Please help - I have felt ill for 3 months and the doctor has no idea

[lucy2009]

Can anyone please help as I'm very worried

I'm 36 year-old female, previously healthy who has been taking preventative antibiotics (for recurrent UTIs) for 6 months.

About 3 months ago I started getting sharp stabbing pains in my neck. Shortly afterwards the glands in my neck became swollen and I had frequent sore throats and fatigue. I then developed what I can describe as ear pain/ear fullness which makes me feel slightly deaf. I went to see my GP who thought it might be an infection in the eustachian tube and prescribed antibiotics. I did not get any better and in fact started feeling slightly worse.
I went back to see my GP and he said it might be glandular fever so sent me off for a few blood tests. All came back fine apart from slight anaemia and advised me to take some iron tablets.

A few weeks later I had awful pains at the back of my neck/head which referred needle-like pains all over my head. I went to casualty but as I didn't have a temperature or unusual blood pressure sent me home with painkillers.
The headaches/neck pains persisted and I then developed burning pains in my elbows that has left me with aching heavy arms. I also have this in my knees (heavy legs when walking up stairs).

I went back to my GP (who is baffled by my symptoms and is now tired of seeing me) who had no idea who to refer me to for further diagnostic tests - an ENT? neurologist? rheumatologist? orthopedics? He referred me to a CFS unit for which I am on the waiting list but it doesn't feel right.

I'm seeing a chiropractor to help relieve my symptoms but her opinion is that my nervous system is not working well.
My lymph glands in my neck are so swollen that I think this is causing ear pain and problems swallowing? They have been swollen for 3 months. I don't have a temperature or night sweats and am not really tired anymore. Could it be an autoimmune disease or lymphoma?

Can you help me please? I'd appreciate any advice you can give. Many thanks

[Dr. Kokil Mathur]

Hi

Please seek a second opinion if you can. Though the possibility is high that it could be CFS, it could be another problem too. Yes your specialist will advice more tests if need be.
Take care and keep me posted.

[lucy2009]

Thanks. I'm waiting for an appointment to come through - they said it might take a few weeks. Very recently I have had some breathlessness and internal pains - in my right ovary, stomach and spleen area. I seem to have fleeting but recurring pain all over. Would the CFS specialist do some more diagnostic tests such as an MRI?

[Dr. Kokil Mathur]

Hi

Thanks for keeping me posted. Your GP probably suspects glandular fever and thus has referred you to a CFS specialist. Many a times glandular fever can result in chronic fatigue syndrome, hence we need to wait and see what the specialist suggests. Swollen lymph nodes can cause pain in arms but not in legs. Yes, swollen tender glands in the upper neck can cause a pain in the ear. While you wait for your appointment drink plenty of fluids, rest when you are tired and try and regain your energy. Deep breathing exercises too will help calm your nerves.

Lymphoma too can be another diagnosis. It is confirmed by X-rays, biopsies, CT scans and MRI. It is accompanied by weight loss in most cases. The lymph nodes are swollen but not tender.

Let us wait for your appointment. When is it? Please keep me posted.

[lucy2009]

Thank you very much for coming back to me so promptly. It means a lot when I am so worried. The blood test was a standard hospital 'glandular fever' test. My GP said that even if I had glandular fever unless I'd been tested in the first couple of weeks (which I wasn't) the test would be negative.

My GP says he can't authorise a CT/MRI and I'll have to wait to see the CFS specialist to see what he suggests. Do you think swollen tender glands can cause ear fullness/pain and affect the nerves in my arms and legs that are causing the pain? Do you think I could have something like lupus or lymphoma and would this come up in a blood test?

Thanks again for your help

[Dr. Kokil Mathur]

Hi

I understand that most of the tests have been done. Glandular fever is a good differential diagnosis to consider. Have you got the specific tests for EBV like monospot test (positive for infectious mononucleosis), Epstein-Barr virus antigen by immunofluorescence (positive for EBV) or  Epstein-Barr virus antibody titers to help distinguish acute infection from past infection with EBV done? These are more reliable than normal blood tests.

Another cause could be tuberculosis. Subacute meningitis too should be explored by lumbar puncture. Maybe a CT scan/MRI should also be done of the head and neck.  It is difficult to comment beyond this without examining. Please let me know if there is any thing else and do keep me posted.