we can live with, but when they all happen together, it defeats you.
Do you think you are flaring? Or are you still trying to get the lupus under control in the first place? Obviously with an impaired immune system, if we pick up a bug or cold etc, it hits us much harder and lasts for a lot longer.
Remind me what meds you are on? Can you go back to see another GP and ask if there is anythign else you could do/take? Do you have a Rheumatology Nurse or Rheumatology Helpline at your hospital that you could phone for some advice?
Don't despair. I'm only nearly 4 years down the road from diagnosis, but I do know that you will have good days and bad. My lupus is said to be mild but I know that still has an impact on my life every single day. And I know that there are sufferers a lot worse off than me out there.
You need to listen to your body, as you know it best. Stay in bed. Get lots of sleep. Do as little as possible for the time being. Don't feel guilty for taking care of yourself. It's hard to accept. It's frustrating. But we do understand and are happy to reply and help in any way we can.
Ouch styes are 👁are rather uncomfortable 😣 I've only ever had one. So I can relate a little. See I've never had a cold sore, ouch the nose blisters sound painful. Thankfully I haven't got them! But sorry to hear that you do. I don't get a tingling either they just appear. Sounds like you've been in the wars too Wendy! It's really not nice to know there's so many of us suffering with all this, I can relate to the lip one. Mine has scabbed over, but each time I move my lips it's slits open so it bleeds a lot. I always have a tissue handy. As it is embarrassing at times.
Please let me know your chest x ray results keep me posted
Apart from tiny multiple granulomas on my lungs no one has ruled out the underlying cause yet. I've had a CT contrast scan that revealed them & im due to have another to check if they've multiplied again.
Waiting is a nightmare !
I'm glad to hear due to your meds that your feeling a little bit better & not had a flare.
I can definitely relate to the shard of glass feeling in your throat. 😞 swallowing for me has been somewhat difficult with my excessive reflux but now with a raw throat it's even harder. Makes everything so much worse. Your so right there Wendy, when it all happens at once it definitely has defeated me emotionally as well as physically.
So meds... IM NOT ON ANY.
I was misdiagnosed as vasculitis then a month ago I was told I had Lupus & was due to start Hydroxy but then my Rheumatologist appointment was cancelled & I had to wait for my GP to catch up with 2 Different Rheumatologists as I've seen a few too many in my hometown & Birmingham. I'm still waiting to see DR Smith but it's been months since I was discharged from Queen Elizabeth Birmingham Hospital (Vasculitis Centre) the specialist said I had SLE & needed to start Hydroxy straight away. My GP surgery have dropped me & im now behind everyone else & waiting to be seen at my hospital. It's been a good 14 years struggle with an exhaustive list of problems and I thought a few months I was on the road to recovery but I'm just back to the drawing board.
I spoke to my GP yesterday & I tried to explain that I'm feeling really unwell & she never seems to care, & lacks the ability to listen. No empathy or mercy.
I expressed my concern for my own health & she cut me off by interrupting and stated I have to wait on the NHS list like everyone else, but as I've been private to see a gastroenterologist a few weeks back & had a Gastroscopy under General Anaesthetic waited on the NHS list but it wouldn't of been for March 18. It's too long & I'm barely able to get out of bed so months down the line i prob wouldn't of made it there alive.
Sounds dramatic but I'm malnutrition not able to eat properly due to digestion issues. So my father & partner paid for me to go private.
She was annoyed that I preferred to go private than wait but I've waited 14 years for her help & she's never gave me any. When I'm this sick I can't wait.
So I'm thinking of finding a private Rheumatologist.
Quicker the better.
I'm waiting for stomach Biopsy results which I will get on the 28th, as well as investigations for IBD, I've had so many bloods taken that indicates an emergency investigation but no one seems to want to take on a complex case such as myself.
I'm glad to also hear your 4 years down the line from diagnosis I'm so glad you finally got the answers you so rightly deserve.
