Persistent throat problems

[smellie]

Hi everyone. I'm a new member so this is my first post. I,ve been diagnosed with undifferentiated connective tissue disease but on my notes i,ve noticed it always says lupus in brackets afterwards. When I asked about this I was told it wasn't full blown lupus yet but I had signs and symptoms of it. This has been going on for about 5 yrs now and i,m gradually needing more hydroxychlorine to get through my 4hrs as a nursery nurse a day. I haven't had my bloods done for over a year though so surely I could have full blown lupus by now? Im having a lot of trouble with constant coughs, ear ache on one side and recurring tonsilitis + quinsy but not sure if this s anything to do with the lupus/CTD. Has anyone e else got throat problems.? (Always seem to cough up lots of nasty yellow/green phlegm and not sure whether to see someone about it) I don't like to go to the docs just with tonsilitis but unsure f it could become a problem cos of the CTD. Any one got any advice please?

[Bebe76]

I'm not sure about CTD, but with SLE you can have low white blood counts, and this might make you more prone to infections. You might want to see your GP or rheumatologist to review your meds and blood results and get re-tested.

[smellie in reply to Bebe76]

Thank you bebe76. X

[misty14]

Hi Smellie

You need to see your GP if your coughing coloured phlegm. You could have a chest infection so it needs checking out. Take Care. X

[smellie in reply to misty14]

Thank you misty14. X

[goingaroundthetwist]

Hi Smellie,

I too have undifferientiated, which I have found out is mctd, (healunlocked can send you a leaflet about lupus and mctd) - as far as I have now researched and come to my own understandings, you do have lupus. I was told I have parts of sle, parts of sjogrens, raynaulds, antiphospolipod syndrome, erythro melalgia, myalgias, facial rash and initially had extreme swelling re: connective tissue (muscle, tendon, sinews), tinitus, migraines and other stuff. Apparently I am in the misnomer 'remission'. Also was told that my lupus mctd was "evolving", and for a long time worried about what it was evolving into. But no longer worry about that, as luckily and thankfully to the NHS, medications after a long period of time appear to have stopped things getting any worse and better than my worst. After deciding to stop taking the metoject weekly and weaning myself off prednisilone and have now managed to get past 2 months without a rituximab infusion, so things are much better. I am very lucky. The whole subject is very confusing and one day you may feel you have grasped it and the next day you think, "what?". I too have constant sore throats, these did stop whilst on the high medication, along with the constant pain in my side and kidneys, but the side effects of all the medication were making me miserable. I am now getting by with very mild hydroxychloroquine, but unfortunately have to still take 4 tramadol daily to get through. You will probably have bits of everything, so much so, that the specialist cannot determine the lines between the diseases, thus undifferentiated. A occupational therapist explained a lot of things to me which helped me immensely, and she said the same words "you don't have full blown", thank god, so grateful. However, that does not mean it is all rosie for you, and having all the pain and discomfort and tiredness, will not be easy for you in the very energetic role that you are in. My thoughts and good wishes go out to you. I no longer think about what I have or haven't got, cos no-one understands it anyway when you tell them! - For me it has been a journey of discovery, shall we say, to getting back to somewhere in my life that I can recognise and feel resembles a little bit of how things used to be. And all the good advice from everyone about pacing, eating well balanced foods, resting and knowing your limits - in an ideal world this is easy, but it is challenging attempting this in the real word. i suppose, I am trying to say it is about finding balance for YOU. However, sometimes I do err on the side of trying to be a normal functioning person for a day or so rather than not, and tell myself that these diseases are not going to take over my life. I wouldn't advise you to tell yourself that, as it is patronising, this is just something that has worked motivationally for me. I have a terrible choking cough, which I do believe is the sjogrens element of it all. Please make an appointment at your doctor, your cough does not sound good, phlegm as described is something you need to get checked out. Also, even if as you think you have tonsilitis also, you should see your gp. You need to think more highly of yourself, you are not wasting the gp time, as you have to keep yourself well - more than most people. So please go to the doctors, and please request the relevant leaflets from this site. Finally, you may already have been told this, but, having undifferentiated is unlucky and lucky!, unlucky you have so much to contend with, but lucky because of this as it is too busy being undifferentiated and affecting loads of things, it hasn't a chance to concentrate on one thing and becoming 'full blown', i.e. organ involvement. Ha ha, just think of yourself as having your very own brand of lupus!

