Here’s my story so far...

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 and pain and my hands 6 months on still don’t work- I can’t do basic things like squeeze toothpaste, open bottles and doors.
I feel 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

Hi, Laurem, and welcome! I have ankylosing spondylitis along with fibromyalgia. Ankylosing spondylitis and psoriatic arthritis are in the same family of illnesses. I suffered for years because I was blaming all my back pain on fibro. Then, eight years ago I found out I had ankylosing spondylitis too and that was causing a lot of my back pain.

I did some searching to see what could help with all the pain. I got so I could barely walk and when I did walk I needed two canes. I now take ibuprofen with food, vitamin D3, magnesium malate, Tylenol, and a muscle relaxer called Robaxin (methocarbamol) that made a significant difference in my pain! My pain levels are way down now and I can walk just fine. I’m sorry I didn’t know what I was dealing with years ago.

So it’s great that you DO know what you are dealing with and can face it head on. You might see if your PC doctor or rheumatologist will prescribe methocarbamol to see if it gives you any relief. I had taken it years ago and the first two tablets put me to sleep for a couple of hours but anything after that didn’t affect me at all. No side effects. So when I started taking these again I only took one tablet six times a day. That’s half the amount and it not only worked but it also didn’t put me to sleep with the first dose! I’m clear-headed and can drive and do everything I want to with no side effects for me.

As the days passed and the methocarbamol started working, I took less. I now only have to take ibuprofen and one methocarbamol twice a day...before breakfast and before dinner! Now that’s amazing for me.

The beauty of the methocarbamol is that it’s also a scored tablet so you can cut it I. Half. This way you can find the exact dose that works best for you and you could need less and less.

This is just a thought but I wanted to let you know there might be something that will give you additional help with your pain. The other supplements I mentioned also help reduce pain too.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there.

I’m looking forward to getting to know you. Don’t hesitate to ask questions because we are here to help you. I’ve had out of town company so that’s why I’m so late in responding. I hope to hear more from you soon.

Sherrine