I know a lot of doctors don't have the time for people like me, but I'm not asking for forever just a few minutes of there time too look me over. I know my body & im really struggling to help it get better because I have no idea what is wrong. There is so much happening at once that I don't know how or where to start. It's out of my control. 😖
Thank you after reading the last bit of your message it was really nice to read that it's ok to rest. That's all I can do now, I live on my own & my partner stays throughout the week when he's on early shifts & my son comes at weekends so during the day I'm alone. & this forum helps me to keep going. I know this isn't a good way of thinking but it does cross my mind at times
Because I'm alone most days & because I'm so weak & drained I worry sometimes if I fall into a deep sleep which I do most days that I won't wake up. No one visits I do get a lot of calls to check up on me but my GPs don't care neither does my General hospital. So if I did pass in my sleep those people how have chosen not to help me wouldn't even batter an eye lid. My family on the other hand especially my dad has been a wonderful statue of strength for me. He does try & keep me on my feet which is a good thing as I never let things beat me. But lately I'm in bed most days & all I want to do is sleep, so I know I have to stop thinking irrationally but when you are as poorly as you feel & there seems to be no hope in sight thoughts like that seem to scare but also comfort me because one day it will all be over & I won't have to suffer anymore.
We know how we feel it's just hard for others who are not unwell to understand.
But thank you Wendy your message means a lot. & I hope life is gentle on you from now on. You deserve a break a big one 💖
Bless you. You are really not well. Forgive me, my memory isn't good and I have a lot of family stuff going on right now, so memory and thinking straight are not my strengths. I remember now about your private appt that your Dad took you too etc. I'm sorry. Have you got a new GP who can prescribe the hydroxy at least, as reommended, until you get back to the hospital? Who's in charge of your lung issues? Could you contact them for advice? Apparently a Consultant to Consultant referral is quicker than GP ro Consultant. I wonder if the lung specialist's secretary might help you out with advice? I have to say, that going to London Bridge Lupus Centre was the only way I got the correct diagnosis and a good treatment plan. Local care is not good at all. Have you made enquiries with Lupus UK re NHS specialists in your area, the Lupus UK Centres of Execellence etc? Otherwise look at the London Bridge Lupus Centre web site. A few of us here have been there in desperation. People travel from all over the world to visit there. If you are going to consider paying privately, might as well make sure that it's the right specialist for you. And I know it sounds like a long way to travel, it's a 6 hour journey from here and 6 hours home, at the very least. But it gives you answers and peace of mind. Maybe your Dad could accompany you on the train, as it's less stressful? Have a think. Take look at the websites. But please do not give up. You have family and a partner who love you. And your son. They understand. Sorry, I've not helped much at all. But we are here. Wendy x
Don't worry Wendy, even i forget what goes on sometimes. It's hard to keep up. Sorry to hear about your family stuff, hope it's nothing to serious.
I haven't a new GP yet, being seeing a registrar doctor. My GP said she cannot prescribe Hydroxy!! But a Rheumatologist can. I said that's a bit strange as you are a doctor. "Apparently"
So I have to wait... no one is in charge of my lung issues, I was under the care of ACU ambulatory care unit/ DVT.
I was there a number of times due to blood clots & high blood pressure. & then I was referred somewhere else & never got to find out what I should do next. I might contact them again as the main doctor there was brilliant his name was Moses & he really cared! He wrote a letter to my GP alerting her of the seriousness of my deterioration of health. I wrote my first post on the vasculitis forum as they thought that's what I had. But I might just get in touch it can't cause any harm.
I've heard of London Bridge and how good it is. I'm thinking of going there, I have no glimmer of hope here really. As no one seems to know what I have wrong with me. I do fit most of the SLE symptoms but also a lot of APS as well. I've been waiting to see a cardiologist & it's been months so I checked in yesterday & she hasn't even sent the referral she forgot so it will prob be another 4 months. I know I need to take this in to my own hands again because if it wasn't for the private bloods in the beginning I would still be in the dark or on deaths door. I feel lucky to still be here.
