feeling absolutely awful - and really!! - LUPUS UK

LUPUS UK

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feeling absolutely awful - and really!!

anbuma profile image
18 Replies

all done to day is walk my dogs (and take Annie to vets)and then so weak from doing that -got bus home and straight back to bed.in pm -came back from vets with meds for my Annie.had to laugh when it said "may causes drowsiness.do not operate machinery or drive.avoid alcohol. is there something I dont know?

still feeling bad tonight,pelvic pain,abdo swelling etc and neck pain.going to bed early -cannot do anything.

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anbuma profile image
anbuma
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18 Replies
Natura profile image
Natura

Hope you feel better tomorrow anbuma... I go to bed too when I feel bloated and don't have any solutions. Usually clears up by morning whatever the cause....

anbuma profile image
anbuma in reply to Natura

i have never felt " bloated" but it is constant pressure on my stomach and sore and rock hard increasing and spreading all the time.

anbuma profile image
anbuma

thanks Natura.but woke up the same if not worse this morning.same pelvic pain and neck tightness/swelling -and facial swelling,also pressure on bladder?not normal flow and took ages.

ny209769b profile image
ny209769b

sounds the same as me really felt the need to wee the takes ages for the brain to let the bladder go I'm in bed too was looking forward to the market today as on holiday in Spain but no done to much xxx

cuttysark profile image
cuttysark

Sorry you are still feeling bad.I have similar bouts and have been so rotten recently due to the hot humid weather I think. I am drinking plenty but when I go it takes forever and only an eggcup full at a time.After a day or so of this I get a Kidney infection.I am also bloated badly and my face really fat in the morning.

I am on prednisalone but it doesn't,normally cause me urine retention or bloating.I only get the bloating so badly in the warm weather.

It is a shame as I love summer and living in Scotland we have so many grey days and rain but now want to migrate to Iceland!!

I usually improve after a course of antibiotics, maybe check with your doctor if you have an infection going on.Those urinary infections also make me feel very sick and tired, just ghastly in fact.

Hope your dog picks up soon- thought the prescription note was great! Xx

anbuma profile image
anbuma in reply to cuttysark

where in Scotland are you.my dog has the allergy every year which affects her ears her neck and her paws.this year she has been biting consistently at her paws they are red raw so now she has a shampoo to apply whenever shes been out and then rinse off and the meds twice a day.i am really concerned about my pelvic pain .just persistent today -normally eases /goes away when I lie down but not this time-cant sleep and neither dog has eaten today and they have slept all morning -something thye don't do unless its raining.

cuttysark profile image
cuttysark

Sorry to hear an out your dog's allergy, must be so uncomfortable. They will both know you are not well yourself.My old collie died in October at fourteen, she always knew when I was ill and wouldn,t leave my side.We now have a collie pup of fifteen weeks, she is really cute and I try to take her out every day but like you I am so tired.

I am very lucky though and have my husband here and plenty family nearby to help take her out.

I live in Ayr and so being near the beach is great for dog walking.

I am concerned about your persistent pelvic pain.I would keep making emergency appointments at the GP so they will refer you to a specialist ASAP.

Alternatively there is A &E but I totally understand how upsetting it is for you to have to leave the dogs for ages and worrying about them when you are there.

I have Sjogrens Disease possibly overlapping with Lupus but am seronegative but have a good rheumatologist that I ended up having to see privately, I found NHS didn't want to help if yo u were seronegative. I also have kidney, pancreas and bile duct problems from the Sjogrens disease. I have been on the steroids for two years now and they have given me some life back but I hate having to take them.

It is a juggling act to keep going and it will be hard for you being alone with the dogs and looking after your home but I feel this persistent pain needs looked at and just keep pestering those GP,s till they help yo u.

