Update on Night Sweats & Itching: Hi lovely people... - LUPUS UK

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Update on Night Sweats & Itching

Selwin2000
Selwin2000

Hi lovely people.

I’m just home from being admitted to hospital Sunday afternoon with chest pain. I have a heart condition called Coronary Artery Spasm - which is generally controlled but I’ve experienced a lot of stress recently which is not great with ‘CAS’ it’s like Angina but happens at rest rather than exercise.

Upon my admission to a&e the Consultant was asking about my medical history and current symptoms so I mentioned about the night sweats itching and loss of appetite etc didn’t really think anything else of it as I was there due to chest pain!!

Any way he said that he was going to write to my GP to refer me on a two week waiting list to be seen by the Haematologist as my symptoms and enlarged spleen are all indicative of Lymphoma 😱 my husband and I were in complete shock. I’m thinking positive and putting cancer scares to the back of my mind but just wanted to update people that were so kind to respond to me I’m truly grateful. Does anyone have any experience of this?? Thank you xxx

19 Replies
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Selwin2000 I am so very sorry to read your news, massively fingers crossed all is found to be well. I am currently going through this, chest pain was thought to be caused by a recent pulmonary embolism crisis, but I have also had breathing difficulty, and have enlarged, pemanent lymph nodes up in my neck and groin. On the two week track myself, awaiting neck ultrasound of thyroid, I have large nodules, and inspection of lymph nodes. Lymphoma has been raised with me. Like you, I am desperately trying to keep calm.

Oh wowsers bless you darling, it knocks you for six doesn’t it. I’m praying we will both be ok xxx

Thank you lovely, yes does knock you down, already feeling unwell, this sort of pressure on top has been overwhelming. Day at time my motto for now.

Thanks for posting your news, difficult though it is. I have nothing useful to add, but send love and hopes that all will go well to you and to LupusKaren x

Thank you so much Whisperit that so very kind of you xxx

I am so sorry both of you are going through this. Big soft hugs and lots of prayers being sent to you both and your families. Kitty

Selwin2000
Selwin2000
in reply to pmrkitty

Thank you so much sweet💝

Hi Selwin

Sorry to read you've been in hospital with chest pain. Interesting it's coronary artery spasm as I've had problems with the same thing!. Not an easy condition. Can I ask how yours is treated. Do you find GTN is helpful?. I find the inflammation from the lupus causes the spasms which can be really strong and painful!.

I'm sorry your being investigated for lymphoma and hope you get the all clear soon. Big worry for you. Keep us posted. X

Selwin2000
Selwin2000
in reply to misty14

Hi Misty14

Thank you for your message huni.

Coronary Artery Spasm is horrendous I’m on medication daily for it. Adizem (that keeps arteries open) Rampril for ^BP & Isosorbide Mononitrate (tablet form of GTN) on these daily plus GTN spray when the pain is bad. The GTN generally works for me but this episode it didn’t which scared me. TBH I’m home and not slept all night as in pain feel so fed up.

Does your Coronary Artery Spasm come on more when you’re stressed? Mine certainly does. It’s so nice to have someone who understands CAS xxx

misty14
misty14
in reply to Selwin2000

Hi Selwin, really feel for you having this as it is horrendous because of the level of pain and they don't really understand why it happens so treatment is hit and miss!. I took isosorbide mono nitrate and slozem for a while. I do find stress doesn't help and the trouble is however we're told it's not your heart when it's bad you think am I having a heart attack?. Can't help it!. Did the hospital give you guidelines as to when you seek advice of the pain doesn't settle?. On my GTN spray it says if this doesn't work in five mins ring 999!. Have you had heart tests?. Hope you sleep better tonight. Xx

Selwin2000
Selwin2000
in reply to misty14

Your absolutely right Misty14 that’s the trouble you end up doubled over in pain thinking this time it’s a heart attack - I did say to the consultant I don’t wNt to waste anybody’s time and he told me that it can actually cause a heart attack if the narrowing is there long enough. If you go on YouTube and look for Dr Gupta York Cardiology (York Cardiologist) he’s awesome he has a YouTube blog on all cardiac issues to include coronary artery spasm - you can even message him he’s so good. My cardiologist told me that if I use my GTN and have symptoms after two lots of spray I must call 999 - now I’m home and still feel like I’ve an elephant sat on my chest but now concerned it could be lymphoma never a dull day hey!! xx

misty14
misty14
in reply to Selwin2000

Thanks Selwin for the helpful info. Will take a look. Do hope your better soon and you don't have lymphoma!. There's never a dull day with these illnesses, wish there were!. Keep us posted how you get on. TAKE CAREX

Hi Selwin2000, when I read your headline, my ears pricked up. You have described classic B symptoms of lymphoma and good for the doctor who picked up on it. Also to say these symptoms could be caused by other illnesses as well. I have just finished chemo for a rare type of lymphoma, only it took a while for my doctor to recognise it. I went to GP with a terrible itch on my back and scalp, she looked and gave me a prescription for a special shampoo which didn't help my itch. It was only when a lump on my neck wouldn't go away, she referred me to Ent. I also had terrible fatique, lost about 2 stone, just couldn't eat? I did have another lump under my armpit which I didn't know about, you don't really think about checking there. I put all my symptoms down to another auto immune problem. They will prob do an ultrasound with FNA biopsy to diagnose lymphoma. Please message me if I can help you in any other way.

