Possibly Lupus : Hi Everyone, I am new to this... - LUPUS UK

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Possibly Lupus

Running30 profile image
Running30

Hi Everyone,

I am new to this forum and looking for some advice. Since November last year I have been suffering from a range of different symptoms.

I have 3 enlarged lymph nodes in my neck which i have been told are reactive, painful hands, legs and wrists. Inflamed Sinuses and excess pghlem, Cold Intolerance (I have always been a warm person),confusion were I feel as if i cannot concentrate properly.

I have Low folic acid and recently been diagnosed with Raynauds. My doctor is looking to refer me to a Rheumatologist. My ANA test was negative but my doctor has mentioned that they suspect Lupus but needs investigating.

Has anyone experienced similar symptoms to myself? If so is there anything I can do to relive them.

Also I have been prescribed Nifeidene for Raynaud's has anyone any experience with this medication side effects etc?

Sorry for the long post

Thank you in advance

41 Replies

Hi.we cant say as it is far too complicated.many AI illnesses overlap and you could have more than 1.cold intolerance and confusion could be thyroid low folate could be b12 deficiency anaemia. Some rheumatologists wont see you without a positive ANA and DS-DNA blood tests.keep a symptoms diary and pics of any rashes or swelling.there is an 11 point criteria for lupus you may find helpful.......you need to be able to identify with a minimum of 4 x

Thank you very much for your reply I will start to keep a diary of my symptoms really appreciate your advice

It may be hard to understand why we cant say whether its lupus or not as we suffer from it but it takes on average 6 years to get a diagnosis because its so complex..... for me it took 5 years . You've just got to keep going until you the answers x

amc282 profile image
amc282 in reply to Running30

It took 5 years for diagnosis for me as well. I ended up with a LSSc diagnosis. But, I think there are many other overlaps in my condition as well. Sjögrens, lupus, etc. I have experienced many if the things you mention. Good luck and keep that diary. Don’t let them make you feel crazy!

Running30 profile image
Running30 in reply to amc282

That’s exactly how I feel contacting the doctors like they think I’ve got to many symptoms I’ll definitely keep the diary thank you xxx

Hi Running30 I'm really sorry to hear that you are having a rough time. I have sle lupus and suffered really badly with inflamed sinuses which constantly needed antibiotics, my gp recommended trying sterimar breath easy nasal spray. I tried it and I use it 4 times a day and it's really helped me. I haven't had a sinus attack since I've been using it. My gp has put it on my repeat prescriptions. It might be worth a try. Lots of hugs🤗🤗

Running30 profile image
Running30 in reply to JCZW

Thank you so much i will give this a try! your advice is really helpful take care xxx

CecilyParsley profile image
CecilyParsley in reply to JCZW

Sorry to butt in here but I am feeling at my wits end with my nose/ sinuses . I have had a post nasal drip for months and it has become thicker and thicker. I am unable to get it up or swallow it down. Lots of very crusty hard bloody discharge. I took a corse of Amoxicillin that I had been given previously and whilst the colour changed the mucus continued. My voice is hoarse and my eyes are crusty. My Respiratory Specialist gave me Avamys nasal spray but there was no change so I rang the GP. She advised nasal ablation and prescribed Naseptin cream. It was gross but initially gave me some relief but now I am having nosebleeds. I had three yesterday but the worst ones are at night. I wake with blood filling my mouth and nose. I am at a loss now what to do. Any advice would be gratefully received. Xx

JCZW profile image
JCZW in reply to CecilyParsley

Morning CecilyParsley I was suffering really badly with infected sinuses and constantly having Amoxicillin and the strong Amoxicillin. I was really getting down with this so a locum doctor at my surgery asked me to try Sterimar breath easy nasal spray. Its completely natural and I use it 4 times a day to cleanse my nose. Since using it I haven't had any sinus infections. My nose does bleed and it constantly runs but no pain. For my eyes I use blephasol twice a day it really helps to keep any infection away. The doctor recommended Avamys nasal spray but my own gp told me to use flixonase nasal spray for my hay fever this I find very helpful for seasonal hayfever. I hope this helps I know how aweful sinuses are. Xx lots of hugs 🤗🤗🤗

