Posted , 9 users are following.
Hi, I'm 23, and I had/have had glandular fever and strep throat. I want to prefice my story by saying, that I have a high pain tolerance and I'm not overly dramatic. unless something is super sore it doesn't bother me.
This all started about two and a half years ago. i had a sore throat for weeks and eventually my tonsils got so swollen and sore that I couldn't swallow. Got rushed to hospital cause I couldn't breathe. They also got infected and had pus on them.
I got my tonsils out, which was quite an ordeal. I had to be readmitted to hospital though cause the pain was so bad. The wound where they took them out didn't heal properly, and the blood didn't clot like it's meant to. Two weeks later I was having a bath and then blood started pouring out of my mouth along with "stringy congealed " bits. Maybe 10 cups worth. I got rushed to the ER (as I had already filled the bathroom basin at home with blood by the time the ambulance arrived).
The throat specialist at the hospital tried to stop he bleeding but didn't, and so they knocked me out and took me into theatre and stopped the bleeding. Ever since then, my throat has been sore every single day and I have tried to find answers, to no avail.
Right after my tonsils came out, I was taking a mixture of codeine and paracetamol to try keep the pain at bay. Not bad to start, but you get used to them and they stop working. To be honest the only pain meds that helped me were tramadol. Also for my sore throat, there are these difflam lozenges you can buy, and they also come in a spray bottle form too. Tramadol and difflam are the only thing that helped with pain relief.
Two years on I still have glandular fever and I am tired every day, and my throat hurts every day . I lost my job recently due to showing up late (because of glandular fever and being so tired, combined with my boss forcing me into having to do shift work, which made it even harder to sleep). Now I don't have money to go to specialists or anything like I was doing whilst working.
One thing I found that helped my dry sore throat a little bit was to stop eating dairy. No milk, no cheese. They have inflammatory properties and arent good for your body. That has helped a very small amount. Also, probably obvious, but no alcohol. Even one or two beers and my throat is sooooo sore for the next three days.
I'm not sure if/when I'll ever get better and it's causing me to be depressed and lose ambition. I'm run down constantly, and always sore. Have been to many different throat specialists and taken many different pills, but none have worked. Throat is constantly dry, so to combat this, I am constantly drinking water. The problem is, I end up drinking so much water that I feel sick, and have to pee every twenty minutes. If I don't though, the pain is unbearable.
Don't want to give up, but this cost me my job, all my savings, my ambition in life, and my friends. Don't know what else to do with my situation personally.
Have left out some details (like the 50 odd visits to my GP, 20 odd visits to specialists etc etc). Main points are above.
Anyone been through anything similar? Specialists and GP last time I went basically said we have done everything we can and they were really sorry. No official cure for glandular fever, and they aren't sure what to do with my sore throat anymore.
Any comments/advice/anything appreciated. I really didn't know how much my health mattered but I would give anything just to feel normal again , as this has really affected my life.
1 like, 19 replies
Thought I should add that I don't smoke and never have, and I don't drink either. Really not worth the soreness that comes with it.
Have you found anything that helps it get better?
What an ordeal! I'm sorry you've been going through so much. That's pretty awful and scary--what happened after your tonsils came out. Glandular fever can morph into ME/CFS. And one symptom of ME/CFS is sore throat. But it's impossible to say whether your sore throat is caused by the whole tonsils episode or is now being caused by ME/CFS. The four core symptoms of this illness are poor sleep, great amounts of fatigue, post-exertional fatigue (fatigue after any activity), and cognitive problems (like short-term memory loss and brain fog). Go to the "solve me/cfs initiative" website and see if the symptoms there resonate with you. If they do, the appropriate specialist is an infectious disease doctor or a rheumatologist knowledgeable in ME/CFS. In the meantime, especially if you do have this illness, get plenty of rest, pace yourself (don't try to push through any fatigue), avoid caffeine and sugar, and de-stress in whatever way you can, as stress greatly exacerbates symptoms. I've found that meditation helps with anxiety and depression. There's no treatment for ME/CFS, but people can get better. You're young, so that's a good thing in terms of recovery.
I do have all of those symptoms unfortunately. Im always tired, even after sleep. Sometimes i go to bed at 9pm and dont wake until 10am the next morning, and then i feel just as tired as before i went to sleep.
I dont drink coffee or anything with caffeine so that is good. Unfortunately at the time i caught glandular fever and had my tonsills out i had all sorts of personal stuff going on, so was constantly stressed.
Have been looking online and i cant find any treatment for CFS/Glandular fever, or any other solutions for my sore throat, so thats dissapointing!
