Hi. I have had similar symptoms, left armpit lump, left collarbone lump and quite a few in my neck and jaw. I have been shoved to the side like most people with possible lymphoma. I have too been told that it could be lupus and a few other people I know was told the same thing and it turned out they had lymphoma. I've been suffering for around 2 years. Haematology are debating whether or not to discharge me as I have a ridiculously high esr. Just a constant waiting game. 

Hi,

I have also had similar symptoms to you and have a swollen lymph node for around a year?

Did you get the results from your xray are you any better

Hiya, 

my X-ray came back all fine so I was referred to a haematologist appointment where she didn't seem too concerned and said that the lumps felt like muscle parts  and sent for a CT scan to check for sure and to check about back pain. I am still waiting on CT results it's been 3 weeks. The less I have been feeling them and thinking about it the less big they feel and less I've been worrying. Have you seen anyone about yours and is it only one lump? 

Hi,

Saw GP year ago but they are not really interested my son has one as well in same place on his neck (he was seen by doctor 6 months ago and again told it was nothing and if it didnt get bigger it was fine) 

I am glad you are feeling better and your xray was ok, I am sure your CT will be fine too, 

Thank you for posting here I know sometimes things are not positive but it helps to hear from others who have gone through the same and are ok.

Take care of yourself

Hi, if you are worried I'd go and see your doctor, it may be just an infection but I would defo get it checked out to put your mind at ease. Doctors should be able to tell and if they are in any doubt they will refer you to ENT first of all. A biopsy is the next step as this is the only way to tell if it's lymphoma. If it's positive you will be referred to a Haematologist. The lymph nodes don't give you any pain so that could be a good sign for you. Best wishes and good luck x

So yours never went down? Or you had a problem with them raised for a while when you were younger? 

Hi, I hope everyone on here is ok and you have finally managed to get some answers.

I don't usually post anything like this but Iike many of you I am also just desperate for some advice as I have had the same, several swollen lymph nodes in the right side of my groin for well over 12 months now but still no further forward in finding out what is causing it.

When I first went to see my GP I was reassured that it was nothing and that they do sometimes swell up and then go down again if your body is fighting off an infection which I already knew but at that point they had been swollen for around 6 months and I hadn't got an infection and was well in my self other than the swollen lymph nodes and I had started to notice occasional night sweats now and again. 

So I left it another few months and they were still no different but I was now also starting to experience an aching in that area too which was becoming really uncomfortable so I went back and was seen by a different GP who basically said the same and that as long as they had got no bigger then it is fine and I was sent on my way again.

Finally after a third visit to the doctors I was referred for blood tests and an ultrasound scan which confirmed that "the lymph nodes are enlarged but not big enough to be worried about" which don't get me wrong was a relief in one respect but I still had no answer as to why they were enlarged and as far as I was aware they don't just swell up for no reason so I left still feeling very anxious about the whole situation but off I went hoping that they would just go back to normal eventually. 

Again a few more months went by then I called to speak to a GP about something else and it happened to be the same GP that had seen me the first time around, I came off the phone almost in tears as he was so rude and patronising because he had seen on the system that I had been back again about the lymph nodes "yet he had already told me that it was nothing to worry about" and he basically just accused me of being a hyper chondriac.

Since that day it has really put me off going back about anything let alone going back about the swollen lymph nodes again. I don't know what else to do other than go private which I couldn't afford so to this day I am still suffering with it and still worried as I have no idea what is causing it.

Reading everyone's similar experiences has helped and is some way comforting as it makes you realise that you are not alone so thank you.

Take Care x

Hello to everyone on here. 

I too am going through the same as you all.

I first noticed lumps in my shoulder a couple of years ago... probably in 2019... but since they didn’t hurt, I didn’t think anything about it. 

In March 2020 I’m pretty sure my daughter (then 11) and I had CV19. Had all the symptoms, sickness, diarrhoea, then the high fever came, then dry cough & breathing difficulties, then the lack of taste and smell right at the end as we started to feel like eating again. My sense of smell started to come back December 2020 / January 2021. 

