so worried?

Question

hi everybody, thank you for taking the time to read this, im a 34 year old woman, mother of 4, my youngest is 8 weeks old. problem started 2 years ago i woke one morning feeling really unwell and have never felt the same since, symptoms was, swollen glands, muscle weakness and spacey feeling, wnet to doc they said virus, few weeks later all lymph nodes in body were swollen, went for scan on my spleen . nothing looked fine, 2 months after that went to a blood doctor t he said it was due to an over-active thyroid gland..which do sent need to be medicated yet, all the way thru my last pregnancy i felt unwell swollen gland ect, 2 hard fixed ones under both ears quiet big like the size of ping pong balls...doctors say i have reactive nodes....please help i think im dying of cancer, oh and 2 years ago i had really bad back pain doc said it is muscle pain but i thought it was coming from my lungs ..but that has gone now and maybe every few months il get a pain there. if it was cancer would i be dead already? r would they have noticed it when i gave birth, i hope somebody has answers, this is taking away all the enjpyment of my new baby....thank u again

Tinabudde · Accepted Answer

Hi fifi, 

Has anyone in your family ever had swelling?  Cancer should have shown up in the scans and bloodwork you had.  An over active thyroid shouldn't cause the glands to be swollen in your back, maybe in your neck if you had nodules on the thyroid that would inhibit normal lymph flow.  What specific results came back in your bloodwork? The nodes under your ears are waterwheels and one of the largest node areas in the body.  From there the clavicle (collarbone area), axilla (underarms), iliac (near belly button) and inguinals (groin area crease of legs) are more of the larger nodes in the body for fluid to accumulate.  Did your ankles swell during pregnancy?  Has anyone ever mentioned lymphedema to you?  

Sometimes pregnancy with the extension of the abdomen as the baby grows and the weigh you put on can cause alot of pressure on the lymph system from the inguinals and iliac nodes and cause lymphedema to surface.  Lymphedema is not always from cancer, you can be born with less lymph nodes or some that are damaged and it does not show up until something triggers it and the stress on those nodes during pregnancy could do it.  I have had alot of women join my support group asking what happened as when they were pregnant suddenly lymphedema surfaced.  Primary lymphedema is the one that means you are born with less nodes or a malformation in the nodes or damaged nodes.  It does mean it will show up when you are little, it can surface from a trigger later in life.  I was born with less nodes and I was fine until cancer hit me we had thought the cancer caused the lymphedema so I had secondary lymphedema but the truth be told I was a primary lymphedema patient with secondary triggers which was the cancer.  It can be complicated.

There is a therapy called combined decongestive therapy that is performed by certified lymphedema therapists where they work on getting the body and nodes and lymph system moving and under control.  It feels like a massage and the results are miraculous.  

The first thing you need to do though is get more tests to find be sure there is nothing else wrong, I would suggest a complete blood work, urine test to check for diabetes, add in organ function tests in the bloodwork, hormone tests, and another look at the thyroid to check for nodules that could cause the node problem in the neck.  I would also ask if you could be tested for allergies, it could be some product you are using that can cause the nodes to react.  I would also ask for lupus tests, a fibromyalgia evaluation.  

Those neck nodes hurt, I have lymphedema in my neck and the nodes get pretty nasty, mine is neck, face, chest, right arm and left leg.  Sometimes the back swells too and the fluid can go to the lungs too.  

You need a better answer than reactive lymph nodes. Basically reactive lymph nodes means they are fighting something, they are reacting to foreign invaders such as infection, virus, something wrong in the body or lymphedema, the accumulation of fluid, or allergies. The thing is you need to know why there is a problem.  Certain diseases and conditions can cause swelling too such as heart issues, organ issues, ect.  

Could you have been bitten by any insects?  Could there have been a mosquito or tick bite?  Testing for lyme disease and/or mosquito diseases might be a good idea, also ask your doctor about lymphedema.   I would really express alot of concern about the neck nodes, I would also ask for a MRI of the neck to be sure that nothing is out of place such as a herniated disk, and push come to shove, a biopsy of node might not be a bad idea, there are other conditions where excess tissue grows in the body such as sarcoidiosis, that could cause swelling.

I'm just tossing out ideas for you here, things have to be ruled out so you get an accurate diagnosis.  Two years is a long time to be hurting and not feeling good.

Let me know how you make out and what any test results you have done are.

Tina

fifi445 · Answer

Thank you tina,
I haven't seen a doctor for a while about the nodes but im going to book one soon, frightened myself out of it, just dont like the ones on my back as they seem to be causing pain, but i read that it could be from giving birth,
never being checked for autoimmune problems i dont think or lupus, but i have seen a  Hematoligist  doctor ( blood doctor ) he thought a storage problem of iorn 1st but everything showed up fine,
just dont understand why the 1s on my neck r so big and hard, could they just be infected? 

im sorry to keep asking you questions but you seem very knowledgeable .

thanks again

Tinabudde · Answer

Hi fifi, you probably had alot of blood work during your pregnancy so if there was some sort of cancer they would have caught it by now, it wouldn't be a mystery as to why the nodes are swollen.  Your count isn't horribly high to think of lymphoma.  Have you had fevers or anything?  Ever been tested for lupus or any autoimmune diseases?  I have lupus and I also have lymphedema as well but my count is high, and also I have rubbery marble size lymph nodes.  If it was cancer after 2 years there would be much more symptoms.  What does the doctor say? When was the last visit?

fifi445 · Answer

Thank you so much for answering my question, i had a little swelling in my legs during pregnancy, i think just pregnancy related.

the lymph nodes most annoying are the 1s under my ears there solid and dont move, im sure they are lymph nodes and not stones, doc ran test quiet a while ago and nothing showed up i think just normal blood work, he said i dident have cat scratch disease, but had a high whilte blood count just over the average ,

then during my pregnancy the blood count was normal then just kept getting higher the last 1 was 22..,
i want to have the nodes biopsied but im just so scared its going to turn out to be cancer and they tell me i have so many months left to live!!!!! i also suffer from a terrible anxiety problem which does not help the situation, the back ones near my spine to the left have only become a problem since i had the baby, the rest have being there over 2 years , i think the 1s on my neck are growing really slowly i think, i poke them every bloody day...

do you think if it was cancer i would be really ill by now??

thank you so much for taking the time to read and reply to my posts, 

oh and it is possible i could have being bit but i live in the uk and dont no if the bite would of carried a disease????

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