Keep giving yourself the willpower, love and hugs - Gatt.

[smellie in reply to goingaroundthetwist]

Hi Gatt, thank you so much for your reply. It was so helpful and really good to speak to someone in the same position as me. It has helped me understand it all a bit better. I have not spoken to any one about it at all very much since it all started as its to confusing to explain what I thought it was! My immediate family don't understand it I don't think but that's probably because I don't explain it Well and the doctor s just don't tel you much at all do they. Everything I do know I got off the Internet (so possibly half of that is not right). I have extreme tiredness like you and painful joints and the red rashy face and raynaurds. Also tintitus and migraines, stabbing pains in head and other parts of body. Lots of stomach aches and acid indigestion,Weak wrists, painful knees and some swelling and get so stiff. Also a lot of back pain. No one has mentioned any of the other diseases to me, only lupus and CTD. It's all so confusing isn't it and frustrating cos everyone says ' how are you mel? You certainly look well ' and so I just say ' yes i,m fine ', as it's a lot easier than the real answer. Thank you for all your advice. Perhaps I will get to the doctor. I hope you are having a good day today.

best wishes, melanie xx

[goingaroundthetwist in reply to smellie]

Hi Mel. Glad our replies are helping in a very difficult situation for you. If you feel you cannot explain about your lupus, maybe do what I did. I let my husband read postings and comments from this website! he was amazed at how many poor people suffer in silence, and although all have differing symptoms, are actually saying the same things. Especially about being told "how well you look", instead of saying fine to people, I changed my tack and told them "I was battling through", they might not have understood fully, but it made them think for a little while. The tiredness is extremely difficult, because there is such a perception out there about being lazy or being a hypercondriac (cannot spell this!), when all the while the one thing you want most in the world is to have your physical strength, your stamina, your inner strength, and your mental strength back again. Your body is constantly at war with you and the campaign rages for 24 hours a day. so it is little wonder you have constant tiredness. Please see your doctor and please speak to your family and close friends, or better still, let your family and friends have a look at the postings from everyone on this site. I have found this site to be a real blessing, especially at some of my lowest moments, there are so many wonderful people on here who care very much.

Lots of love and hugs - Gatt xxxxxxxxxxxxxx

[Musicteach]

Everything going round the twist has said is true I have UCTD and it has affected my throat severely. It is important to visit the GP to check out the phlegm, but I have found that hot water with a slice of lemon first thing in the morning helps a lot. We are all unique, so symptoms will vary enormously, but don't ever consider yourself a nuisance. Wish you all the best, take care.

[smellie in reply to Musicteach]

Thank you so much musicteach. It's good to hear from you.

melanie. X

[Musicteach]

Thank you! Do take care and I have found this website to be so supportive. I am sure that you will find the same! Xx

[Footygirl]

Hello flower,

I am in awe of you. Anyone with any part of these condition who can keep up with pre school children for 4 hours is a super-hero in my book.

This is a long long sharing of things negative about treatment for our conditions. I am sorry to say things were not as good as one hopes to find. Donn't feel you have to read it, indeed you may be planning your Christmas before it ends! So feel free...

The post below is a picture of the NHS as I found it last winter.

I can testify to numerous wonderful services by that body and lots of good treatment I have received. I have to believe the below is an abregation but is the consequences of snap judgements and been thought of as a time waster.

I, like you, had almost continual throat problems. I tried the usual GP route which usually was excellent. I found though that my distress was not heared. Each time I went was the same. I showed my awful throat, described the pain, said I could NOT swallow, they gave me tablets... which I could not SWALLOW. I have grade one, first in line, top of class dry mouth. I do not produce saliva except when eating. So though I tried to explain this to doctors various, that even with water to swallow was excrutiating agony, I was prescribed tablets.

