Feel like I’m losing the plot/ feel like I have blood cancer

[Syd]

hi guys

Not exactly sure what I’m hoping to achieve by posting but maybe I’ll find out as I write.

I’m Sydney, 40yo Mum of 2.

So, I’ve been feeling crap in varying ways over the past few years. I’ll try to stick to the most recent stuff I think to maybe simplify it…. It’s so hard to know what’s related to what and whether to mention all of it without throwing down red herrings. Wonder if anyone else has this weird red herring concern… like if I mention something unrelated to a doctor, I’m terrified I’ll send them down the wrong path. Never heard anyone mention this ever actually so if you relate, do let me know!

Things I’ve had going on consistently over last few years include: weird sensations- tingling, crawling, burning, itching. Random muscle twitches. Blurry vision. Very drippy nose especially when it’s cold. Joint pain. Bone pain.

Back in March had bloods done due to some thyroid-style concerns from last year. Thyroid seemed fine but my iron a little low (first time in my life) so put on supplements.

Shortly after I was feeling REALLY unwell & exhausted on top of the other many symptoms I had already so I saw a GP. I was at this point thinking MS. He was unfathomably dismissive and clearly chalked up my problems to stress & a wild imagination. I somehow managed the energy to advocate enough to get a referral to neuro who subsequently wanted an MRI of my head. It showed a tiny (probably benign but still not confirmed) pituitary tumour. Had second MRI to confirm that which it did. Then had all the bloods to check if it was producing excess hormones or reducing hormones, both of which were possible. This tumour appears to be doing neither from tests- fine.

June, during the period that all that was going on, I had a trip to A&E due to severe pain in my chest sort of area, specifically under left ribs. I thought it was my heart but nothing to worry about on EEG. Pain settled down and I went home.

June still - saw another GP as still feeling really exhausted & overall terrible, had been sweating profusely at night, hellish insomnia and feeling very emotional. At this point I suspected early perimenopause maybe so doc put me on HRT to try.

HRT didn’t help much and I felt generally worse so came off it after 2 months.

Fast forward to 2 weeks ago, my lower back was absolute agony to the point I could hardly walk and was kept awake with intense pain. This past week the pain shuffled over to the right side. I also had mild rash on front right hip.

3 days ago I noticed very swollen lymph nodes in groin, right side. Never known them this big, there’s 2 and both size of cherry tomatoes. Got straight to doctors.

Apparently it’s shingles but I’m really not convinced that it is. And if it is shingles I’m not feeling comforted that there’s not more going on that’s led to me having shingles. These lymph nodes are not painful btw and the rash is not painful either. I have been put on anti viral meds to see what happens so I’m going with that for now but I’m really concerned I have lymphoma.

Does much/any of my story resonate with you? I guess that’s my question. I’m currently torn between feeling like a lunatic and full of worry about lymphoma.

Thanks in advance for your responses and big love to you all

[Nichola75]

Hi @Syd and welcome to the forum.

It’s really hard isn’t when we feel unwell and our mind thinks all sorts of things, especially when we have ever changing symptoms. It must be frustrating that nobody can get to the bottom of it. Having two children and feeling so unwell must be really tough as well.

I know I googled my symptoms a lot - which led to some many different possibilities - which wasn’t helpful.

What I would say is that your symptoms could be many different things and only a medical professional can comment on this.

However, I do advocate that we know our bodies best and if you feel like something is wrong, you have to follow this up.

I don’t think you a lunatic. I think you are somebody who feels unwell and wants to know why! We would all be the same.

I would report any new symptoms to the GP- perhaps write things down so you have a timeline of what’s been going on for you. Have you got people around you who are helping you when you’re unwell? Sometimes it’s good to take somebody with you to appointments.

Take good care of yourself and keep us updated. Here is the support line if you want to talk things through.

Nichola

Blood Cancer UK | Contacting Blood Cancer UK

[Fiona_BloodCancerUK]

Hi @Syd ,

Welcome to our forum.

I am sorry to hear about all the symptoms and pain you have been experiencing. It sounds like a really difficult and challenging time for you and it is understandable that you feel like you are losing the plot. I hope you found it helpful to write it all down and receive lots of support here on our forum. @Nichola75 has kindly linked how to contact the nursing support team. We would be very happy to talk things through with you and support you.

It is good that you saw the GP straight away when you noticed your swollen lymph glands. They can enlarge when you have infections or viruses like shingles. Shingles can cause pain and a rash and can make you feel really unwell. I have linked in some information here which you might find helpful NHS Shingles

In view of all the symptoms you have been having, it things do not improve after your course of anti viral medications and your lymph glands remain swollen, like you said I would recommend going back to your GP and asking for a referral to haematology. I have enclosed some information which includes questions to ask your GP which you might find helpful Signs and Symptoms

Look after yourself and let us know how you get on.

