Hi I have found this site after having another pointless doctors telephone appointment. I’ve struggled lately I have been diagnosed with psoriatic arthritis and fybromyagia.
I am only in my 30s and have 3 young daughters and thought maybe sharing my story with similar people might help me cope with my new life.
One day back in March I woke up with a headache and pins and needles in both of my hands I pushed through with my morning and did my school runs and went to work, did more school runs and took my 3 girls to their after school clubs. By the evening I felt like I was coming down with the flu. I woke up in the night and neither of my hands would open and close fully and they were swollen.
In the morning I went to A&E and had a CAT scan and I was told I probably had an allergic reaction and was given steroids and anti histamines and to come back in 2 days if there was no change.
2 days later I returned and the doctor now thought I had a rhymatoid problem and told me to contact my GP to be referred.
Luckily I had private health care and saw a rhymatologist a week later, by then I was suffering with insomnia, lack of appetite, fatigue and cramps in my stomach, he referred me to a neurologist and said I needed x rays and ultra scans. 2 days before the scans were going to take place they were stopped by Covid-19.
I saw the neurologist and had an MRI scan which luckily ruled out MS.
During this time I was given 4 3 week courses of steroids- when I was on those I felt a lot better!
Eventually I spoke to my rhymatologist and was put on Amitriptalin and then sulphazalazine.
I have now had a bone scan and xrays which has come back ok. But my calcium levels are low, even though I am now taking calcium tablets.
I speak to a nurse from the hospital once a month and have fortnightly blood tests. But nobody really knows what to do with me. I am absolutely exhausted I sleep maybe 3 hours a night and feel like I have lost my life. I was a really busy social person. And now I’m struggling with constant headaches- I’ve been told the nerves behind my eye are inflamed cause Ing headaches and pain and my mainly hands 6 months on still don’t work- I can’t do basic things like squeeze toothpaste, open bottles and doors. But my back, neck and knee like to join in sometimes.
I feel a bit forgotten and don’t just want to moan when I speak to people but I feel like I am grieving for the person I was. I have tried every step of the way to be positive and I have always managed to pick myself up previously but I have really struggled this last week with the pain.
If anyone has any advise I’d be grateful