I managed to mouth breathe, not needing to swallow saliver. This went on for many days. I tried the local walk in centre, which had no doctor present, and the sympathetic nurse directed me to the local on call ENT doctor at the nearest hospital.

I went, the non ENT doctor gave me increased pain killers, tablets, and sent me away which sent me a day later to the local A&E. The receptionist, who I don't think was medically trained, wrote SORE THROAT on my slip. I said it was far more than that but the train was set in motion. A triage nurse with the worst demeanor called me straight in. I tried to explain, she was really nasty and when I said I couldn't swallow, she shouted that she had just seen me do it! I hadn't.

With that I broke down. Hrmphing she grabbed the obs trolley, stuck my finger in the pulse monitor and sat down. She immediately jumped up and rushed me through to a cubicle. A sympathetic young doc 3hrs later spent ten minutes with me urging me to release the tornique on my arm put there to get blood ten minutes earlier when the nurse rushed to put a patient back in to bed. I sat there for 2 hours. When asked why, I was told that an ENT doc had been called.

3 hours later she examined me saw no occlusion no quinzy but wanted to check if it was Glandular Fever and put me in obs ward awaiting the blood test results from the blood she had just taken. A lady in a similar position was told at 3pm she could leave. At 9pm I wanted to sign myself out which I was denied because of the "way I presented" at A&E. A doctor let me go. I was given just about every analgesic of varying strength and found a gaggle of nurses going off duty by the door, all smirking and looking me up and down.

The pain subsided eventually, with no intervention until I could begin to swallow.

It is a tale of reaction, not medical judgement. Of opinion not based on scientific indications. A very sorry tale you may agree. As a consequence I believe a note of some kind was attached to my notes and passed on to my GP.

When, some 6 months later I went to see my GP to report I'd lost consciousness, briefly the day before. I was told it could not have been Stroke as i had no changes in my ability to talk or move(!). I left. I had been in my seat 3 minutes at best.

Next 6 months later I went to report that my sleeping routine was disrupted despite any attempt by me to correct it. I was told it was not sleep apnoe. (!) I lrft. 18 months later, on my own, my sleep routine returned to normal.

With some trepidation, I went last week to report a sore throat, a cough I had not been able to shift for some time ( since A&E episode) when I ate or my throat got dry whilst talking and an awful end of cough spasm. I went foremost to have my medication approved and put back to six monthly date ie 1/6 2/6 etc. I also asked if I could have another course of vit D as the lift it had given me months ago had ceased. Then I coughed, and the whole saga unwound for a locum doctor I had not seen before. I await further blood test results and am on a nightly antacid tablet for four weeks to see if the cough is affected. The vitamin D test showed deficiency was very low again. A winner! When I went to get that result. She also feels the cough may be a type of dyspenia. (?) caused by reflux of stomache acid or other cause. Apparently the ENT dept will not accept a referred patient until this ant acid trial has proved positively not acid.

guys, I sincerely hope that this immense saga serves as something to compare if you are feeling ignored, confused, bewildered by results, doctors' attitudes etc. SURELY your experiences can NOT be as bad as mine. I hope, like me You can now laugh about the absurdities I endured and will have confidence that your treatment is by far better than mine on those few occassions.

By the way, way back in 2001 I diagnosed myself with Lupus though my doc said, BUT IS VERY RARE the blood test showed I was close to liver failure and indeed had Lupus and was admitted to hospital as an emergency, from my doctor's office. So do not be fobbed off try another doctor, if you can. Ask questions. Stand up for your selves as I didn't. Take someone with you to observe and to ask questions if you can't

Ee by gum. That was a tale of woe.

Chins up me hearties you will have much better experiences than I did.

You have to make sure You get the respect you deserve.

Much hugs and wishes for your ongoing health.

Footy