Lupus Community
1.43k Members
Avatar universal

No answers and getting frustrated

Symptoms since surgery 12 weeks ago and been told I have had glandualr fever in the last six motnhs but I had no idea as I have not felt unwell for 12 months prior to surgery.
• Fatigue, impaired memory and concentration, jumbling up words, getting them in the wrong order or being unable to remember words.
• Insomnia, frequent waking during the night and unable to go back to sleep for some hours, waking up more tired than before I slept, dizziness, imbalance, headaches and migraines.
• Breathlessness with or without movement, which can be good one day and terrible the next. Pain when taking a deep breath.
• Joint pain; feeling of tightness and stiffness, with or without swelling, mostly in my elbows, wrists, fingers, knees, hips and neck/shoulders. Pain is worse in the morning or after sitting for any period of time. Excruciating pains in my feet especially when I walk; leg and foot cramps.
• Carpal Tunnel symptoms have increased in intensity and I find my arms are more painful during the day and going numb for longer periods and more frequently overnight.
• Pains and pressure in chest, which radiates up to my left shoulder and left arm, sometimes my neck and in to my throat if I have a particularly painful episode or my heart skips heartbeats (palpitations). Waking from a deep sleep with a rapidly beating heart and a feeling like ‘something’ is going to happen.
• Feeling of swollen lump in throat, which can be painful for a few days and then not. Hoarse, husky voice
• Feeling the need to drink more water as my throat is quite dry
• Raynauds symptoms have increased in intensity.
• Feelings like all my nerve endings are tingling, shivering or someone has walked over my grave, in muscles in differing parts of my body at random times of the day and night, and general weakness especially in my lower back.
• Tremors and shaking with or without exertion.
• Numbness and tingling of left side of face.
• Gastro-intestinal: Gas, bloating, occasionally nausea, reflux, indigestion
• Urine: Has an odd almost sweet odour.
• Hair, Skin:
• Very dry skin with occasional intense itching in patches on arms and legs.
• Alarming hair loss.
• My temp has been quite low usually around 34-35, but I feel feverish when it gets up to 36 and above;
• Heightened sensitivity to:
• Lights which in bright light either artificial or outside trigger migraines;
• sounds
• odours or chemicals which trigger more frequent migraines;
• Random symptoms:
• increase in reactions to food, chemicals, pollens, dust;
• weight gain;
• eyes feel swollen and are dry with itching or burning and occasionally blurred vision;
• sugar craving.

9 Responses
2143641 tn?1396681743
are you sure you didn't have any problem before surgery?

what type of surgery and why it was performed?

did you have blood tests prior to surgery and after, recently?

why did they say you had glandular fever, Mononucleosis?
Avatar universal
I had a hysterectomy, which instead of 2 hours turned in to 5 hours surgery and the most difficult operation the Dr had ever done in his career, Adverse drug reactions to antibiotics, I am allergic to penecillin and most sulfer based antibiotics, lungs collapsed, second surgery 3 days later because I ran a fever and they thought I had complications but it ended up I didn't; infected wound site that took 7 weeks to heal, more adverse drug reactions from an antibiotic I had taken safely previously; diagnosed with heart problems post surgery; enlarged liver etc with high LFT levels that are finally coming down, UTI, I have been a human pin cushion since the day after surgery and had every conceivable test there is which have produced random reslults like low iron a week after having good iron levels, low B12 after being fine the week before, high cholestoral after having consistently good levels, the only constant has been a high ESR level. One of the test results cam e back with the fact that I had had GF at some stage in the past 6 months???? News to me as I hadn't felt unwell since July last year. I had been feeling quite tired but I put that down to the gyny problems such as low iron levels etc.
Avatar universal
There is a good chance you have Australian Lyme Disease.  It is still emerging there and most doctors are completely unfamiliar with it.  I have it and I have had most of the same symptoms that you have.  With the gut issues you describe, you could also have Bartonella.  It is a coinfection also carried by ticks that makes the neuro and GI symptoms of Lyme worse.  

Big, stressful events like major surgery are known to make Lyme much worse. And if the infection was already widespread, various organs and systems in your body were probably already compromised before the surgery. Now, your body is having trouble recovering.

You'll want to go see Dr. Peter Mayne.  He has treated a couple hundred patients and published a paper on how Australians have a different presentation than North American and even European patients.  There is no arthritis so far with about 500 patients that he knows of.  The symptoms are more similar to a European species of Borrelia, but they don't know yet if the Australian version is that same one or a new one.  Most Lyme patients in Oz test negative on standard lab tests, making it important to get to a doctor with some experience in it.

These links might be helpful.


You are welcome on the Lyme forum!
2143641 tn?1396681743
I read of other women in this forum who had immunological problems and troubles of all sorts followed to hysterectomy.

were your blood tests all OK before surgery? ESR was normal?

I'm wondering why exactly they think you had GF and why they said 6 months specifically? which is prior to the operation.

why did you have hysterectomy and how were you feeling before?
Avatar universal
I have had the Lyme test and it came back negative. I have never had a tick bite so I don't think it is lyme disease, but thank you as I am starting to feel a bit like I am going mad at this point. My family is over me not being back on deck and I just don't seem to be getting any better. I am thinking an immunologist may be my next port of call.
Avatar universal
The Doc keeps telling me that some blood tests came back showing I had had GF in last 6 months.
I had hyster because quite frankly you only get 20 years as a life sentence I had 30 odd years of horror with terrible periods and pain etc and I had very large fibriods, so it all had to go! I had some tiredness in the last six months or so but as I said I put that down to blood loss and extremely low iron. I was diagnosed with osteoarthritis in my left knee last year adn bursitsis in my hips  in January. I have been allergic to antibiotics specifically penecillins, most of my life. I developed an allergy to shellfish about 7 years ago. One of my siblings has lupus and my mother has hypothyroidism. Most of the family has allergies, some life threatening so I am not suprised that I have allergies I would just like to figure out what is going on now and I would like to feel part way normal again. I realise that it takes a while to get oevr hyster but surely after 3 months I shouldn't be getting worse adn these are not really post hyster symptoms.
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.