CecilyParsley profile image
CecilyParsley in reply to JCZW

Thank you so much. I just have come off the phone to NHS 111 after my surgery refused to speak to me or give me any other advise than go to A&E 🤬My BP has shot up to 151/103 and my nose is bleeding regularly. The NHS nurse I spoke to was amazing. She listened, gave me advice about the nose bleeds and told me that having assessed me I need to be seen by a GP within 24 hours. I rang the surgery back and they said ring back at 8 am tomorrow and if you get worse go to A&E? All I wanted was to know whether I should continue with the nasal ablation. I am so thoroughly fed up with myself. I am sat here with the remnants of cellulitis, phlebitis, three torn tendons in my leg and now this issue too. It is never ending. Still we had a laugh because I to,d the nurse I had been doing anal ablation for a week 😳😧. Dear God. She said I don’t think that would help your nose. I said no but I would give anything a go at this point. Thank goodness we can laugh eh? Xxx

JCZW profile image
JCZW in reply to CecilyParsley

Oh CecilyParsley I'm so sorry that you are really having a rough time. I get so angry with the local gp surgeries if only they knew what we have go through. Please try and be positive I know it's hard. My husband constantly tells me to try and be positive but when people dont listen to you it's hard. I do hope so very much that you get some relief soon. I did have a laugh at the last bit of your post re anal ablation. Please keep me posted. Lots and lots of hugs 🤗🤗🤗🤗🤗🤗🤗🤗🤗

CecilyParsley profile image
CecilyParsley in reply to JCZW

Thank you I have had a good cry out of frustration now and I am feeling better about things. I will be up for 8 am tomorrow to demand to be seen. I do wonder whether the sores I had in my nose are further up and the nasal ablation has removed the scab needed to heal and of course the more I do it the more I bleed. The other possibility is that my sinuses have dried out which can make them crack and bleed. I have dry eyes, dry mouth, dry skin and my hair and nails have become brittle so that would not surprise me. Positive face on thank you so much for your kindness it is so much appreciated. Sometimes it is the little things that push you over that edge isn’t it? Xxx

JCZW profile image
JCZW in reply to CecilyParsley

I totally agree with you good luck for tomorrow. I will be thinking about you. I love this forum the people are so kind and have a wealth of knowledge regarding lupus and all the comes with it. Take care xxx

CecilyParsley profile image
CecilyParsley in reply to JCZW

Thank you so much. Es this forum is a life saver xxx

JCZW profile image
JCZW in reply to CecilyParsley

Morning CecilyParsley how are you this morning? Any luck with your gp? Xx

CecilyParsley profile image
CecilyParsley in reply to JCZW

Well let’s just say my husband is raving mad. I was patronised so much it is unbelievable. I am sat here with blood all over my nightie. I have been coughing up the blood from my throat but apparently not only do I not need to be seen but my “ agitation” is making it worse?? I don’t know how much worse it can be to be honest. Yesterday I had four nose bleeds, the last one lasted half an hour. Three times in the night I woke up choking on blood. There is blood on the bed, the floor, the bathroom mat even on the dog as I was patting him. I have hardly any voice my BP is now 165/109. I was told stop the nasal ablation ( which I did two days ago), stop using my nasal spray, which I did two days ago as it just triggered a bleed, to double my Amlodipine and stop my aspirin for the APS to encourage clotting despite telling her that there are clots the size of small buttons coming out. She said if it continues go to the new A&E which is 20 miles away and has on average a 7 hour waiting time, not to mention it has been the main Covid unit. No care whatsoever but I can call back if I get overly anxious??? I have bled significantly for five days now, I feel awful, my eyes are crusted and red, I have a rotten headache and no one cares. Sorry needed that rant. I am beaten 😞 Thank you as always for your kindness xxx

JCZW profile image
JCZW in reply to CecilyParsley

Oh CecilyParsley I'm so very sorry to hear that. We all care about you on this forum. Its disgusting how you are being treated , what makes me so angry is that they wouldn't let an animal suffer like that. It's the lack of knowledge that these so called professionals have of lupus and how it affects us. I do hope so much that you get some answer soon. 🙏🙏Take care and remember we care you are very important. Lots of hugs to you. 🤗🤗🤗🤗🤗❤❤