Rest is the only thing that seems to work for me,last relapse I didn't work for year and was basically house bound, I only went out if I had too,like groceries
Hi. It all started with the sore throat for me too. I got my tonsils out but I was also had mononucleosis and herpes in my throat. I was 18. I am 37 now, I have been sick since. But I had a few better years before another virus and infection triggered a full blown CFIDS.
My advice, which you are free to ignore.
1. Gargle with Dead Sea salt (very important that it's not a regular salt) mixed with a bit of baking soda. You can also add a drop or iodine. Dead Sea salt really helps heal any open wounds. This gargle combination really provides some temp. relief.
2. Gabapentin - The pain continue to live in your nerve endings, and this medication is supposed to calm the nerve endings. Look it up. It also has a slght sedative effect when you take it at night.
3. Have you checked if you developed yeast in your throat? Do you see any white coating? It can cause this throbbing pain that makes you want to pull your hair out, and I remember I wanted to swallow constantly only not to feel it for a second. What you described sounds similar. But the gargle will help with that too.
Sometimes my tongue gets a white coating after eating but i always brush my tongue when i brush my teeth and it comes off, could that be it?
Hi, I thought I should reply as I have had a very similar experience to you. Apologies in advance for the lengthy post, but I know it has helped me hearing other people's experiences when so similar to mine.
I am 24 and have been ill for around 2 and a half years now. I have seen countless specialists and GPs, including an ME/CFS specialist who has excluded all other causes and given me a firm diagnosis of ME/CFS.
My illness started with recurrent tonsillitis and throat infections, countless courses of antibiotics and feeling very run down. One specialist thought that perhaps the persistent infection was the cause of all my symptoms and so I was referred for a tonsillectomy. I was having a lot of tests at this time and it was then that they found I had had glandular fever somewhere along the line which was probably misdiagnosed as a bad bout of tonsillitis. As I was unaware that I had glandular fever at the time I went back to work and did not rest etc appropriately; having read a lot about glandular fever I now think this was one of the main contributors to my long term ill health. But no one can turn back the clock, we can only make sure we look after ourselves properly now.
Anyway, I had the tonsillectomy July 2015, got an infection afterwards so more antibiotics. Once fully recovered I felt well for around a month and then my symptoms returned worse than ever leaving me house bound, some days unable to get out of bed and as a result I lost my job. I too was still experiencing the daily sore throat along with swollen painful glands and all of the other unbearable symptoms of ME/CFS, despite being fully healed following the tonsillectomy. This caused me immense upset and frustration as I had been through a great deal of pain getting the tonsillectomy and being ill during the recovery period with infection, vomiting etc. I also was drinking several litres of water a day because I was experiencing the constant dry throat and feeling like I needed to swallow liquid down to help.
The good news is, although I am not completely better and am still looking for answers and treatments myself, I have made a vast improvement. I am unsure what to attribute this improvement to as I have tried many different things but I can definitely recommend some things I think help.
Firstly, my GP has been very good throughout this time and has recommended many beneficial things. She recommended I gargle with chlorexidine/corsodyl mouthwash every day to help with the daily sore throat, which it did. I now only have to use this when I get a sore throat which is maybe once every two weeks, sometimes less. When I was still getting recurrent throat infections she also recommended I make a solution of boiled and cooled water mixed with a couple of drops of tea tree oil and gargle with this for around a minute, again this really helped and I would sometimes mix in some salt to the solution. I swear that gargling with these saved me from having yet another course of antibiotics on many occasions. I am now over a year on from having the tonsillectomy and haven't needed any antibiotics since the recovery period and my throat is much much better than ever before. Like you, I also found the Difflam spray really beneficial. I would also make warm drinks of boiled and cooled water, with honey and fresh lemon squeezed in, sometimes adding ginger, and I found this helped soothe my throat.
I think that being able to give my body a rest from the antibiotics has helped a lot and I have been taking a probiotic every day to try and build up my gastrointestinal health, as advised by the gastroenterologist that I see.
I have been off work for almost a full year now, which I think has had a big influence on my health. Although it can be soul destroying at times not having a job, I think that the physical and mental rest is necessary. I try and do as many things as I can for my mental health like meditation and also going to counselling. I'm unsure what impact this has had, but I do believe it is important to try and reduce stress or handle stress more effectively in order to get better; although I know this is easier said than done.
Like you, I no longer drink alcohol as I was experiencing the exact same problem of having a sore throat for days after and feeling really run down, I was also burning up and feeling very unwell when drinking. So it's been nearly a full year since I drank any alcohol which I think has also helped. My view is that alcohol is a toxin and when the body is already trying to deal with illness it's probably an added stress that it doesn't need.