Selwin2000
Selwin2000
in reply to Lizard28

Oh my days Lizard28 I’m so sorry to hear you have been through this it’s the waiting that’s the worst isn’t it. I’ve just started a new job too and my new manager (who I thought was lovely) doesn’t seem very happy with me he said on the phone today oh we will line up tomorrow and go through your review at the same time (they may get rid of me as I’m on a 4wk trial) 🙄

Did you get pains in your chest too? Was your sweating (drenching)only at night? It’s so embarrassing it’s happened to me whilst out a couple of times and I look like I’m suffering with malaria as it just puts down my face and my hair gets soaked but generally worse on a night whilst trying to sleep that eventually calms down then the bloody itching starts - my husband now sleeps in the other room as I was constantly keeping him awake I’ve lost over a stone in 2months - I’ve not had any appetite for ages just wanted to drink tea or water (don’t usually like water)

I hope you are feeling much better huni xxx

Hi, so sorry you are going through all this. My sweats were drenching, I woke up chilled. I did have breathing problems but had them before hence me thinking it was MCTD which I have been diagnosed with. I am in remission at the moment. Not on medication as Rheumy wants to see me at end of month to see how things are going. My hands and wrists are very sore again and the fatigue is back, she now thinks I have Sjögrens as it has a higher risk of catching lymphoma with this. I have had all the symptoms but bloods have been negative for it. It was very strange when they actually told me I had lymphoma, I’m used to everything being negative and they don’t know what’s wrong with me. I hope you don’t have lymphoma but if you have, I coped well with the chemo and I am a big wimp, worst bit was losing my hair, it’s starting to grow back again so looking forward to that but my wig has served me well. Keep in touch, take care x

Selwin2000
Selwin2000
in reply to Lizard28

Bless you sweetie, I absolutely will keep in touch with you - how did the Consultant test you for lymphoma? Did you have a biopsy? xxx

The ent doc sent me for an ultrasound with a fine needle aspiration biopsy, wasn’t too bad, was frozen well. It took over two weeks for results to come through, the day before I was going on holiday he called me to tell me I had lymphoma and not to go on holiday 😥. I was seen by a haematologist within a few days. She wanted the ct scan done, another biopsy from under my arm this time and a bone marrow biopsy. They needed this to determine what kind of lymphoma is was, whether it was indolent or aggressive and to make sure it wasn’t in my bone marrow which it wasn’t in my case. The ct scan shows what stage it’s at. Mine was stage 3b as it was in different sides of my body, had large nodes at side of each lung and kidneys. It was then after the multi disciplinary meeting they decided chemo was best treatment. This all took around 12 weeks from going to my doctor to getting treatment.. many lymphoma patients go on watch and wait without treatment for many years. Mine was an indolent lymphoma but I still needed chemo. I’m probably now on watch and wait now I’m in remission as the one I had is not cureable but controllable. I never knew there were loads of different types of lymphomas. Try not to worry, the waiting is the worst bit, I thought the waiting was never going to end. By the time I started treatment I was up for it. Positive thoughts. Sending hugs 😘

Sending love and light your way.

It's great when you meet a doctor who listens and thinks outside the box, I've met some who thought I was feigning the chest pain especially when they ruled out PE and others who are like it's probably just the lupus acting up because of the other symptoms. But my GP keeps pushing as I am yet to get any lasting relief. Hopefully, sooner than later, we'd get some answers.

Till then, stay strong fighter!

**UPDATE**

Following my recent admission to hospital with Coronary Artery Spasm/Angina attack and the round Dr suggesting I potentially had Lymphoma I was admitted less than a week after with severe vomiting loss of blood and the most horrendous stomach pains in hospital for a week on iv fluids and Antibiotics very scary as truthfully I thought I was going to die (sounds very dramatic I know but I was that weak it seriously scared me) long story short lots of blood tests later showing abnormalities for various things I’m now on the fast track to be seen by a Haematologist to rule out Lymphoma.

Do you feel as though you are never a day away from illness?? I feel like my body is packing up on me xx

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