Hope you get help soon. Xx

anbuma profile image
anbuma in reply to cuttysark

hi the vet prescribed shampoo for her which I have to apply twice daily after her walks.managed it so far onher front paws but like with any treatment -flea etc she runs as soon as I pick up the bottle.so apply it by putting some on a wet flannel and then supposed to dunk her paws in water.easier said than done.i live near a beach too -about 20 minutes walk away-and it s one reason I moved to where I live-Berwick upon tweed.nearest A&E is 60 miles away and in Scottish borders tho not sure they accept people from England now-(due to Scotland becoming independent?)i ahev all the symptoms of lupus /sjogrens but no one will recognise them.who knows why my stomach is swollen -all i get is " i caNt feel anything" i knew of sero negative arthritis but not seronegative lupus.if I could afford to see a private rheumy I would meanwhile im trying t contact his secretary to get an appointment as my gp wont refer me but cnat find contact details.have contacted my mp to complain and asked forhelp to get referrals to dermatologist and rheumatologist.my raised ca125,unexpained swollen stomach-assumption by gp its IBS-,feeling full from pressure on stomach and the persistent pelvic pain all present as symptoms of OC yet they say its not even tho CA125 above normal.i ahvent been given any other diagnosis fro these symptoms which have been worse since my gallbladder op last august.gp wont do ca125 or scans again

adrian_holland profile image
adrian_holland

I have the opposite problem atm, I seem to have a bladder the size of a walnut and the ability once I have the urge, to wait all of about 3 seconds! I know, I am a man and therefore I am weak!

cuttysark profile image
cuttysark

Hope you can get a referral to the private Rheumatologist.A private one off consultation isn,t too expensive but all my treatment is on NHS. Good thing was my GP was happy to refer me. It is shocking your practice are not keen to refer , you are right to contactI your MP about it. I saw private guy, he then referred me to his NHS clinic at his hospital as a GP would, and I then got my treatment there. He writes regularity to my GP to keep him up to date.

It is my Sjogrens disease that is seronegative but I think you can get seronegative Lupus but it is rare.I think I read about people with it attending Dr Cruz at London Bridge Hospital for Lupus in London and it was the first time they had their disease recognised. That is a private hospital for Lupus but some of the same consultants work NHS at London St Thomas hospital too. Would be great of you could get down there to see them, they are the experts with difficult diagnoses.

Hope you have a better day today and that the dog improves too. Xx

cuttysark profile image
cuttysark

With the worries about OC have they never even referred you to a Gynechologist? I would insist to them your pelvic pain needs attended to immediately, even although previous scans have been clear.My mother had an ovarian cyst which caused her very similar symptoms to you .It was not cancerous but caused her awful pain, it was also worsened by a prolapse problem.

anbuma profile image
anbuma

hi I have seen a gynae but they say it isn't.last time was at A&E in april .my gp has said he will talk to him btu only when he is at the surgery,proves he is not taking me seriously or would arrange for me to see him urgently.it is that OC is difficult to diagnose and is mistaken for a bowel condition(IBS)as said on national TV by two TV doctors.have put this to my gp (and gynae)several times but they dismiss it even tho they both assume its IBS when I have told them over and over I don't have bowel probs and have never complained to gp of any.so didn't want to take my dogs out this morning but they refused to just go in the garden so had to give in and took them for a short walk.I wonder if mine is a prolapse ,the other gp I saw said something about pressure on pelvic nerves???I wonder if they will still do the endoscopy because I have either re thyroid problem or goitres-my neck is tight and swollen with difficulty swallowing.have been back and forth to gp for at least a year-at least twice a month-with pelvic pain and neck tightness etc..they haven't considered anything else whatsoever.

anbuma profile image
anbuma

think they may make her sleepy as she slept a lot more yesterday but I think that it is more out of concern for me

cuttysark profile image
cuttysark

I understand you r concerns for OC but how long have you had the pain? OC is usually a pretty rapid form of cancer.Two folk I know had it and were gone each of them in three months only.The doctors thought it was Urinary tract infection but both of them were referred to hospital immediately and it was already too advanced but the symptoms had only just begun.