Again like you, I was going through a really stressful time with personal things going on whilst having the tonsilitis and glandular fever, combined with working a stressful job doing long days, some vitamin deficiencies that I didn't know about, bile acid malabsorption which I didn't know about, being on constant antibiotics which do have well documented side effects and then also having the operation in the midst of all this. I think that the combination of mental stress along with physical illness is really detrimental to the body. After doing so much reading, the theory I think that makes the most sense to me is that when the body encounters so much stress both physically and mentally it manifests in chronic physical symptoms. I have read a lot about how the body floods your system with stress hormones when it perceives a threat (stress, illness, trauma etc) and how if this continues long term it can start to have a damaging physical impact on the body. I have also read a lot about how people can be 'stuck' in this pattern, there is a well known training programme which claims to change the brain patterns which influence the nervous system to give us these symptoms. I am still reading into this training programme myself and making up my mind as to whether I think this will be a cure for me or whether I think it's too wishy washy or maybe even a con. There are many recovery stories from people who have used this programme, and there are also many stories from people who have made no improvement using the programme and sometimes even became more ill. In my opinion, the jury's still out for me so you should read into it and see what you think, I find it comforting on my less skeptical days to at least believe there is a cure.
I think it may be worthwhile for you to have some tests done for vitamin deficiencies if you haven't already. Along the way my GP worked with me to correct any smaller issues that may have been contributing to my fatigue etc and found that I was deficient in folate, vitamin D and vitamin B12 and for whatever reason these seem to be quite common in people with ME/CFS. Perhaps it's just that people with ME/CFS present with so many symptoms it's a necessary test to do and people who are well may not think to have the tests done if they can function adequately.
In general in our position I'd say it's important to be looking after yourself in terms of diet, sticking to a good sleeping pattern, looking into whatever supplements etc you think may help, taking the rest you need and trying to reduce/cope well with stress.
Anyway, I won't bore you with anymore detail but if you have any questions about anything I'd be happy to answer as like I say I feel like your post could have been me a year ago, and I know exactly how that feels.
Thank you so much for the reply . Sounds like we are in the same boat really.
It's quite hard to explain to other people - my former boss said "we all get tired" and "im 40 and I get tired, just deal with it".
I dont think I'm well enough to work yet, but I don't know if I'm going to get better sadly. Went to bed at 10pm last night, woke at 7am to pee, then slept again until 12:30pm. The worst part is I still felt tired when I woke up.
I'm going to try your suggestions for my throat, thank you
My dad keeps saying I need to get a job but I don't think I'm well enough. It sounds useless saying I'm too tired all the time, and I think people just assume that it means "I can't be bothered" as opposed to the actual sickness. Any ideas/thoughts with that?
Again thank you so much for the reply , really appreciate it
My manager said the exact same thing to me when speaking to me about a promotion, I said I wasn't sure physically I could handle the demand and she said 'well we all get tired, it's whether you're willing to deal with the tiredness to progress'.
As far as other people's opinions are concerned, I'd say just try and accept them as they are. We can never change them as a person, they either want to understand and try to be empathetic or they don't and we can't change that, that's on them. Unfortunately when you're in good health you don't know how it feels to feel how we do, I was probably even guilty of a lack of empathy myself before being so ill. Maybe gently remind those who say insensitive/ignorant things that we're all human and all susceptible to the same ills, there's no difference between you and them only that they've been lucky so far and if they ever experienced what you have you'd have a much kinder heart.
It's taken me a long time to be able to ignore the insensitive comments as I too had family members who just didn't understand and thought I should go back to work, I think they start to kid themselves into thinking we've gotten into a rut of unemployment and low mood and so going back to work and cheering ourselves up is the answer, if only it were that simple. I found that by really explaining in detail how my body felt to the people who were skeptical/insensitive and explaining how of course I wanted to travel again and go on holidays and get a job that I love, they show a little more empathy when you really give them detail and make your desperation clear. I also shared a lot of other people's stories with them so they could see this is a widespread illness with thousands and thousands of people suffering in the same way.
One thing I would say is that in my opinion I've found having a strict sleeping routine has helped. I go to a specialist ME/CFS clinic in my local hospital and that was one of their first suggestions to the group. They say to make the changes over a long time so you don't make yourself feel worse. Before hand I was going to bed anywhere between 10pm and 12am and getting up between 8am and 11am. I now go to bed at 10pm every night asleep by 11pm and awake at 9am. Like I say, I've found that's helped me.
Thanks so much for the reply.
Everything you said just took place...i was talking to my dad who just says "you cant sit around doing nothing" and i tried to explain whats going on but its hard. Most people just dont get it. He said im making myself feel worse by doing nothing, and stuff like that
Join this discussion or start a new one?New discussion Reply