I’ve had breathing difficulties ever since March 2020 when we had whatever we had… I also was having what felt like palpitations, and chest pain, and left arm pain. My GP would only have telephone consultations, and at one point told me to call an ambulance because she thought I was having a heart attack - which I wasn’t. By september, and because seeing a doctor was impossible I went private and saw a cardiologist. Heart fine. That’s not what is causing my breathlessness or pain. 

By December / Jan 2021 my breathing has got so bad I can’t get dressed without resting after every bit of clothing. I can no longer change the bedsheets at all. The night sweats not good. The fever still 37.8-38 constantly.

My shoulder was keeping me awake at night with the pain February & March 2021. Not having faith in the doctors I went to the Chiropractor. He fixes it for a while, but also agreed the lump in my shoulder should be checked out. Within the week I was at the Chiro School here in Bournemouth, having an ultrasound. Took 30 mins. They did a comprehensive scan. Measuring everything, which showed I have two enlarged and hyper echoic lymph nodes, with changes to the hilum. One above and below my left collarbone. I also have a multi-nodular goitre in the left of my thyroid, known about since 2013.

This ‘private scan’ set off a chain of events, starting in March 2021. 

So far I have had two week ‘fast track’ clear NHS mammogram in Poole, another two week ‘fast track’ NHS repeat 'shoulder' scan in Christchurch but not of the lymph nodes, because “it wasn't their department”. An NHS thyroid scan in Bournemouth last week (May 2021) which showed the main nodule has grown from 1cm to 2cm in 8 years, showing an iso echoic appearance. But again, she said “it wasn't her department” to scan the lymph nodes. She said it would be the chest department, which would be another couple of weeks wait. 

Talk about feeling pushed from department to department. I feel like drawing lines with a sharpie on my shoulder. This bit is the shoulder dept, this bit chest, this bit neck… where is the lymph nodes specialist?

The doctor said they would ‘wait & see’ and probably rescan my thyroid in 6 months, but no mention of the lymph nodes. I can’t wait another 6 months.

In the last 6 months I have got progressively worse with every month and week that has gone by. Still no-one has actually acted on the private ultrasound of my lymph node from March 2021, because I haven’t been sent to the correct NHS department. I’m very grateful for all the investigations, but I can’t help feeling that if someone actually listened to me, and examined my shoulder, and sent me to the right department, the NHS could have saved both time and money. Every time I talk to a doctor it is always a different one. How can they be expected to put all the pieces of the jigsaw puzzle of my health together in 5-10 min slots? Then a different doctor is supposed to pick up the pieces and carry on. 

No wonder we are all struggling to find out what is going on with our health. Newsflash, the health service isn’t a health service anymore. It is an EMERGENCY service. When you are so sick you cannot carry on, or you collapse - something may be done. Until then, go and get on with it, is what I have been told.

I went searching putting all my symptoms and blood test results into a symptom checker called "Isabel" which is apparently the one GP's use, to try to find some answers myself. It’s my health after all. If I don’t do it, feels like no-one will.   (I have raised CRP raised ESR raised alanin amniotransferase, very high B12 yet very low B9 or folate, Extreme exhaustion, constant low grade fever, lack of appetite, nausea & sometimes vomiting, pins and needles and left side stomach pain, as well as the pain in the shoulder and chest behind the sternum.) 

The AI ‘Isabel’ diagnosed lymphoma. I then tried other symptom checkers, just to be sure, with the same result. One of the sites said do you want to find a specialist in the field, in your area. So I end of last week I gave in and went private. I clicked the link, and went to see the best lymphoma specialist in the area. He gave me a proper examination. Took the time to listen to me. Took an hour with me. The first doctor to not make me feel like a hypochondriac. He pointed asking me - Is this where you feel pain, and he nailed it every time. It was uncanny. He then recommended the full body CT scan, with contrast radioactive iodine IV. I’m having to borrow money to pay for it, till I can sell things to pay it back. But what use are things, if I am not here to use them?

