Hi, I am new to this forum, my name is Sarah, I was diagnosed with Fibromyalgia back in December 2015, and was told I had most likely been suffering from it for the past 22 yrs, which is how long I had been suffering with chronic pain through out my body, but mainly in my legs and back, with my flare ups gradually moving all over my body.
Recently I had a very bad flare up that affected my eyes, which I had never had before and I was told it was very unusual, initially I was getting no joy with my GP’s and so altered my pain meds the best I could myself. I also booked myslef in at the opticians whilst I was waiting to see my GP, whilst waiting for these appointments to come round my flare up got gradually worse as the days went on, they were flickering and twitching all the tim I was getting double vision, blurred vision, and at two points my right eye closed for several hours and wouldnt open, for someone who has never had any eye problems this was very very scary.
I eventually saw the optician on Friday who spent 40 minutes testing my eyes, which ended with me having a blinding headache and my eyes felt like they were burning. He told me that the flare up had damaged the muscles around my eyes and that it had actually moved the eyes axsis and so I would need glasses with prism 50% tinted lenses permanently. I took this report back to my GP and told him everything and explained the loss of ues of my right eye for several hours on two different days and the fact that the flare up seemed to be getting worse not better.
After doing many more tests, he said he was going to book me in with an eye specialist, and also get me into see a nuerologist and rhumatologist urgently as he believes I have MS as well as my fibromyalgia and that this is why my flare up are so aggressive and why my disabilities are getting so much worse so quickly.
Could anyone advise me as to whether what my GP said could be true please?
As you can imagine myself and my family are worried sick as to what the next step will be for me, I am already having to use my wheelchair alot more than I like, and I know that my memory isn’t as good as it used to be even though I am only 35.
Any advise please
Sarah x
Hi Sarah any vision problems with MS are usually down to Optical Neuritis. My first symptom was blindness in both eyes, and then ongoing pain when my eye moved and vision colour perception loss.
You need to have a VEP test really and MRI which should be the next steps. There is sadly a process to diagnosing MS. Vision problems are not always down to MS though there are other things that can cause problems.
I am assuming your GP is now sending you to neurology and you will get an appointment fairly quickly usually. Then its explaining it all to the neurologist who will then decide how they will deal with it. You could or should have extensive neuro exams as well. I did on my first appointment and he knew straight away he was dealing with a neurology issue even though 10 years down the line i finally got a diagnosis last night actually.
So now you wait for your appointment and your journey begin. It could be MS but it could be anything too. Good luck. xx
Hi sorry I haven’t been about, I have been struggling with my conditions getting progressively worse recently, My friend was Diagnosed with MS when she was 18 and has been helping me through it all, she has most definetly been my rock recently, I am now waiting for an appointment for a brain MRI and possible lumber puncture as well as waiting to see a neurologist, I know it is a long waiting game as I am still waiting to see the Rheumatologist for my fibromyalgia.
I am also trying to work out if it is possible to have both deseases, or is it more likely to have one rather than the other?
I am trying to come to terms with the fact that I may well have an answer to my questions finally and it’s only taken me 22yrs. I know that whether it is FMS or MS I will end up in my wheelchair for the rest of mylife as my body is just not coping with the constant and chronic pain and nerve problems I am struggling with on a daily basis.
So glad you finally got your diagnosis and that you can now move on with your life and get the treatment your need. I hope it doesn’t take another 10 yrs for my diagnosis, I don’t think I could cope with that.
I am currently waiting to have my dog trained up by the amazing Charity Dog Aid to become my Assistance Dog to help me around the house and when I am out in my wheelchair and my family are either out at work or in school. She is already a big help, but to be qualified to help me and be registered to be abe to go everywhere with me will make life much eaiser.
Any extra advice or tips on coping with my flare ups would be very much appreciated.
thank you
Sarah x