CecilyParsley profile image
CecilyParsley in reply to JCZW

Bless you, I am so sorry that I am so miserable and low. I hate to post when I get like this. I just have no fight left. My husband wants me to make a formal complaint but now is not the time to be looking for a new GP. I will try her “ methods” and if I bleed all weekend then I will just have to get back to them on Monday. The only person to have shown any interest is the nurse from 111. I have a respiratory appointment at my local hospital on Monday so I hope I bleed then so they can actually see it. My face is aching, my ears are popping yet I do not warrant a referral to ENT? Thanks for asking and for making me feel better. I am a fervent supporter of our NHS, the new Respiratory Consultant is amazing, my Orthopaedic Surgeon is amazing but the GP service is appalling and Rheumatology non existent. I have suffered six weeks of genital ulceration that made it difficult to pass urine because of the swelling. I did not call my GP because I know from experience there is nothing they can do. I really do not bother them unless I am desperate so I do not understand this “ agitated” and “ anxious” business. Xxx

JCZW profile image
JCZW in reply to CecilyParsley

Please dont give in. This forum is the only real place that we have got to rant and rave so please dont feel bad. I really feel for you. I know from my own experience with my gp that they dont understand lupus. My gp has openly said that its above his expertise. He is really good with general medicine. I do hope that you get some answers soon. Lots of love and hugs to you too 🤗🤗🤗🤗xxxx

amc282 profile image
amc282 in reply to CecilyParsley

I know how you feel. 😐

Hi Cecily, really sorry to hear what your going through and always here if you want a chat xxx

Thank you so much. I am just so frustrated and fed up of being patronised. I just do not understand the lack of care xxx

I can completely understand how you feel I am always battling with my doctors and it makes me so anxious and depressed when they aren’t understanding take care hopefully your appointment Monday will get you somewere xxx

I have had a bed day so feeling much more positive now. Only one bad nosebleed so far so hopefully the extra BP meds have helped. It is so upsetting when you are dismissed, patronised and not listened to isn’t it? I would not have called if I was not concerned. My husband was so angry he was in tears. I look grim, it is not just about the nosebleeds. Thank you for being so kind. Much appreciated. Today was a wobbly lip day xxx

I’ve had a wobbly lip day myself I get so upset for not being 100% myself and always feel like I’m letting my son down when I don’t feel good! When your dismissed by the doctors it makes you feel so bad I agree

but we can get through it! ☺️ Really Nice to speak to you today and I hope you feel better tomorrow xxx

Oh I am sorry. It must be so so hard to have children and not be able to do what you want to for them and with them. As someone who worked with children and families for years I can tell you that love, security and giving them attention and encouragement is what they need and I am sure you do all those things without thinking. I hope tomorrow is a better day for you too xxx

Thank you Cecily I do try my best he’s a happy little boy just me being silly in my own mind thinking to much just one of them days ☺️ Xxx

I get it but be reassured your best is probably so much more than many others who give their children things rather than time. Don’t be too hard on yourself xxx

svfarmer profile image
svfarmer in reply to Running30

Sending big hugs to you running30 🤗 am sorry your having a down day today, hope tomorrow will be better and I’m sure your son loves you to bits xx

We all care Cecily - so sorry that all what’s been going on with your knee now all the nosebleeds - you must be so cheesed off - sending hugs 🤗❤️

Thank you lovely. I am so blessed to be a part of this wonderful community. I just wonder what I have to do to make my doctors think I am worthy of care. I try not to bother them but it seems that I am patronised and not helped. I find it appalling that someone who has had persistently nosebleeds for five days because of advice given by a GP to do the nasal ablation, my BP is raised and all I asked for was for advice, not to be told my anxiety is aggravating it. I was calm throughout although I had to keep sipping water because my mouth was so dry and I was coughing the blood out of my throat. I asked Neil tell me honestly did I sound anxious and agitated? He said no you sounded unwell. I honestly do not know what I have to do to be taken seriously? It’s demoralising xxx

It’s outrageous Cecily the lack of care you have received , just wondering when I’ve phoned 111 in the past for UTI or other things 111 have made me an appointment at the hospital to go and see the doctor -and I’m always seen with in about an hour maybe worth phoning them again? Really hope you’ve had a better night ❤️

Cecily -

The general lack of care really sounds unbearable. I would have called or emailed the doctor by day two!