I am now waiting for the results of the CT scan by next week. 

I want it to all be fine, obviously. But I also want to know what is causing me to feel like I am unable to function. I can’t go on like this. It is reassuring to find I am not the only one in this situation, yet also horrifying to see how little gets done. How much we are all expected to ‘just deal with.’

I have had endometriosis since I was 18, and I’m now 53. I was given a Mirena coil in my late 20’s & early 30’s as a treatment. I was so much better after that. But I am interested to see what the other ladies write about their symptoms and also having endometriosis. 

I would also like to mention, I have researched “Mast Cell Activation Syndrome” or M-CAS - which seems to be responsible for many of the fibromyalgia / chronic fatigue / long covid / and who knows what else. This clinical pattern of tiredness and enlarged lymph nodes may be able to be mitigated or healed with the diet to help M-CAS - basically a histamine free diet… boost the immune system, and strengthen it with micro-nutrients, vitamins and minerals. 

I have started using magnesium oil on my shoulders. Works better than pain killers. Iodine drops to help my thyroid. The M-CAS diet, and high strength vitamin C, a B vitamin complex spray under the tongue, as well as vitamin D spray under tongue. The sprays go directly into the system, bypassing the gut, where stomach acid and leaky gut syndrome can interfere with absorption. Better You is a reliable brand, available on amazon - and elsewhere. 

Good luck everyone. Fingers crossed. Thank you all for sharing your experiences, I appreciate it. And thank you for reading this, if you got this far!!

 May all our results be good ones.

Thank you GlowJoy for typing this out. Honestly reading your post made me feel like I'm not alone. I feel like I have something super similar to you. I had what I think was COVID-19 in December 2019. I got it quite bad and had to be referred to hospital as they thought I had pneumonia  (luckily I didn't but I did have a lower respiratory tract infection). Ever since I feel like my health hasn't been the same.

when you said that you can't get dressed without resting I knew exactly what you meant. I used to be so active and I'm struggling to keep up now which sucks because I can't afford to be ill and have my family relying on me. 
I'm 25 and feel like I shouldn't be feeling like this.

Since November 2020 I had an ear infection that won't go away. Had lumps behind my ears that would shrink then grown which I wasn't too concerned because I've had trouble with my ears and lumps behind my ears in the past although usually they disappear in a week. I've been on 3 courses and the ear infection still comes and goes. I refused to be prescribed more antibiotics because I felt like the antibiotics were making me feel worse and they weren't even working.
 

The lumps behind my ears eventually went end of March but instead I ended up with multiple lumps on the sides of my neck, my right side of my neck is slightly swollen and feels painful almost like my heads to heavy for my neck now. I also have multiple hard but moveable lumps in my groin which are occasionally painful. These lumps have not gone down at all like the ones that were behind my ears. The ones near my groin are long. It's kinda funny because I keep finding new lumps and all I have to do is follow the pain.

I went to see the GP again at the beginning of April and she requested a full blood count which came back fine. 
It's now almost June and they still haven't gone. They are painful occasionally and I'm also getting a stitch like pain on my upper left stomach area near my ribs. I rang the doctors last week again as it had been a month and she said there is nothing she can do they are just swollen glands. I keep feeling like they are flogging me off because of the fact I've got an appointment with the ENT. The appointment isn't until November 2022 though because of Covid and I don't know if I can last that long feeling tired all the time and not being able to complete tasks properly. I'm also getting bad days of nausea where I can't eat anything and I'm currently underweight so I'm scared of losing anymore weight again. Luckily the past 2 weeks I've managed to maintain the number on the scale.

My grandmother passed away from cancer 8 years ago so it's been quite scary to even think the C word. I'm praying it's not and I just really want to know what's wrong with me. Now after your post I'm wondering if it's after effects of long covid (just a speculation) and whether I should pursue it or just leave it .

I feel like the doctors aren't taking me seriously and they just keep struggling me off. I really don't feel like calling in again so I was planning to wait another month to see if it goes on its own or I can find a natural remedy accidentally