I hope that might reassure you, there is nothing worse than having the horrible worry of OC at the back of your mind.

Sounds like it might be a prolapse or even adhesions pulling on the pelvic nerves. I have had endometriosis all my life since late teens and it causes horrendous unremitting pelvic pain at times, I was given morphine to take for when it is bad.However I was sent to the pain clinic at my local hospital and they gave me a steroid injection into the nerve in the pelvis and it made a massive improvement and have not needed the morphine any more.

Have you a pain clinic at your local hospital? Maybe see if the GP could send you if they cannot find any other reason for the pelvic pain.

Hope you feel a wee bit better soon. Xx

anbuma profile image
anbuma

Hi cuttysark.i know everyone says it s probably not OC btu have the symptoms and drs havent given me any other reason for them.all I get is scans etc are normal and regarding my stomach and neck-they say "I can't feel anything".well of course they wont -only I can feel my pain and soreness etc.they have to take my word and that is what the problem is no one is listening to me or takign me seriously despite my stomach looking like im full term pregnancy and more.they cant/wont accept that my weight gain of over 2 stone(and increasing) is all abdominal.I have had pelvic pain for at least a year,a cough for two years and lupus symptoms since 2011.have read of people taking few years to get diagnosed and know of someone who was told she had a bowel problem when all along it was OC and they told her she had two years to live and she passed away after a few months.i told my gp things had got worse after havign gallbladder removed -fell on deaf ears.just had lunch but only ate three mouthfuls -full up and most agonizing pain in abdomen -pressure on stomach .the last 2.5 years have been a constant battle with my gp to get a diagnosis and had no support from him when ENT and rheumatologist failed to give me a diagnosis.will post a pic of my stomach and neck if I can so you can see how swollen they are.I only wish pain could be seen !

cuttysark profile image
cuttysark

Really sorry you are having such a rotten time, some autoimmune problems do take many years to get a diagnosis. All you can do is keep trying to get to another Gynae and Rheumatologist .

Hope the dogs can cheer you up, my dogs have been my lifeline through the years .They really look after us and do get upset if they feel we are unwell.

I struggle too to take the dog out walks but in the end keeping getting out and about is probably good for us even though it is so hard to keep going. I got really unfit and breathless after my old dog died in October but now we have had the new puppy for seven weeks now I am feeling a bit stronger gradually.I think the extra exercise is good in the long term.

Hope it is sunny inBerwick on Tweed, we have a glorious sunny day here in Ayr today.

All the best. Xx

anbuma profile image
anbuma in reply to cuttysark

sorry to hear you lost your dog.i know how heartbreaking that is,i lost my Max(pictured)to cancer xmas 2006 and it was the worst thing ever to have to do -having him put to sleep cos I couldn't afford chemo for him.i had to keep going for Buster who missed his companion terribly.i got Annie a year later as 4 mth old pup

anbuma profile image
anbuma

hi there .sunny but cool breeze .I have written to my MP with a complaint about my gp-and refusal to refer me on.had a letter back which said he would take it up with NHS England.sent copies to my gp and the practice manager in hope it might get results.gp was quite angry and have an appointment with him on 7th.he said write down 3 things which most bother me.mm -could list many more.wrote back to MP and asked him fro help with getting referrals to ent rheumy and gynae.my dogs are my life and they have been "not right"for about a year cos of their concern for me.my Annie is by my side 24/7 and Buster needs me to comfort him .I am so concerned its something serious and I wont be there for them.I dread the thought of them having to go back to kennels if anything happened to me-especially Buster as that would be too traumatic for him. I remember the rheumatologist telling me I need to exercise more -after telling him i walk my dogs twice a day and telling me I needed to diet after telling him I barely ate much just breakfast and a small meal.no cakes biscuits snacks or puddings fro about 4 years and the only way fro me to lose weight is fro drs to do somethign about the solid mass taht is my stomach and that was 2-3 years ago.still the same now.

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