Hello all, this is my first post and I’m hoping for some comments on where people think I am with this condition and what I need to do as its all pretty scary and confusing atm. I’ve just been diagnosed with PMR in the last two months and it looks a lot like it’s been a big factor in numerous health issues I’ve been having for two years at least they just haven’t picked up on it through lockdown.
I had some sort of virus just before the first lockdown which turned to pneumonia. I think from symptoms it was likely COVID. I recovered slowly but in the following months started to have really high Blood pressure issues and was diagnosed with hypertension. Its now controlled with 3 meds and seems to be managed.
Around the same time I started having a huge amount of pain in both shoulders and neck. The doctor thought it was a frozen shoulder but it started getting me really down as I couldn’t sleep and it was so painful.
I wouldn’t be beaten and started an exercise routine where I cycled three or four miles or walked at 6am every morning before work. Although it didn’t stop the pain it seemed to get things moving and ease it a bit.
Shortly after that both hips started causing me pain. When my husband had to help me out of bed three mornings in a row I went to the doctors and really had to emphasise that this was having a huge impact on my life. I got the PMR diagnosis and was put on 15mg of Pred . The pain went down almost overnight and became manageable for the first time in months and I got most of the movement back as the stiffness was a lot better too.
I’m only 48 I have two children at home one is autistic and I work three jobs and whatever this thing was, was making life impossible. I got so depressed.
At the same time my optician picked up an issue in my eyes as I had gone complaining that sometimes things got really blurry. I work a lot on computers so I thought it was a natural issue but the tests they did meant they referred me to the eye hospital (Still waiting for that appointment lol)
There were lots of weird things that the doctor attributed to blood pressure that started to worry me. I had a really odd feeling on my forehead that was like a cross between numbness and tingling or tightness and the most awful headaches were getting more regular and hurt more. My ears were odd feeling like I was underwater or they needed to pop.
I got the PMR diagnosis and the doctor said if you get headaches you really need to get medical help so I said honestly I’d had headaches for over two years and he just brushed over it.
Through the night a few days ago the headache got really bad, the tingling on my forehead was awful and then when I woke my left eye was so blurred I could see light and colours but nothing else.
I ended up at the local hospital and I tried to explain about the PMR I really had to insist they looked up PMR and the possible GCA complications and they tried to say I’d suddenly got migraine. When I insisted she took it to a consultant who still didn’t say anything about GCA but said PMR could cause headaches and whacked me on 40mg of steroids and said they would contact my GP.
Can anyone shed any light on this the sight has come back in my eye the headaches and tightness are still really bad. Is it likely to be GCA, do I need to be pushing my symptoms again. Should I be exercising on a morning, Does the vision thing mean I’m going to lose my sight. Its really scary and when I read the internet stuff it just gets scarier was hoping some of the people who are dealing with this condition might help me work out the route I need to take. Thanks so much and sorry for the essay!!