Kind regards

Fiona (support services nurse)

[Syd]

Thanks so much for your thoughtful replies guys. Apologies it’s taken a while to get back. I have another appointment booked this afternoon as I have found more slightly swollen lymph nodes along with a large lump on back of neck which I remembered finding about 6 months ago but told myself it was just a normal anatomy thing. After looking in to it it seems there shouldn’t be a hard lump in this location and actually it feels very big.

One of you asked, sorry can’t get back to see, how my support system is. I have a partner who is really great & being very supportive but our younger son, 9 has cerebral palsy, is in a wheelchair, tube fed, communication device etc so I really need to not be ill to be honest. I absolutely know this is the case for everyone, I mean none of us have time to get ill right?! But I also have an amazing little person who depends on me for absolutely everything and I don’t want to let him down….

I’ll try to report back later.

Thanks again for your kindness

[Nichola75]

Hi @Syd.

Thank you for the update, especially when you have so much going on.

I think our children are always out first thought, mine definitely were. Even more so for you when you have a son who needs extra support.

You are definitely not going to let him down - I know that’s easy for me to say. Try and take it one step at a time. It’s only natural we think about the worse case scenario but at the moment, focus on getting to the bottom of things.

Take good care of yourself and you know where we are if you need us

[Syd]

Hi again guys, I’m back

Apologies I kind of left…. I felt a bit embarrassed of myself, thinking I had wasted all your time.

Since my last msg I went to doc again end of October due to many symptoms and generally feeling rubbish. Bloating led to a stool test, that was clear. Doctor tried to reassure me I’m fine….. then when I read my notes afterwards she has written “diagnosis- anxiety”…. It felt hugely stressful to given this diagnosis seeing as I feel really physically unwell. I now feel like every time a doctor sees me they’re gonna be influenced by it. anyways.

I then realised in beginning of December I still have a decent sized hard lymph node swollen in groin from my ‘shingles’. And then my ankle randomly swelled up, same side as lymph node. Made another appointment. Then just after i made it I realised I have lymph nodes up in my neck too - I can feel lots of lumps in fact, some grape sized and some pea sized but my neck is very lumpy indeed and I’ve compared with my family members.

When I saw doctor she seemed kind of frustrated with me…. Either that or more worried, not sure but it felt more frustrated. She has, after checking, my groin and neck said she would refer me for “peace of mind” for an ultrasound.

Upon reading my notes, I realised it says groin ultrasound…. No mention of my neck lumps at all in the notes even though she did agree, to my face, were swollen ….. ps. They are totally painless.

If I AM right and it is some sort of blood cancer/ other type of cancer…. Will an ultrasound on this one area be enough? Does this sound right to you? Or do you think I get back in touch re. lumps in neck as well? It doesn’t feel like it’s an urgent referral that’s going through either…. Does that feel right baring in mind I have more than one area with persistent swollen nodes?

Many thanks in advance

(Stressed) Syd x

[Emma_BloodCancerUK]

Hello @Syd

Apologies for the delayed reply. Thank you for your update.

Please know our community forum is always here to listen and help where we can and you don’t need to feel embarrassed or that you have wasted anyone’s time as that is not the case.

We are so sorry to hear that you had not been feeling great and can imagine it is frustrating to feel that symptoms are being dismissed as anxiety.

Lymphnodes can be swollen for a number of reasons such as infections, inflammatory responses or allergies and sensitivities. They can also go up or down for a number of weeks post an infection, even if you haven’t had symptoms of an infection yourself your body can still react to this. You can also get reactive lymphnodes which can cause raised lymphnodes for several weeks or even months.

It is a positive step that you are getting an ultrasound of your groin and hopefully this will provide some reassurance. I can imagine it is worrying if you feel there are additional areas still requiring a scan, perhaps you can contact your GP and ask if they are able to scan your neck in addition to your groin. However, they may have picked your groin if this is where the largest node is located as they would usually scan the area with the largest node. You could also try to discuss with the medical secretary about the appointment to see if additional areas is something they can complete if you feel this is causing you concern.

If there is a problem detected with lymphnodes during an ultrasound scan, this will often then lead to a referral for a biopsy of this node so that they can look at it in more detail.

We would recommend if you are concerned, to contact your GP to see if they are able to add other lymphnode sites onto your scan or perhaps provide some reassurance around why they have decided on the groin area. It may also be something you can mention to the team completing the ultrasound scan.

Keep us updated & take care,

Emma (Support Services Nurse)