Things are taking its toll now & I simply can't go on like it. It's ok for my doctor & her family, if her daughter was suffering she would move heaven & hell. She doesn't loose a wink of sleep at night worrying about me but I stay awake most nights wondering why she has a personal hate towards me. & every time I call her or see her she huffs & tuts before I even say anything. I do feel hated by her, & I know I'm not family or a friend I'm like crap on her shoe I'm just a number but I'm also a human being & I have feelings & she doesn't know how she makes me feel when I step out of her office or when I say goodbye over the phone, I've got to a point where I'm beginning to dislike myself & wish I wasn't here. I plead for help from her but she dismisses me every time, I'm a patient under her care & she rejects me, it's humiliating & she cannot even look me in the eye, she literally despises me for reasons unknown I'm fighting all the demons in my head as well as the army of disease that's literally destroying me & I would really really really like to wake up tomorrow knowing that I can turn to a doctor. I read stories on here of how ppl have a great team & a supportive specialist & doctors alike & I'm at rock bottom with no help but I'm not bitter I'm happy to hear that they are being cared for & supported & treated with a humane respect. There's hope for me... somewhere out there. I don't envy anyone I want the best but I've started to think of myself a tiny bit more, as I'm always putting others first and I would really like someone to help me too one day.
6 hours to & from is a LONG way but as you said it's worth it. I think it's about 3 in half hours for me. My dad goes in for a entire Hip replacement on the 28th sept. We're be in the same hospital @ the same time his op & im seeing my gastroenterologist for results. So he will be out of sorts for a fair few months.
My partner is very poorly too so I'm warn out trying to look after him & he's warn out looking after me & i know my dad will need some help so I'll have to help.... omg god give me strength !
I can barely care for myself so the least I can do after my partner & dad have done so much for me is to be there for them too.
Hopefully this appointment sept 28 comes with more tests so I can finally put a name to my suffering.
I know I have to keep going, as much as I would love to surrender & how close I am at waving the white flag I have to be here for my family my son & my partner, I'm the glue. I keep everything & everyone happy 😊 I'm needed which is a nice thing. I need me sometimes too the old me I miss that person. I'm kinda a shadow of who I used to be, but getting a diagnosis will give me the determination to be the best version of myself x I just want to feel human again x
Just a thought, but I saw Dr K privately in April this year. His treatment plan said Mepacrine. He didn't give me private prescripton for it - thnak goodness as it turns out the 50mg capsules are about £700. Anyway, if is an UNLICENSED drug in this country. Even so, when I went to see my GP to discuss my appt with Dr K in London and his diagnosis/treatment plan - she got me the mepacrine - we compromised on the 100mg tablets that I cut in half, but that's fine, they were cheaper. But she prescribed them. Not the Consultant directly. Do you get the comparison? She followed the Rheumy doctors treatment plan and gave me the meds recommended.
The hospital originally prescribed my MMF but the GP now has that on my repeat prescription from them too. So my hydroxy, MMF, mepacrine, steroids etc etc are all on my repeat prescription and their dispensary does it all for me.
So I really cannot see why your GP can't follow your rheumy's letter and prescribe them - if the rheumy says you need it. Dr Smith was it? Where's the copy of his letter? Get a copy of it and go back to your GP.
Actually scrap that, find a new GP. I think we've exchanged messages about your GP before - am I right? She sounds the worlds worst GP. YOU MUST FIND A NEW GP. One that cares. Either at the same surgery or change surgery. You cannot move your treatment forward with her. To give her the benefit of the doubt, it might be that she really has no idea what to do with you next, as all this is so specialised and beyond her knowledge, but that does not explain her horrendous attitude towards you. Complain about her, to the practice manager and move on. PLEASE.
My GP said to me earlier this year, you need a Nuerologist leading your care and a GP with a specialist interest in Nuerology in order to understand all of this! But that being said, she listens to me, understands and tries her very best to help me out. I really like her. She has no messing and is very straight faced but I like that about her. I am happy with her care. So even though I have had these battles with my local rheumy and been to a meeting with my MP and senior health officers from my local health board, she has agreed with me and backed me all the way.
You need a GP like that. And you need one ASAP. Don't waste any more of your precious time or life with this excuse of a GP.
I think we all feel like a shadow of our former selves with this illness. I am 43 and I don't work any more, I don't run or keep fit like I used to, I used to live life in the fast lane, every weekend would be booked up with social stuff etc. It's hard to accept. I am now a full time wife and mum. And I am loved and respected and valued and appreicated. I might wish I could do more, but their love keeps me going. So I udnerstand where you are coming from. We must just take comfort from life's simple pleasures. Family, friends, loving and being loved. In actual fact, whether oyu are ill or not, those are always the most important things in life.
I hope you can have a good weekend, whatever you are doing.
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vomiting now i just feel like giving up :(
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