My one bit of advice in view of the battlefield mentality that seems to exist in areas of severe doctor shortage is to state the reason for your call upfront. I realized at one point that giving doctors a list of symptoms just forces them to assess them rapidly in their minds. I switched to questions. As an example, « Are you concerned that this nosebleed has lasted five days? ». Then he could answer, « No, unless .. » « « I read ice packs are helpful. Should I do that? ». He has to answer. He can’t tell you your anxiety is making it worse! Anxiety makes everything worse, including being told it does.

I hope that it is helpful. It is perfectly reasonable to call a doctor and tell them what is wrong. I am just adding that from experience I find I am more in control of getting the answers and help when I approach it this way.

Many hugs 🤗

K

Thanks Kay. I simply could not get past the receptionist the first time. Totally refused to get me someone just for advice. I now find myself back in the situation I was pre the nasal ablation ie scabs blocking my airway, mucus down my throat, ears popping, head pain but the bleeding had lessened at least. It was the same GP that I spoke to yesterday who advised the nasal ablation which precipitated the bleeding. I did not sound anxious or agitated at all but I had lost a lot of blood over five days when I am already anaemic. I dislike being patronised. I am not stupid or hysterical but since that Rheumatologists “ hysteria” diagnosis I am treated differently. When I feel stronger I will have to tackle it because it is inexcusable. I agree with your advice which is why I said nosebleeds and high BP. I am seeing the respiratory consultant on Monday so I will hope that they at least can help xxx

Very sorry to hear this but your blood pressure is WORRYINGLY HIGH. BP at 165/109 is at dangerously high levels? Monitor yourself at least three times a day and take an average!

Although systolic pressure is variable going up and down frequently according to stress levels the diastolic at 109 Hg mercury is way too high 😩.

Normal adult BP is around 130/<80? Not surprised you’re getting nose bleeds.

Why has no medic or nurse spotted this???

medicinenet.com/blood_press...

Get yourself down to A&E or the emergency room quickly PLEASE!!!

Your BP needs to be controlled/treated/investigated….please do it ASAP.

🥰😍

Thank you they know because I have told them. I am already on 5 mg Amlodipine. Honestly I am already anaemic and the amount of blood I have lost this past five days really has not helped. The GP today doubled the Amlodipine and stopped the aspirin. It seems to have reduced the amount of blood loss and it is clotting more. My BP remains the same but I am hoping that tomorrow it will have gone down. The only care I have received was from the 111 nurse who insisted that I should be seen today however the GP refused despite me informing her what the nurse said and that my BP was so high. The new hospital is over run with Covid patients so waiting times are between 5-7 hours. If I am no better tomorrow I will have to go and get checked over. The fact that no one has seen me is a disgrace. I manage my condition and rarely ask for help but this is the second time this year they have let me down. The first was when they refused to prescribe inhalers and nebules for my asthma and just stuffed me full of steroids for months until I needed a blue lights ambulance. My new Respiratory Specialist said they really have not got a clue. I appreciate you advice. Thank you xx

BonnyB profile image
BonnyB in reply to CecilyParsley

Oh thats cracked me up 😂you are funny. On a serious note though, I do hope you get sorted my lovely x

CecilyParsley profile image
CecilyParsley in reply to BonnyB

Thank you so much BonnyB xxx

Hi there and welcome. A lot of us here have had differing diagnoses, delay in diagnoses and understand the frustration and anxiety surrounding that. I am so very sorry that you feel so unwell. Lupus and any AI diagnosis takes quite a long time. A Rheumatologist will do various tests to ascertain the cause of your health problems. Many AI issues overlap so it is quite complex. As others have said keep a symptom diary and take photos of any rashes, swellings etc. This is a fabulous forum and you will find lots of support here. Good luck xx

Running30 -

It does seem like you have are showing symptoms of active inflammation. Even though the ANA was negative, your doctor may have seen other indications of autoimmune disease on blood tests. You could have anemia or low complement or elevated ESR.

I hope you get a diagnosis soon.

k

Running30 profile image
Running30 in reply to KayHimm

Hi KimHimm, thank you so much for the reply really appreciate it, I hope I get somewhere soon the symptoms do scare me sometimes and it’s so hard to find out what’s wrong with me x

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