Yuck. You poor thing; this brings back really, really horrible memories. I never had any hormonal issues until I had an unexpected pregnancy and then miscarriage aged 40. Six weeks later, I had terrible shooting pains in my arm/shoulder which moved into my back. Never made a connection between the two. I was very athletic and everyone assumed it was a sports injury.
After weeks on Codeine, and then Amitripyline (plus Vitamin D) I was sent to a spinal consultant who was convinced it was a trapped nerve. (I'd started to get tingling in my fingers and numbness by this point). X-ray and MRIs revealed nothing, and thus started a two year nightmare of this consultant to that one, physio and osteo treatment, blood tests etc etc. Even a brain scan. I was petrified. I did notice I occasionally got pain in my calves and ankles but was told it was impossible for the two to be connected.
The pain got so bad that the slightest sensation was agony, so I could no longer wear normal underwear or jewellery. Even the name badge I wear at work hurt my neck - it felt like it weighed 2 stone! After two months, I started tingling/shaking more strongly. A day later my first period in months arrived. GP said there was no connection.
Months later, my back had eased, then suddenly I was walking around a shop and I had terrible pain in my ankle - so bad, I couldn't put any weight on it. It was perfect an hour earlier! To cut a long story short, ankle socks made it worse (now know this was because it was water retention touching the nearby nerves) and the pain was eventually diagnosed as neurological, cause unknown. By this point I gave up sport altogether as it was too painful. I used to be able to touch my toes, palms down. By this stage I couldn't even do it with the tips of my fingers. Was very, very scared.
Fast forward a year and the severe, intense pain had gone, but the tingling and dizziness/weird feelings remained. I then started getting sudden random fatigue, the chills and nausea. Every time I had days of this, a period would emerge soon after (no pattern to it - around one every 12 weeks). By this stage I felt almost embarrassed to tell people how awful I felt. I was sure everyone thought I was a hypochondriac. MY GP at the time certainly did!
However, a sympathetic neurologist then sent me to an endocrinologist who finally diagnosed that I had a hormonal imbalance. Normal FSH but incredibly low estrogen. It was such a relief, strange though it sounds.
Started sequential hrt which definitely helped, but I still felt 'weird'. Joining this site and realising others had similar stories was a great help. With no hot flushes, dryness down below etc, I struggled to accept it was hormonal at first, until I read what others had experienced. The only problem with this hrt was that I still got hormonal fluctuations and this caused headaches/anxiety. Sometimes I think my own system kicked in and I was having too much of a sudden increase in estrogen. Eventually I switched to Qlaira (see my other thread) and things started to look up as it was controlling my hormones in a steadier way.
To this day, I wonder if I hadnt got pregnant, whether all this would have happened. Will never know.
Anyway, in response to your questions, firstly, I assume you've had 'other possibilities' checked?
For me, what worked temporarily was: Codeine (no other pain killer touched it); hot water bottles; sleeping flat on my back with arms at my side, palms up; wearing strapless bras and comfort grip socks; avoiding necklaces and bracelets; gentle stretching when I could handle it; pillow behind lower back when driving. Longer term, suppressing ovulation with the pill has helped (touch wood). What didnt work (for me - it may well work for others) was: ADs; high dose Vitamin D; exercise; physio; osteo; fish oils (though I still take them).
Best of luck, B x
